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Brain Fog, Uncertainty, Excitement, Beauty, and Hope

brain-fog-gc-minI’ve spend the last six months traveling in the land of brain fog. It’s a weird level of brain fog. I putter around the house as if I’m thinking just fine, then I sit down to write and my IQ plummets. Although my inability to string sentences together has kept me quiet, I’m actually doing remarkably well. My new treatment is working way better than I could have imagined and I’ve determined that the cognitive dysfunction is almost certainly a side effect from a drug I’ve been able to stop taking.

About My New Migraine Treatment

I’ve been using my new treatment since June 23. (I have to keep it a secret just a little longer. I’m told I’ll be able to tell you about it any day and am so excited that you’ll be the first to know when I can. Know that I’m not holding out on something that could help you now—It’s not yet available, but should be very soon.) The first months were full of heartbreaking lows and exhilarating highs, then my migraine symptoms seemed to settle into a slow and steady improvement. After quitting the ketogenic diet six weeks ago, my improvement became astonishingly swift. I can now eat anything I want. (I have to repeat that: I can now eat anything I want!). I still get a migraine attack every time I eat, but the symptoms are barely noticeable when the treatment works.

When the treatment works… that sounds ominous, but it’s really just part of the ongoing adjustment. Balancing the variables of which foods and how many calories I eat with calibrating the treatment just right is a challenge, especially because I keep trying new foods. When the dose is too low, the treatment dampens the migraine attack without fully aborting it. At too high of a dose, I feel great for an hour or two before a rebound migraine attack hits. However, When Goldilocks is satisfied, I’m high with feeling like myself again.

While these variations are tedious and make my day-to-day symptoms unpredictable, the overall effect is wonderful. You see, the treatment is making me less sensitive to food triggers over time. Once I find the right dose for a particular meal, the treatment works perfectly a handful of times. Then the dose becomes too high for that meal and I have rebound attacks. Then I have to guess at how much to reduce the dose and start the process over. (I’m talking in food triggers because that’s my issue, but the treatment can work for other types of triggers, too.)

On Brain Fog

Given the overall success with the new treatment, the persistent brain fog was frustrating. After dealing with it for months, other symptoms starting creeping up, like increased anxiety and ringing in my ears. When dizziness become another frequent companion, I had an epiphany: Wellbutrin has been the source of all the debilitating bouts of dizziness in my life. My new treatment is also used for depression… perhaps in addition to helping my migraine attacks, it was reducing my depression and making me overly sensitive to Wellbutrin’s side effects. I reduced my dose from 450 mg to 300 mg in January and the brain fog, dizziness, anxiety, and tinnitus reduced. Two weeks later, the symptoms began to resurface, so I reduced the dose again. And again. I’ve been completely off Wellbutrin for a week, the brain fog seems to be receding, and the other related symptoms have abated.

What’s Next? Uncertainty Reduction at the Grand Canyon

As I wrestled with my life’s current excitement and uncertainty combined with a loss of innocence brought on by politics and a family health situation, I imagined myself standing on the edge of a canyon. The phrase “precipice of grief” popped to mind immediately, but it’s message was was muddied by the image of a beautiful canyon. The meaning was unmistakable. Life is scary and full of grief. It is also unbelievably precious and beautiful. To root this belief in my heart and body, I’m going to stand on the glass bridge at the Grand Canyon. The thought terrifies me, but I expect seeing the beauty and confronting my fear will make me stronger than before. (At least I hope so, otherwise my metaphor will fall apart!)

After a busy few weeks of doing the Miles for Migraine race in Phoenix (please join me if you’re in town!), attending a conference at the Mayo Clinic and another for Health Union advocates (that’s the company behind Migraine.com), having my family visit, and recording for the migraine video series I mentioned last week, it’s time to think about the future. What matters most to me right now? Where will I be writing and how much? What roles will I play at TheraSpecs? How will I build my local community now that I’m able to be more active in the world? How else do I want to spend my time? I’m not sure what answers I’ll find, but I’ll let you in on the exploration.

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CGRP Drug for Chronic Migraine: Very Promising Study Results

cgrp-drug-for-chronic-migraineAmgen’s CGRP drug provided significant relief to participants with chronic migraine, according to new study results presented at an international conference in mid-September. The drug, called erenumab, was tested at two doses, 70 mg and 140 mg. “Both doses of erenumab were associated with significant improvements in health-related quality of life, headache impact, disability, and level of pain interference, compared to placebo,” according to Amgen’s press release announcing the study’s results.

