I've been here before. A brief trial of a medication, followed by confusing side effects and my doctor's orders to "discontinue the medication".
As I posted last week, I started a low dose of citalopram (generic Celexa, an SSRI) mainly to help with my Anxiety, and hopefully my Depression and Migraines as well. The first two days, the side effects were tolerable, but by the third dose, my body felt overwhelmed. I put a call into my doctor's office on Thursday morning to see if he thought I should wait out the side effects, and, not surprisingly, got a call back from his nurse telling me to discontinue the medication.
And now I feel myself plagued by self-doubt and "what ifs".
I know that any medication I try will have some side effects. I know that many side effects will improve with time. It's hard for me not to feel like I'm giving up on a medication when I've only taken four doses of it. Dr E told me it would take about six weeks to see if the citalopram would help me, and I know that it can take two to three months for a daily medication to kick in. So stopping after only four days seems like quitting.
Clearly, my body was sending me very strong signals that it did not like this medication. The side effects in question were those listed under the "call your doctor immediately if you experience these" category. (In the interest of not scaring off other patients who may be trying this medication, I'm not going to detail the side effects here, as this is a very effective medication for many people.) And obviously Dr E thought that the side effects were serious enough to outweigh any potential benefits.
But I still have that little voice in the back of my head, telling me that I should just suck it up, that everyone experiences side effects and I should stop complaining. That if I ever want to get better, I need to just push through it until it gets better. In the face of this negative self-talk, it's very difficult to maintain perspective on the situation. (And this kind of self-talk is a key characteristic of my Depression.)
Every time a medication is crossed off the list so clearly and quickly, it makes it that much more difficult to try the next one, as I try to push past the fears and anxiety about past side effects. Because I feel so sick all of the time, it's hard to push through the added sickness of side effects - and it seems massively unfair that I should have to do so. But really, what is fair about chronic illness?
So now I'm left marking time until the citalopram completely clears out of my system and my body has time to get back to its normal level of crummy. And I'm trying not to be too hard on myself in the meantime.
Be well,
MJ
Showing posts with label medications. Show all posts
Showing posts with label medications. Show all posts
Sunday, October 18, 2009
Friday, October 9, 2009
learning to ask for help
DF and I recently went on vacation to Charleston SC for a week, which marked the official start of our wedding planning. We had a great trip. The first half we spent with my mom and sister; after they left, we had three days to ourselves to play tourist. I actually felt fairly good during vacation. I still had the daily head pain from my Migraines and IIH, but I paced myself and practiced good self-care, and was able to enjoy our vacation - even if a lot of it was spent in the condo we stayed at.
When we came home last week, the real world seemed to crash back into place around us. All the stress we had been ignoring about unemployment, finances and everything else hit hard. I realized - on the plane ride home, in fact - how much my Anxiety has gotten out of control over the summer.
Like many Migraineurs, I struggle with a number of comorbid conditions: Migraines, IBS and mood disorders (namely Anxiety and Depression). I've struggled with bouts of Depression in the past, particularly during my third year of college when I first got sick. Even after my Migraines and IIH were successfully treated, the Depression stuck around for a long time.
It's no secret to me that this has been a difficult summer. DF and I have not been able to land "real" jobs after being laid off last November. Between our paychecks and unemployment checks, we're making ends meet and aren't in any immediate danger, but everything feels very precarious. My health has only just started to improve from the very low point of last year. I've been dealing with a triple whammy, in a sense, of my unemployment, DF's unemployment and my crummy health.
This summer has marked a vicious cycle of Anxiety-pain-Depression-Anxiety that I just cannot get out of. The Anxiety about all the life stresses feeds my pain, and the pain in turn feeds my Anxiety. While I'm having less pain overall (thanks to the acetazolamide for my IIH), I still have not had any break in my pain in several years, and I still have a long way to go to find an effective treatment regimen.
I saw Dr E for a follow-up appointment on October 1, the day after DF and I got home from vacation. As I sat in the waiting room writing down last minute questions, I wrote a note about my Anxiety. It was serendipitous that my appointment with Dr E was right after vacation, when I realized how much I've been struggling, so I was willing to bring up my concerns. Anxiety and Depression are hard things to talk about, even with a doctor whom I trust.
In fact, I have spoken with Dr E about this same issue in the past, which made it easier to bring up this time. When I saw him in February, we discussed my Anxiety as related to unemployment; at that point neither DF nor I had any job prospects on the horizon. Dr E prescribed a low dose of citalopram (Celexa), though I never started taking it since I did find a job not long after my appointment.
But now I find myself stuck in the same position. And it's just tiring to feel all this emotional upheaval on top of my regular physical symptoms. I feel so frustrated by the constant pain, the daily dizziness and nausea, that I often just want to scream. The longer all of this stretches on, the harder it becomes to cope.
Dr E wrote me a new scrip for the citalopram, leaving it up to me to fill it any time after the appointment if I felt ready for it. (He understands and respects my reluctance to try new medications after a series of really bad reactions.) I decided earlier this week to get it filled, and will be starting it next week. And I'm nervous about it.
It's so difficult to ask for help because it can be so difficult to admit to myself that I need help. I can't think myself out of my mood disruptions any more than I can think myself out of my Migraines. While I can do relaxation exercises and other non-drug therapies to mitigate my symptoms, they will not change the underlying chemical and neurological problems. So Monday evening, I will take my first dose of citalopram and hope for the best.
I'm learning, once again, how to ask for help when I need it, and trying not to feel like a failure for needing it.
Be well,
MJ
When we came home last week, the real world seemed to crash back into place around us. All the stress we had been ignoring about unemployment, finances and everything else hit hard. I realized - on the plane ride home, in fact - how much my Anxiety has gotten out of control over the summer.
Like many Migraineurs, I struggle with a number of comorbid conditions: Migraines, IBS and mood disorders (namely Anxiety and Depression). I've struggled with bouts of Depression in the past, particularly during my third year of college when I first got sick. Even after my Migraines and IIH were successfully treated, the Depression stuck around for a long time.
It's no secret to me that this has been a difficult summer. DF and I have not been able to land "real" jobs after being laid off last November. Between our paychecks and unemployment checks, we're making ends meet and aren't in any immediate danger, but everything feels very precarious. My health has only just started to improve from the very low point of last year. I've been dealing with a triple whammy, in a sense, of my unemployment, DF's unemployment and my crummy health.
This summer has marked a vicious cycle of Anxiety-pain-Depression-Anxiety that I just cannot get out of. The Anxiety about all the life stresses feeds my pain, and the pain in turn feeds my Anxiety. While I'm having less pain overall (thanks to the acetazolamide for my IIH), I still have not had any break in my pain in several years, and I still have a long way to go to find an effective treatment regimen.
I saw Dr E for a follow-up appointment on October 1, the day after DF and I got home from vacation. As I sat in the waiting room writing down last minute questions, I wrote a note about my Anxiety. It was serendipitous that my appointment with Dr E was right after vacation, when I realized how much I've been struggling, so I was willing to bring up my concerns. Anxiety and Depression are hard things to talk about, even with a doctor whom I trust.
In fact, I have spoken with Dr E about this same issue in the past, which made it easier to bring up this time. When I saw him in February, we discussed my Anxiety as related to unemployment; at that point neither DF nor I had any job prospects on the horizon. Dr E prescribed a low dose of citalopram (Celexa), though I never started taking it since I did find a job not long after my appointment.
But now I find myself stuck in the same position. And it's just tiring to feel all this emotional upheaval on top of my regular physical symptoms. I feel so frustrated by the constant pain, the daily dizziness and nausea, that I often just want to scream. The longer all of this stretches on, the harder it becomes to cope.
Dr E wrote me a new scrip for the citalopram, leaving it up to me to fill it any time after the appointment if I felt ready for it. (He understands and respects my reluctance to try new medications after a series of really bad reactions.) I decided earlier this week to get it filled, and will be starting it next week. And I'm nervous about it.
It's so difficult to ask for help because it can be so difficult to admit to myself that I need help. I can't think myself out of my mood disruptions any more than I can think myself out of my Migraines. While I can do relaxation exercises and other non-drug therapies to mitigate my symptoms, they will not change the underlying chemical and neurological problems. So Monday evening, I will take my first dose of citalopram and hope for the best.
I'm learning, once again, how to ask for help when I need it, and trying not to feel like a failure for needing it.
Be well,
MJ
Tuesday, September 22, 2009
two important blog posts
I'll admit that I've fallen out of the blogging habit a bit this year, and once I'm back from vacation at the beginning of October, I hope to start posting weekly updates again. One of the toughest parts of blogging about a chronic illness is that chronic illness often gets in the way. My Migraines in particular often limit the time I can spend on the computer. I did want to take a few minutes today and post links to two very important blog posts and ask that you check them out.
The first is an excellent interview of Cindy McCain by Teri Robert. Cindy recently came out of the Migraine closet and has become an advocate for all Migraineurs. She recently appeared on the Today show, and Teri had the chance to interview her as well.
Teri's interview: Interview with Cindy McCain, Migraine Sufferer, Advocate
The second is a petition put together by the American Pain Foundation asking the FDA to consider educating consumers about the risks of acetaminophen, rather than strict regulation. Diana Lee wrote an excellent blog post about the petition. If you agree with the APF's stance, please take a minute to sign the petition before this Sunday, September 27.
Diana's post: FDA Ban on Prescription Pain Meds: Take Action Now
APF petition: Acetaminophen: Educate, Do Not Regulate
Be well,
MJ
The first is an excellent interview of Cindy McCain by Teri Robert. Cindy recently came out of the Migraine closet and has become an advocate for all Migraineurs. She recently appeared on the Today show, and Teri had the chance to interview her as well.
Teri's interview: Interview with Cindy McCain, Migraine Sufferer, Advocate
The second is a petition put together by the American Pain Foundation asking the FDA to consider educating consumers about the risks of acetaminophen, rather than strict regulation. Diana Lee wrote an excellent blog post about the petition. If you agree with the APF's stance, please take a minute to sign the petition before this Sunday, September 27.
Diana's post: FDA Ban on Prescription Pain Meds: Take Action Now
APF petition: Acetaminophen: Educate, Do Not Regulate
Be well,
MJ
Saturday, September 12, 2009
30 things about my invisible illness you may not know
The wonderful Teri Robert of MyMigraineConnection had recently posted this on her blog, From Teri's Keyboard, and asked me to participate.
I'll quote Teri's post here to better explain this meme:
Without further ado...
1. The illness I live with is: Migraine disease (including Transformed Migraine, Chronic Migraine, Migraine Without Aura and Acephalgic Migraine), Idiopathic Intracranial Hypertension, Irritable Bowel Syndrome, along with gluten intolerance, many food sensitivities, seasonal/environmental allergies and Asthma. I also struggle with depression and anxiety. For the purposes of this meme, I will mainly focus on the head pain issues.
2. I was diagnosed with it in the year: 2003 (Migraine) & 2009 (IIH).
3. But I had symptoms since: at least my early teen years.
4. The biggest adjustment I’ve had to make is: slowing down and learning to modify my goals (both short- and long-term). I've had to learn just what is realistic with my current limitations.
