Rash-onalizing a new medication

At my recent visit to the new neurologist, he prescribed a new preventive med for me to try: Lamictal (Lamotrigine). This is an anti-epileptic drug that’s also used for bi-polar disorder. But like many meds used to treat migraine, it’s use is off-label to treat migraine with aura.

I’ve done a fair amount of research before decided to start the drug. When desperate, I’m not always so vigilant about this, but this drug comes with a large scary warning label: THE RASH. Along with some other anti-epileptic drugs, Lamotrigine can cause Stevens-Johnson Syndrome, which is a serious rash that can be deadly. So scary! It didn’t help that the way the doctor described this risk was less than reassuring. So, I filled the prescription but have yet to start taking it until I’ve felt fully comfortable with it.

After doing some research, I think I’ll take the jump. It’s important to build up the drug very slowly. People who build up quicker than prescribed seem to increase the risk of the rash significantly. I am very good at taking meds as prescribed, however, so I will not be doing that. I also wanted to wait until the hives I’ve been having on my hands for the past couple months went away completely. I got stung by a wasp back in February and started developing hives on my hands every day or so. After getting some prednisone from my allergist, the hives have slowly dissipated. But I didn’t want that lingering while I started on a new med that’s said to cause rashes.

I know I have to be hyper vigilant about recognizing a rash on my body and take action right away if I get one. The risk is fairly low but the benefits have the potential to be very high. The studies that have been done on this drug for the treatment of migraine with aura have been quite amazing… like miracle drug amazing. As long as I don’t get THE RASH, the drug has the potential to greatly decrease my auras and headaches too. We shall see…

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E.R. visit in a blizzard

I’ve recently hit a low point in my struggle. Two weeks ago, I had perhaps the worst migraine I’ve ever had, or at least the worse in some time. A storm system moved in, and though I’ve never been able to establish a strong connection to weather, this time a blizzard as well a migraine caused me to hunker down for a couple days.

The week had started out a little funky – Monday morning I was tired and my eyes did the weird thing of involuntarily crossing for a few minutes. It hadn’t happened in years, and it’s always really scare when it does. I also started to see quick flashes of light shoot across my vision, like a shooting star. Hours later, on my way home from work, I got an aura but no migraine – what I call a “false alarm”. The next day felt like deja vu – as soon as I got home I got an aura. This time, however, the migraine came. Then the blizzard came, and despite me taking my usual triptan, the head pain continued to get worse throughout the day. In the evening, I had my nurse – aka boyfriend – give me a shot of Toradol. This usually does the trick, but not this time. At about 10 p.m., I decided to go to the E.R. The streets were covered in a foot of snow and not another car in sight. The E.R was empty and a team of nurses and swooped me up and pumped a cocktail of drugs through my veins. I had always heard horror stories of migraineurs going to the E.R., but I fortunately wasn’t undermined and instead appropriately treated. Migraine finally at bay, it took my body the entire next day to recover. I continued to get false alarms and the shooting stars for days after.

The following week I had my first appointment with my new neurologist. Initially, I was skeptical. The doctor had a think European accent and odd mannerisms. I quickly realized, though, that this man knows what he’s talking about. It’s hard to find doctors who specialize in headache, but this doctor told me right away that migraine fascinates him more than any other condition. I believe he was equally impressed with how knowledgable I am on my own condition (I don’t understand people who aren’t). I’d cite a study, and he knew exactly what I was talking about, and vice versa.

The doctor spent more time with me than any other doctor I’ve ever seen. He asked me a gazillion questions about my medical history. He brought up things that I never thought to even be related to my migraines. Then, we discussed theories of what actually happens in the brain during migraine attacks (drawings and all). Next, he did a thorough exam (besides finding my overly sensitive reflexes, all was good). Finally, we discussed treatment options. He recommended starting on a new preventive – an anti-epileptic. He explained the very scary warning associated with the drug and I initially thought, “no way”. The drug, Lamictin, can cause some people to develop a severe rash that can be deadly. But he stressed how helpful he thought it could be in my particular case, and I feel confident that he has a good idea of what my specific situation is. So, I’m considering taking it. He also prescribed another triptan to take as a preventive just during my menses, which I think is a great idea.

I left the office feeling hopeful. I’ve become frustrated, however, with some confusion that seemed to have happened. I was thinking he was prescribing some other drugs, but then they weren’t called in to the pharmacy. And then of course, there’s the regular pharmacy struggles: getting enough pills, getting insurance to cover certain meds, meds being out of stock with no expectation of becoming back in stock, etc. Once I was aware of the issues, I immediately set up my account for the online portal and emailed him, but I’ve yet to get a response. I guess I’ll try again tomorrow.