Here’s a brief summary of the study’s details and it’s findings.

In the 12-week study, 667 participants were given monthly injections of either the drug, called erenumab, or a placebo. The breakdown was:

  • 191 participants received 70 mg erenumab
  • 190 participants received 140 mg erenumab
  • 286 were injected with the placebo

All participants had chronic migraine. At the start of the study, they had an average of 18 migraine days per month and 21.1 headache days each month. The following outcomes were assessed during the last four weeks of the study.

  • Reduction in migraine days per month: Those who were given erenumab (at either dose) had an average of 6.6 fewer migraine days a month.
  • 50% or greater reduction in the number of migraine days per month: 40% of participants who received the drug at 70 mg and 41% who got 140 mg had their number of headache days decreased by at least half.
  • Reduction in use of acute migraine drugs (abortives): Participants who received 70 mg of erenumab took abortives on 3.5 fewer days; those who received 140 mg reduced their medication use by 4.1 days.
  • Reduction in headache hours: Participants who received 70 mg of erenumab had 64.8 fewer headache hours in the month; those who received 140 mg of erenumab had 74.5 fewer headache hours.

Side effects

No adverse effect was reported in more than 5% of the participants. Those reported were:

  • Injection site pain: 3.7% in participants who received the active drug at either dose; 1.1% placebo
  • Upper respiratory tract infection: 2.6% at 70 mg; 3.7% at 140 mg; 1.4% placebo
  • Nausea: 2.1% 70 mg; 3.2% 140 mg; 2.5% placebo

This yet is another promising report on the CGRP drugs that are in development for migraine prevention. All studies so far have found a notable reduction in migraine frequency and improvement in health-related quality of life for a significant portion of participants. Minimal side effects have been reported thus far. This was a Phase 2 study. Phase 3 studies, which are underway now, will include more participants and give us more information on side effects.

(Amgen has also issued a press release about the first CGRP drug Phase 3 results I’ve seen. Participants in the study had between four and 14 migraine days a month. Those given erenumab had an average of 2.9 fewer migraine days per month. With such a wide range in migraine frequency, it’s hard to tell how impressive that number is. But even for someone with 14 migraine days a month, the average would mean about 20% fewer migraine days.)

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Migraine Medication Detox, Week Two: Transition Period

migraine medication detox“This too shall pass.” Those words provide immense comfort when my migraine attacks are severe and disabling. They have carried me through many difficult years. As encouraging as this phrase can be, there’s a flipside to it: the difficult, trying times in life pass, but so do the pleasurable ones we never want to end. “This too shall pass” means that everything passes.

When I had migraine attacks last Sunday and Monday after having a remarkable few days, I was too busy panicking to remind myself that they would pass. My mind churned on my most fear-filled thoughts: What if my new treatment isn’t working? What if it’s making me feel worse? What if I will never again feel as good as I did these last few days?

Although I was 100% sure I was overreacting, that did nothing to assuage my fears. My worry settled a bit on Tuesday after I stopped the oxytocin (which was definitely a migraine trigger for me), but I continued to fret.

I didn’t remember that this too shall pass until Wednesday. That’s when I finally realized that detoxing from medication overuse headache and trying new meds mean I’m in a transition period. That should have been obvious, but I was so caught up in excitement—and then the fear—for the future that I wasn’t paying attention to the present. I’d forgotten that progress is not linear.

“Transition period” became a mantra of sorts in the last week. When I start to panic, I remind myself that I could still be detoxing from my meds (especially since I gave in to Amerge last Monday) and that the effects of my new treatment tends to build over months. Even more turbulence comes from experimenting with new treatments (Compazine, oxytocin, and some new-to-me preventives), changes in my meal frequency, and introducing new foods. I still have a ton of variables to work out. “Transition period” is now shorthand to remind myself that it will take time to sort out all these confounding factors.

It’s kind of an odd mantra, but I like its hopefulness. It tells me that I’m on my way to somewhere new, somewhere that could be great. (It could also be awful, but I’m not dwelling on that.) This too shall pass. I have no idea where I’ll be when it does. That’s a little scary, but it’s mostly exciting.

