Every Body Goes Haywire

I'm pleased to say that I am a former Migraine sufferer.

I've had the condition since I was 17 years old, when the first one hit. It was such an intense pain that I begged my mom to take me to the emergency room -- certain my brain was bleeding since the pain included a number of other symptoms (blurry vision, dizziness, nausea and the like). They sent me home with 1000mg of acetaminophen and basically told my mom that I was probably faking or just had a bad headache. My experience with around two decades of dealing with this illness was that neither regular folks, nor doctors, take the condition terribly seriously. People call their headaches "Migraines" having no idea that there's a difference. There's drugs marketed for Migraine headaches that, in my experience, did very little and were targeted at people who get "bad headaches that htey call Migraine". The best description I could give of how it felt was "like the worst 'brain freeze' you've ever had but instead of ending after a few seconds, it goes on for a few days". But everyone seems to have slightly different symptoms and until reading this article, I wasn't even aware that it was possible to have Migraine without the associated headache (though I had heard about some of the other symptoms that I hadn't experienced myself).

For me, a typical Migraine was 3-days long, twice a month, with increasing frequency during the fall and spring months. I'd have the aura most of the time and the after-effects almost all of the time. I'd been employed, full time, during the entire time that I lived with Migraine and because of its frequency, I rarely--if ever--took time off (try explaining to a boss that you need the day off because you have "a headache"). I'd given a presentation to a room full of coworkers right in the middle of one -- my eyes watering the whole time from the pain. Most of the time, though, I'd figure out ways to function -- sunglasses, staying still, contrast down all the way on the monitor, fasting for the day with frequent trips to the restroom to vomit air.

If normal people don't take it seriously, doctors seemed to take it even less seriously. The first question they'd often ask is "did you miss work because of a headache?" Being too honest, I'd say "no" and they'd stop paying attention or prescribe an anti-inflammatory. A doctor who took me moderately seriously prescribed two different triptan-based drugs with the assurance that "my wife gets these -- when you have an aura, just take one and it'll all go away." The pain was dulled by a huge amount, but they came with enormous side-effects. I would experience an intense sort of "elation" shortly after taking the pill, followed by a depression after the pain was gone (I'm neither of these things, normally, except for a small bit of listlessness after the Migraine had subsided). The medical literature indicated mild variants of these symptoms but this was anything but minor to me. I ended up finding out, by accident, when mixing this medicine with another medicine that affects serotonin, that my body lacks a gene required for properly flushing this medicine out of my system. I was sent to the ER with ~103 degree fever, incredibly elevated blood pressure (I don't remember the number but I remember the look on the nurse's face when she took my blood pressure for the third time with the replaced cuff and got the same numbers), and was treated by staff who was sure I had taken some recreational drug and was having a bad reaction (they were shocked when the tox screen came back clean). It was probably serotonin shock according to a doctor I saw well after this visit, but the ER staff was convinced I had some sort of psychiatric episode or took a drug they couldn't screen for. Regardless, they told me to never take a triptan again.

This incident resulted in me seeing a new doctor who suggested I try a medicine given -- in the past -- to people with epilepsy (and now commonly prescribed for bipolar disorder) called Depokote. Ironically, it was not prescribed to handle Migraine, but rather whatever underlying problem caused my trip to the ER[0]. It was September, a month where I had gotten Migraines weekly every year since I was 17. After a month of taking the medicine I had no headaches. I did a quick google search and the usual web sites didn't say anything about Migraine relief, but a handful of forum posts from people who take the medication had been taking it to manage Migraine symptoms (a search of that medicine a few weeks ago yielded results indicating that the medicine is now prescribed for that purpose). These silly little pills that cost about a dollar for a month's supply are magic as far as I'm concerned. Generally, I hate drugs affect my brain, but I've had no side-effects (unless you consider eliminating Migraine a side-effect).

My apologies for the long comment, but since I know there are others out there who probably have gone through what I went through, I thought I'd share.

[0] Here's where it gets complicated. The ER couldn't figure out why I was sick, but a flush of fluids through my system resolved everything. I was diagnosed as having a psychiatric episode -- something I had never had in the past, nor since. I was also admitted on a US holiday, so staff wasn't so great. I was prescribed this medication on the assumption that I might need to be on a mood stabiliser, which was absurd to me, but these were doctors and I am not, so I listened blindly. I had the genetic test months later after my children had been given a similar test and theirs had indicated a problem with triptans and, sure enough, those were my genes.

I used to suffer from CFS, and my wife used to get almost weekly migraines. (We're now both symptom free). In both our cases, chronic stress seemed to be the cause.