 

A fighting chance

It’s now 2016. And as I’ve done countless times before, I’m making a resolution to make some changes and take control of this condition.

It had been two weeks since my last migraine. That’s pretty good for me these days. I have begun exercising again. I did a 5-day juicing reboot last week, where I consumed nothing but fruits and vegetables in liquid form. I always get nervous not eating because that’s a trigger for me, but I went the entire 5 days without any headaches except the mild one that’s a normal part of the detox (so I was told). Sure enough, a few days after I started eating actual food again, I got one. But I’ve read about people who’ve eliminated their migraines through juicing, so I’m hopeful. I’ve continued to juice every other day or so this week, including today, but that didn’t seem to matter. I vowed to continue eating a plant-based diet after I stopped the reboot, but that lasted about half a day until I ate some delicious risotto with cheese the next night.

I started meditating again, which has been an on-again, off-again battle for the past 10 years. I know that I really want to become good at it, but I struggle to make it a habit. Habit-forming is hard I know, and a meditation habit is probably the one I’ve struggled with the longest. But I know the benefits are worth the effort.

I finally ventured over to the Thai massage place a block over from our apartment and had an excellent Thai massage — the first I’ve had in the states.  I’ve decided I’m going to once again make massage a regular part of my routine and not feel guilty about the cost, for the sake of my health. I spoke with the owner about cranial sacral massage, which is touted as being excellent for migraineurs. She knows cranial sacral technique, and asked if I’d found it helpful in the past. I admitted I hadn’t really given it enough of a shot to know.

I’ve sensed a pattern in myself. I anxiously look for methods to alleviate this condition that’s plagued me for half of my life, but in that attempt I rarely give anything enough of a chance to know if it’s actually working or not. Before I really try anything for an adequate amount of time, I’ve already given up and moved on to something else… desperately hoping for that next thing to be “the cure”.

This year — to add to my already-long list of resolutions — I’m vowing to try new things in hopes of finding what works, even if it’s in the short-term. And I know that in order to do that, I have to give attempt a fighting chance. Because really, all I’ve got is time.

The dreaded call

As I called in to work on my third week of a new job, I said the dreaded words: “I have a migraine; I can’t come in today.” And then I thought of all the worst possible things my boss could think about that call, partially because I already think he’s unhappy with me (for reasons I can’t figure out), but also because I fear this with every new boss.

Then I remembered that they don’t all think terrible things about me when I first expose my illness. My last job was for a company that actually created a product to help migraineurs (along many other diseases). And once I told them I got migraines, and continued to get them through the course of the next year of working there, I was met will real empathy from my bosses. Because they knew what it was like from working on that project.

And then there was Jana. Jana was my superior at not one, but two, consecutive jobs. I worked for her for 5 years. And because her mom had suffered from migraines for her entire life, not only did she forgive me for calling off repeatedly, she helped me by connecting me with an amazing specialist.

So after today’s call with my new boss, I thought, “Maybe his wife gets them so he knows what it’s like.” I mean, it’s so prevalent that most people know at least one person who suffers from migraines. But then comes the issue of thinking they know a migraineur, when really they just know someone who gets headaches. I can’t even count how many people I’ve met who say they get a migraine a couple times a year, or they had one once a long time ago, or they get them every day but they just take tylenol, so they know what it’s like. But as people who’ve actually been diagnosed with migraine know, migraine isn’t just “a headache”. I get headaches too — in fact, I had a headache my entire first week at this new job. But it wasn’t something that was stopping me from doing my work. I don’t even treat those headaches with pain killers. Those are a cakewalk.

Every time someone says they get migraines, but they actually don’t, I think their doing a disservice to the real victims. Because it creates this illusion that migraines aren’t that bad, and aren’t something that should keep people from coming to work and doing their job. This illness is so misunderstood it enrages me. I’m not sure if other migraineurs feel this way, but I feel like I have this illness nobody takes seriously. And so if it’s not bad enough that I have to endure them, what is this doing to my career?

A diary fiasco on a day of thanks

I got the call a few days ago letting me know I was cleared to participate in the clinical research study for migraine drug Lasmitidan. This meant that the next migraine I got I would treat with the study drug and fill out the barrage of questions in the electronic diary I was given. Simple enough.

Leading up to the Thanksgiving holiday gave me little stress. My second week of my new job was going to be a short one, and I was actually really looking forward to a day I usually don’t care too much about. This year I didn’t have to travel but a block away, and I was spending it with my man and new friends I love. I was a bit worried about getting my next migraine on a work day since I just started this job and I don’t want to have to be absent already. Plus, this job is freelance and I don’t get paid if I don’t show up. But the holiday allowed me a four-day break, which would allow a day or two in bed. My period was also scheduled to show up (in all its vile glory) on Thursday — Thanksgiving day — which meant a migraine was brewing. I thought, please just come any day except Thursday.