5. Most people assume: that I'm healthy, especially because of my recent weight loss (75 pounds since January 2008). It's hard for them to believe that I'm sick when I look so healthy on the outside.
6. The hardest part about mornings is: getting going. Mornings are the toughest part of my day and the time I generally feel the worst. Pushing through that initial crappiness can be very hard.
7. My favorite medical TV show is: House and Royal Pains.
8. A gadget I couldn’t live without is: my laptop. My cell phone is a close second.
9. The hardest part about nights is: going to bed on time. I'm a night owl by nature, but my Migraine disease requires that I get the right amount of sleep every night. It's difficult to make myself go to bed sometimes, and occasional insomnia and/or anxiety don't help with good sleep hygiene.
10. Each day I take 19 pills & vitamins.
11. Regarding alternative treatments I: currently do massage therapy and relaxation exercises. In the past I've done acupuncture and biofeedback. This fall I plan to try mindfulness meditation, as well as get back into Nia dance and maybe try tai chi/qigong.
12. If I had to choose between an invisible illness or visible I would choose: visible. It's unspeakably hard to feel like I have to prove to others that I'm sick.
13. Regarding working and career: I was laid off from my full-time job in an architecture firm in November 2008. In March of this year, I began working part-time as a hair salon receptionist, and this week I've begun a second job as a medical receptionist, also part-time. I'm not sure if I'm healthy enough to go back to full-time work, especially in an office environment. DF and I have broad future plans to start our own business, but that's quite a ways down the road. I feel very frustrated that I've had to put many career plans on hold (like licensing exams and graduate school) because of my health.
14. People would be surprised to know: that I am in some type of pain every moment of every day. The pain never, ever goes away.
15. The hardest thing to accept about my new reality has been: limitations. I'm an overachiever by nature, someone who pushes through "anything" to accomplish my goals. I've now learned that I have to respect the limitations of my health.
16. Something I never thought I could do with my illness that I did was: blog about it, and reach out to the vibrant online chronic illness community.
17. The commercials about my illness: maddening. I tell DF that Excedrin ads are more likely to trigger a Migraine than the drug would be to stop one.
18. Something I really miss doing since I was diagnosed is: spending time out of the house with my friends.
19. It was really hard to have to give up: pushing myself "no matter what". I've had to learn to stop when my body says so.
20. A new hobby I have taken up since my diagnosis is: knitting/crochet.
21. If I could have one day of feeling normal again I would: have a picnic on a sailboat with DF, without having to worry about the sun, myriad potential triggers or my proximity to a bathroom.
22. My illness has taught me: to say no.
23. Want to know a secret? One thing people say that gets under my skin is: "I've heard that __ fixes Migraines, you should try it." Trust me, I already have. I know you may mean well, but I would rather do without the unsolicited advice.
24. But I love it when people: show compassion or honestly want to know more about my illnesses.
25. My favorite motto, scripture, quote that gets me through tough times is: "There are times in life when we can nurture our talents and watch them grow. But there are also times in life when we can do no more than protect them to get through the day-to-day, until we have the opportunity for nurturing again." (paraphrased) from the former honors director at my alma mater. He and I were discussing my worries about the effects of my health on my semester's work.
26. When someone is diagnosed I’d like to tell them: the most important thing you can do as a patient is educate yourself and ask as many questions as you need to understand.
27. Something that has surprised me about living with an illness is: how much space it takes up in my life, and how every minor decision becomes a major choice.
28. The nicest thing someone did for me when I wasn’t feeling well was: when DF took care of me after my lumbar puncture when I had a spinal headache. In addition to everything he normally does for me, he went so far as to empty a trash can I had vomited in when I couldn't walk to the toilet.
29. I’m involved with Invisible Illness Week because: the only way to increase awareness of our illnesses is to speak out.
30. The fact that you read this list makes me feel: that one day, there will be more understanding of the struggles that chronic illness patients face.
If you blog, or even if you just Facebook, I ask that you please consider posting this meme with your own answers.
Be well,
MJ
I'll quote Teri's post here to better explain this meme:
Anyone who has Migraine disease or another headache disorder knows what it's like to live with an invisible illness. People can't see our illness. There are no outward signs. No physical scars, canes, wheel chairs, or any of the other outward signs that can alert people that a person is living with an illness.
Invisible illnesses are easy for "healthy" people to ignore. Unfortunately, so are the difficulties of those who live with these diseases. This adds to the burden of disease and makes lives even more difficult.
Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know.
Without further ado...
1. The illness I live with is: Migraine disease (including Transformed Migraine, Chronic Migraine, Migraine Without Aura and Acephalgic Migraine), Idiopathic Intracranial Hypertension, Irritable Bowel Syndrome, along with gluten intolerance, many food sensitivities, seasonal/environmental allergies and Asthma. I also struggle with depression and anxiety. For the purposes of this meme, I will mainly focus on the head pain issues.
2. I was diagnosed with it in the year: 2003 (Migraine) & 2009 (IIH).
3. But I had symptoms since: at least my early teen years.
4. The biggest adjustment I’ve had to make is: slowing down and learning to modify my goals (both short- and long-term). I've had to learn just what is realistic with my current limitations.
5. Most people assume: that I'm healthy, especially because of my recent weight loss (75 pounds since January 2008). It's hard for them to believe that I'm sick when I look so healthy on the outside.
6. The hardest part about mornings is: getting going. Mornings are the toughest part of my day and the time I generally feel the worst. Pushing through that initial crappiness can be very hard.
7. My favorite medical TV show is: House and Royal Pains.
8. A gadget I couldn’t live without is: my laptop. My cell phone is a close second.
9. The hardest part about nights is: going to bed on time. I'm a night owl by nature, but my Migraine disease requires that I get the right amount of sleep every night. It's difficult to make myself go to bed sometimes, and occasional insomnia and/or anxiety don't help with good sleep hygiene.
10. Each day I take 19 pills & vitamins.
11. Regarding alternative treatments I: currently do massage therapy and relaxation exercises. In the past I've done acupuncture and biofeedback. This fall I plan to try mindfulness meditation, as well as get back into Nia dance and maybe try tai chi/qigong.
12. If I had to choose between an invisible illness or visible I would choose: visible. It's unspeakably hard to feel like I have to prove to others that I'm sick.
13. Regarding working and career: I was laid off from my full-time job in an architecture firm in November 2008. In March of this year, I began working part-time as a hair salon receptionist, and this week I've begun a second job as a medical receptionist, also part-time. I'm not sure if I'm healthy enough to go back to full-time work, especially in an office environment. DF and I have broad future plans to start our own business, but that's quite a ways down the road. I feel very frustrated that I've had to put many career plans on hold (like licensing exams and graduate school) because of my health.
14. People would be surprised to know: that I am in some type of pain every moment of every day. The pain never, ever goes away.
15. The hardest thing to accept about my new reality has been: limitations. I'm an overachiever by nature, someone who pushes through "anything" to accomplish my goals. I've now learned that I have to respect the limitations of my health.
16. Something I never thought I could do with my illness that I did was: blog about it, and reach out to the vibrant online chronic illness community.
17. The commercials about my illness: maddening. I tell DF that Excedrin ads are more likely to trigger a Migraine than the drug would be to stop one.
18. Something I really miss doing since I was diagnosed is: spending time out of the house with my friends.
19. It was really hard to have to give up: pushing myself "no matter what". I've had to learn to stop when my body says so.
20. A new hobby I have taken up since my diagnosis is: knitting/crochet.
21. If I could have one day of feeling normal again I would: have a picnic on a sailboat with DF, without having to worry about the sun, myriad potential triggers or my proximity to a bathroom.
22. My illness has taught me: to say no.
23. Want to know a secret? One thing people say that gets under my skin is: "I've heard that __ fixes Migraines, you should try it." Trust me, I already have. I know you may mean well, but I would rather do without the unsolicited advice.
24. But I love it when people: show compassion or honestly want to know more about my illnesses.
25. My favorite motto, scripture, quote that gets me through tough times is: "There are times in life when we can nurture our talents and watch them grow. But there are also times in life when we can do no more than protect them to get through the day-to-day, until we have the opportunity for nurturing again." (paraphrased) from the former honors director at my alma mater. He and I were discussing my worries about the effects of my health on my semester's work.
26. When someone is diagnosed I’d like to tell them: the most important thing you can do as a patient is educate yourself and ask as many questions as you need to understand.
27. Something that has surprised me about living with an illness is: how much space it takes up in my life, and how every minor decision becomes a major choice.
28. The nicest thing someone did for me when I wasn’t feeling well was: when DF took care of me after my lumbar puncture when I had a spinal headache. In addition to everything he normally does for me, he went so far as to empty a trash can I had vomited in when I couldn't walk to the toilet.
29. I’m involved with Invisible Illness Week because: the only way to increase awareness of our illnesses is to speak out.
30. The fact that you read this list makes me feel: that one day, there will be more understanding of the struggles that chronic illness patients face.
If you blog, or even if you just Facebook, I ask that you please consider posting this meme with your own answers.
Be well,
MJ
Monday, August 10, 2009
radio silence | part 1: another acronym, another diagnosis
Well, hello there, everyone. I'm hoping to get back into more regular updates, and in the meantime, I hope to catch you up a bit on what's been happening in my corner of the world.
When I saw Dr E in February, he prescribed a low dose of Celexa (citalopram) to help with the anxiety and depression I was dealing with because of life stressors (namely, unemployment) and my health. Celexa is also used as a Migraine preventive, so we were hoping it would help in the head pain arena, as well. I spent a few weeks trying to gather my courage enough to swallow that first pill, and in the meantime, found a part-time job, so I never did try it.
During my follow-up visit with Dr E in April, he asked me where I wanted to go with my treatment. I had seen some success with Dr P, and obviously I was feeling skittish about trying new prescription drugs. So I brought up an issue that had been simmering in the back of my mind for over a year - are my vague symptoms actually due to Idiopathic Intracranial Hypertension? I certainly have at least mild head pain every day, with dizziness; as well as unexplained Migraine attacks, nausea, shoulder and neck pain, and tinnitus. Dr E and I had discussed this when I first saw him in 2008, and we had decided to try a few other treatment ideas first before further exploring IIH.
When I brought up IIH again, Dr E agreed that we had come to a point in my treatment where it made sense to test for it. He scheduled me for a lumbar puncture at the end of April. The procedure itself was fairly straightforward (though massively anxiety-producing) and I found out that my pressure is higher than normal. I ended up with a truly terrible spinal headache after the LP that left me completely bed-bound for a week, but I was able to get a blood patch to treat the headache.
While I'm certainly not happy to have another thing wrong with me, getting diagnosed with IIH has opened up my treatment options. Dr E prescribed me a very low dose of Diamox (acetazolamide) to reduce my spinal fluid pressure. I've been taking it since May, and just increased my dose a month ago, and I'm already seeing some positive effects. I'm tolerating it better than the other prescription preventives I've tried, so all in all, the LP was worth it.
