I'd like advice from LW regarding migraines

post by Algon · 2015-04-11T17:52:04.900Z · score: 10 (11 votes) · LW · GW · Legacy · 71 comments

So, I read a post a little while ago saying that asking the community for advice on personal problems was okay, and no one seemed to disagree strongly with this. Therefore, I'll just ask for some advice, and hope that I'm not accidentally going past some line. If I do, I apologise

 I have had migraines for quite a while now. They started when I was a child, but were infrequent in those days. They got progressively worse as time went on, and things started to get quite bad when I was about 12. A few years down the line, I would have headaches for months at a time, with migraines popping up for a few days a month. It got worse from there. Now, I have had migraine-like symptoms for 10 months now. I say migraine-like because part of the definition of a migraine is that it lasts from about 3 hours to a few days. According to a neurologist I recently went to, I have transformative migraines, or wording similar to that. So I have all the symptoms of migraines, except they last for inordinate amounts of time. I've had an MRI, and it showed nothing wrong with my brain. According to the World Health Organisation, this is more disabling than blindness, and as bad as acute psychosis: http://www.migrainetrust.org/chronic-migraine You can see why its rather important to me that I get rid of/deal with this.

Now, I've tried quite a lot of things over the years, especially in the last two or so. NSAIDs do very little, and thing like migraleve (paracetamol with codeine) are a little better. Sumatriptan provides some relief, but it doesn't get rid of the migraine. At best it will knock me down to a weak migraine. I've tried taking propanalol (160mg) for half a year, and it does little to help. I was prescribd Amitiptyline (10mg) a week ago, but it hasn't had much effect. I was told to increase by 10mg it every two weeks until I hit 30mg. I've also tried cutting things out like chocolates, and dairy for a month. It didn't have any effect. I also don't have any caffeine. So this eliminates some common causes of migraines. My migraines sometimes respond to heat/cold applied to my head, but this is only some of the time, due to my migraines shifting in nature. Further, it only takes the edge of them. I've also tried taking magnesium supplements, but they had a negative effect on me i.e. strange dreams and insomnia. That just made my problems worse. Also, I've ruled out medication overuse.

 So, does anyone have any recommendations? There should be a few people who have had experience with this level of migraines, and I expect they might be able to provide some advice. I'm not too optimistic, but I really need something that works.

71 comments

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comment by gwillen · 2015-04-12T01:31:46.281Z · score: 11 (11 votes) · LW · GW

Upvoted to encourage more people to ask LW for help in this way, which I think is good trend. But I would suggest a title that describes more specifically what the post is about (i.e. "LW, help me with my migraines" or something).

I have no advice on the migraines themselves but I wish you luck.

comment by Algon · 2015-04-12T13:59:45.770Z · score: 1 (1 votes) · LW · GW

I know the title is a bit awkward, but I didn't want to make it too long, and it was a little late. Thanks for the well wishes and up-vote though.

comment by John_Maxwell (John_Maxwell_IV) · 2015-04-21T10:20:57.030Z · score: 3 (3 votes) · LW · GW

A few years ago I suffered from an extremely severe case of repetitive strain injury/tendinitis. (As far as I can tell, attempts by medical professionals to come up with careful definitions for those terms have mostly failed, so I use them interchangeably.) My case was more severe than almost any I have ever heard about—I was stuck controlling my computer using a voice recognition system for over a year and spent all of my time being unemployed, depressed, and living with my parents. What finally solved my problem was information about trigger points found in this book and this ebook. I actually purchased the first book relatively early on in my condition, because I wanted to try everything, but I was convinced it was pseudoscience and put it down after only a couple minutes of reading. It was only the skeptical tone and citations in the second ebook that convinced me trigger points were a thing. Since my experience, I’ve talked to other people with chronic RSI, mostly within the Less Wrong community, and my current guess is that trigger points are responsible for most chronic RSIs, as well as a wide variety of chronic pain problems that science currently isn’t very good at treating (the same trigger point therapy that was useful for my tendinitis was also very useful for my chronic knee pain, stomach pain, and back pain).

I mention this because the first book I linked to cites trigger points as a possible cause of migraines. I recommend searching for migraine info using the index. There’s also this web page by the author of the second ebook.

If trigger points are a significant factor in your migraines, I expect that you will find the right massage therapy or acupuncture treatments helpful, and in the best case they will clear your condition up entirely with clever and diligent application, although they will aggravate your condition a bit initially (for maybe a couple days after treatment; this is discussed more in the resources I pointed you to). (This great textbook explains how acupuncture works.)

(Unfortunately my latest chronic pain condition is eyestrain, which is not capitulating as easy as the previous ones; the muscles in my eyes are not accessible for massage the way most of the muscles in my body are. I’ve been doing self-acupuncture (after reading lots of safety information) to try to relax the smooth muscle tissue innervated by both my eyes and areas accessible to a needle (it’d be really spiffy if I could talk to someone who has expertise in neuroanatomy) and it seems helpful but it hasn’t been a slam dunk. Wrote this post mostly using a screen reader so I wouldn’t have to look at my screen very much.)

comment by Algon · 2015-04-22T16:15:33.428Z · score: 0 (0 votes) · LW · GW

That sounds quite promising. I've heard a bit about acupuncture, and its on my countries national health service, so I'll give it a go.

Apparently some research has been done on this, which has shed some light on the subject, but its not yet been able to explain it all. Apparently its pretty difficult to perform a quality experiment to check hypothesis about acupuncture.