Learn more about my migraine medication detox:

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Migraine Medication Detox, Week One: Easier Than Expected

migraine medication detoxMy first week of migraine medication detox began with a final dose of Amerge (naratriptan) and two Midrin after breakfast on Sunday, August 21. Despite a rough start, the week’s been surprisingly easy.* I feel better than I have in almost two years! Here’s how the week of detox went.

The treatments to get me through the week were:

  • Compazine 30 minutes before each meal. Although it’s a nausea med, some people get migraine relief from Compazine. (It only made me tired and helped the nausea; it did not give me any migraine relief.)
  • Oxytocin as an acute medication once a day. (Which I discovered is a migraine trigger for me.)
  • A new treatment I’ve been using since June 22. It is a preventive treatment that can also be used acutely. That’s all I can tell you right now, but will share more as soon as I can.

Day 1: Monday was the worst day by far. I was too nauseated and dizzy to eat breakfast until 1 p.m. and that required dosing with Zofran and Compazine. The pain, which felt cold and high on my head, hovered around a 4 and peaked at a 5, which lasted a couple hours. Ice exacerbated the pain. Thanks to Compazine, I slept from 2 p.m. to 7 p.m. I definitely had a migraine attack in the night and didn’t sleep well (probably because of the Compazine-induced nap).

Day 2: I started Tuesday with a decent amount of energy and little pain. I even showered and did housework before eating. The migraine attack that followed breakfast was slight, but definitely present. Between it and the Compazine, I was laid up until I took a nap. Within 30 minutes of waking from my nap, I was perky and functional. I spent three hours working on chores and even did some writing. All with overcast skies! I once again had a migraine attack in my sleep, but it didn’t keep me up. Night sweats and vivid dreams were the only evidence that an attack happened at all.

Day 3: I switched from taking oxytocin at night to taking it after breakfast on Wednesday. It was a remarkably good day. I slowed down for a couple hours after eating, but am unsure if migraine or Compazine was the culprit. I even ran errands in the afternoon. After dinner was the first time I felt like my new treatment actually aborted a migraine attack! It was also the first night in almost a year where I didn’t fall asleep minutes after getting into bed.

Day 4: I woke up feeling fine Thursday and skipped the pre-breakfast Compazine hoping that I would be less sluggish without it. I used my new treatment after eating and it once again appeared to abort the migraine attack. I felt a little slow for maybe an hour afterward, but was able to write all day. My mind got a little fuzzy in the late afternoon, so I decided to rest. Before I did, I cleaned up a mess in the laundry room and put a coat of sealant on the bathroom tile… and discovered I no longer needed to rest. I finally stopped “doing” for the day at 7 p.m.

The other big news of the day: I ate three meals instead of two! I can use my new treatment three times a day, so I wanted to see if it would abort all three eating-triggered attacks. It did!

I then stayed awake the entire night. It wasn’t one of those maybe-I-slept-maybe-I-didn’t kind of nights. I read and did housework all night long. What kept me up? NOT having a migraine attack. I’m one of those fortunate folks who gets sleepy during an attack. After 17 months of nightly attacks, I think my body had gotten used to using migraine as a sleep aid.

Day 5: Despite not sleeping one wink, Friday was another remarkable day. It was house-focused, including signing the paperwork to have the grass removed from our yard and replaced with waterwise plants. (I’m so excited!) And I finally fixed the mess created when shelves in the laundry room fell a few months ago. Nothing to write home about… except that having a day of normal chores is absolutely worth writing home about.

I’m trying to temper my excitement about how much better I feel (Hart is, too). I feel so different, so much better, that I want to believe the ketogenic diet, my new treatment, and getting out of MOH have made a huge, lasting difference. And maybe they have, but I don’t want to go (too far) down that path until I have more data. I don’t want to be (too) crushed if this improvement turns out to be a fluke. Then again, I know my body really, really well. This feels different. (I might hate myself later for writing those words.)

Day 6: I felt great all day Saturday! I woke up at 8 a.m. and organized the house until 11 p.m. I didn’t even check Facebook. I slept well, too.

Days 7 & 8: Both days started well, but migraine attacks crept up through each morning. Both attacks made me so tired I couldn’t avoid napping. Both times, the migraine attack lifted within 30 minutes of waking up. Napping usually gives me some degree of migraine relief, but it only began aborting attacks completely this summer. I’m still surprised when it happens. (I was so afraid of losing another day that I took one Amerge (naratriptan) as soon as I felt symptoms on Monday. My background headache was more painful that day.)