I still have a long way to go in finding an effective treatment regimen, but adding the Diamox to treat my IIH has been an important step. I'm having less overall head pain, fewer Migraines and less severe Migraines. Every little bit helps, so I'm glad I followed my instincts and discussed IIH with Dr E.
More to come...
Be well,
MJ
When I saw Dr E in February, he prescribed a low dose of Celexa (citalopram) to help with the anxiety and depression I was dealing with because of life stressors (namely, unemployment) and my health. Celexa is also used as a Migraine preventive, so we were hoping it would help in the head pain arena, as well. I spent a few weeks trying to gather my courage enough to swallow that first pill, and in the meantime, found a part-time job, so I never did try it.
During my follow-up visit with Dr E in April, he asked me where I wanted to go with my treatment. I had seen some success with Dr P, and obviously I was feeling skittish about trying new prescription drugs. So I brought up an issue that had been simmering in the back of my mind for over a year - are my vague symptoms actually due to Idiopathic Intracranial Hypertension? I certainly have at least mild head pain every day, with dizziness; as well as unexplained Migraine attacks, nausea, shoulder and neck pain, and tinnitus. Dr E and I had discussed this when I first saw him in 2008, and we had decided to try a few other treatment ideas first before further exploring IIH.
When I brought up IIH again, Dr E agreed that we had come to a point in my treatment where it made sense to test for it. He scheduled me for a lumbar puncture at the end of April. The procedure itself was fairly straightforward (though massively anxiety-producing) and I found out that my pressure is higher than normal. I ended up with a truly terrible spinal headache after the LP that left me completely bed-bound for a week, but I was able to get a blood patch to treat the headache.
While I'm certainly not happy to have another thing wrong with me, getting diagnosed with IIH has opened up my treatment options. Dr E prescribed me a very low dose of Diamox (acetazolamide) to reduce my spinal fluid pressure. I've been taking it since May, and just increased my dose a month ago, and I'm already seeing some positive effects. I'm tolerating it better than the other prescription preventives I've tried, so all in all, the LP was worth it.
I still have a long way to go in finding an effective treatment regimen, but adding the Diamox to treat my IIH has been an important step. I'm having less overall head pain, fewer Migraines and less severe Migraines. Every little bit helps, so I'm glad I followed my instincts and discussed IIH with Dr E.
More to come...
Be well,
MJ
Sunday, February 8, 2009
courage
I went to see Dr E on Thursday afternoon for a follow-up appointment, and even though there was some confusion (they had canceled my appointment but forgot to call me), Dr E and his PA worked me into the schedule since I was there.
The appointment went very well. We went over the success I've been having with Dr P's regimen. My pain levels are significantly lower than they were a few months ago, and December was actually a very good month. Unfortunately (and I explained this to Dr E) the stress of unemployment has hit me harder in the new year, so I'm back to frequent days where my pain is 5+; I went from 12 such days in December to 27 in January. I know that the stress and anxiety are exacerbating my Migraine pain/symptoms and IBS.
Dr E suggested I add a low dose of Celexa (citalopram) to my regimen to help deal with the anxiety and depression related to the unemployment situation, since the emotional upheaval is having such a negative effect on my head. He specifically suggested Celexa because it has a low side effect profile and has seen success with it in his patients (and few side effects). He remembers well the trouble I've had in the past, so he's starting me on a very low dose. He thinks that the Celexa will probably be a temporary thing to help me get through the unemployment stress, so I may try going off it when the job situation changes.
We also discussed my current triptan, Amerge, which usually works pretty well for me with few side effects, but can take 3 or 3.5 hours to work. I'm keeping that as an option, but he also gave me a scrip to try Axert.
Overall, it was a very good appointment.
I finally picked up my scrips for both drugs yesterday afternoon, but I hadn't quite worked up the courage to try the Celexa last night. Those of you dear readers who have followed my blog for a while may remember that I've had some very strange and severe reactions to meds, most recently Lyrica and even Botox. After my double reaction to the Lyrica and Botox last fall, I told Dr E I wanted a complete break from any prescription preventive meds for a while, which was when he referred me to Dr P. I feel I've made great progress with my new regimen so far, though I still have some way to go.
So tonight, I'm going to try the Celexa. I make it a point not to read the potential side effects on the pharmacy leaflet myself; instead, I read all of the other information and have DBF read about the side effects. This method has worked well for me in the past.
It's still scary, though. These are powerful drugs we take to try to address our Migraines, or, in this case, my anxiety and depression. I can say I would not be as ready to try the Celexa if not for Dr E; without even looking at my chart he remembered the severe reactions I've had in the past. (He once mentioned to me that I redefine medication sensitivity and he would have to be extra cautious in my case.) The headache specialist I saw before Dr E never would have understood this, or have been willing to individually tailor my treatment.
Chronic illness requires a lot of courage: courage to continue on through pain and sickness; courage to try new medications; courage to face the unknown, trial-and-error nature of our treatments. Tonight, I will screw my courage to the sticking-place and try a new drug. Hopefully, it will make a difference in my emotional state and help my head to calm down.
Be well,
MJ
The appointment went very well. We went over the success I've been having with Dr P's regimen. My pain levels are significantly lower than they were a few months ago, and December was actually a very good month. Unfortunately (and I explained this to Dr E) the stress of unemployment has hit me harder in the new year, so I'm back to frequent days where my pain is 5+; I went from 12 such days in December to 27 in January. I know that the stress and anxiety are exacerbating my Migraine pain/symptoms and IBS.
Dr E suggested I add a low dose of Celexa (citalopram) to my regimen to help deal with the anxiety and depression related to the unemployment situation, since the emotional upheaval is having such a negative effect on my head. He specifically suggested Celexa because it has a low side effect profile and has seen success with it in his patients (and few side effects). He remembers well the trouble I've had in the past, so he's starting me on a very low dose. He thinks that the Celexa will probably be a temporary thing to help me get through the unemployment stress, so I may try going off it when the job situation changes.
We also discussed my current triptan, Amerge, which usually works pretty well for me with few side effects, but can take 3 or 3.5 hours to work. I'm keeping that as an option, but he also gave me a scrip to try Axert.
Overall, it was a very good appointment.
I finally picked up my scrips for both drugs yesterday afternoon, but I hadn't quite worked up the courage to try the Celexa last night. Those of you dear readers who have followed my blog for a while may remember that I've had some very strange and severe reactions to meds, most recently Lyrica and even Botox. After my double reaction to the Lyrica and Botox last fall, I told Dr E I wanted a complete break from any prescription preventive meds for a while, which was when he referred me to Dr P. I feel I've made great progress with my new regimen so far, though I still have some way to go.
So tonight, I'm going to try the Celexa. I make it a point not to read the potential side effects on the pharmacy leaflet myself; instead, I read all of the other information and have DBF read about the side effects. This method has worked well for me in the past.
It's still scary, though. These are powerful drugs we take to try to address our Migraines, or, in this case, my anxiety and depression. I can say I would not be as ready to try the Celexa if not for Dr E; without even looking at my chart he remembered the severe reactions I've had in the past. (He once mentioned to me that I redefine medication sensitivity and he would have to be extra cautious in my case.) The headache specialist I saw before Dr E never would have understood this, or have been willing to individually tailor my treatment.
Chronic illness requires a lot of courage: courage to continue on through pain and sickness; courage to try new medications; courage to face the unknown, trial-and-error nature of our treatments. Tonight, I will screw my courage to the sticking-place and try a new drug. Hopefully, it will make a difference in my emotional state and help my head to calm down.
Be well,
MJ
Thursday, November 6, 2008
complementary vs alternative medicine
Therapies like acupuncture, massage therapy, biofeedback and many others are often referred to as "alternative" therapies, and have been for years. Recently, there's been a movement toward referring to them instead as "complementary" therapies. This choice of words may not seem like a big deal, but there is, indeed, a big difference.
"Alternative" therapy implies a complete replacement of more traditional approaches, such as medication or surgery. "Complementary" therapy implies an addition to these more traditional approaches.
A perfect example of this is the difference between the two acupuncturists I've seen. With the first, Dr W, I was pushed toward accepting acupuncture as an alternative therapy, as the only treatment. Instead of preventive medication to treat my Migraines, I would use acupuncture. I saw Dr W for two months, and by the end when I saw a decrease in effectiveness, she insisted it was the fault of the medication. "I can't treat the side effects," she would tell me, "so I can't help you if you stay on these drugs." This disagreement eventually became a big part of why I chose to quit acupuncture.
I quit acupuncture in January of this year, and since then, trialed a number of preventive meds, as well as Botox, and I still wasn't achieving the success in treatment I wanted. This led to me once again seeking a more holistic approach when I saw Dr P last month.
The acupuncturist Dr P referred me to, P, sees acupuncture as a complementary therapy. She has no problem with me taking medications. (Ironic, since the only daily drug I take is Zyrtec for my allergies. Everything else is either daily supplements or as-needed medication.) P also understands that for me, Migraine is a very genetic condition - my mother and sister both are Migraineurs, and we suspect my mom's sisters and mother also suffered from Migraine. With that kind of genetic history, a "cure" from just acupuncture is not feasible. Dr W didn't understand this, or didn't agree with it. P understands that acupuncture alone will not work, and adding supplements, massage therapy, Nia dance and medication is much more likely to be successful.
I am a big proponent of complementary therapies. I think they can and do help treat difficult chronic conditions. However, for most people - especially those with complicated cases - complementary therapy will not be enough on its own (as alternative therapy), but will work as part of a larger, holistic treatment regimen. The same way one medication intervention is also unlikely to work for the difficult cases, one complementary therapy is unlikely to work. Holistic - complementary - is key.
.::.
In case you haven't noticed from my increased posting, I am already starting to feel better. My head pain hasn't necessarily changed much, though I have had a few low-pain days where I had none before. I do have more energy. Not a huge amount, but enough that I've noticed and it makes a difference. I feel like my body is absorbing the new supplements better than the ones I took before, which is good, because I'm swallowing upward of 20 pills a day. I'm having some mild side effects from both the Petadolex and CoQ10, but they seem to be dissipating (only reappearing when I've increased the dosage). I've yet to start the Nia dance, but I have a few options for classes that I will be trying the next week or so.
While I am hoping for continued success with my new treatment regimen, I also realize it's likely I will have to add another preventive medication (specifically, a prescription drug) to my regimen in the future. I'm okay with that. Hopefully, the treatment I'm trying now will mean I need less prescription medication intervention in the future.
Be well,
MJ
"Alternative" therapy implies a complete replacement of more traditional approaches, such as medication or surgery. "Complementary" therapy implies an addition to these more traditional approaches.
A perfect example of this is the difference between the two acupuncturists I've seen. With the first, Dr W, I was pushed toward accepting acupuncture as an alternative therapy, as the only treatment. Instead of preventive medication to treat my Migraines, I would use acupuncture. I saw Dr W for two months, and by the end when I saw a decrease in effectiveness, she insisted it was the fault of the medication. "I can't treat the side effects," she would tell me, "so I can't help you if you stay on these drugs." This disagreement eventually became a big part of why I chose to quit acupuncture.
