fluctuat nec mergitur*

* "She tosses on the waves but does not sink".


I remember when I spent a semester living in Paris during college, I frequently took comfort in this phrase, the motto of the city of Paris. I had a lot of trouble there with culture shock and the language barrier, even though I spoke quite a bit of French when I went. Now that I'm struggling, again, in troubled waters - this time because of chronic illness - I find myself coming back to this phrase.

November proved to be one of the hardest months of the year. The first three weeks I felt tossed around by the weather coming through, wave after wave of storms. We set all sorts of records for rainfall, and not surprisingly, the November storms brought huge wind and dramatic pressure changes. A perfect storm for Migraine misery. I spent three weeks doing nothing but my part-time job (a paltry 18 hours a week) and laying on the couch, and remembered how awful it is to be so sick.

The third week of storms, I decided to increase the dosage of acetazolamide, as Dr E had advised I could do. I lasted four days at that dose. It's hard to tell, but I want to say it made my head pain worse. I say it's hard to tell because I was already feeling so bad that it was difficult to tell what pain came from which trigger.

And when things began to look up, when the storms calmed and I stopped the higher dose of acetazolamide, when my mom came into town for Thanksgiving, I was tossed by yet another wave. My boss called me the Sunday night before Thanksgiving to let me know he was laying me off, because he just couldn't afford to keep paying me anymore. And to add insult to injury, the unemployment office is "reviewing my claim" and hasn't paid me in over a month.

The past few years have been an exercise in treading water and just trying not to drown in the stormy waves of chronic illness, constant pain, debilitating Migraine symptoms, adverse effects, depression, anxiety, unemployment, financial strain, frustration, stress. While my pain levels have undoubtedly improved over the past year, my emotional state has gotten worse.

I'm ready for this bad cycle to end. I'm ready for some good news. I'm ready for some smooth sailing. But I clearly don't get a choice in the matter. Chronic illness (and unemployment) is all too good at reminding us how little in life we can actually control; I'm left trying to weather this storm, trusting that I won't sink.


Be well,
MJ

Image courtesy of Wikipedia.

slowing down

If my Migraine disease has taught me anything - and continues to teach me anything - it's the value of slowing down.

We talk about slowing down all the time when we discuss chronic illness. Being chronically ill requires us to reserve our energy for those things that really matter, to evaluate what we can and cannot do based on how our bodies feel. While initially upon being diagnosed we can fool ourselves into thinking we can still operate our lives at "normal" speed (whatever that means), eventually our bodies demand us to make some hard decisions.

On an even more basic level than that, time slows down with pain. My Migraines and IIH together mean I'm in constant pain. Coping with that pain can slow down time - can you remember a time when a painful injury made it feel like an eternity until that pain was relieved? Chronic pain has a funny way of altering one's perception of time.

Slowing down also takes shape in the way we carefully consider choices where others might make snap decisions. Should I go out tonight, or stay in? If I get off the couch, will my symptoms feel better or worse? What is the best thing for me to eat tonight, based on how I'm feeling? If I take a shower in the morning, will that make it more difficult to get through a full day of work? Should I shower at night instead? How can I dress myself to go out so I'm comfortable but still feel stylish? Stopping to consider every little incidental action slows us down.

Since yesterday was Saturday, that meant a weekly trip to one of our local farmers' markets. DF and I buy the vast majority of our food directly from farmers. (There's quite a large backstory here, which I plan to post about in the future. The short version of our reasoning is that it's the cheapest way to get the quality of food I need to eat to help manage my multiple illnesses.) The seasonal market we used to go to ended at the beginning of October, so we're now going to a year-round one; since DF was working on Saturdays I got to go myself. Which was a nice change from our usual habits.

Yesterday I wasn't feeling very well because of some stormy weather that had passed through the night before. My body soon told me to slow down, a not-so-gentle reminder that even when I think I'm taking it slow, my body has ideas of its own. So I found myself in one of the farmers' stalls, surrounded by fresh produce, deeply breathing in the wonderful smells of earthy, spicy fall vegetables. Mmmm. And I found myself smiling despite how crappy I felt.

When illness and pain try to steal everything from my life - friends, family, health, happiness, fun - I find myself eventually refocusing on those things that are most important to me, and those simple things that bring me joy. In a world complicated by medications, symptoms, doctors, hospitals, treatments and bills, it is incredibly refreshing to enjoy the simple beauty of the first winter squash of the season. That joy doesn't make the pain and illness go away, but it does give me a way to step outside myself, even if just for a minute. And it gives me a moment of slowing down.


