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Searching for Fatigue Source Reveals Overlooked Midrin Overuse

As you’ve likely noticed, fatigue, both physical and mental, ranks high on my list of migraine complaints. Since finding some effective preventive medications in the last year, fatigue has probably become my most debilitating — and annoying — symptom.

Though my doctors and I think the fatigue is a migraine symptom (it is far worse during a migraine attack) I’ve searched for other causes. My thyroid’s been scanned an biopsied, I’ve taken supplements after tests indicated low vitamin D and B12 levels, my internist has probed a variety of possible causes… and yet the fatigue lingers.

Then, a bright light bulb suddenly switched on. I’ve taken an average of two Midrin each day (some days none, other days four or five) for the last three years. The drug is a combination of acetaminophen (Tylenol’s active ingredient), a vasoconstrictor, and a mild sedative. Though I don’t feel sleepy when I take it, I wonder if the sedative could have an additive effect that’s left me worn out after three years of a continuous dose. (Not to mention I could have medication overuse headache, a.k.a. rebound, from daily acetaminophen.)

I am so careful with the medications that I take. I research them well and track whenever I take an abortive, but somehow the frequency with which I was taking Midrin didn’t register. I’ve been off it two weeks and both my fatigue and migraine frequency have lessened (though the roof debacle has muddied my results). I’ve taken plain acetaminophen three times each of the past two weeks, but am going to try to go without it completely this week.

The number of different migraine triggers, the possible effects of medications on migraine frequency and severity, and the variety of symptoms that can be present during a migraine make for a complicated juggling act. I never intended to join this circus.

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The Day-to-Day Life of a Chronic Migraineur

At Christmas-time, Hart and I made plans to see friends from Montana who were visiting family in a Phoenix suburb. I offered to make the 30-minute drive to where they were staying so their kids could sleep while we talked. They got a babysitter and came to our house instead. I thanked them, saying that since I didn’t have to go anywhere, I was able to take a shower. They laughed, assuming I was joking. These are close friends who know I’m quite ill and their laughter showed me that no one other than Hart really knows the affect migraine has on my day-to-day life.

This has been a typical bad week. The migraines haven’t been horrendously painful, but the conglomeration of symptoms, particularly fatigue and nausea, has really drug me down. (I should interject to say that by “not horrendously painful” I mean that the pain hasn’t exceeded a level 7 on a scale of 1 to 10 — I forget that my perception of pain is skewed.) It was the perfect opportunity to catalog my activities to show what my days are like. I’m now trying to figure out how to share them with you in a way that isn’t tragically boring.

Tuesday
I stayed in bed reading news on my phone for two hours after I awoke. I usually feel worse after I get out of bed, so I like to linger if I feel OK so I can savor it. I used to plan my days while still in bed, but I stopped after noticing that the plans usually collapse because I usually feel so much worse within 15 minutes of getting up.I felt well enough when I got up to shower, which has been unusual the last eight weeks.

Showering often depletes my energy and Tuesday was no exception. It took two hours of playing Words With Friends and mucking about on my phone to gather enough strength to go out for a few groceries.

When I got home, I was grumpy, weak and very spacy, all indications of an impending migraine. I took a Maxalt melt and a Zofran and watched an episode of Dr. Who while the drugs went to work. Afterward, I was able to clean up some veggies and roast them for roasted vegetable stock. That was it for my energy, though, and I was in bed by 9 p.m.

Wednesday
I had an 11 a.m. appointment, so I set the alarm for 9:30, knowing how slow mornings can be. It took an hour for me to get up, dress (in the previous day’s clothes) and put in my contacts, during which time I had Hart cancel my appointment because the migraine was too bad. I had to sit down several times while getting dressed, then crawled to the door so I could grip the frame to pull myself up. I walked the 10 steps to the bathroom and sat on the floor to rest before putting in my contacts.

I spent most of the day watching Dr. Who, though I got up and walked around after every episode to see if I felt well enough to do something. By 5:30 p.m. I was able to pile the roasted veggies in a pot and fill it with water to make the stock, but I was trembling so violently that I had to lean on the counter to hold myself up. Severe trembling is another sign that I’m in the early stages of a migraine, so I took an Amerge, pushed through what I needed to do in the kitchen and watched another Dr. Who. It halted the migraine pain, but I never did regain enough energy to do anything else.

Also, I was too cognitively impaired all day to be able to play Words With Friends, which has become a source of pleasure and connection for me.

Thursday
I felt good enough that I thought I’d be able to take a shower and not have to wait for a recovery period. Nope, the shower wore me out and another migraine hit. More Dr. Who while I waited for the Maxalt and Zofran to work. They did, though not in time for me to make it to my dental appointment.

I napped and by 3 p.m. was in good enough shape to drive myself to Whole Foods. Not only that, I started chicken stock on the stove while I sent some emails that I’d been too sick to deal with, and heated up dinner to eat with Hart. We ate, then I cooked some more and cleaned the kitchen. And, for the last hour, I’ve been writing this post. This qualifies as a good day.

I noticed when I got into bed that my entire head, including the roof of my mouth, was pounding. Four hours and two Midrin later, I was finally able to go to sleep.

I am not a lazy person. Chronic migraine is not an excuse for me to be a couch potato. I am forever asking my body to allow me do more than it wants to do and take advantage of nearly every decent moment I get. Knowing how little I accomplish even though I try so hard is disheartening. Acknowledging how long it takes to get out of bed or the devastation a shower unsettles me.

