At my last appointment my former Neuro & I were discussing abortive medication use. I asked her about the conundrum of treating a migraine before it gets too severe to respond to medication verses not over using medications to prevent MOH. She didn’t really have an answer. So I’m asking you… When you wake up with a 5 scale migraine how do you decide to take medication to prevent it from getting worse or ignoring it until it becomes an 8 or more? When the first abortive dose doesn’t work, how do you decide to dose again? If you have levels of abortives like I do–Imitrex, Zanaflex (muscle relaxer), and Finally the big guns of narcotics–How do you decide to go up the scale verses admitting defeat to curl into a ball to bawl from the pain?
*You may want to quit reading now… This is a L O N G background that rambles into a rant against what we all suffer–migraines…
Until my former Neurologist told me about MOH/rebound headaches from taking too much abortive medications I’d never been told about it before. Part of that may have been that I only had migraines once a month on average, but sometimes had several days one month followed by a couple months without any. Part of that was also that the medication was not really covered by insurance and we couldn’t afford for me to take it very often.
Fast forward 20 years and I’m almost constantly fighting at least some level of migraine on a daily basis. However, I’ve never really been much on taking a lot of medication. For one thing it’s a crapshoot as to whether the medication will help. Even anesthesia takes a lot to finally make me pain-free and asleep–forget about using Nitrous for dental procedures, I’d rather just suffer through than get all nauseated from the gas… Regular OTC pain meds might as well be placebo for all the good they do me. Even narcotics do little more than just help me sleep through the pain. My Imitrex has about a 50:50 shot of helping reduce the pain about 4 points down the scale–it never eliminates it. Even narcotics, benadryl, compazine, etc basically just help me mostly sleep through it. (FWIW my aunt has a genetic mutation that affect the metabolism and efficacy of many medications including pain medications, anti-depressants, and most the the classes of drugs given for migraine prevention. I haven’t been tested, but I fit most of the risk-factors/symptoms of having the same mutation.)
My average day is about a 3 on the pain scale–just my head, not my other comorbid pain causing problems. For the last 11 days my average pain scale has been an 8–all day every day. I can’t sleep because I can’t rest my head on my pillow. For the last 8 months I’ve had more than 20 migraine days a month. When my former Neuro had me start my headache diaries, she told me to aim for fewer than 9 abortive meds a month. She very obviously thought I was suffering from MOH/rebound–in fact she pretty much said so. I think she was amazed when I brought my diaries in for 3 months and had used less than 9 medications a month even though more than that number of days were recorded as 7-10 on the pain scale (I don’t usually take an abortive med until the pain gets to a 7 or so). So she told me I could use up to 15 meds a month. Then she moved away…
as I sit here unable to sleep for the 11th night/morning in a row (if I finally fall asleep now at 7am, I’ll still wake up every hour and feel completely unrested–so tonight has been completely sleepless), I’m contemplating just taking my most sleep inducing medication in the hopes of sleeping–not even to really try to stop this migraine. Of course, that would be wasting one of my doses that could help (if everything else in the universe lines up properly) for a ‘bad’ migraine later in the month… Since my last ER visit 6 days ago, I haven’t taken anything for my headaches–not even my so-called preventatives or even my medication for my neuropathy–with my GPs permission. To be perfectly honest, I’ve probably felt better (except the lack of sleep) since I haven’t taken any medications.
I initially stopped all meds for just a day because I have been having almost constant dizziness and feeling faint. In fact, I’ve passed out twice in the last 3 weeks. I stopped the meds my latest Neuro gave me as a preventative because the dizziness and fainting started with a day or two of beginning that med. When stopping the one med didn’t help, I looked at side-effects for my other meds and saw dizziness listed for several as well as at least one of my long standing meds & the new med being contraindicated. I’m still dizzy and just had a heart monitor for 24 hrs to check for heart problems causing it. Every single med on my list is also on the list for causing brain fog, headaches, dizziness, and countless other things even as they’re used to prevent/treat headaches.
I’m so frustrated and pained by all my confusion about taking or not taking medications. I’m tired and fed up of being treated like a drug seeker/addict/abuser because I have a narcotic on my current medications list. All I want is to have a day without feeling nauseated, throwing up, having diarrhea, feeling like I’ve lost my mind (brain fog), and the constant mind numbing pain in my head. If someone told me to cut off my left arm & my migraines would be cured, I’d do it without anesthesia all by myself. So if I have to drug myself to oblivion just to catch more than an hours sleep at a time and feel even a slight decrease in pain, I’m going to drug myself into oblivion.
I’ve been a productive member of society with a specialized education in molecular biology being used in forensics. That’s all gone now though because of the unrelenting progression of my migraines from occasional to constant. I feel like an uneducated moron most of the time, when in truth I graduated Cum Laude with my BS in biology. My once expansive vocabulary and articulate speech are limited to rantings like this on the internet because I can’t find the words to speak in real life. I feel like a 90 year old woman instead of the 36 year old I am. I’ve had more doctor appointments and treatments than most people double my age. I’m sick and tired of being sick and tired. It’s a vicious cycle that only gets worse, not better. I barely leave the house except to go to the doctor. My children are 7 and 9, but they’re growing up basically without me since I’m in my dark dungeon most of the time or else I’m so easily irritated I’m sure they wish they could send me to the dungeon. My husband practically has panic attacks when I call his name because he’s terrified I’ve passed out or need him to take me to the ER again. My bike is dusty and unused, my horse is unridden, my house is a wreck.p, my garden doesn’t even exist any more. I just can’t keep up with any of it any more.
Argh… I didn’t mean for this to turn into a rant. I apologize. I’m just so tired of it all. There are seriously times I wish I’d denied treatment for my BRCA1 cancer 7 years ago because that was the beginning of this. I’d better submit this because if it gets any longer I’m likely to be banned from the forums for boring everyone to death.