Thanks for the advice. No one else recommended it, and I had put acupuncture fairly low on my to try list. If you hadn't recommended it, I probably wouldn't have thought of it for a while.

comment by John_Maxwell (John_Maxwell_IV) · 2015-04-23T05:41:54.506Z · score: 1 (1 votes) · LW · GW

No prob. I recommend looking in to self-massage as well as acupuncture. The trigger point books discuss massage as the primary treatment method.

comment by jbay · 2015-04-14T16:07:50.117Z · score: 2 (2 votes) · LW · GW

I suffered from severe migraines for most of my life, but they were much more frequent when I was younger -- about two or three times a week. During high school they decreased in frequency a lot, to maybe once a month or once every two months, and now that I am in my late '20s, I only get migraines once or twice a year. Unfortunately I can't give you much rationalist advice; although I discussed migraines with my doctor and we worked together to find a solution, to my understanding it's still not a scientifically well-understood problem. So all I can tell you is what I've found worked for me.

My symptoms were usually a severe throbbing pain around my head somewhere between my eyes and ears, light and sound sensitivity, nausea, and a strange kind of dizziness. Reorienting my head would affect the pain a lot, and so during a migraine I usually end up with my head tilted to one side.

I couldn't find any good way to rid myself of a migraine once it had started, but Advil worked well for dulling the pain, after about 15 minutes. I'd just lie in a dark room until it passed, which sometimess took up to an hour.

Preventative measures worked the best.. I did learn some warning signs (well, feelings that are a bit hard to put into words) that a migraine might be impending, and after I noticed them I would try to remove myself to a quiet, low-stimulation environment, and make sure that I was well-hydrated and calm. That would often help avoid the migraine becoming severe. I found that migraines were always much, much worse when I was dehydrated, which as it happens is an easy condition not to notice.

I don't know exactly what has caused the large reduction in frequency of attacks for me, although I'm thankful for it. It could just be that my body grew and changed and now I don't get them as much. It also could be dietary changes -- I used to eat very different foods when I was a kid than I do now, including a lot of instant ramen noodles and other salty foods, and candy, whereas now I keep a much healthier diet. I cut out the ramen noodles at my doctor's suggestion that MSG might be a trigger, and that was definitely correlated with a major decrease in occurrence frequency, but it wasn't a controlled experiment and I changed a lot of other things too. I wouldn't be surprised if the dietary changes helped, but it's hard to be certain.

Good luck. Migraines are bad, bad, bad and I hope you can get rid of them.

*Edit: By the way, have you been to an optometrist lately? It might be that you are suffering from low-level eye strain and are in need of glasses.

comment by Algon · 2015-04-14T16:46:42.802Z · score: 2 (2 votes) · LW · GW

I've had glasses for about a decade now, and my eyes have remained stable for over a year. The MSG recommendation had popped up a few times, so I'll try cutting it out.

Sadly, my migraines have evolved to some beast that constantly gnaws away at me, so I can't really take preventative measures. I would just love to have a break for a few days so I can get the edge in this struggle.

Thanks for replying; every data point helps.

comment by jbay · 2015-04-15T05:27:21.590Z · score: 4 (4 votes) · LW · GW

That sounds beyond terrible. I really wish I could be of more help. I know exactly how awful it is to have a migraine for one hour, but I cannot fathom what it must be like to live with it perpetually.

Well, here is some general Less Wrong-style advice which I can try to offer. The first thing is that since you have been coping with this for so long, maybe you don't have a clear feeling for how much better life would be without this problem. If these migraines are as bad for you as I imagine they are, then I would recommend that you make curing yourself almost your first priority in life, as an instrumental goal for anything else that you care about.

I agree that it is worse than blindness. If I went blind, I would learn to cope and not invest all of my energies into restoring my vision. But if I were you, I would classify curing your migraines as a problem deserving an extraordinary effort as if your life itself were at stake ( http://lesswrong.com/lw/uo/make_an_extraordinary_effort/ ). That means going beyond the easy and obvious solutions that you have already tried (such as medication) and doing something out of the ordinary to succeed.

Treat this as mere speculation, since I'm not up-to-date on the migraine literature anymore... but an example of out-of-the-ordinary solutions, you could try renting a different house for a month, moving to a different city, or even moving to a totally different country for a couple weeks. The thinking being that if there is an environmental trigger, a shotgun approach that changes as many environmental variables at once might solve this. For example, if it turned out you have a sensitivity to something in your house, moving house for a while might work. If it turned out to be air pollution in your city, then moving to a cleaner environment might fix it. Unfortunately, unless the state of migraine knowledge has advanced a lot, I think the space of possible hypotheses is huge. So...

Basically, I'm suggesting that you might want to try something on the scale of a month-long trip to live with Buddhist monks in Nepal, or on a Kibbutz in Israel, or to a fishing village in Newfoundland, or something. Changing at once basically everything about your lifestyle from diet, exercise, environment, sleep schedule, electronic devices, and interpersonal interactions. It's not the kind of solution most people would try, especially since the daily responsibilities of life (work, family, money, etc) always seem to take priority, and nobody has the time to just go and leave for a month. Especially since you have a severe impairment which probably makes all the other things take even more time and effort. But that's the difference between making a desperate effort, and "trying to try" just to satisfy yourself that you've done as much as anyone else would do. If curing your migraines is your top priority in life, as I think it should be right now, then it's worth investing a year of your time.