I quit acupuncture in January of this year, and since then, trialed a number of preventive meds, as well as Botox, and I still wasn't achieving the success in treatment I wanted. This led to me once again seeking a more holistic approach when I saw Dr P last month.
The acupuncturist Dr P referred me to, P, sees acupuncture as a complementary therapy. She has no problem with me taking medications. (Ironic, since the only daily drug I take is Zyrtec for my allergies. Everything else is either daily supplements or as-needed medication.) P also understands that for me, Migraine is a very genetic condition - my mother and sister both are Migraineurs, and we suspect my mom's sisters and mother also suffered from Migraine. With that kind of genetic history, a "cure" from just acupuncture is not feasible. Dr W didn't understand this, or didn't agree with it. P understands that acupuncture alone will not work, and adding supplements, massage therapy, Nia dance and medication is much more likely to be successful.
I am a big proponent of complementary therapies. I think they can and do help treat difficult chronic conditions. However, for most people - especially those with complicated cases - complementary therapy will not be enough on its own (as alternative therapy), but will work as part of a larger, holistic treatment regimen. The same way one medication intervention is also unlikely to work for the difficult cases, one complementary therapy is unlikely to work. Holistic - complementary - is key.
.::.
In case you haven't noticed from my increased posting, I am already starting to feel better. My head pain hasn't necessarily changed much, though I have had a few low-pain days where I had none before. I do have more energy. Not a huge amount, but enough that I've noticed and it makes a difference. I feel like my body is absorbing the new supplements better than the ones I took before, which is good, because I'm swallowing upward of 20 pills a day. I'm having some mild side effects from both the Petadolex and CoQ10, but they seem to be dissipating (only reappearing when I've increased the dosage). I've yet to start the Nia dance, but I have a few options for classes that I will be trying the next week or so.
While I am hoping for continued success with my new treatment regimen, I also realize it's likely I will have to add another preventive medication (specifically, a prescription drug) to my regimen in the future. I'm okay with that. Hopefully, the treatment I'm trying now will mean I need less prescription medication intervention in the future.
Be well,
MJ
Saturday, October 4, 2008
a long-overdue update
I'm ba-ack!
It's been a truly difficult few weeks for me and I hadn't felt up to posting. But it feels like maybe things have leveled out a bit, so here I am.
I posted a few weeks ago about needing to recover after a combination of Botox and family visiting. I thought I was in the clear, but the past few weeks brought worse.
The Botox reaction lasted longer than a week, and combined with a bit of withdrawal from the Lyrica to make me pretty miserable. I started having some weird symptoms, namely irregular heartbeat and tremors, which prompted my headache specialist to send me back to my PCP. I saw the NP at my PCP's office, who ran a full panel of bloodwork and had me wear a 24-hour holter heart monitor to see if we could discover anything. The bloodwork came back normal, and the holter didn't find any "documentable correlation" between my symptoms and my (very regular) heartbeat.
All of the testing and results took about 2 weeks. During those 2 weeks, the Depression and Anxiety that have been creeping up on me started to take over my life. I hardly posted on the MMC forums. I withdrew from DBF. I became very moody and irritable. And I felt horribly sick the whole time.
This past week it all came to a head. My insomnia came back full force. I left work early on Monday to come home and rest. We've had company staying with us this week, friends from college, who don't know much about what's been going on with my health. DBF has been unusually stressed at work. I asked for accommodations at work when a better desk opened up on my team, and my boss gave the desk to someone else. I felt like no matter what I tried to do, nothing was helping me to get or even feel better. I did have an appointment with my new therapist on Wednesday, but having to go through my family history was painful and only made me feel worse. (Though, in the long run, talking about some past issues will undoubtedly help me.)
Once I got the results from the holter on Thursday, I gave my headache specialist a phone call yesterday to let him know everything turned out normal, and my irregular heartbeat had disappeared. The tremors seem to be a holdover from the Lyrica and come on when I've overexerted myself. He returned my call yesterday but I missed it; fortunately he was on-call this weekend and called me first thing this morning.
What a difference a 20-minute phone call can make!
A big part of my Anxiety was my contradictory feelings that one, I am not ready to try any new preventive medications because of my awful side effects with them; but two, I couldn't face sitting around and doing nothing. So therefore (I thought) I had to try a new preventive. Faulty logic, I know. Medication isn't the only treatment available for Migraine Disease.
When I called my doctor on Friday and spoke with his NP, I told her that I'm not ready to try the propranolol he prescribed for me, and wanted to talk about alternatives. When Dr E called me this morning, we went over the symptoms I had been having - irregular heartbeat and tremors - and he saw from my call in yesterday that they've cleared up. Well, the heartbeat has. I told him the tremors only seem to come on at night after I've overexerted myself.
I explained to him my reluctance to try any new preventive meds, because of all of the awful side effects I've been having. He seemed to understand that and we discussed it for a bit. He also asked about my stress at work (somewhat stressful but I don't take it home with me) and my general emotional state (not so good). He asked straight out about any Anxiety/Depression issues, both of which have been worsening as my Migraines continue. I was relieved he brought it up without making my Migraines/CDH into an emotional problem. He recognizes that they feed each other, a sort of chicken-and-egg problem.
I asked him about supplements as preventives (in particular, CoQ10) and any alternative treatments I could try (I've tried acupuncture and biofeedback/relaxation in the past). He's not convinced that any supplements will be enough for a complex chronic case like mine. He thinks I need the more aggressive meds, but recognizes that I then run into trouble because of my sensitivity to side effects. But he is willing to go that path if that's my preference.
He gave me the option of a referral to an internist in the area who also has a degree in herbology. He trusts her, and I like that she has a background in both eastern and western medicine and uses them together.
So, I have a few options. I can try the propranolol that he prescribed for me last month (very low dose). He's a bit hesitant about this because of the potential side effect of depression. He also suggested I try an SSRI (Celexa) at a low dose, instead of the propranolol, to help ease the Depression/Anxiety and hopefully work as a preventive as well. I have the option of taking a med holiday until I feel ready to try something new. I can also get the referral to the internist and try the supplementation route. If I decide to try acupuncture or biofeedback again, I'm sure he will help out with a referral for that as well.
What I'm going to do is sit on these options and think about them over the weekend. I feel much better after talking to him. He really seems to understand my reluctance about meds and didn't at all push any drugs on me. And I appreciate that he understands my need to think over all of these options before I decide what to do next.
I still have a long way to go treatment-wise. My Migraines are less severe with the Botox, but I still have Migraine/CDH pain constantly. I know it will take time to find a way to break the pain and get the frequency down. But I have confidence that Dr E can work with me to find a successful treatment regimen. When I got the call back from his NP telling me to see my PCP for the irregular heartbeat, I was worried I had been brushed off and he was giving up on me. I feel very relieved after my conversation with him this morning. It's obvious he genuinely wants to help me and is willing to work with a difficult case.
I hope to be posting more frequently again. Over the next few days I'll be catching up on everyone's posts. Hope all are AWAP!
Be well,
MJ
It's been a truly difficult few weeks for me and I hadn't felt up to posting. But it feels like maybe things have leveled out a bit, so here I am.
I posted a few weeks ago about needing to recover after a combination of Botox and family visiting. I thought I was in the clear, but the past few weeks brought worse.
The Botox reaction lasted longer than a week, and combined with a bit of withdrawal from the Lyrica to make me pretty miserable. I started having some weird symptoms, namely irregular heartbeat and tremors, which prompted my headache specialist to send me back to my PCP. I saw the NP at my PCP's office, who ran a full panel of bloodwork and had me wear a 24-hour holter heart monitor to see if we could discover anything. The bloodwork came back normal, and the holter didn't find any "documentable correlation" between my symptoms and my (very regular) heartbeat.
All of the testing and results took about 2 weeks. During those 2 weeks, the Depression and Anxiety that have been creeping up on me started to take over my life. I hardly posted on the MMC forums. I withdrew from DBF. I became very moody and irritable. And I felt horribly sick the whole time.
This past week it all came to a head. My insomnia came back full force. I left work early on Monday to come home and rest. We've had company staying with us this week, friends from college, who don't know much about what's been going on with my health. DBF has been unusually stressed at work. I asked for accommodations at work when a better desk opened up on my team, and my boss gave the desk to someone else. I felt like no matter what I tried to do, nothing was helping me to get or even feel better. I did have an appointment with my new therapist on Wednesday, but having to go through my family history was painful and only made me feel worse. (Though, in the long run, talking about some past issues will undoubtedly help me.)
Once I got the results from the holter on Thursday, I gave my headache specialist a phone call yesterday to let him know everything turned out normal, and my irregular heartbeat had disappeared. The tremors seem to be a holdover from the Lyrica and come on when I've overexerted myself. He returned my call yesterday but I missed it; fortunately he was on-call this weekend and called me first thing this morning.
What a difference a 20-minute phone call can make!
A big part of my Anxiety was my contradictory feelings that one, I am not ready to try any new preventive medications because of my awful side effects with them; but two, I couldn't face sitting around and doing nothing. So therefore (I thought) I had to try a new preventive. Faulty logic, I know. Medication isn't the only treatment available for Migraine Disease.
When I called my doctor on Friday and spoke with his NP, I told her that I'm not ready to try the propranolol he prescribed for me, and wanted to talk about alternatives. When Dr E called me this morning, we went over the symptoms I had been having - irregular heartbeat and tremors - and he saw from my call in yesterday that they've cleared up. Well, the heartbeat has. I told him the tremors only seem to come on at night after I've overexerted myself.
I explained to him my reluctance to try any new preventive meds, because of all of the awful side effects I've been having. He seemed to understand that and we discussed it for a bit. He also asked about my stress at work (somewhat stressful but I don't take it home with me) and my general emotional state (not so good). He asked straight out about any Anxiety/Depression issues, both of which have been worsening as my Migraines continue. I was relieved he brought it up without making my Migraines/CDH into an emotional problem. He recognizes that they feed each other, a sort of chicken-and-egg problem.
I asked him about supplements as preventives (in particular, CoQ10) and any alternative treatments I could try (I've tried acupuncture and biofeedback/relaxation in the past). He's not convinced that any supplements will be enough for a complex chronic case like mine. He thinks I need the more aggressive meds, but recognizes that I then run into trouble because of my sensitivity to side effects. But he is willing to go that path if that's my preference.
He gave me the option of a referral to an internist in the area who also has a degree in herbology. He trusts her, and I like that she has a background in both eastern and western medicine and uses them together.
So, I have a few options. I can try the propranolol that he prescribed for me last month (very low dose). He's a bit hesitant about this because of the potential side effect of depression. He also suggested I try an SSRI (Celexa) at a low dose, instead of the propranolol, to help ease the Depression/Anxiety and hopefully work as a preventive as well. I have the option of taking a med holiday until I feel ready to try something new. I can also get the referral to the internist and try the supplementation route. If I decide to try acupuncture or biofeedback again, I'm sure he will help out with a referral for that as well.
