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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.)

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When Migraine Grief Refuses to Be Ignored

Migraine grief: Chronic Migraine keeps calling Grief and inviting it over to visit.Grief barged in at 3:18 a.m. It wasn’t too surprising—I’ve been slamming the door in its face for a week.

Facebook shows me Spanish tortilla with red peppers and peas. I want to read how the Cook’s Illustrated staff iterated to create the perfect dish, but know it will fill me with unbearable longing. I do not click through. Slam!

A character in a book mentions traveling to Ireland. Unbidden images of rolling green fields and castles fill my thoughts. Slam! The door is closed before I even realized it had opened.

But Grief keeps pushing its way in. Australia, New Zealand, Patagonia, Iceland—all the places I long to go, all the places I’ve been trying to avoid thinking of—scroll through my mind. Slam!

I throw my back against the door to prevent it from opening again.

Still, scones, chocolate chip cookies, and multigrain bread work their way into my thoughts. Slam! I cannot staunch these visions quickly enough. Not only can I not eat these foods, I cannot bear to bake them. The double loss threatens to invite Grief to become my roommate.

My efforts aren’t enough, so I erect a more permanent barricade in front of the door.

My therapist asks me to rate how severely I am grieving on a scale of 0-10. “Seven, when I let it in,” I say. After some back and forth, she tells me I am responding to my emotions skillfully. That to see Grief pounding on the door and choose to leave it on the doorstep because I can’t deal with the imposition is a healthy reaction.

The barricade works. What a relief.

Grief slips in through the forgotten crack at the bottom of the door.

Attempting to add pomegranate to my foods-I-can-eat list, I am rewarded with six hours of a migraine attack. I go grocery shopping when the attack lets up. Grief climbs into the cart and fastens the seat belt.

I try to push Grief aside as I fill the cart with the foods I can eat: romaine lettuce, butter lettuce, asparagus, red peppers, green peppers, watermelon, chicken breast, cream, butter. That’s it. Grief laughs. It reminds me over and over how fucking unfair it is that eating is my migraine trigger. It tells me I will never again eat peaches without paying in pain. It says that all my work to determine my triggers won’t actually result in fewer migraine attacks.

Grief hangs out for several hours. I feel boring and needy as I register the same old complaints with Hart. I have nothing new to tell him on this front. Grief keeps coming back for the same reasons it did last month, last year, last decade. No matter how much great work I do in therapy, Chronic Migraine keeps calling Grief and inviting it over.

Talking to Hart makes me feel better. I choose to change the subject and toss Grief to the curb again. Slam! I put the barricade back up and shove a towel in the crack under the door.

I find Grief lying in bed beside me when I roll over at 3:18 a.m. I’m too tired to try to kick it out. We talk for a couple hours, then Grief lets me go back to sleep. I suspect the reprieve will be short.

I awake in the morning to see the door hanging by its hinges. I can no longer deny Grief entry into my home. It is adamant that I entertain it right this second.

Grief and I have spent so much time together that I know exactly what to expect. Grief will detail everything I have lost to migraine, it will predict a future based on past scenarios, it will remind me that my actions have been futile thus far. I will cry until I am spent. Grief will ignore my exhaustion and overstay its welcome. (To do otherwise would be impossible; we both know it was never welcome.)

After Grief has its say and I regain some strength, I will tell it to leave. I will have to repeat myself multiple times before Grief finally complies. I will rehang the door and shut it gently. I will sigh in exhaustion and relief, hoping to have at least a few days of peace before Chronic Migraine summons grief to my door again.

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Exhausted and Frustrated By Migraine Diets

blank menuI narrowly avoided bursting into tears at a Thai restaurant last night. Hart and I are in San Diego with a dear friend for the American Headache Society conference. I wanted to spend time with them and (inexplicably) thought watching them eat one of my favorite cuisines wouldn’t be a problem. The wonderful smells hit me half a block from the door. I lasted long enough to snag a table while Hart and our friend ordered, then jumped up and nearly ran to get away from the reminder of how much I’m missing with these endless migraine diets.

Similar incidents have become more frequent in the last year, though this was the worst one. I usually stay home to avoid them altogether. After three-and-a-half years on restricted diets, being around food became agonizing. That was a year ago. Now I’ve been on restricted diets for four-and-a-half years and everything I eat or drink other than water has been a trigger for 15 months. Nearly every day I wonder how much more I can bear.

One of my favorite things—which is also required for survival—is a minefield. I worked for years to determine my migraine triggers. I did exactly what doctors and patient advocates and every migraine book say to do. The task felt impossible, but I finally found my very worst trigger. And learned that while my health care providers are compassionate and apologetic, they don’t know how to help. I become overwhelmed by the injustice of this if I allow myself to think about it.

I’m not trying to hold back the grief, but am trying to experience it without increasing my anger and sadness by dwelling on the unfairness. But both grief and a sense of unfairness are always lurking. Thinking about food fills me with dread. I don’t join my friends and family for meals. I rarely bake and don’t enjoy it when I do. I no longer express my love by feeding people. I am sacrificing an essential part of myself (my self) to satisfy the migraine gods. In my most frustrated moments, I am convinced the migraine gods scoff at my offering.

I have felt like I’m on the verge of breaking for months. I want desperately to stop the diet, but feel like I can’t. The ketogenic diet continues to keep me somewhat functional. I want nothing more in the world, so I keep eating this way. For now. I know that every other food-based intervention has eventually quit working. This one will almost certainly expire, too. I haven’t broken (whatever that would look like) because I can imagine the future. I would be furious with myself for throwing away low-migraine days when they were possible.

People often assume the only reason I can stay on these diets is because I don’t care about food as much as they do. I so wish they were right. Food is one of my core values. Figuring that out with my therapist last summer was illuminating. All my grief and frustration aren’t about not being able to eat what I want without having a migraine attack. They are about having an essential part of my being eclipsed. These diets are technically a choice, but the other option is being eclipsed by more frequent and severe migraine attacks. I’d be trading a bad situation for an even worse one.

Tenuous and fragile are the adjectives that have dominated my year. The current incarnation of my diet is allowing me to function somewhat, but for how long? This is the last diet on the list for me to try, so what happens if/when it stops working? (That’s a rhetorical question. Please don’t give me suggestions, they will only inflame me right now.) What treatment is next? Where do I go for guidance when medical knowledge has reached its limit? (That’s another rhetorical question. No suggestions, please.)

Even my parenthetical statements show how fragile I am right now. I know I’ll figure something out. I’ll find more information and more treatments to try. I am not defeated, just exhausted. And so frustrated.

I’m in San Diego for the AHS conference, but am unlikely to be up to attending any of the sessions. I’ll still try, but self-care is my backup plan. I’ll read and enjoy the cooler air. I’ll take a look at the ocean. Maybe I’ll book a massage. I’ll spend whatever time I can with loved ones. As long as it’s not while they’re eating.