Anyway, that's the only other thought I have. You should try the easy things first of course (starting with MSG), but before you give up make sure you understand how wide the space of possible solutions might be, and how many different lines of attack might exist that haven't even been thought of yet.

comment by Algon · 2015-04-15T07:54:53.580Z · score: 2 (2 votes) · LW · GW

Well, I've actually grown a bit as well. I can successfully put most of the pain to one side whilst I'm doing something, but my general cognition goes down quite a lot. There is little I can do about that besides resting, which is when the migraine pain train comes full speed.

The major lifestyle changes sound nice, but they are beyond my current capabilities. I am not yet even 20, and I have some important exams in about a month and a half. That is what I am most worried about. I can still do well, but not nearly as well as I could do if I didn't have this condition.

But I will definitely do things like a radical alteration of diet. Also, I've stayed in other countries for over a month, and that didn't seem to help, but maybe it was the environment. And trust me, I will do everything in my power to get rid of these damn things.

Thanks for the reply! I really hadn't thought about some of the things you mentioned. I'm going to have the year after my exams free to do whatever I want, so if I can, I'll try something like you mentioned. There's got to be something similar I can do in my situation.

comment by darius · 2015-04-13T21:34:15.953Z · score: 2 (2 votes) · LW · GW

Here's what's helped for me. I had strong headaches that would persist for weeks, with some auras, which my doctor called migraines. (They don't seem to be as bad as what people usually mean by the word.) A flaxseed oil supplement keeps them away. When I don't take enough, they come back; it needs to be at least 15g/day or so (many times more than the 2-3 gelcaps/day that supplement bottles direct you to take). I've taken fish oil occasionally instead.

I found this by (non-blinded) experimenting with different allegedly anti-inflammatory supplements. I'm not a doctor, etc.

comment by Algon · 2015-04-13T21:39:34.763Z · score: 0 (0 votes) · LW · GW

That's pretty strange. I've never heard of flaxseed oil being effective before. Thanks for the advice, I'll try it out when I can.

comment by ChristianKl · 2015-04-11T18:34:17.064Z · score: 2 (2 votes) · LW · GW

If you searching general things to try, curetogether is good website. It provides a list of 237 Migraine interventions and self reported effects of those interventions.

The strongest recommendation seems to be for "Dark Room and No Noise" and "Sleep".

I would seek a 100% dark room when you sleep. Seek to get a regular schedule with 8 hours of sleep where you go to bed every day at the same time.


Floating tanks are worth trying.

I would use good noise cancellation headphones plus guided relaxation/hypnosis recordings to fight cases of headaches in real time when I can't do anything else anyway.

I expect hypnosis to be helpful based as a prior and quick googling finds a peer-reviewed review that suggests it's helpful.

comment by Algon · 2015-04-11T18:51:31.750Z · score: 1 (1 votes) · LW · GW

Thanks for the advice. Are floating tanks supposed to be a once in a while thing? Also, I do get a lot of sleep. Part of my coping mechanism for migraines is just sleeping huge amounts in my free time. I'd say it takes up 20-30 hours a week of free time. I looked through the most effective things, and I've tried/do them all. Sadly, I have my A-level exams (used for Uni application) in a month or two, so I'm really hoping that something works soon. I'll try the others though Who knows, they might work! Again, thanks for the advice, its much appreciated.

comment by Elo · 2015-04-16T09:17:07.349Z · score: 1 (1 votes) · LW · GW

things you could try altering: Sleep Sleep position/environment Light (exposure of your eyes to light) Food vitamins exercise Posture allergies (non-food, may include fibres, washing powder, local plants , anything that touches your skin i.e. Jewellery, skin-cream, toothpaste, dust, fungi, mould and bacteria)

Other misc: metal toxicity, check for lead in your environment/blood (kits can be purchased online) radiation inner-ear problems (causing potential dizzyness and leading to migranes)

Other other: Someone I knew had a 6 week long reccuring migrane, a doctor recommended taking the maximum safe doses of 3 different panadol (paracetamol), neurophen, aspirin, drugs at once (the ones that work with different mechanisms, I think it was those 3). She woke up in the morning and has been fine since (several years ago).

other other other: any epilepsy run in the family? some people grow out of them as they grow through their teenage years. Have you finished your growing?

comment by Algon · 2015-04-16T09:48:57.600Z · score: 0 (0 votes) · LW · GW

I try to limit my drug intake to what is safe. But I sometimes use as much as I possibly can in one go. Usually, that is when I either have a few days off so I can just get my migraine down to a headache with a lot of drugs (lasts for a day, max) or when it is very bad. When it is very bad, it just reduces it to my normal levels. And I don't think anyone in my family has epilepsy, though quite a few have had migraines. I have stopped growing.

Thanks for the advice, I hadn't heard about the lead kits, or the inner ear problems before. I'll try and get on that.

comment by Elo · 2015-04-16T10:36:35.053Z · score: 1 (1 votes) · LW · GW

The use of the maximum safe dose of all 3 and having success was one piece of anec-data. But if you are trying various things, its still within safe dose.

Do you know what the family members did to help with their migranes?

Side thought - where did your family come from? Perhaps modify your diet (or other factors) to be something like your ancestors, assuming that in an era with less technology, migranes this bad would have meant - less-likely to procreate and pass on the relevant migrane genes.

this site is relevant to my location: http://www.lead.org.au/ Be weary that they may make lead out to be a bigger problem than it actually is. They sell test kits on that site, but you might be able to make one yourself for cheaper, or find one more relevant to your location.