What I'm going to do is sit on these options and think about them over the weekend. I feel much better after talking to him. He really seems to understand my reluctance about meds and didn't at all push any drugs on me. And I appreciate that he understands my need to think over all of these options before I decide what to do next.
I still have a long way to go treatment-wise. My Migraines are less severe with the Botox, but I still have Migraine/CDH pain constantly. I know it will take time to find a way to break the pain and get the frequency down. But I have confidence that Dr E can work with me to find a successful treatment regimen. When I got the call back from his NP telling me to see my PCP for the irregular heartbeat, I was worried I had been brushed off and he was giving up on me. I feel very relieved after my conversation with him this morning. It's obvious he genuinely wants to help me and is willing to work with a difficult case.
I hope to be posting more frequently again. Over the next few days I'll be catching up on everyone's posts. Hope all are AWAP!
Be well,
MJ
Friday, September 12, 2008
recovery
Much like National Headache Awareness Week back in June, I've been extra aware of my head pain this week, which happens to be both Invisible Chronic Illness Awareness Week and Migraine Awareness Week (in the UK). And I've spent this noteworthy week being rather ill, between a rather tall stack of Migraine triggers and some medical issues.
First, my family (Mom and sister) came to visit me. They live in Massachusetts, so it's an all-too-rare treat to have them come visit. Like me, they are both Migraineurs, so they "get it" about being sick and in pain, though neither of them have suffered with the severity of Migraine that I have.
My sister, mom and I went to Port Townsend for the long Labor Day weekend, to visit a pretty Victorian town none of us have seen, and to drive up to Hurricane Ridge at Olympic National Park. We drove up on Friday afternoon, returning on Monday. While it was a very laid-back trip and we cooked in the kitchen in our hotel room, it was still traveling, which always stresses out my body.
Tuesday through Friday, I was back at work, dealing with the typical stack of work triggers: fluorescent lighting, computer screen, food smells and noise. Being tired from the long weekend away made me more susceptible to my triggers, though I had a few days of recuperation before another long weekend. My mom spent the week traveling again, while my sister left on Monday night. In addition, the Lyrica I had been trialing as preventive #7 began giving me increasingly intolerable side effects, so with Dr E's okay I discontinued it on Friday, after several weeks of side effects.
Friday afternoon, DBF, my mom and I looked at a house before driving to Lake Chelan. This was more of a rush trip involving a lot of driving. By the time I got home Sunday night, I was completely worn out and dreading another week of work.
During my family's visit and our various trips around Washington state, the effectiveness of the Botox treatment I had back in June had been wearing off, meaning more pain and more Migraine symptoms. Luckily, Monday afternoon was my second round of Botox injections, and I was hoping for relief similar to my first treatment.
Wrong! This time, the injections hurt much more. Monday night, I felt awful. Bad enough that I called my doctor on Tuesday morning to report in about my side effects. Dr E called back quickly, and after asking me a few questions determined that I may be having a mild allergic reaction to the Botox. Great! He had prescribed a new preventive for me to try, Inderal, but suggested I hold off on it until I felt completely back to normal.
As if that stack of triggers and side effects wasn't high enough, I had a stressful week at work. My company laid off 20 employees on Tuesday, which amounts to about 5% of our firm. While we were very fortunate that my company was (and still is) financially stable, these employees were not laid off for performance issues. Our senior partners handled it well, holding four separate open discussions with the various teams and entire firm, inviting questions from everyone. They recognized how stressful the layoffs would be for all of us, but the shock of losing good employees (and friends) was difficult on everyone.
And because this stack wasn't quite tall enough yet, I worked 9-hour days on Tuesday, Wednesday and Thursday to try to make up for the work time I missed on Friday and Monday. So now, I'm in recovery mode.
What I need to remember in facing these types of life situations is that, first and foremost, I need to take care of myself. In my healthier years, I could handle the sort of stress that travel and work would put on my body without much trouble. But now that my Migraines are out of control again and I spend all of my time being sick, I need to take extra good care of myself during stressful periods. I've really done a number on myself, and I'm hoping that this weekend is enough to recover (though it may well not be).
I have been very frustrated and upset this week. Dealing with another failed preventive and an allergic reaction are difficult enough in my day-to-day life, but adding all this stress on top of it just threw my body for a loop. I had to leave work early today, after spending much of the day in a painful haze, to come home and nap. DBF woke me up for dinner, and after eating, I'm starting to feel less like road kill. I still feel incredibly dizzy, nauseous, achy (both Migraine- and Botox-related) and exhausted.
I had some plans this weekend, to go look at houses and run some errands. In all likelihood, I will have to postpone these plans and spend the weekend on the couch, trying to catch up on sleep and renew my energy reserves.
Megan over at Free My Brain wrote this week about her Migraines being invisible to herself. After these two weeks of overstressing my body and not taking enough recovery time, I find myself in the same boat. Acceptance of illness is a difficult path, and I find myself repeatedly learning the same lessons.
So, for the final few days of Invisible Chronic Illness Awareness Week, I plan to be much more aware of my own illness, and treat myself with the patience and compassion I deserve.
Be well,
MJ
First, my family (Mom and sister) came to visit me. They live in Massachusetts, so it's an all-too-rare treat to have them come visit. Like me, they are both Migraineurs, so they "get it" about being sick and in pain, though neither of them have suffered with the severity of Migraine that I have.
My sister, mom and I went to Port Townsend for the long Labor Day weekend, to visit a pretty Victorian town none of us have seen, and to drive up to Hurricane Ridge at Olympic National Park. We drove up on Friday afternoon, returning on Monday. While it was a very laid-back trip and we cooked in the kitchen in our hotel room, it was still traveling, which always stresses out my body.
Tuesday through Friday, I was back at work, dealing with the typical stack of work triggers: fluorescent lighting, computer screen, food smells and noise. Being tired from the long weekend away made me more susceptible to my triggers, though I had a few days of recuperation before another long weekend. My mom spent the week traveling again, while my sister left on Monday night. In addition, the Lyrica I had been trialing as preventive #7 began giving me increasingly intolerable side effects, so with Dr E's okay I discontinued it on Friday, after several weeks of side effects.
Friday afternoon, DBF, my mom and I looked at a house before driving to Lake Chelan. This was more of a rush trip involving a lot of driving. By the time I got home Sunday night, I was completely worn out and dreading another week of work.
During my family's visit and our various trips around Washington state, the effectiveness of the Botox treatment I had back in June had been wearing off, meaning more pain and more Migraine symptoms. Luckily, Monday afternoon was my second round of Botox injections, and I was hoping for relief similar to my first treatment.
Wrong! This time, the injections hurt much more. Monday night, I felt awful. Bad enough that I called my doctor on Tuesday morning to report in about my side effects. Dr E called back quickly, and after asking me a few questions determined that I may be having a mild allergic reaction to the Botox. Great! He had prescribed a new preventive for me to try, Inderal, but suggested I hold off on it until I felt completely back to normal.
As if that stack of triggers and side effects wasn't high enough, I had a stressful week at work. My company laid off 20 employees on Tuesday, which amounts to about 5% of our firm. While we were very fortunate that my company was (and still is) financially stable, these employees were not laid off for performance issues. Our senior partners handled it well, holding four separate open discussions with the various teams and entire firm, inviting questions from everyone. They recognized how stressful the layoffs would be for all of us, but the shock of losing good employees (and friends) was difficult on everyone.
And because this stack wasn't quite tall enough yet, I worked 9-hour days on Tuesday, Wednesday and Thursday to try to make up for the work time I missed on Friday and Monday. So now, I'm in recovery mode.
What I need to remember in facing these types of life situations is that, first and foremost, I need to take care of myself. In my healthier years, I could handle the sort of stress that travel and work would put on my body without much trouble. But now that my Migraines are out of control again and I spend all of my time being sick, I need to take extra good care of myself during stressful periods. I've really done a number on myself, and I'm hoping that this weekend is enough to recover (though it may well not be).
I have been very frustrated and upset this week. Dealing with another failed preventive and an allergic reaction are difficult enough in my day-to-day life, but adding all this stress on top of it just threw my body for a loop. I had to leave work early today, after spending much of the day in a painful haze, to come home and nap. DBF woke me up for dinner, and after eating, I'm starting to feel less like road kill. I still feel incredibly dizzy, nauseous, achy (both Migraine- and Botox-related) and exhausted.
I had some plans this weekend, to go look at houses and run some errands. In all likelihood, I will have to postpone these plans and spend the weekend on the couch, trying to catch up on sleep and renew my energy reserves.
Megan over at Free My Brain wrote this week about her Migraines being invisible to herself. After these two weeks of overstressing my body and not taking enough recovery time, I find myself in the same boat. Acceptance of illness is a difficult path, and I find myself repeatedly learning the same lessons.
So, for the final few days of Invisible Chronic Illness Awareness Week, I plan to be much more aware of my own illness, and treat myself with the patience and compassion I deserve.
Be well,
MJ
Monday, August 25, 2008
rain, pain, no brain
Just briefly: my Botox is starting to wear off and I only just started Lyrica (preventive #7) last week, so that means very limited computer time for the next two weeks. I go in for my next Botox treatment on September 8, so I hope to be posting more regularly after that.
In the meantime, please check out the wonderful blogs in my blogroll. I'll try to pop in here as my Migraine brain allows.
Be well,
MJ
In the meantime, please check out the wonderful blogs in my blogroll. I'll try to pop in here as my Migraine brain allows.
Be well,
MJ
Tuesday, June 24, 2008
finally, a rescue (medication)
Since getting my first Botox injections two weeks ago, my pain levels overall have decreased, even though my ongoing migraine still hasn't quit. My base pain level is now a 2 out of 10, rather than 4. I still spike as high as an 8 weekly or so, but overall I'm feeling a bit better.
This weekend was not so great, between intense sunlight, gross smells from neighbors' apartments and a broken elevator, meaning 4 flights of stairs. Sunday afternoon, DBF and I went to run some errands and by the time I got home - climbing up all those stairs - my pain was at an 8 and holding steady. Ice packs weren't doing anything.
So I decided to try some Relpax, which was the third time I took it. Both times previously, it had made me more tingly on my left side and sort of woozy, but I was willing to try it again.
Once again, it made me tingly. Very tingly. And then part of my face went numb. *sigh*
So I called Dr E's office first thing on Monday morning to let him know I was having trouble. He called me back toward the end of the day, and after a 10-minute discussion, he called in scripts for Amerge - as a "gentler" triptan option if I'm not tingly - and Fioricet - as a rescue if I am tingly.
All I could think when I got off the phone was that finally I have a doctor willing to prescribe me a rescue medication. My last doctor's attitude was "pain pills don't work", end of story.
I tried the Fioricet last night, only a few hours after picking it up from the pharmacy. It brought my pain levels down pretty well, so I'm happy to add it to my arsenal. It's not likely something I can take at work, which still leaves me without something to take if I'm tingly and in pain and at work. I haven't tried the Amerge yet.