From what I can see (having talked to many other patients and researched it for the last 16 years), the depression/migraine/CFS/fibromyalgia cluster of symptoms appears to be the brain's way of telling you to stop doing what you're doing, i.e. you should remove the stressors. That's not to say that all migraines are caused by stress, but it does seem that it is likely a significant factor for many people.

I dislike the notion perpetuated in this article that if your headaches or fatigue is psychosomatic (due to stress) then you're either "weak", or it's "all in your head" (i.e. imaginary). I'll admit I probably wouldn't be able to work in a stressful job in NY with only a few hours sleep a night -- like the author of this article was trying to do -- without suffering from some kind of stress-related illness. I don't think that makes me weak...it's simply that my brain won't let me work in an excessively stressful situation like that if it doesn't appear to be in my best interests (even if I really want to do it). The advantage is that my CFS prompted me to quit a boring job and create my own internet startup, doing something that nobody else in the world is doing (now I have about 20+ competitors).

I appear to have them under control now. I have been on a Ketogentic (< 20g carbs) diet (mainly to lose weight) and lack of migraines is one of the pleasant side effects. I've had two since starting months ago but I may have had too many carbs those particular days. I'd have almost one a week if stressed. The last two were so mild that I didn't bother with my regular Advil.

Not saying others will have the same experience but Keto is one treatment for various neurologic issues. I certainly didn't have them as bad as the author or others here. But it may be an avenue to consider. It is nice to not fear the zigzags.

Best wishes to all sufferers of migrains. b

I grew up with migraines. Frequency ranged from once a week to once every few months, with the average being 1 or 2 a month. Mild ones left me sleeping near the toilet. Some were so bad I truly believed I would die, even though I would tell myself I've been through it before..

Then I moved to California (from Oklahoma), and I haven't had a migraine since. In OK I would also get these strange allergy attacks where my nose wouldn't stop running and my head would be stopped up for a day or two, to the point I couldn't concentrate enough to work. Those stopped after I moved as well.

The "allergy level" between the two states isn't significant. OK is a little higher, but not huge. So I think my issues may have been related to specific flora, although doctors never suggested anything like that. I think my favorite line from the blog is:

> Although migraine symptoms have been described since antiquity, doctors still struggle to understand their cause.

I have occipital neuralgia (damage to nerves in the back of the head), and the nerves of the head/neck are common triggers of migraines. Fortunately I don't have headaches or migraines, just pain, but people who have both are profoundly miserable I can assure you as I'm in a lot of the Facebook groups. They are essentially disabled, and mostly bedridden with no end to their condition in site (most are young and it's not something you die from). Furthermore, there isn't a lot of sympathy from the outside world as most people don't really believe chronic pain or chronic headache is even possible. It would be nice if there was a test to show pain or confirm a headache to substantiate these horrible conditions.

I have migraines and epilepsy.

> I collapse under the side effects of my medication; my mom tolerates hers with grace and determination.

My body just will not tolerate medication. I'm not on any medication right now. But it was pretty much a guarentee I would get 90% of the side effects. My mom is the same way. In addition my liver is so thoroughly trashed from anti convulstants, that I need double of anything for it to have an effect.

This whole article really hits home except for: > TO THIS DAY, I GUARD A HIDDEN HOPE that I will receive a new diagnosis, one that clearly explains the severity of my symptoms.

I'm done trying, done with doctors visits new medications. I've been in hospitals since I was 2, it's time too enjoy life as much as I can and push forward. The bigger problem has been my friends, they constantly badger me to go get help.

There is one downside to this. I went to the ER a few weeks back. I have a rare migraine disorder (Hemiplegic [mimics a stroke]). The doctors said I was a hypocondriac, who was making up a migraine condition, and placed me under psych evaluation. Because I didn't have a history. Which was because all the medications made it worse.

> Chronic migraine creates all sorts of discomfort and anguish, but what has been hardest to bear is not knowing what this means for my future. I don’t know how debilitated I’ll be or who will take care of me or what I’ll do about money.

We are given a set hand when we start life. You'll discard some, pick some up. But there are some cards you're stuck with. If you have something chronic, you may not be able to resolve it. If you do great, fantastic. Find small little tricks to get you by, and work with it.

Make the best of each day, do everything you can. Don't let it hold you back. I've found the hardest part is not on me. I feel practically discouraged, when I get a spike of pain, or become paralyzed. People rush me, because they care. But just let me be. Constantly being coddled makes me almost regret trying certain things. I feel really lucky now, to have a group of friends who are like. "Him yeah he's fine just seizing. He'll come too in about ten mintues."

We have so much to learn about neurology. I've bounced around diagnoses. The resolutions have been largely outside of western medicine. The biggest change came about five years ago. An acupuncturist had me take a genetic food allergy test . I had to pay out of pocket. But after cleaning up my diet, my migraines were cut in half. I get a cock eyed look from doctors, when I say my treatment is this natural thing, or dietary.