Your inner ear controls which way your brain thinks is up. You have teeny crystals on teeny hairs in your ear, if they become dislodged or moved, or you just have an odd inner ear, it may not work properly (or also inner-ear infections). and you may get all kinds of related sensory troubles like migranes, dizzyness.

re: inner ear - consider this: http://en.wikipedia.org/wiki/Epley_maneuver but also an ear practitioner would be able to help you more.

Also if you are trying things; add to the list all kinds of alternative medicine that is frowned upon but sometimes seems to work for some people some of the time. (lower down the list. Where a treatment will hopefully do no harm, it may also do no good, and so only be worth spending the time and money after other options are explored)

While I am asking questions, what happens if you put your head below the rest of your body; increasing the blood pressure, (for say 5-10 minutes) and then lift your head again above your body? Would that relieve or worsen things?

Consider also dehydration and water intake? Are you dehydrated? (Best way to tell is that your pee should be a very pale yellow colour) (although this is more like a regular-headache problem. Also sun exposure is similarly a regular-headache cause)

Also do you regulate your salt intake?

comment by Algon · 2015-04-16T18:35:19.793Z · score: 0 (0 votes) · LW · GW

I do not hold a high opinion of alternative medicine, but I accept that there is something to it. Some things are genuinely helpful i.e. acupuncture. That said, I don't have them highly placed on my to-try list. However, my father is a big believer in alternative/folk medicine, and the sheer amount/variety of stuff I've tried is just too much to note down here. Not one really did anything. But I'll still try it, as long as it isn't too dangerous.

Also, in regards to the blood pressure thing, I sort of get why that helps some people. Some migraines either cause an excess/deficiency of blood and you can ease the pain by getting blood away/in there respectively. For example, a cold compress causes vasoconstriction (constriction of blood vessels) and cuts the amount of blood in the brain. A heat pack/headstand does the reverse.

Usually, you get one or the other. For me, I get both. They usually result in an increase in pain, but I can combat them relatively quickly. I am also quite hydrated, so that's not an issue. My salt intake is about right, so that's not a worry.

I hadn't thought about modifying my diet, but I eat my culture's food fairly often, so it's probably no that. I'll still put it on the to-try list though.

Thanks for all the advice, you've been really helpful.

comment by bbleeker · 2015-04-15T17:46:35.219Z · score: 1 (1 votes) · LW · GW

Are you female? Then you could try going off the pill and use another form of contraception, or switch to another pill. Migraines can be hormone-related; I used to get them at ovulation and at the onset of menstruation, back when I still had those.

comment by Algon · 2015-04-15T18:13:15.768Z · score: 1 (1 votes) · LW · GW

No, I'm not female. Though I must say, it is rather odd that twice as many females get migraines as males. Perhaps it is largely due to the whole hormonal shifts happening, but I thought that migraines were looking more and more like neurological problems. Thanks for replying though, I appreciate it.

comment by ChristianKl · 2015-04-15T18:44:48.141Z · score: 0 (0 votes) · LW · GW

I thought that migraines were looking more and more like neurological problems.

What do you mean with that? What makes them look like a neurological problem?

comment by Algon · 2015-04-15T19:10:28.997Z · score: 0 (0 votes) · LW · GW

Well, I was reading up on migraines a little while ago, and I read that the latest research seems to indicate that migraines are more neurological than anything else.

Migraines also apparently effect the structure of the brain, altering it slightly. So migraine sufferers have slightly more developed sections of their brains than is normal. Of course, the difference is rather minute.

comment by jkadlubo · 2015-04-20T20:33:09.684Z · score: 0 (0 votes) · LW · GW

I used to have migranes from about 17 until I was 25, and since my solution is strictly for women, I comment here.

My migranes were not a huge problem, mostly because they rarely lasted longer than "until the next day".
And then, when I was about 27 I realized they stopped. They stopped when I had a baby. Last few months I had some bad days, as if the migranes were cominig back, but 5 free years is still nice.

comment by Alicorn · 2015-04-12T21:49:36.916Z · score: 1 (1 votes) · LW · GW

I spent about a month a couple years ago having migraines, which I had never had before and inexplicably stopped having afterwards. I was prescribed a generic version of Fiorecet; you don't mention it or its unusual ingredient (butalbital; it also contains caffeine and acetaminophen). This worked almost completely if I managed to take the pill during my prodomal symptoms (weird visual aura, in my case; I don't know if you get this warning). However, even unmedicated my headaches did not last as long as it sounds like yours do. Apparently Fiorecet isn't customary for migraines, so you may not have tried it.

I also pestered my significant others for neck massages. I do this anyway but it was especially important when I had just had a migraine.

comment by Algon · 2015-04-13T09:01:05.965Z · score: 1 (1 votes) · LW · GW

I guess I'll try the Fiorecet. I've never heard of it before though. And massages do help a bit with me as well, but sadly O'm by far the best at massages in my family, so I've got to do it myself. Luckily, I'm good enough (after years of practice) that I can ease the pain a bit, and know the right spots.

Thanks for the advice, I'll definitely get on it.

comment by skeptical_lurker · 2015-04-12T13:31:16.473Z · score: 1 (1 votes) · LW · GW

If you want conventional advice, I guess the best thing is just to follow what your doctor says.

If you want experimental advice, I went to a talk on rational drug policy, at which it was mentioned that 5-HT2A agonists, aka psychedelic drugs, stop migraines. The theoretical neuroscience behind it checks out too (modulating vasoconstriction).

See this:

http://www.nature.com/news/2006/060911/full/news060911-05.html https://www.erowid.org/plants/mushrooms/mushrooms_article8.pdf

Where cluster headaches are discussed, but cluster headaches and migranes are very similar in terms of treatment.