So of course Thursday morning started with an aura. Now, the instructions given to me were to wait to take the study drug until the aura had passed. This was odd to me since it was opposite of everything I’d been told about taking migraine drugs in the past. But I complied, and began filling out the initial questions in the electronic diary once I’d taken the pills. I was told the diary would be alerting me to complete questions pretty often after I’d taken the drug — 15 minutes, then 30 minutes, then 1 hour, 2 hours, etc., for 48 hours. So I waited…

Nothing happened. I checked the diary and filled out the initial “Migraine” questions again, thinking I’d missed a step. Again, nothing happened. And by this point, my head was pounding and all I wanted to do was sleep, but I was too worried about the diary’s fervent alarm. I consulted my diary reference sheet that was given to me and I realized the diary wasn’t showing the question options it was supposed to. I was enraged.

As someone who works in technology, and currently with user interfaces, I believe in the important of reliability and positive user experience. This was a really bad user experience. As the next couple hours progressed, and my attempt to get the diary to work were unsuccessful, I became livid. I had done the 3-hour consult to get approved for the study, I did the training on how to user the diary, I read all the material. I was the perfect study patient. And now the technology was failing me.

After sleeping for a couple hours, I attempted to push the frustration from my brain and move on to making my pecan pie. I went to my friends’ house, feeling slight pain and severe “foggy brain”. I resolved to enjoy myself and not let the migraine or the diary fiasco ruin my holiday. I did pretty well. I’m not always able to just will that to happen, but the drug worked somewhat well, though I wasn’t able to record any of those results, which is a big shame.

The research consultant is supposed to call me within a couple days of the migraine, but because of the holiday weekend, I don’t expect to get a call until Monday, at which time I’ll have to inform her of the diary malfunction. I’ll probably be disqualified for the study at that point. My mission to help further science will be squandered. I’m not sure I’ll feel compelled to try again.

SAMURAI Study

Yesterday I applied to participate in a clinical study. This is a first for me. The study, dubbed SAMURAI, is for a new medication called Lasmiditan by a pharma company called CoLucid.

Upon my initial phone call, I was approved for participation. Now, I have to go to a participating doctor office (next week) to get the final approval and sign my health away. I attempted to be part of a clinical study once years ago but was denied. Many of them require chronic migraine – meaning 15 or more days a month. For this particular study, participants must have between 3-8 migraines per month. This falls perfectly into my current pattern.

From what I’ve read, this drug is a member of a class of drugs called “ditans”, which “penetrates the central nervous system and selectively targets 5‑HT1F receptors expressed in the trigeminal nerve pathway.” This can be helpful for people with heart conditions who aren’t able to take triptans. This doesn’t include me (my heart is just fine) but triptans aren’t the wonder drug for me as they are for so many others. So I’m always anxious to hear about new possible players.

Yes, I realize that participating in this study is a bit risky for a few reasons.

  1. This drug has not yet been approved by the FDA (hence the need for the study). However, I do know there’s already been 7 successful clinical studies, including a Phase 2B trial. Now begins Phase 3.
  2. This is a double-blind, placebo-controlled study, meaning there’s a good possibility that I won’t even get the actual drug and I’ll get a placebo instead.

I’m rationalizing these risks knowing that I don’t have many good reasons not to do this at this juncture in my life. First, I don’t have health insurance. This means that I can’t go see a specialist for my migraines right now anyway. So this will give me the opportunity to get some kind of care, at least. Second, I’m almost out of my medicine anyway and can’t get more without insurance. Meaning: even if I get the sugar pill, it’s no worse than not taking the meds I don’t have anyway. And if nothing else, at least I’ll be compensated.

I’m anxious to see what this doctor tells me next week.

And so it begins

I’ve tried blogging before, and surmised it wasn’t for me. Perhaps the topic had something to do with that. Though I do love cats, maybe that just wasn’t enough to keep me motivated to write about them on a continual basis.

This time around, the motivation has come to me, like a relentlessly rude neighbor who continues to stomp around the apartment above my head, despite requests for them to be so kind as to stop. This time around, I can’t deny it.

Migraines have plagued me for half my life. They go back so far that I can hardly remember the years when I didn’t have them. The frequency has remained fairly consistent for the majority of this time – except for little upticks here and there. I’m currently in the hairy mist of one of those times. I’ve had 7 migraines in 7 weeks. I recognize that this is nothing compared to what some migraineurs endure. But for me, this is bad. Real bad.

So, I lament.