Be well,
MJ

climbing back on the horse

It's no secret to me - or anyone who's been following my blog - that I've been having a really tough time lately. My mother keeps telling me, don't despair. Chronic illness is certainly difficult enough to deal with all on its own, but add in the unemployment and sometimes (often) it is just too much to cope with.

My Depression and Anxiety issues have gone from lurking on the horizon to ominously looming over my daily life. I can squeeze out a few hours here and there throughout the week when I feel okay, or even happy, but sure enough the gloom comes back. Like dark, sticky cotton candy.

It seems like each week brings more difficulty to deal with. DF found out that the last day of his seasonal job is October 31; after that, he'll once again be unemployed with no new prospects. (At least this time, there was notice.) A few weeks ago, I quit one of my part-time jobs after it became very clear that the increased Anxiety was not worth the measly paycheck. And as I posted last week, there was the massive failure of my recent medication trial. Everything just keeps piling up. 

In the midst of all this upheaval and getting used to a new work schedule, I've let some components of my treatment lapse. I haven't had a massage in several months; I had been going weekly. I've pretty much stopped keeping my headache diary. Last week I even skipped my Nia dance class because I still had the citalopram in my system. I've given myself permission to stop keeping my headache diary, as right now it's causing more stress in my life. I plan to start keeping it again either when I start another med or the beginning of the new year (whichever comes first). I have a follow-up appointment at the end of March with my headache doc, so even if I don't restart my diary until January, I'll have three months of records to show him.

Massage is a different story. I know it helps me to feel better by releasing the tension in my neck and shoulders, even if it doesn't directly help my Migraines. It's silly, really, that I haven't just called and scheduled an appointment, but in the murk of daily life it's easy to avoid making phone calls.

So, my goal for this week is to make that call and restart my weekly massages. I'm focusing on not being hard on myself for ignoring this part of my treatment plan. It's difficult to continually put so much energy into an intensive treatment regimen that seems to offer little return. But every little bit does help, and incrementally I hope I'll improve.

A big part of being able to cope with chronic illness is setting small, achievable goals and recognizing when I achieve them. I know this, but I'm writing it here to remind myself. This week's small goal is scheduling a massage appointment. Hopefully I'll start to overcome this inertia, this feeling of wallowing, by taking that first baby step. Then I can look at my other goals (adding a weekly tai chi class, for example) and start working toward those.

And maybe, just maybe, the regular massages will start to chip away at my stress.


Be well,
MJ

side effects and self-doubt

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

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

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:

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

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

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

returning to the complementary medicine fold

I posted earlier this month about the options that Dr E gave me regarding my treatment, mainly to try another Migraine preventive, or to go see an herbalist. I decided to take the referral to the herbalist, Dr P. I did not feel mentally ready to trial another preventive med, and I wanted to make sure I was getting the most out of my supplements before I add on prescription meds.

My appointment with Dr P went very well. She spent about an hour with me and gave me a lot of information and ideas.

She thinks that a lot of what's complicating things (and contributing to the strange med reactions) is emotional overload. She did not mean that Migraines are purely an emotional problem; more, she recognized the complex relationship between Migraines, Depression and Anxiety. She thinks a big issue for me is that I don't just allow myself to feel without analyzing - the curse of being a therapist's daughter. I'm very good at figuring out why I'm feeling the way I'm feeling, but not so good at just letting myself feel it. Instead I think about why I'm sad and figure out the reasons for it, but don't let myself just feel sad without the "why". I don't like showing emotions in public, especially at work, so I tend to keep that lid on all the time.

Her main recommendations are that I do some "bodywork" to help put myself more back in touch with my body. She also thinks I need some space to just express emotion without analyzing it. Specifically, she wants me to retry acupuncture, and add massage therapy and dance therapy. I tried acupuncture last year, and while I had some success with it, I felt dissatisfied. She mentioned that the success of acupuncture depends not only on the techniques, but also how the patient "clicks" with the practitioner. This makes a lot of sense, as it holds true for any doctor-patient relationship. Complementary medicine practitioners are no exception.

Dr P had specific referrals for both the acupuncture and dance therapy, and I have a place very close to my office that does medical massage therapy and takes my insurance. While the dance therapy idea seemed a bit strange to me at first, after thinking it over I'm willing to give it a try. When I was younger, I took dance classes (age 4-16) and it was a big part of my life. Dance was my main form of stress relief, and it was very effective. So getting back into dance makes sense, and why not try a more freeform kind. Dr P recommended I try Nia dance, so I'm working on finding a class nearby that works with my schedule. I love the whole philosophy of Nia, and it draws from several movement forms I've practiced in the past, including modern dance, yoga and tai chi, among others.