This might work prophylactically, and might work at dosages below concious perception of mind altering effects, depending from person to person.

Unfortunately I don't see this becoming prescription medicine any time soon, due to the problem that someone could claim to have migraines, and there are not objective symptoms. I don't know your opinions on legality, or what the law is like where you live, but there are also so-called 'legal highs'.

Otherwise, apparently diet works very well, but you have to be extreme about it. Something along the lines of cut out everything except one meat, one vegetable and one fruit, and then if that works add foods back in one at a time.

Transcranial magnetic stimulation is also being tested at some places with promising results, if you want to be on the cutting edge.

I've also tried taking magnesium supplements, but they had a negative effect on me i.e. strange dreams and lack of sleep.

There are far worse side-effects than strange dreams.

I have migraines too, so this is something I am knowledgeable about and interested in discussing. I can stop them using beta blockers, but I'd rather not have to take drugs everyday.

comment by Algon · 2015-04-12T13:58:09.826Z · score: 0 (0 votes) · LW · GW

Well, the dreams weren't that bad, but it basically made me an insomniac for the ten or so days I used them. And, as you might expect, that just made my migraines worse. Also, I take beta-blockers as well (propanalol) but they've done little. If I were you, I'd definitely use them if they worked. But I'm just saying that because my situation is fairly bad, and I haven't had any side effects from them.

The psychedelics look promising, I'll have to keep an eye on that. But they're illegal in the UK for any purposes. I'd definitely keep the dose sub-psychedelic.

TMS also looks promising, so I'm definitely going to ask my doctor about that. I'll also try and get one of the home use ones, if its not too expensive.

By the way, have you found anything particularly effective beyond the usual recommendations?

Thanks for the advice, I really appreciate it.

comment by ChristianKl · 2015-04-12T15:05:33.367Z · score: 1 (1 votes) · LW · GW

Well, the dreams weren't that bad, but it basically made me an insomniac for the ten or so days I used them.

That sounds like pretty strong effect that I wouldn't expect a normal person to have. I would research potential causes. Maybe you have too much magnesium in your system?

comment by Algon · 2015-04-12T15:15:57.358Z · score: 0 (0 votes) · LW · GW

I have a relative who's in the medical field, and when I told him about this, he told me that my body is probably just absorbing the magnesium too quickly. But then again, that may just be because of the type of tablets I was taking http://www.bulkpowders.co.uk/magnesium-bisglycinate-tablets.html. But I probably don't have too much magnesium in my diet. I had a blood test showing normal levels of trace elements and all that jazz.

comment by skeptical_lurker · 2015-04-12T14:28:21.019Z · score: 0 (0 votes) · LW · GW

Insomnia might be an acceptable side effect, if only it cured the migranes. Yes, I am taking beta-blockers - for me there are no noticeable side effects, and I while it would be better to stop migranes without drugs, its far better to use drugs than to have migranes, unless the side effects are really bad.

The psychedelics look promising, I'll have to keep an eye on that. But they're illegal in the UK for any purposes. I'd definitely keep the dose sub-psychedelic.

A quick search indicates that the 'legal highs' have now been made illegal, so that isn't a loophole. BTW, where about in the UK are you from?

TMS also looks promising, so I'm definitely going to ask my doctor about that. I'll also try and get one of the home use ones, if its not too expensive.

I think there are places that do TMS in Bath and London. Its £500 for a prescription TMS hat last time I looked.

By the way, have you found anything particularly effective beyond the usual recommendations?

Beta blockers work well enough for me. I havn't tried diet or TMS, and most of the other drugs didn't work, and/or had really bad side effects.

comment by Algon · 2015-04-12T14:41:23.312Z · score: 0 (0 votes) · LW · GW

I'm from london, so I might check out some places near here, if that's cheaper. And yeah, insomnia would be acceptable if it got rid of the migraines, but no such luck. What were the side effects, by the way?

comment by skeptical_lurker · 2015-04-12T19:11:59.277Z · score: 0 (0 votes) · LW · GW

Do you really want to know the side effects I got from Amitiptyline and risk the placebo effect?

Or is my simply writing this dangerous?

Bloody information hazards.

comment by Algon · 2015-04-12T20:25:02.479Z · score: 0 (0 votes) · LW · GW

Well, I'm taking it, and nothing much has happened so far. I'm due to up the dose in a few days, and I should be off it in a month. So, I think it better to err on the side of caution. Maybe after I'm done with it, and tried a few other things out, we can swap notes?

comment by skeptical_lurker · 2015-04-14T04:35:25.979Z · score: 0 (0 votes) · LW · GW

Seems wise.

comment by adamzerner · 2015-04-12T05:40:06.418Z · score: 1 (1 votes) · LW · GW

It seems to me that you've exhausted the traditional approaches to diagnosing and treating your issue, and that you're unlikely to stumble upon a solution yourself. My guess is that your best bet is to figure out who the real specialists are and see one.

I also suspect that there are a lot of tests that could be done that your doctors haven't ordered due to costs, and that would be useful. Depending on your financial situation and how much this means to you, perhaps you could make it clear to them that you would like more extensive testing and are willing to pay for it. Similarly, it might be worth paying them to tighten the feedback loop.

Normal doctors can often be incompetent. Example: I've been having problems with my achilles for over 6 months now. I've since consulted with a foot specialist, two general practitioners, and two physical therapists, none of whom offered me good advice. In doing some research online, I've come across a treatment that has been shown to be very effective and has a ton of studies supporting it. I had prodded all the doctors to tell me all of the treatment options available to me, and none of the mentioned this. Moral of the story is that sometimes there exist good options that your doctors don't know about. I had similar experiences with DSPS too.