Simultaneously, I am proud that I make the most of my limited life. The smallest achievements are exciting and I enjoy every task, even cleaning the toilet, because I’m thrilled to be able to do them. I never know how long a good spell will last, so I don’t take any of it for granted. Carpe diem is my motto because it has to be. If I didn’t seize the day, I’d likely wither away.

A friend recently told me that my day-to-day life seems pretty awful. Compared with a normal life — and with the grand, world-changing life I expected to live — it is. But these are the circumstance that I have to work with and I’m growing accustomed to the limitations. I get angry and frustrated at times, but I also revel in the joy of a perfectly crafted chicken broth, indulge in the wonderful fiction of audiobooks and television series, and appreciate when I’m able to write something that helps others with chronic daily headache or migraine. Considering how small my life appears on the outside, I feel like I live pretty large.

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Midrin Equivalent Now Available at Pharmacies

An equivalent to Midrin, which is made of the exact same ingredients as Midrin was, is now readily available. My pharmacist called to tell me the news and I had the pleasure of letting my headache specialist know.

Teri Robert of Migraine.com found that Macoven Pharmaceuticals makes the Midrin equivalent currently available. If your pharmacist doesn’t have it in stock, give them Macoven’s contact information and they should be able to order Isometh/Dich/Apap capsules (that stands for isometheptene mucate, dichloralphenazone, and acetaminophen, the components of Midrin). If not, a compounding pharmacy can still make it for you.

Though a Macoven employee told Teri that the company is working with the FDA to keep Midrin available, the fact stands that the drug has not been approved under the FDA’s current drug approval requirements. Unless the FDA changes the policy or a company spends the money on drug trials (which is highly unlikely), there’s no guarantee it will stay on the market.

Thanks for your sleuthing, Teri.

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Using a Compounding Pharmacy to Replace Midrin or Epidrin

Midrin (and all other Midrin-like drugs, including Epidrin) have really, truly been discontinued. I’ve tried to hide from the truth, but can no longer deny that the ONE medication that allows me some semblance of a life has been discontinued for bureaucratic reasons. While there are no similar medications on the market to replace Midrin, having a pharmacist compound the medication is an option.

What are compounded medications? Quite simply, they are medications that pharmacists mix up from their component materials. You can locate a compounding pharmacy in most US states. All you need is a prescription from your doctor. Insurance companies generally pay for compounded prescriptions, though there may be additional costs that you pay for up front, then contact your insurance company for reimbursement. (I found this answer online and have no first-hand experience. If you know more, please leave a comment.)

But there’s a catch… the individual ingredients may be difficult to obtain. Midrin is composed of isometheptene mucate, dichloralphenazine, and acetaminophen. One pharmacist reported that she is unable to obtain dichloralphenazine and my headache specialist said that isometheptene mucate is backordered many places. However, these are only a few reports. It’s up to you to share what you learn!

If you’re a Midrin devotee, keep calling pharmacies — some still have a stash. I found mine at an independent pharmacy. Have your doctor call in a prescription for as many as possible. Insurance will probably only cover one month; if you pay cash, you can probably get a three-month supply. They cost about $1 per pill. Also try your mail-order pharmacy for a three-month supply that insurance should cover. (FYI, Costco and BioScrip are out.)

Read Teri Robert’s post for the politics of Midrin’s discontinuation. She has also found that Prodrin is available, though it doesn’t contain dichloralphenazine.

UPDATE: The Midrin equivalent is being manufactured again! Contact your local pharmacy for availability and pricing. Near me, it’s available at CVS, Walgreens, Walmart and a local independent pharmacy. My insurance covers it with a generic copay.

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Name Brand and Generic Midrin Discontinued

When I tried to fill my Midrin prescription today, the pharmacist told me that all formulations of the drug have been discontinued. Migraineurs throughout the US have heard the same news over the last three years, though the trouble has become more acute in recent months. Migraine advocate Teri Robert researched the issue and confirms the reports. Midrin, Amidrine, Duradrin, Epidrin, Isocom, Migquin, Migrapap, Migratine, Migrazone (all brand names of meds with the same ingredients as Midrin) and the generic isometheptene mucate/ dichloralphenazone/ acetaminophen have been discontinued.

Midrin appears to be a casualty in FDA’s attempt to subject all medications to current approval requirements. Teri explains,

“Midrin was first made and marketed before the current FDA drug approval process was in place. It was never reviewed by the FDA for efficacy and safety. Nor were any of the other similar products. And that’s where the problem lies.” …

“The loss of Midrin as a treatment option isn’t good news for us. The likelihood of any company investing the time and research dollars necessary to apply to the FDA for a drug equivalent to Midrin is slim. Yes, many people are still using it, but far fewer than before the triptans were developed, and triptan usages is up. The cost of triptans is down since two of them are now available as generics.”

Read all of Teri’s article, including her correspondence with an FDA official, on Help for Headaches & Migraine. Many thanks to Teri for her excellent sleuthing and dedication to helping migraineurs.

I’m crushed to learn that one of the few drugs to provide me with any relief is no longer available.

Update: The Midrin equivalent is once again available as of late 2011. Not all doctors and pharmacists are aware of this. If you are told Midrin isn’t available, tell them that Macoven Pharmaceuticals makes a generic equivalent and ask them to look into it.