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

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

overcommitted and overwhelmed

I've been having a tough time lately. I feel like I say that a lot, but it's the truth. Dealing with my Migraine is difficult enough; add in the normal life stuff and it gets to be too much.

It is all I can do right now to go to work for 40 hours a week, and keep up basic maintenance of my health: sleep, diet, drugs. Add to that, the supplementary health stuff: doctor's appointments, phone calls to my doctors, managing my mental health, support group (MMC forums). Then all the "normal" stuff: relationships with DBF and my family, errands, bills, money, social obligations, email, reading blogs.

It's enough to make anyone tear their hair out, especially when it seems like tearing my hair out may temporarily distract from the pain of my Migraine.

I haven't even added into that list the things I want to do: vacations, trips, dinners out with friends, volunteering. Anything that will get me off the couch and out of the apartment.

Over and over, my body tells me: NO. You cannot do this or you will pay.

Back in February, the president-elect of our local chapter of AIA (American Institute of Architects) called me up and offered me the nomination as Associate Director of the Board. This is a very prestigious position, rarely offered to someone as young as me. My responsibilities include helping to steer the direction of our local AIA for my one-year term, participating in monthly meetings as well as meetings on hot-button issues, attending frequent AIA events, representing the young contingent of the AIA, and coming up with a project to work on during my one-year term. I accepted this position without hesitation, as it offers me an opportunity I've been dreaming of. Uncontested, I was officially recognized as one of the new Directors in June, and my term starts in September.

But how on earth will I be able to do this?

I had hoped, prayed, expected, assumed that by September my health will be better. But it won't be. It isn't. I can barely squeeze out a 40-hour week most weeks. How can I work as much as I'm supposed to and put in all this volunteer time? I don't think that I can.

When I was in college, pursuing my degree in architecture, I pushed myself beyond all reasonable limits to finish studio projects, finish research papers, finish courses. I graduated on time (5 years) with a double-minor, a year abroad, and enough credits for 7 years' worth of schooling. I look at that, I look at all I achieved, and I look at now. I should be able to just push through this, I think to myself. Look at all those all-nighters in school. Look at the impossible things I accomplished. Why can't I just do that now?

Because I'm sick. Even though my health first spiraled out of control in college (third year), the Topamax my first neuro prescribed worked within 2 weeks. And it worked for me the whole time I took it in college.

The obvious answer here is that when I'm healthy, I can just push through and accomplish anything I need to. When I'm sick, I can't. I need to lower my expectations and stop holding myself to such impossibly high standards. But it feels like I'm giving up.

I'm really torn about this AIA thing. I desperately want the chance to make a difference in the architectural community in my city. I would love the experience of working one-on-one with some of the (local) tops in the field. I already know what project I want to work on. But is it fair to myself, to AIA, if I don't have energy to dedicate to what I need to do? Will giving up on this feel too much like giving up? So many questions, and not enough answers.

I've already streamlined a lot of my life, gotten rid of many extraneous stresses. I've gradually withdrawn other committments, postponed my licensing exam schedule so I have more time to find a good treatment plan. I've given up so much and still my body says, not enough.

The one thing I want more than anything else, is a return to some bit of normalcy in my life. Everything feels chaotic, subject to the whims of my head. Will today be a good day or bad day? Will the Migraine control everything, or can I ignore it for a while. And the underlying question: when will I break this Migraine? When will the pain stop? Will I have to live with this screwdriver in my eye socket for the rest of my life?

If I don't do this now, when will it ever happen? What if I never get better?


(Much more to write, but my head is telling me it's time to get off the computer. The story of my life.)

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

asking for help

Growing up with a mother as a therapist, I never doubted the efficacy or necessity of therapy, nor did I ever attach any sort of stigma to therapy.

Why, then, can it still be so hard to ask for help?

I've seen therapists four times in my life now. The first was over a summer while I was in college, to cope with some issues I had with my father. The second and third were during college, for much the same reason. The fourth was last summer, when I saw a counselor through my Employee Assistance Program (EAP). I had three sessions covered completely by my insurance, and needed a "boost" to get through the combination of neverending illness and the big life change of DBF moving in with me.

I have no doubt that traditional psychotherapy has helped me very much in the past. I have mild depression when my migraines are in a bad cycle, which has been particularly tenacious now that my migraines are really out of control. But I still put off calling my new EAP for a therapy referral for months.

It can be really difficult to ask for help. It's hard enough to ask DBF for help, to get me a glass of water, to make me some tea or even to come to the doctor with me. It's even harder to make a phone call to find a therapist. Is there something wrong with me, that I can't cope with this on my own?

Of course not.

Chronic illness is difficult to cope with because of its chronic nature. Chronic means, it isn't just going to go away after one treatment. It means, in my case, I will always be a migraineur. This disease is something I will always have to manage, whether with aggressive treatments and preventives, or simple relaxation techniques and acute treatment.