I'll be calling my doctor again next Monday, to give him an update on the Botox progress. I should be able to let him know how both the new meds work out for me, too. I'm happy to finally be making some progress; I just wish it didn't take so darned long.
*sigh*
I have much more to say, but it will have to wait for another evening. So, for now, check out June's Pain Blog Carnival.
Be well,
MJ
This weekend was not so great, between intense sunlight, gross smells from neighbors' apartments and a broken elevator, meaning 4 flights of stairs. Sunday afternoon, DBF and I went to run some errands and by the time I got home - climbing up all those stairs - my pain was at an 8 and holding steady. Ice packs weren't doing anything.
So I decided to try some Relpax, which was the third time I took it. Both times previously, it had made me more tingly on my left side and sort of woozy, but I was willing to try it again.
Once again, it made me tingly. Very tingly. And then part of my face went numb. *sigh*
So I called Dr E's office first thing on Monday morning to let him know I was having trouble. He called me back toward the end of the day, and after a 10-minute discussion, he called in scripts for Amerge - as a "gentler" triptan option if I'm not tingly - and Fioricet - as a rescue if I am tingly.
All I could think when I got off the phone was that finally I have a doctor willing to prescribe me a rescue medication. My last doctor's attitude was "pain pills don't work", end of story.
I tried the Fioricet last night, only a few hours after picking it up from the pharmacy. It brought my pain levels down pretty well, so I'm happy to add it to my arsenal. It's not likely something I can take at work, which still leaves me without something to take if I'm tingly and in pain and at work. I haven't tried the Amerge yet.
I'll be calling my doctor again next Monday, to give him an update on the Botox progress. I should be able to let him know how both the new meds work out for me, too. I'm happy to finally be making some progress; I just wish it didn't take so darned long.
*sigh*
I have much more to say, but it will have to wait for another evening. So, for now, check out June's Pain Blog Carnival.
Be well,
MJ
Thursday, June 12, 2008
out with the Topamax, in with the botulism
Just a quick post tonight before I retire for the evening.
I saw Dr E on Monday for my first Botox treatment. Much to my surprise, my new insurance company approved my doctor's request for Botox on the first try, no appeals necessary. My last insurance company denied the Botox, which turned out to be a blessing in disguise since it helped me to realize my last doctor was a turkey, so I fired her.
The procedure itself really was not as bad as I thought it would be. I brought DBF with me for moral support. After talking to me a bit about Botox, Dr E gave me about 12 injections, in my forehead, brow, back of head, neck and shoulders. The injections burned, for sure, but the pain was nothing compared to the migraine I had while I was there.
He also gave me the go-ahead to discontinue the cursed Topamax. I felt it was only giving me side effects and no benefits, and he felt that since I was on such a low dose I could go ahead and stop it. So right now, the only preventives I'm taking are magnesium and vitamin B2 (riboflavin). Plus the Botox.
I should know in the next few days if it's going to work for me. The day after the procedure was wonderfully low-pain. Yesterday I overdid it and ended up with my pain at an 8 by the end of the day. Today is somewhere in between. I'm faithfully tracking everything in my migraine diary and trying to be patient.
Dr E wants me to call in in three weeks to let him know how I'm doing. By then we'll have a better idea of my frequency and severity, and can discuss a plan from there. I have a follow-up Botox appointment scheduled in three months, but he plans to do some phone consults with me before then, and have me come in sooner if I need to.
(Let me just say again, I am so happy I found this guy.)
So, I'm keeping my fingers firmly crossed that the Botox will help. I'm not expecting miracles, but I'm hoping it will reduce my pain enough to give other preventives a chance to start working. And maybe, just maybe, one day I'll be rid of this migraine.
Also, if you haven't seen it already, check out June's Migraine & Headache Blog Carnival, hosted by the Migraine Girl.
Be well,
MJ
I saw Dr E on Monday for my first Botox treatment. Much to my surprise, my new insurance company approved my doctor's request for Botox on the first try, no appeals necessary. My last insurance company denied the Botox, which turned out to be a blessing in disguise since it helped me to realize my last doctor was a turkey, so I fired her.
The procedure itself really was not as bad as I thought it would be. I brought DBF with me for moral support. After talking to me a bit about Botox, Dr E gave me about 12 injections, in my forehead, brow, back of head, neck and shoulders. The injections burned, for sure, but the pain was nothing compared to the migraine I had while I was there.
He also gave me the go-ahead to discontinue the cursed Topamax. I felt it was only giving me side effects and no benefits, and he felt that since I was on such a low dose I could go ahead and stop it. So right now, the only preventives I'm taking are magnesium and vitamin B2 (riboflavin). Plus the Botox.
I should know in the next few days if it's going to work for me. The day after the procedure was wonderfully low-pain. Yesterday I overdid it and ended up with my pain at an 8 by the end of the day. Today is somewhere in between. I'm faithfully tracking everything in my migraine diary and trying to be patient.
Dr E wants me to call in in three weeks to let him know how I'm doing. By then we'll have a better idea of my frequency and severity, and can discuss a plan from there. I have a follow-up Botox appointment scheduled in three months, but he plans to do some phone consults with me before then, and have me come in sooner if I need to.
(Let me just say again, I am so happy I found this guy.)
So, I'm keeping my fingers firmly crossed that the Botox will help. I'm not expecting miracles, but I'm hoping it will reduce my pain enough to give other preventives a chance to start working. And maybe, just maybe, one day I'll be rid of this migraine.
Also, if you haven't seen it already, check out June's Migraine & Headache Blog Carnival, hosted by the Migraine Girl.
Be well,
MJ
Sunday, June 8, 2008
grieving my past life
I'm going to say it right now: I resent migraine disease, and everything it has taken away from my life.
I graduated college two years ago, a carefree, optimistic, idealistic young woman, about to embark on a promising career in architecture. The economy at that time was much better than it is now, and the job market for new intern architects was excellent. I had my pick of where to work, so I chose a firm whose mission and vision seemed to echo my own goals. I packed up and moved clear across the country, taking a chance on a new life. What better time to do it?
My first neuro, who saw me all through college while I was on Topamax the first time, suggested I try titrating off to "see how I would do". The tapering schedule he gave me meant that I was finished with the Topa before I even got to the West Coast. Fitting, I thought. A new life, no longer a slave to the little Topa pill I hated so.
An immature view, I realize now. Now I know the necessity of good preventive medication. When I was in college, I knew nothing about chronic daily headache or about migraine disease. I just knew that my head hurt all the time, and taking 50 mg of Topa every day meant my head only bothered me about twice a semester, but it also meant I couldn't consume alcohol with the same carefree attitude of my friends.
But what I realize now, what I have realized over and over again in the two years since I came off the Topa, is that that stupid pill that I hated so much is what allowed me to finish college on time, with an honors diploma and double-minor. It gave me a life I wouldn't have had otherwise. There's no guarantee, of course, that staying on the Topa would have meant it would have kept working for me - and that's what I tell myself every day. Because now Topa doesn't do anything for me other than randomly give me new side effects and make me depressed if I take too much of it. I thought at one point that it may have been working, but I no longer have that delusion.
Within a month of titrating off the Topa, the ambiguous dizziness and nausea, that I now recognize as my primary symptoms of CDH, were back. I blamed this sickness on everything: homesickness, adjusting to my new life, allergies, an ongoing fight with my father. It took until December, six months later, to schedule an appointment with my PCP. She treated me for a sinus infection; those antibiotics did nothing, of course, to actually fix my head. By February 2007 I was referred to a neurologist.
Nine months I had already given to this disease, convincing myself it had to be something else. And during that time, I was trying to establish a new life for myself. The weak social ties I had started to forge over my first summer here had already fizzled out. I just didn't feel well enough to go out and drink on weekends. I didn't have enough energy to make plans with people, or join community groups. I did a brief stint, playing clarinet with a local university band, but after a year of that, I simply didn't have the energy anymore.
From February until now has been one preventive after another, in various combinations. Topamax, nortriptyline, cyproheptadine, verapamil, gabapentin, Topamax again. Meanwhile, my CDH and frequent migraines turned into weekly migraines, then daily migraines, and now an ongoing migraine since November that's only becoming harder and harder to treat.
It's not that I resent the time I've spent trying to treat my migraines. I understand the trial-and-error nature of migraine treatment. I resent everything I've had to give up.
I no longer can go shopping or run errands for the most part. Fluorescent lights are a huge trigger for me. Not only do they aggravate my migraine, but certain tints of fluorescents - the kind most retail stores use - trigger diarrhea within 15 minutes of going into a store. Not so conducive to shopping.
I no longer go to see movies in the movie theatre. Seeing movies, especially action movies, in the theatre is both one of my favorite pastimes and biggest triggers. Seeing Pirates 3 triggered one of the first acephalgic migraines that I identified as such.
I no longer drive, except on very rare occasions when I absolutely can't avoid it. I don't feel safe on the road, since I know my concentration is impacted from this ongoing migraine.
I no longer drink. Alcohol seems to be a stackable trigger. It interacts with almost every medication I take anyway.
I no longer eat gluten, dairy, caffeine, MSG, preservatives, artificial sweeteners, high fructose corn syrup, and have severely reduced my sugar and salt intake. MSG and artificial sweeteners are confirmed migraine triggers. The rest do bad things to my digestion so I've cut them out.
I hardly ever eat out, because of my strict diet and because I hardly ever feel up to it.
I no longer do my computer-based design work. Computer screens are a migraine trigger. Working in front of a computer at work is all I can tolerate most days.
I no longer use a desktop computer at home. This doesn't sound like it would be a big deal, but my desktop is much more suited to do most design work. Since I can't do it anyway, DBF and I decided to buy a new laptop for me to use in the living room.
I no longer go to the library. This one makes me very upset. But our gorgeous library has fluorescent lighting, so I can only stop by long enough to pick up books I have on hold. No more Saturday afternoons spent reading there.
I have almost no social life to speak of. Since my migraines have gotten progressively worse as I've tried to start a new life here, it's been hard to form new social ties. DBF and I are going to make more of an effort to have people over this summer, but we'll see if that actually pans out.
But most of all, I no longer just "do" things without considering their consequences. A coworker invites me out to lunch; is there something at the restaurant I can eat? What kind of lighting does the restaurant have? I have to buy a new pair of jeans; do I order them online and risk them not fitting or do I try to buy them in a store and risk fluorescent lighting? We're out of cat food; I have to ask DBF to go buy some - I can't drive to the store and I can't go in there once I've gotten there.
There is a lot about my life that is positive. DBF, for one. A girl could not ask for a more supportive boyfriend. Without him, there is no doubt I wouldn't have been able to make it this far. I would have already had to move back to the East Coast to ask my family for help.
My job, for another. It's been a huge struggle to keep a full-time schedule with my health in such bad shape, but my job has excellent health insurance and benefits, not to mention is a great way to start my career. My firm and my boss have been pretty understanding of my situation and have given me a lot of leeway.