Brainstorming

Normal Options:

  1. Figure it out yourself.
  2. Normal doctors.
  3. Specialists.

Other options:

  1. As Shminux mentions, "MetaMed used to offer custom medical research and advice, but they appear defunct." Too bad. Maybe similar services exist.
  2. Come up with a better way to incentivize your doctors. Maybe you could figure out how to motivate them to actually brainstorm, do research, explore alternatives, quicken the feedback loop etc.
  3. Look into what the available clinical trials are. Maybe reach out to Neurology departments at universities.
  4. Use Amazon Mechanical Turk to pay people to research what your options are for you.
  5. Perhaps there are some sort of organizations for people with migranes that you could reach out to.
  6. Take the time to really educate yourself. There are different extremes to which you could take this ranging from "just read a handful of lit reviews" to "studying neurology more formally".
comment by [deleted] · 2015-04-14T08:26:19.491Z · score: 0 (0 votes) · LW · GW

This is interesting. On Reddit and places like that, the go to advice is ask-your-doctor. Assuming doctors know the most / best. Well, they are supposed to, but it happens rather regularly that ten minutes of googling gives me treatment ideas that none of the doctors I know have heard about and they are proper clinically tested ones. I think very often they don't keep up, just sticking to what they learned decades ago. (Is that even possible? Isn't there such a thing as mandatory journal subscription?)

It feels weird to know things a layman that experts don't.

For example I have all sorts of posture problems and upper traps pain, and frankly none of the docs I know even heard about anything like this (admittedly, it is not a good example of clinical testing as this isn',t still):

https://www.t-nation.com/training/de-constructing-computer-guy-1

https://www.t-nation.com/training/de-constructing-computer-guy-2

(very much recommended to everybody who spends a lot of time on the computer, one of the best articles in this regard)

comment by adamzerner · 2015-04-14T13:48:17.292Z · score: 0 (0 votes) · LW · GW

Well, they are supposed to, but it happens rather regularly that ten minutes of googling gives me treatment ideas that none of the doctors I know have heard about and they are proper clinically tested ones.

Yeah, I've seen a handful of cases like this as well. It'd be interested to hear from some sort of insider what the truth is. I suspect that you're right and that they are biased towards what they learned and are biased against what the new research says.

comment by Algon · 2015-04-12T07:26:28.987Z · score: 0 (0 votes) · LW · GW

I've tried a few of those things; I believe that the neurologist I went to is quite good with dealing with migraines, and I have another appointment with someone of similar standard. In regards to 5, I was thinking of taking a course on neurology on edX. It may well help. Thanks for the advice, I hadn't heard about 4, and I was a little cautious about 3.

comment by NancyLebovitz · 2015-04-11T23:33:38.400Z · score: 1 (1 votes) · LW · GW

Have you checked for allergies and food sensitivities? I used to know someone who would get migraines a few days after eating seafood.

comment by Algon · 2015-04-12T07:20:57.133Z · score: 1 (1 votes) · LW · GW

I've been keeping a food diary, and there seems to be no clear correlation with any foods I've been eating. But, since I have migraines pretty much non-stop, its a bit tricky to discern what's causing what. I had a blood test, which said I had no allergies, but my doctor told me they weren't much help. Anyway, I'll try kicking seafood off the menu, and see what happens. Thanks for the advice.

comment by taryneast · 2015-04-13T04:39:46.754Z · score: 3 (3 votes) · LW · GW

Seafood is only one possibility. If you're going to try diet-related control, you'd be better off using an elimination diet (google the details) - where you basically cut down to some very bland things, and see if the effect stops... then start adding things back one at a time until one thing triggers it (and then don't eat that thing)... continue until you know all your triggers.

In your case - if you cut down to the bland diet and stay that way for a week, and you're still getting migraines - then it wasn't your diet.

comment by Unknowns · 2015-04-13T04:50:48.987Z · score: 2 (2 votes) · LW · GW

I have seen people try this method and have the strong suspicion that in some cases, the effect stopped due to the placebo effect, because the person thought that food had something to do with it. Then the effect returned together with various foods based on random chance, and the person became forever convinced that that particular food was bad for them.

comment by Algon · 2015-04-13T09:05:32.506Z · score: 2 (2 votes) · LW · GW

I really don't care if its the placebo effect. If it works, then yay! I mean, I'd rather lose a type of food than be mentally crippled for the rest of my life. But I think I may agree with you on the food point. Its probably that when you cut it down to the necessary things, you're diet gets a lot healthier. And as you add more and more food, there comes a tipping point and you get migraines again. "Oh no! I have migraines again! When did they start? About when I put Generic Food X back in. Hmm, that's probably the case" And they never ate Generic Food X again...

Regardless, I could definitely be healthier, so I'll give it a go.

comment by taryneast · 2015-04-26T12:24:52.579Z · score: 0 (0 votes) · LW · GW

Yes, that is a plausible pathological case. But... some people definitely have specific diet-related triggers (sulfates is a common one) and if you have those... it's worth finding that out.