Day 9: I spent this morning preoccupied with Sunday and Monday’s migraine attacks and obsessing over whether an attack was coming on. As I sifted through potential triggers, I kept worrying that my new treatment is backfiring. Although that is unlikely (I’ve been using it for two months with no problem), it’s my biggest fear, so it’s what my mind settled on. Other possibilities are that oxytocin is a trigger, I’ve developed reactions to some foods I thought were OK, or that merely touching cleaning product bottles now triggers attacks. I went with the oxytocin hypothesis and skipped my dose this morning. I’m going strong at 3 p.m., so I’m guessing oxytocin was the culprit.

Future weeks: Medication overuse headache symptoms can last six months after the final dose. Given how easy my migraine medication detox has been and that I’ve only been using excessive amounts of medications for 16 months, I doubt I’ll have symptoms that long. Still, I’m hopeful that the next few weeks or months could bring even more improvement. Maybe I’ll one day be able to eat without having a migraine attack at all.

*My experience does not represent the typical migraine medication detox. It has been easy because of the preventives I was on before I started (and possibly because I was only in MOH for a year). The drugs I used as a bridge were ineffective—Compazine only made me sleepy and oxytocin made my migraine attacks worse. In the six months before starting the detox, my pain rarely got above a 4 and my most disabling symptoms were fatigue and cognitive dysfunction.

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Migraine Medication Detox: Getting Started

migraine medication detoxI’ve been taking an Amerge (naratriptan) and two Midrin twice a day since April 2015. The medications allow me to function, but have the potential to increase the frequency, severity, or duration of my migraine attacks through medication overuse headache (MOH), which is also called rebound headache. My headache specialist is aware of my medication use. We discuss its potential impact at every appointment and he reiterates that the odds of it being a problem for me are quite low. Although my history showed MOH was unlikely to be a concern for me, I was still concerned. With my doctor’s consent, I persisted taking the drugs because they were the only way I could function.

Since eating anything is my migraine trigger and no preventive medications have been able to address that issue, I feel stuck. Going off the medication is not going to stop eating from being a migraine trigger. But my last visit with my headache specialist got me thinking about the two treatments I’ve been trying this year. One is the ketogenic diet and the other I can’t tell you about yet. Both have helped a small amount, but neither has had a huge impact. They have helped enough that I don’t want to stop either one, but I’m having trouble quantifying the extent of each one. What if MOH is somehow keeping me from realizing the full benefit of either or both treatments?

What if…? When a question like that lodges itself in my mind, I have to learn the answer. My migraine medication detox began last night.

My doctor offered to admit me to the hospital to keep me comfortable through detox. I declined because I don’t think I need it. Instead, I will take Compazine (prochlorperazine) 30 minutes before meals and use an oxytocin nasal spray after the migraine attacks begin. Compazine is known as a nausea drug, but it can also help reduce migraine symptoms. Oxytocin is being studied as a potential acute migraine treatment and could also have preventive effects. If my migraine attacks take a sharp turn for the worse, I’ll add DHE or Migranal to the lineup (assuming they aren’t out of stock). I have the option of starting another preventive at the same time, but think I’m going to wait in an attempt to control variables.

If you’re reading this to learn how to do a migraine medication detox with as little pain as possible, please be aware that my treatment may not be an applicable template. For most people with MOH, going off the medications would result in horrendous pain. My symptoms and situation are different than most. Thanks to my current preventive treatments and dietary restrictions, my pain rarely gets above a 3 on a 0-10 scale. I expect that it won’t exceed a 6 even while detoxing. Fatigue and cognitive dysfunction have been more disabling than the pain for me for the last few years. Those symptoms will be bad, but as long as I can feed myself and plan to limit my work for a couple weeks, detox shouldn’t be too bad for me.

I very much want to discover that MOH has crept up on me and is keeping two somewhat effective treatments from reaching their full potential. But I’m not holding my breath. I suspect I’ll go through migraine medication detox and discover that I still have a migraine attack every time I eat. While the acute medications may be increasing my susceptibility to migraine attacks outside of eating, they are also managing the attacks I get twice a day no matter what. My best hope is that the ketogenic diet and the other treatment are far more effective than I think because MOH is hiding their efficacy. Or maybe oxytocin will provide great relief. Whatever happens, I’ll have at least one more data point to help determine what my next course of action will be.

(Pardon any typos. Editing is beyond me right now.)