And of course, there's my family. My mom and sister are both migraineurs, and while their migraines have never been as severe as mine, they understand my pain.
Last but not least is my doctor. Without a good doctor I surely would have lost hope by now. I've just started seeing him, but I feel more confident he can help me than the last doc I saw.
It is just so hard to nurture hope in the face of so much failure. Five preventives I've trialed; all have failed. While there are many more to try, it takes a lot of courage to keep trying. And while I've been trying, my migraines have only gotten worse.
And more and more, I find it hard to suppress the question in the back of my mind: what if this migraine never breaks? What if I am always stuck with this pain?
Today I don't have any answers, or any insight to wrap this post up with. So I'll leave you, instead, with a quote from a book I recently finished:
Be well,
MJ
I graduated college two years ago, a carefree, optimistic, idealistic young woman, about to embark on a promising career in architecture. The economy at that time was much better than it is now, and the job market for new intern architects was excellent. I had my pick of where to work, so I chose a firm whose mission and vision seemed to echo my own goals. I packed up and moved clear across the country, taking a chance on a new life. What better time to do it?
My first neuro, who saw me all through college while I was on Topamax the first time, suggested I try titrating off to "see how I would do". The tapering schedule he gave me meant that I was finished with the Topa before I even got to the West Coast. Fitting, I thought. A new life, no longer a slave to the little Topa pill I hated so.
An immature view, I realize now. Now I know the necessity of good preventive medication. When I was in college, I knew nothing about chronic daily headache or about migraine disease. I just knew that my head hurt all the time, and taking 50 mg of Topa every day meant my head only bothered me about twice a semester, but it also meant I couldn't consume alcohol with the same carefree attitude of my friends.
But what I realize now, what I have realized over and over again in the two years since I came off the Topa, is that that stupid pill that I hated so much is what allowed me to finish college on time, with an honors diploma and double-minor. It gave me a life I wouldn't have had otherwise. There's no guarantee, of course, that staying on the Topa would have meant it would have kept working for me - and that's what I tell myself every day. Because now Topa doesn't do anything for me other than randomly give me new side effects and make me depressed if I take too much of it. I thought at one point that it may have been working, but I no longer have that delusion.
Within a month of titrating off the Topa, the ambiguous dizziness and nausea, that I now recognize as my primary symptoms of CDH, were back. I blamed this sickness on everything: homesickness, adjusting to my new life, allergies, an ongoing fight with my father. It took until December, six months later, to schedule an appointment with my PCP. She treated me for a sinus infection; those antibiotics did nothing, of course, to actually fix my head. By February 2007 I was referred to a neurologist.
Nine months I had already given to this disease, convincing myself it had to be something else. And during that time, I was trying to establish a new life for myself. The weak social ties I had started to forge over my first summer here had already fizzled out. I just didn't feel well enough to go out and drink on weekends. I didn't have enough energy to make plans with people, or join community groups. I did a brief stint, playing clarinet with a local university band, but after a year of that, I simply didn't have the energy anymore.
From February until now has been one preventive after another, in various combinations. Topamax, nortriptyline, cyproheptadine, verapamil, gabapentin, Topamax again. Meanwhile, my CDH and frequent migraines turned into weekly migraines, then daily migraines, and now an ongoing migraine since November that's only becoming harder and harder to treat.
It's not that I resent the time I've spent trying to treat my migraines. I understand the trial-and-error nature of migraine treatment. I resent everything I've had to give up.
I no longer can go shopping or run errands for the most part. Fluorescent lights are a huge trigger for me. Not only do they aggravate my migraine, but certain tints of fluorescents - the kind most retail stores use - trigger diarrhea within 15 minutes of going into a store. Not so conducive to shopping.
I no longer go to see movies in the movie theatre. Seeing movies, especially action movies, in the theatre is both one of my favorite pastimes and biggest triggers. Seeing Pirates 3 triggered one of the first acephalgic migraines that I identified as such.
I no longer drive, except on very rare occasions when I absolutely can't avoid it. I don't feel safe on the road, since I know my concentration is impacted from this ongoing migraine.
I no longer drink. Alcohol seems to be a stackable trigger. It interacts with almost every medication I take anyway.
I no longer eat gluten, dairy, caffeine, MSG, preservatives, artificial sweeteners, high fructose corn syrup, and have severely reduced my sugar and salt intake. MSG and artificial sweeteners are confirmed migraine triggers. The rest do bad things to my digestion so I've cut them out.
I hardly ever eat out, because of my strict diet and because I hardly ever feel up to it.
I no longer do my computer-based design work. Computer screens are a migraine trigger. Working in front of a computer at work is all I can tolerate most days.
I no longer use a desktop computer at home. This doesn't sound like it would be a big deal, but my desktop is much more suited to do most design work. Since I can't do it anyway, DBF and I decided to buy a new laptop for me to use in the living room.
I no longer go to the library. This one makes me very upset. But our gorgeous library has fluorescent lighting, so I can only stop by long enough to pick up books I have on hold. No more Saturday afternoons spent reading there.
I have almost no social life to speak of. Since my migraines have gotten progressively worse as I've tried to start a new life here, it's been hard to form new social ties. DBF and I are going to make more of an effort to have people over this summer, but we'll see if that actually pans out.
But most of all, I no longer just "do" things without considering their consequences. A coworker invites me out to lunch; is there something at the restaurant I can eat? What kind of lighting does the restaurant have? I have to buy a new pair of jeans; do I order them online and risk them not fitting or do I try to buy them in a store and risk fluorescent lighting? We're out of cat food; I have to ask DBF to go buy some - I can't drive to the store and I can't go in there once I've gotten there.
There is a lot about my life that is positive. DBF, for one. A girl could not ask for a more supportive boyfriend. Without him, there is no doubt I wouldn't have been able to make it this far. I would have already had to move back to the East Coast to ask my family for help.
My job, for another. It's been a huge struggle to keep a full-time schedule with my health in such bad shape, but my job has excellent health insurance and benefits, not to mention is a great way to start my career. My firm and my boss have been pretty understanding of my situation and have given me a lot of leeway.
And of course, there's my family. My mom and sister are both migraineurs, and while their migraines have never been as severe as mine, they understand my pain.
Last but not least is my doctor. Without a good doctor I surely would have lost hope by now. I've just started seeing him, but I feel more confident he can help me than the last doc I saw.
It is just so hard to nurture hope in the face of so much failure. Five preventives I've trialed; all have failed. While there are many more to try, it takes a lot of courage to keep trying. And while I've been trying, my migraines have only gotten worse.
And more and more, I find it hard to suppress the question in the back of my mind: what if this migraine never breaks? What if I am always stuck with this pain?
Today I don't have any answers, or any insight to wrap this post up with. So I'll leave you, instead, with a quote from a book I recently finished:
"What will you do, if it does not turn out how you expect?"
"I do not know. Nor shall I worry about it until it happens. I still have an action left to take; until I have exhausted it, I shall not despair." - Robin Hobb, Assassin's Quest
Be well,
MJ
Friday, June 6, 2008
the irony of National Headache Awareness Week
It's ironic that National Headache Awareness Week would be a bad head week for me, but so it goes. Had I been feeling better, I could have publicized it at the beginning of the week, and perhaps even watched the new NHF youtube channel videos.
Instead, I've spent the week absolutely miserable, with severe head pain and the whole list of my typical migraine symptoms: vertigo, nausea, stomach pain, diarrhea, phonophobia, photophobia, cutaneous allodynia, sensitivity to smell, depression, difficulty concentrating.
Part of the problem is that I finished a 10-day course of prednisone, which Dr E had prescribed for me in hopes of breaking my months-long migraine. I took a 5-day "burst" of the steroid, followed by a 5-day taper, and I had thought my body was dealing with the drug pretty well. I had some unpleasant side effects that were tolerable. But this week, after coming off of it, was terrible. I had horrid body aches and no energy, making me even more sympathetic to my fibro friends out there.
Oh yeah, and the prednisone didn't break my migraine. I did get five days of low pain, but as soon as I started tapering, my pain climbed right back to where it always is.
Add to that, I'm getting more side effects from the Topamax again, which I don't understand. I've been taking a 50 mg dose - a low dose, even for a migraineur - since March. Suddenly, I'm having stomach pains, worse nausea, tremors and dizziness again. And a new one: muscle spasms. My body is acting like I just started taking the Topa, even though I've been on it for several months now.
Luckily, I will be seeing Dr E on Monday. I'm scheduled for my first Botox treatment. I didn't get a phone call from his office today, so presumably my insurance has approved the treatment. (I will be calling first thing on Monday to double-check.) When I see him, I will let him know the trouble I've been having this week, and ask him about the reappearance of the Topa side effects.
So, in honor of NHAW, I've been more aware than ever of the impact migraine disease has on my life. All week I struggled to get through work, and couldn't in fact work a full 8-hour day any day this week. Today I called out; even though my head pain wasn't as bad as it had been earlier in the week, my stomach was in bad shape and I had severe menstrual cramps to boot. And I was just plain tired.
I plan to spend the weekend recuperating - just like I do every weekend. But after such a bad head week, it's even more important to refocus on my body's needs and take care of myself. Everything else will have to wait. Including those youtube videos.
Be well,
MJ
Instead, I've spent the week absolutely miserable, with severe head pain and the whole list of my typical migraine symptoms: vertigo, nausea, stomach pain, diarrhea, phonophobia, photophobia, cutaneous allodynia, sensitivity to smell, depression, difficulty concentrating.
Part of the problem is that I finished a 10-day course of prednisone, which Dr E had prescribed for me in hopes of breaking my months-long migraine. I took a 5-day "burst" of the steroid, followed by a 5-day taper, and I had thought my body was dealing with the drug pretty well. I had some unpleasant side effects that were tolerable. But this week, after coming off of it, was terrible. I had horrid body aches and no energy, making me even more sympathetic to my fibro friends out there.
Oh yeah, and the prednisone didn't break my migraine. I did get five days of low pain, but as soon as I started tapering, my pain climbed right back to where it always is.
Add to that, I'm getting more side effects from the Topamax again, which I don't understand. I've been taking a 50 mg dose - a low dose, even for a migraineur - since March. Suddenly, I'm having stomach pains, worse nausea, tremors and dizziness again. And a new one: muscle spasms. My body is acting like I just started taking the Topa, even though I've been on it for several months now.
Luckily, I will be seeing Dr E on Monday. I'm scheduled for my first Botox treatment. I didn't get a phone call from his office today, so presumably my insurance has approved the treatment. (I will be calling first thing on Monday to double-check.) When I see him, I will let him know the trouble I've been having this week, and ask him about the reappearance of the Topa side effects.
So, in honor of NHAW, I've been more aware than ever of the impact migraine disease has on my life. All week I struggled to get through work, and couldn't in fact work a full 8-hour day any day this week. Today I called out; even though my head pain wasn't as bad as it had been earlier in the week, my stomach was in bad shape and I had severe menstrual cramps to boot. And I was just plain tired.