If you're worried about false-positives - then go see a dietician to do it however the proper way is to make sure.

comment by Algon · 2015-04-13T09:07:02.279Z · score: 1 (1 votes) · LW · GW

I've heard about the elimination diet a few times now, and I think I'll get off my ass and do it. I would've thought though that I'd need to give it a bit longer than a week. Well, let's see how it goes. And thanks for the advice, it's definitely welcome.

comment by Elo · 2015-04-16T08:34:06.590Z · score: 0 (0 votes) · LW · GW

Be warned: The elimination diet may remove joy and happiness from your life as you eliminate every single food you like. it may be worth it depending on how bad the migranes are.

comment by Algon · 2015-04-16T08:54:21.762Z · score: 0 (0 votes) · LW · GW

I have rather unusual ability. That is, when I pull together the will power, I am able to make myself like a food. I usually don't do this because 1) I am quite lazy by nature 2) I don't like those types of foods in the first place. But if it turns out that I can only eat foods I dislike, I can just force myself to like them.

Even if I couldn't it would definitely be worth it.

comment by Elo · 2015-04-16T10:21:09.704Z · score: 1 (1 votes) · LW · GW

eventually as foods are eliminated you are left with very simple, very plain foods. i.e. plain rice. for a few weeks.
if you take out: spice alcohol chocolate sugar several oils some beans mushrooms, fungi wheat milk meat (I think) seafood and more that escapes my memory

you end up with not a whole lot left... Its been many years since I had exposure to the elimination diet but it is very hard work. I have seen someone graph their migranes in relation to succeeding at the elimination diet. The elimination program they were on involved eating plain food for 10 after their last migrane and then trying a sample from a set of (20?) pill-bottles which contained one of the eliminated substances. it looked like - 5 days after they had any foods they stopped having migranes.

But as one might begin to question - what is life without chocolate, wine, beer, sugar. Their migranes were not as bad as you describe yours, but when I met them they were gradually transitioning to the opinion of accepting the occasional migrane as long as they still had a glass of wine once a week.

comment by Algon · 2015-04-16T18:26:29.636Z · score: 0 (0 votes) · LW · GW

Wow, your friend must really love wine. I don't drink alcohol, but is it really all that? I just assumed that most people have alcoholic beverages for the 'buzz'/intoxication.

comment by Lumifer · 2015-04-16T18:31:54.982Z · score: 1 (1 votes) · LW · GW

I just assumed that most people have alcoholic beverages for the 'buzz'/intoxication.

That highly depends on who "most people" are. Most college students at a party drink alcohol for a very different reason than e.g. most people who go on tours of the Napa Valley.

comment by Algon · 2015-04-16T18:38:21.074Z · score: 0 (0 votes) · LW · GW

So is the taste very different to other drinks? I mean, its such a staple in so many parts of the world, I can't help but think its either: delicious, unique or just an easy to get intoxicant. Maybe all of the above.

comment by Lumifer · 2015-04-16T18:48:13.637Z · score: 2 (2 votes) · LW · GW

Not only the taste is different to other drinks, there is a great variety of complex flavors available. Wines can be very very different from each other so that you can pick a region/style/vineyard/etc. that matches your individual taste and change it as often as you like.

A non-alcoholic comparison would probably be cheese -- it also can be very different and have complex flavors. Some people don't care and eat the yellow goo (aka American cheese, ugh), and some people do care very much.

comment by Algon · 2015-04-16T19:22:58.397Z · score: 0 (0 votes) · LW · GW

But haven't studies shown that wines are a lot more similar than people think? As in, very cheap, common wines are considered to be as good as high quality wines by wine testers when they don't know what it is.

The cheese example is interesting though, That's probably the best way I've heard it described.

comment by Lumifer · 2015-04-16T19:57:33.352Z · score: 1 (1 votes) · LW · GW

But haven't studies shown that wines are a lot more similar than people think?

No, studies have shown that people suck at placing empirical taste on a one-dimensional "cheap low-status wine -- expensive high-status wine" axis. Different wines do taste very differently and it's trivially easy to verify.

comment by Algon · 2015-04-16T20:31:42.339Z · score: 0 (0 votes) · LW · GW

Oops, sorry, I was being stupid. For some reason, I equated quality and variety. My bad.

comment by Elo · 2015-04-17T01:21:54.862Z · score: 0 (0 votes) · LW · GW

extra note, I believe the proportion of migranes was related to the amount of drinking. so drinking once a week would be minimal migranes, drinking a glass a night would be too many migranes.

comment by Elo · 2015-04-17T00:58:33.771Z · score: 0 (0 votes) · LW · GW

I have come to the conclusion that I taste things differently to a large subset of the population. I have a very sweet tooth and am very sensitive to bitter flavours.

I don't eat olives, most alcohol only tastes like the alcoholic aftertaste (which apparently some people don't taste) - imagine the strongest burning taste of the purest alcohol you have tasted, some people never taste that, I taste it with nearly every alcoholic beverage. Beer is usually awfully bitter too.

The only wine I could ever bother to drink is desert wine (its very sweet) and only slowly. (or also a half shot of rum and maple syrup)

Having said all this - yes; some people love their alcoholic beverages for their flavours.