My particular situation has been difficult because I've had constant, daily migraine pain since sometime in November. Before that, I had daily pain from migraines or chronic daily headache. I've been in some sort of daily pain for two years now, since I first titrated off the Topamax I took all through college. Daily pain and generally feeling sick from my other migraine symptoms is enough to wear anyone down. The depression hand-in-hand with the migraines is, well, depressing.

Plus, I'm young. I'm at a time in my life when I'm establishing my career and social life. I moved to a whole new state just two years ago, where I've had to establish new ties and a new life. Balancing this with coping with chronic illness is too much for me at times.

Nothing I'm saying here I didn't know. It was still difficult for me to pick up the phone and call my EAP. But I've done it, and I feel better already. Hopefully I can get my first therapy appointment before DBF and I leave for vacation on Thursday.

Ah, yes. Vacation. DBF and I are going away for a week to our company's timeshare condo right on a lake only a few hours from here. We plan to have a relaxing week away, and since it's just the two of us, there's no pressure. The condo has a kitchen, so sticking to my restrictive diet shouldn't be too much of a problem.

So that's where I am. Therapy = good. Vacation = awesome.

Be well,
MJ

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:

"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

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

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 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.

(IV) drugs? yes, please

This week was rough, even by my high pain tolerance standards. I started the week with a bout of depression, which isn't unusual for me. Migraine and depression are comordid conditions, meaning the two often exist together but one doesn't necessarily cause the other. In my own experience, I tend to have mild depression when my migraines are out of control, with occasional more severe depression.

That's what happened earlier this week. Depression bad enough I didn't even want to get out of bed and go to work. I knew it was the migraine beastie, zapping my serotonin levels, but knowing it doesn't ever make it go away. It mostly passed by Wednesday, just in time for a couple nights of severe pain.

Both Wednesday and Thursday nights the pain was bad, up to an 8 out of 10, and with some bad dizziness and nausea. I had exhausted my week's allowance of Imitrex, an abortive medication, which my doctor has me combine with ibuprofen to increase its effectiveness. I can only take
Imitrex two to three times a week before I risk medication overuse headache (MOH). Because my pain is daily, I have to carefully track when and how often I take any abortive medication. So I was stuck with nothing but my comfort measures - ice pack, essential oils, Altoids. I also have promethazine (generic for Phenergan), an anti-nausea med, that I can take.

This morning I called my fired specialist's office to see if I could get in for an IV infusion treatment. I had tried this once before earlier this month, and while it didn't get rid of my pain (nothing has), it did get it down to a much more tolerable level. The first time, I had DHE, Toradol and Reglan for the nausea. The Reglan gave me awful anxiety, and made me woozy.

My appointment was scheduled for 1:00, but they didn't take me back to the exam room until almost 2:00. Let me pause here to say one of the things I hate most about this clinic is that there are fluorescent lights everywhere. Being in the architecture field, I can understand more than most why this clinic would have ended up with them, but they haven't done anything to mitigate the problem. At the very least, they could have put some desk lamps in the exam rooms or something. Nope. Instead they will turn off the lights for you if you ask, but then they have to leave the door open so it's not pitch black in the rooms. (HIPAA issues, anyone?)

This time I made sure to ask for a different anti-emetic, and they gave me Phenergan. I didn't get the anxiety, but the wooziness was worse and it actually made me more nauseous. So they tried Zofran, a med usually used for chemo patients, but with a much better side effect profile. Bingo! Now I know which one to ask for. I also got Toradol and DHE, same as last time. The nurse who did my infusion this time was much more experienced than the one who did it last time, so she infused the meds more slowly and with more time in between than the first time I went. I napped for a little bit while I was there, since the Toradol and Phenergan both made me sleepy. I didn't leave there until 4:30.

DBF was kind enough to come with me this time. He sat with me the whole time, talked with me, and held my hand. He went to find a nurse when the side effects from the Phenergan were making me feel sick. When we came home he got me settled on the couch in the living room and sat with me for a few minutes until I fell asleep, and warmed dinner up for me.

My pain isn't gone, of course. It never is. But it is down to a 2, which is lower than it ever is on its own, and lower than I can get it with any of the meds I have on hand. I think I may talk to my new specialist about injectable DHE as an abortive option. (I'm putting it on my list of questions right now.) I have a new Relpax prescription waiting for me at my pharmacy that I will also be trying next week.

It's nice to have some relief tonight, after a particularly tough week of depression and severe pain. I don't know how long it will last. Last time I only got about 8 hours, but even that was a nice break. I'll be seeing my new specialist in about a month, which, all things considered, isn't too far off.

That's all for now. Here's hoping for a low-pain weekend.

-MJ