I plan to spend the weekend recuperating - just like I do every weekend. But after such a bad head week, it's even more important to refocus on my body's needs and take care of myself. Everything else will have to wait. Including those youtube videos.
Be well,
MJ
Tuesday, May 6, 2008
eye of the storm
Tonight marks one week since I reduced my dosage of Topamax to 50 mg from 75 mg. This past weekend I actually felt decent. Not "good", really, I never feel "good". But decent. I can live with that.
My moods have leveled out. The depression has lifted. It's not gone, and I don't expect it to be until my migraines are under better control. But I can live with this more mild depression, rather than the severe and suffocating version I had been feeling more often up until last week. Luckily the weird anxiety I had settled down after a few days. Some of the other side effects from the Topa are still sticking around, but I don't expect them to disappear magically.
The other good news is that my head pain has been noticeably better the past few days. Aside of yesterday, when it reached a 7 out of 10 - which was directly attributable to the hours I spent under buzzy fluorescent lights at two doctors' offices - my pain has largely stayed in the 4-6 range. It's normal for me to wake up with pain around a 4, which then progresses throughout the day, maxing out around a 6-7 and topping out at 8 or more about once a week or so. Last month I had a whole string of pain days that hit an 8 and I was miserable. Compared to that, I'm almost carefree.
I have to be very careful not to overdo it though, or I'll just end up doing my head in with some worse pain.
I'm wondering if the Topa might be kicking in a little bit. I don't want to jinx myself and end up with bad pain again, but I'm going to pursue this line of thinking for a minute. I've been taking the Topa since the end of February. I was on the 75 mg dose for six weeks before I had to cut it back. It can take up to three months for a preventive to start working. At this point, I don't think it's possible for a medication, any medication, to break this long migraine cycle I've been in since November. I do believe I need much more aggressive treatment, whether in the form of IVs or steroids or something else, before my pain will actually stop. But that doesn't mean the Topa might not reduce my pain some in the meantime. Hey, I'll take it.
I still plan to have a discussion with my new doctor about the Topa, and whether I should stay on it or not. The side effects I had at the higher dosages were really awful. Hopefully when I see the doc on May 21, I'll have a better idea of if my body can tolerate the lower dose of Topa and if it is doing anything for me.
It's also entirely possible this is just one of those "normal" cycles this migraine seems to go through, and in another week or so I'll be in absolute misery, curled up on my couch, whimpering. Hey, it's happened before. I'll hope for the best while I prepare for the worst - that's all we migraineurs can do sometimes.
Whatever the reason, I'm trying to enjoy this relative reduction in my pain without questioning the why. I've learned that the best thing I can do is keep good daily records of how I'm feeling, and do the interpretation with my doctor's help later.
For now, though, it's nice not to have an icepack tied to my head. I may have to get one out in another hour or so, but that's an hour later than I did last week.
My moods have leveled out. The depression has lifted. It's not gone, and I don't expect it to be until my migraines are under better control. But I can live with this more mild depression, rather than the severe and suffocating version I had been feeling more often up until last week. Luckily the weird anxiety I had settled down after a few days. Some of the other side effects from the Topa are still sticking around, but I don't expect them to disappear magically.
The other good news is that my head pain has been noticeably better the past few days. Aside of yesterday, when it reached a 7 out of 10 - which was directly attributable to the hours I spent under buzzy fluorescent lights at two doctors' offices - my pain has largely stayed in the 4-6 range. It's normal for me to wake up with pain around a 4, which then progresses throughout the day, maxing out around a 6-7 and topping out at 8 or more about once a week or so. Last month I had a whole string of pain days that hit an 8 and I was miserable. Compared to that, I'm almost carefree.
I have to be very careful not to overdo it though, or I'll just end up doing my head in with some worse pain.
I'm wondering if the Topa might be kicking in a little bit. I don't want to jinx myself and end up with bad pain again, but I'm going to pursue this line of thinking for a minute. I've been taking the Topa since the end of February. I was on the 75 mg dose for six weeks before I had to cut it back. It can take up to three months for a preventive to start working. At this point, I don't think it's possible for a medication, any medication, to break this long migraine cycle I've been in since November. I do believe I need much more aggressive treatment, whether in the form of IVs or steroids or something else, before my pain will actually stop. But that doesn't mean the Topa might not reduce my pain some in the meantime. Hey, I'll take it.
I still plan to have a discussion with my new doctor about the Topa, and whether I should stay on it or not. The side effects I had at the higher dosages were really awful. Hopefully when I see the doc on May 21, I'll have a better idea of if my body can tolerate the lower dose of Topa and if it is doing anything for me.
It's also entirely possible this is just one of those "normal" cycles this migraine seems to go through, and in another week or so I'll be in absolute misery, curled up on my couch, whimpering. Hey, it's happened before. I'll hope for the best while I prepare for the worst - that's all we migraineurs can do sometimes.
Whatever the reason, I'm trying to enjoy this relative reduction in my pain without questioning the why. I've learned that the best thing I can do is keep good daily records of how I'm feeling, and do the interpretation with my doctor's help later.
For now, though, it's nice not to have an icepack tied to my head. I may have to get one out in another hour or so, but that's an hour later than I did last week.
Wednesday, April 30, 2008
my torrid love affair with Topamax
I'm currently on my third trial of Topamax, one of only four medications that has been approved by the FDA for use as a migraine preventive medication. I have taken Topamax twice before. The first time was for two and a half years in college, which was a great success, and in fact is the reason I was able to finish college on time. The Topa got rid of my chronic daily headache within a week of me starting the 25 mg dose, and when I increased to the 50 mg dose I only had one or two migraines a semester. The difference in my quality of life was amazing. After I graduated, my neuro at the time suggested I titrate off of it to see how I would do.
I didn't do very well, and I've been looking for a preventive regimen ever since.
Neuro #2 had me try Topa right off the bat. This trial (#2) was for two months in the beginning of 2007. I had a few days where it seemed the Topa might be working, but my CDH came back, and my neuro and I decided to discontinue it in favor of other drugs.
When I saw neuro #3 at the beginning of this year and she reviewed my history, she noted that I had only been on the Topa for about two months, which wasn't long enough for a fair trial. Preventives can take up to three months to start working. A long time to wait while you're in pain. At the time, I didn't know it could take that long so I didn't push the issue. Knowing more now, when neuro #3 suggested I give the Topa another trial, I was willing to do it, since I had such great success with it in college.
Well, I started the Topamax in February, and it's been a bit of a wild ride.
Neuro #3 had me on a pretty standard titration schedule - start with 25 mg, increase to 50 mg after the first week, then 75 mg after another two weeks. At 25 mg, I didn't notice many side effects. At 50 mg, I noticed some, but they were expected: taste changes, dry mouth, cognitive issues after a few weeks, lessened appetite. At 75 mg, new side effects cropped up that I never had had before: tingling, hair loss, tremors, nausea, stomach pains. Nothing intolerable. I stayed at this dose for about five weeks, as my migraine cycled worse and I generally felt unwell. The side effects seemed to level out, so I kept with the Topa.
After I fired neuro #3 and had a particularly bad week of pain, I called my PCP out of desperation. She suggested I increase my dose to 100 mg to see if that would make a difference before my appointment with neuro #4 next month. I decided to give that a try, but after a weekend of new and frightening migraine symptoms, I decreased the dose again to give my body a break. This was ten days ago.
Since then, I've been developing new side effects. The tremors and tingling that started at 100 mg haven't completely gone away. The nausea and lack of appetite have gotten worse. Still I stuck with it, hoping the side effects would ease, especially since the last few days have been relatively low-pain.
Except the last few days, I've started to wonder if the Topa is contributing to my moodiness and depression. Last night, when I had a weird and very out-of-character anxiety episode, I knew it was the Topa. So today I decreased my dose to 50 mg once again.
It's really amazing to me that a drug that my body once tolerated so well, and that was so successful for preventing my CDH and chronic migraines is now treating my body so poorly. Hopefully I'll feel better in a few days after the higher dosage is out of my system.
When I see neuro #4 in three weeks, I plan to tell him that I don't want to continue on the Topa (or the nortriptyline I'm also taking - but those side effects pale in comparison to the recent issues with the Topa). I hate giving up on a drug like this, but I can't put up with these side effects.
While I know that every medication that doesn't work is one step closer to finding one that will, it's hard not to feel at least a little bit like a failure when one doesn't work out - especially when it's such a spectacular failure.
I didn't do very well, and I've been looking for a preventive regimen ever since.
Neuro #2 had me try Topa right off the bat. This trial (#2) was for two months in the beginning of 2007. I had a few days where it seemed the Topa might be working, but my CDH came back, and my neuro and I decided to discontinue it in favor of other drugs.
When I saw neuro #3 at the beginning of this year and she reviewed my history, she noted that I had only been on the Topa for about two months, which wasn't long enough for a fair trial. Preventives can take up to three months to start working. A long time to wait while you're in pain. At the time, I didn't know it could take that long so I didn't push the issue. Knowing more now, when neuro #3 suggested I give the Topa another trial, I was willing to do it, since I had such great success with it in college.
Well, I started the Topamax in February, and it's been a bit of a wild ride.
Neuro #3 had me on a pretty standard titration schedule - start with 25 mg, increase to 50 mg after the first week, then 75 mg after another two weeks. At 25 mg, I didn't notice many side effects. At 50 mg, I noticed some, but they were expected: taste changes, dry mouth, cognitive issues after a few weeks, lessened appetite. At 75 mg, new side effects cropped up that I never had had before: tingling, hair loss, tremors, nausea, stomach pains. Nothing intolerable. I stayed at this dose for about five weeks, as my migraine cycled worse and I generally felt unwell. The side effects seemed to level out, so I kept with the Topa.
After I fired neuro #3 and had a particularly bad week of pain, I called my PCP out of desperation. She suggested I increase my dose to 100 mg to see if that would make a difference before my appointment with neuro #4 next month. I decided to give that a try, but after a weekend of new and frightening migraine symptoms, I decreased the dose again to give my body a break. This was ten days ago.
Since then, I've been developing new side effects. The tremors and tingling that started at 100 mg haven't completely gone away. The nausea and lack of appetite have gotten worse. Still I stuck with it, hoping the side effects would ease, especially since the last few days have been relatively low-pain.
Except the last few days, I've started to wonder if the Topa is contributing to my moodiness and depression. Last night, when I had a weird and very out-of-character anxiety episode, I knew it was the Topa. So today I decreased my dose to 50 mg once again.
It's really amazing to me that a drug that my body once tolerated so well, and that was so successful for preventing my CDH and chronic migraines is now treating my body so poorly. Hopefully I'll feel better in a few days after the higher dosage is out of my system.
When I see neuro #4 in three weeks, I plan to tell him that I don't want to continue on the Topa (or the nortriptyline I'm also taking - but those side effects pale in comparison to the recent issues with the Topa). I hate giving up on a drug like this, but I can't put up with these side effects.
While I know that every medication that doesn't work is one step closer to finding one that will, it's hard not to feel at least a little bit like a failure when one doesn't work out - especially when it's such a spectacular failure.
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