Maybe this is a worth a separate thread...

comment by Elo · 2015-04-17T01:38:52.997Z · score: 0 (0 votes) · LW · GW

separate thread: http://lesswrong.com/lw/m2r/lesswrong_experience_on_alcohol/

comment by drethelin · 2015-04-11T22:16:50.601Z · score: 1 (1 votes) · LW · GW

Does alcohol have any effect? My girlfriend suffers from TMJ which causes her headaches and alcohol helps her jaw muscles relax.

comment by Algon · 2015-04-11T22:31:17.271Z · score: 1 (1 votes) · LW · GW

Well, I shouldn't think so. From what I understand, alcohol is one of the most common triggers for migraines. And I don't touch the stuff. Honestly, I expect it would do more harm than good, at least in my case. I hope you're girlfriend gets better though.

comment by shminux · 2015-04-11T20:32:01.547Z · score: 1 (1 votes) · LW · GW

MetaMed used to offer custom medical research and advice, but they appear defunct.

comment by Dreaded_Anomaly · 2015-04-12T05:40:53.142Z · score: 2 (2 votes) · LW · GW

I find their site on the wayback machine as recently as March 22, 2015. OP could also try PMing user:Zvi.

comment by Algon · 2015-04-12T07:28:46.215Z · score: 0 (0 votes) · LW · GW

Thanks. That may turn out to be useful. By the way, is Zvi somehow involved with Metamed, or just medically knowledgeable?

comment by Dreaded_Anomaly · 2015-04-12T16:07:21.684Z · score: 1 (1 votes) · LW · GW

Zvi is their CEO.

comment by Algon · 2015-04-12T16:27:16.008Z · score: 0 (0 votes) · LW · GW

Well, that's convenient. Thanks for the info.

comment by SanguineEmpiricist · 2015-04-19T21:52:22.314Z · score: 1 (1 votes) · LW · GW

Oh wow, what happened? If stuff like this isn't doing well they should reach out to at least their sympathetic community.

comment by [deleted] · 2015-08-08T03:37:47.079Z · score: 0 (0 votes) · LW · GW

@Alicorn, have you managed to fix this problem yet?

I read that a while back and I've been thinking about it for a while. After reading the discussion post in this thread, I thought I'd post this suggestion since the community doesn't appear to have a consensus approach to the problem.

Alicorn, have you considered adding more dimensions than diet to your self-tracking? And @Algon, have you considered self-tracking. If I had migraines constantly, it would be well worth my time to figure out the problem. I've been brainstorming dimensions to assess over the last few days and came up with a spreadsheet. I've come up with the broadest possible set of dimensions. Realistically, it might be hard to enter in values into the sheet at regular intervals, but depending on how important this is to you I'd narrow the scope from all to some.

Right now the variables I have in it are:

Anxiety level Emotional state Energy level Thoughts People Temperature Mood Comfort Memories Sensations Awareness Attention Beliefs Time Visualisation Identity Sequence of introspection attribution style confidence self esteem empathy risk perception diet cognitive distortions exercise attachment style expectations subjective wellbeing rating personality arousal

If you have any mental disorder symptoms, I'd recommend adding a variable for that too. For instance: psychosis, or obsessive thoughts.

Now, the next step up would be to go from subjective ratings of these categories, to more 'objective' ratings. I don't know what literature exists on the execution of psychometric tests, so I'm going to assume its irrelevant and the formalisation of the occupation of psychometrics is more a protectionist measure than something inherently dire.

The way psychometricians make assessment of variables formal is to ask specific questions.

Does anyone know, re there question banks for psychometricians? Psychometrics is about assessing particular psychological variables through structures tests and interviews. With such a tool, psychometricians designing new scales, inventories and constructs can simply use that search engine to find relevant questions. I suppose the traditional way to do things is just to trawl through the literature for related domains and just to individually extract items. Say, a question that assesses mood in a depression inventory might be taken from a paper constructing the depression inventory then brought into a novel inventory along with other dimensions of interest from different inventories. However, I'm not a psychometrician and haven't read the seminal works in the field nor the textbooks, only Wikipedia, a couple of guides to parts of the field on university websites, and individual papers of interest. Can someone enlighten me?

Edit: Beware, rationalists. Quantified self seems like a good option only after exhausting population wide studies - which are the source of other people's recommendations here and in Alicorn's thread. Take quote Gwern:

Confirmation bias is an issue in self-experimentation/Quantified Self because one is already at a disadvantage in evaluating the results - humans don’t weigh them very well; satt points out that (via the Bienaymé formula) “An RCT with a sample size of e.g. 400 would still be 10 times better than 4 self-experiments by this metric.” If one encountered 4 immaculately run self-experiments, I suspect they would feel like more evidence than 1/10th that RCT. When you toss in any selection effects (due to confirmation bias), the value of those 4 trials plunges even further.

Fortunately, just as there is a somewhat easy way to test for status quo bias, there’s also a somewhat easy way to test for confirmation bias: simply present a high-quality result - with the reverse of the true outcome. Or present the initial data about the setup and whatnot, but hide the results. (The savvy will recognize this as similar to Robin Hanson’s proposal for result-blind peer review.) Or better yet, present the same study with both egosyntonic and egodystonic. If the subject rates them differently, well, the only varying factor was the outcome… (One of the tests on YourMorals.org does just this by rewording a ‘study’ on gun control.) This is a strategy similar but not identical to a Sokal affair, since the subjects in the Sokal affair could plausibly claim that they didn’t understand the pseudo-physics and were trusting the word of a physics & mathematics professor in good standing - in a confirmation bias test, the subject must understand the material and reject it because it conflicts with his prior beliefs.

comment by [deleted] · 2015-04-12T05:02:54.825Z · score: 0 (0 votes) · LW · GW

There is a particular weather pattern called the Chinook Wind that is sometimes a cause of migraines. nih.gov / Wikipedia. Strangest thing but peer reviewed and tentatively confirmed. Moving to a location without Chinook Winds might help. Or knowing they are coming might help one prepare.

comment by Algon · 2015-04-12T07:22:36.240Z · score: 1 (1 votes) · LW · GW

That is really weird. But they don't occur where I live, so I can rule that out. I wonder why this happens though?