On top of that, she also changed up my supplements. She had a specific brand she wanted me to change to for my multi, C and B2, and replaced my chelated magnesium with calcium-magnesium. She also added CoQ10 and Petadolex, as well as a live culture form of acidophilus (Primadophilus Optima) for my IBS. She wrote down specific brands and dosages for all of them.

This sounds like a lot of changes at once, and it is, but she thinks I may be better served by doing this at once rather than one thing at a time. She explained that with the holistic therapies, often one thing won't work, or even a combination of five things won't work, but adding a sixth or seventh thing is what allows everything to work together. So by changing my supplements, and adding acupuncture, massage therapy and dance therapy, we're hoping to see some improvement. She (like me) doesn't expect a miracle cure, but hopes this will at least start improving things for me.

It was a lot to think about and absorb. I like Dr P a lot. She seems to have a good balance between western and eastern medicine, recognizing the benefits and flaws of both. I feel good about her recommendations, and like the idea of trying a more holistic approach before I go back to medications. I don't expect this treatment plan to be a magic fix, but I am optimistic that it will help. I see Dr P for a follow-up appointment in 2 months, right at the beginning of January.

I have started both the acupuncture and massage therapy and hope to try a Nia class on Saturday; I will post about all of these in the near future. I've only been following my new treatment plan for a few days, but I can already tell a slight difference in my energy level. I feel more optimistic about this than I have about anything health-related in a long time.

Be well,
MJ

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

choices, decisions and resentment

Having such chronic migraines means, at this point in my life, I'm living with a lot of resentment.

I've talked before about the resentment I feel for my disease itself. Migraines have stolen much from me, and I resent that this disease has taken up so much space in my life. Usually I can use this resentment and anger to keep me going on my path toward getting better.

But I find other resentment in my life as well, which I don't talk about much. In the spirit of honesty and sharing with my readers, however, I'll talk about it now. And that is the resentment I feel toward other people. Before you close your browser window in disgust, please do read on.

It's not that I resent specific people. It's more that I resent (and envy) the carelessness of good health. I see it all the time, the ease with which many others live their lives, blissfully ignorant of the continual attentiveness that is chronic illness.

Most of my energy during the day goes to thinking about and coping with the little challenges I come across. I'll reference here the Spoon Theory, written by Christine Miserandino, the founder of But You Don't Look Sick?, a wonderful site for anyone with invisible illness. Anyone with chronic illness knows the very real challenge of living within your limitations, learning to conserve and use your energy (spoons) wisely. I've found that just to conserve my spoons, or to prevent spending them too quickly, in itself takes a lot of spoons.

This is something that is very difficult for people without chronic illness to understand. I don't (usually) resent them for it, but I do envy the decisions they don't have to make.

A friend of mine once described it like this:

On choice:

Most people simply make their choices and leave the momentous decisions for things like buying a house. It sounds to me like the difference is that simple choices become decisions for you. So in that sense you don't get choices. You're forced to make decisions, and the weight of each decision carries with it a stress load quite unlike that of mere choices. And since other folks don't have that load, they really aren't likely to get how the process affects every other aspect of life. "Well, why can't you just...?" You can never "just..." anything.

And that is the essence of this second type of resentment. I can never "just" anything.

A perfect example: my team is having a BBQ tomorrow after work. Deciding whether or not DBF and I will go has been putting a lot of stress on me. Do I have enough spoons left from the week to do this extra activity on Friday? Will I have the energy to socialize? What will I do about food? I can't eat any of the food being served (hamburger, hot dog, veggie burger) because of my strict diet. Will I have a good time if I go? What won't I be able to do this weekend if I decide to go to the BBQ? How will this affect my work next week - will I have enough energy to make it through the full 40 hours? Questions like this have been buzzing in my head all week. There's no easy answer. I want to go, but I don't know if the cost to me will be worth it. (And I'm not even talking about the $10/person contribution to the food/beer budget.)

Most of the people on my team have not had to face these questions. If I was healthy, it would "just" be a matter of, is my schedule clear? Do I want to go? Yes + yes = go to BBQ.

.::.

Next Wednesday is my 25th birthday, the third birthday I'll have during this current bad migraine cycle. Never did I think I would be sick for so long. I'm trying not to be depressed about it. I will get to spend it with DBF, a wonderful, caring man who has been through so much with me on this confusing and difficult journey. And he's buying me ice cream cake. It's completely against my diet, but I'm not willing to skip it completely. I've had to give up so much already that I just need a slice of normalcy.

Have a good weekend, everyone.


Be well,
MJ

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.