The first time I got scared about my migraines and decided to do something was after my first silent migraine. Before this I had just had them about twice a year lasting roughly 3 days.

My silent migraine started with pins and needles in my tongue, speading slowly to the rest of my jaw and then finger tips. Then I lost sight in the parts of my vision where I was focused, it became grey and bright around the edges. I still had peripheral vision. The last symtpom was what I could only describe as temporary dyslexia. I was reading sentences aloud and skipping whole words or moving them from the start to the end. It sounded like gibberish but in my head it somewhow made sense. I started to panic until some frantic googling brought up these types of migraines. Which is when I instantly recognised all my symptoms as familiar but without the headache and light sensitivity seemed very alien and very scary.

My migraines occurred roughly twice a year for roughly 20 years. The symptoms have been sparkling lights in vision, effective blindness and incapacitating confusion lasting about eight hours. Extreme pain and vomiting only occur about half the time.

There is no connection to stress but most occurred when out in glaring sunlight. One happened when a kid flashed a laser pointer into my eyes from a distance. They maybe connected to lack of sleep.

I have not had any for about 2 years at which time I began taking Citalopram and 'Breo' for other conditions. It is hard to imagine how those two would make any difference but I post this in case someone finds it useful.

I know someone who lives with severe chronic migraines. She writes about her experience when she can on thedailyheadache.com. Similar to the author, she searches desperately for triggers, treatments, and even moved to a drier climate.

My sister-in-law gets debilitating multi-day migraines. She too searches desperately for triggers, and has a hard time with medicine.

I get cluster headaches for a couple of months every two years or so. Although they are extremely painful, it's infinitely easier to cope with an episodic affliction than chronic pain with no end in sight.

I used to get migraines when I was a teenager. Full aura and the absolutely unbelievable throbbing headache. I have a vivid memory of once getting one from eating chocolates¹ and having to sit in a dark room with no sound because practically anything would add to the throbbing.

For what it's worth, they just went away when I got older. Haven't had one in over a decade.

¹ Tasted great, though, and I remember eating the variety (which I remember being called 'Praline Leaves' or something of the sort). Never found it again.

Did amy of the excitement around magic mushrooms as a migraine treatment ever pan out?

I am not a migrane sufferer but I do work with two people who are sat next/opposite me that do get them. I also get a cat that will visit me at my desk. I don't think the cat gets migranes however there have been times when all the migraine and allergy problems of the world have been blamed on my furry friend. So the haywire craziness of my colleagues' immune systems is entirely due to a cat, even though there is no correlation between 'migrane days' and 'cat visit days' - makes sense to me, particularly since the migraines predated the cat.

I just quietly take my desk cat to another colleague's desk, far away from the allergy zone, however, I would far prefer the company of the cat to some of my 'haywire bodied' workmates... I sometimes want to say 'you live in the middle of a ring road in one of the most polluted cities in Europe breathing diesel particulates all day long and you think this cat is causing your migraines!'

I live in the suburbs, to the west of the city, not on a major road. There are no busses thundering by my door. I walk/cycle in to work rather than spend 2 hours a day packed into public transport. My immune system has to deal with cat hairs not the combined toxic soup of pollution that goes on in the city or a smorgasbord of medical pills to counteract the allergy.

I do understand that people can have allergy haywire hell from birth and that things like cats are a serious allergy problem. I do know how debilitating these things can be, i.e. can't really work. However, I feel that my colleagues are in a horrible catch-22 of medications and lifestyle choices. If they could somehow move to somewhere where breathing was possible they might not have that particular continual assault on their system. But it is about assaulting the system in the right way, so more cat is probably needed rather than the 'OCD' everything must be sterilised clean with chemicals approach to the home.

But it is too late, the die was probably cast in early childhood for my two colleagues and they are condemned to spending the rest of their days 'avoiding cats', taking the pills and doing whatever the doctor says. If I did a house-swap with them I doubt that they would be miraculously cured (or that I might suddenly start getting headaches and rashes).

My colleagues will probably bring up children that never play with cats and where every surface is chemically blitzed clean. Their children will probably grow up in a world where taking all the pills makes sense and things like cats/flowers/hay-lofts/soil are verboten. They will probably blame genes rather than 21st century lifestyle choices when trying to work out what has gone wrong. The problem will move on to another generation, more money for big pharma, nothing solved.

Also, see Oliver Sack's excellent book: http://www.oliversacks.com/books-by-oliver-sacks/migraine/

Modern medicine works great as a framework to treat pretty much all diseases/conditions. But I feel alternative forms of medicine are not viewed as viable forms.

Anyone has experience with alternative forms of medicine (homeopathy,ayurveda) for migraines and other conditions?