Migraines and triggers and misinformation

[LostAngeles]

This seems like just the thread I've been looking for. I already asked about this in the thread regarding Head On but I didn't get any satisfactory answers.

As I've said, I've been suffering from chronic migraines for most of my life now. Most manifest themselves as cluster headaches, however there are a number of significant differences between my migraines and the ones most sufferers get. They have no auras and come as they please, without warnings. They have no food triggers that I am aware of, and I've tried ruling many of them out without avail. As far as I can tell, these are not your typical migraines.

Finally, and I say this without exaggeration, there is always a certain degree of undue and often debilitating pain at any given moment of my waking life. Because of the chronic headaches, I cannot function normally or lead a normal life in any sense of the word. The pain has knocked me out, impaired my mental functions, and has driven me to self injury at certain points in my past.

I've been to a couple of neurologists, but they couldn't figure it out. One told me to get my depression treated, because he believed that was the cause. My psychiatrists tried this, but all that accomplished was my being drugged up AND in constant pain. OTC painkillers do not work anymore because I've built up such a resistance to them, and the rebound headaches don't make them worth it. I have not gone on prescription painkillers because my physician was reluctant to prescribe them, since they're habit forming. I've tried caffeine too, but I've found out that like the OTC painkillers, it only works for an hour or so, and then I have to deal with all the side effects.

To repost what I said in the other thread, the causes I have identified as most likely are sleep deprivation, stress, changes in blood pressure, bright lights, smoke, motion sickness, or anything that causes a dilation or constriction of blood vessels in my head. In other words, life itself is my trigger. To phrase it more cynically, it hurts to live. The headaches never truly go away; at the most they lessen to the point of being somewhat tolerable for a short time.

What can I do?

I've mentioned this so many times, I must sound like a ****ing shill.

Have your neurologists tried any drugs to prevent the migraine? I've been doing treatment for status migrainosis for nearly a year now. They gave me steroids to break it first and then put me on a tricyclic anti-depressant to prevent the attacks. It didn't work so well and I reacted badly to it. I'm now on a drug that has yet to be FDA approved for migraines, but it works pretty well. My migraines are down significantly and the triptans they give me will generally work. Before that we went through all three that insurance would allow and then back to the first one they tried and I'm back to Maxalt.

The drug is Lecthin. L-E-... I'm kidding. It's called Namenda. I really like it. The worst that happens is some brief inattentiveness and occasional dizziness.

Before, I could sort of describe things like you are. Constant pain, sometimes getting worse, never really getting better just moving back down to the same level after getting worse. At times I would just stop whatever the hell it was I was trying to do and wait to see if it would kill me. I figured at this level of pain, it's obviously doing its damndest to try.



Seriously, talk to them about a preventive medication. Sometimes it's the anti-depressants at a low dose, sometimes it's something else. I think they even give ergot-derived drugs (which I think is the rye mold that causes hallucinations) for this.

 

[LostAngeles]

I have had migraines since I was about 5. From then until about the age of 15 my mom and dad tried everything. I have even been to Elizabeth Taylor's personal migraine doctor in NYC. My mom kept logs and journals. She tried cutting out dairy, cutting out bread, cutting out foods with dyes in them (I really liked hot dogs). I have been to allergists. I was on weekly allergy shots for years. I am sorry to say that we never really found any correlation between diet and migraines or allergy's and migraines. I started a thread on biofeedback.
http://www.internationalskeptics.com/forums/showthread.php?t=104733migraines.

Biofeedback works, but for me is not practical because I have to be in a sound and light free environment and I am rarely able to do that. Liz's doc told me to start taking Excedrin as soon as I started having the aura or the flashing lights and that worked really well for the next 30 years until I ended up in the hospital with ulcers. I now have a neurologist that has me on the right path. I take 2 prophylaxis meds, nortrytilene and verapamil and when I feel a headache coming on I take a relpax. WOW! Who new you could take a pill to make a migraine go away? The best a part is it is a non-narcotic. I am in recovery from addiction and would not be able to take anything else. My headaches are down from daily to 2-3 per month. I feel like now I have my triggers fairly well isolated. 1)If I forget to eat and 2)stress.

Yeah, narcotics fail on migraines apparently, but they'll give them if you really want them. (Or at least, UCLA Medical Center: Halloween for Heroin Hounds does.) Narcotics only provide temporary relief at best.

 

[Phaycops]

They've linked migraines to a phenomenon called, "cortical spreading depression." I don't really know what that is either.

THANKS! This is more the kind of info I was looking for. I've got a good list of questions going for when I finally see a neurologist, that's for sure. I'm a little bit frustrated because I don't feel like my GP is giving me good information or answering my questions (like I said, there is a bit of a language barrier, too, though), and I know a lot of doctors don't feel like giving their patients more "sciency" information because doctors think patients are stupid. Thank goodness for the JREF.

To the folks suffering with migraines -- stop taking narcotics and OTC NSAIDs. Go to the doctor and get some triptans. They're expensive, but I'll gladly pay $20 a pill to make my migraines go away. Good luck.

Question on the magnesium -- I've heard magnesium chloride and magnesium citrate for preventative measures. Is this substantially different from the plain elemental magnesium sitting next to the vitamins? I would assume magnesium is magnesium, but I'm not sure how the different ways of getting it into your body would affect its availability.

 

[Phaycops]

Ooh, from the wikipedia article:

In 2005, authors who reviewed the medical literature[48] found that the available information about dietary trigger factors relies mostly on the subjective assessments of patients. Some suspected dietary trigger factors appear to genuinely promote or precipitate migraine episodes, but many other suspected dietary triggers have never been demonstrated to trigger migraines. The review authors found that alcohol, caffeine withdrawal, and missing meals are the most important dietary migraine precipitants. The authors say dehydration deserves more attention, and that some patients report sensitivity to red wine. The authors found little or no demonstrated evidence that notorious suspected triggers chocolate, cheese, or that histamine, tyramine, nitrates, or nitrites normally present in foods trigger headaches.

I kind of feel like I'm wasting my time now keeping a journal.

 

[Lisa Simpson]

To the folks suffering with migraines -- stop taking narcotics and OTC NSAIDs. Go to the doctor and get some triptans. They're expensive, but I'll gladly pay $20 a pill to make my migraines go away. Good luck.

I can't take triptans. It makes me feel like I cannot breathe or swallow. There is no drug that is a magical elixir for everyone.

 

[robinson]

To phrase it more cynically, it hurts to live. The headaches never truly go away; at the most they lessen to the point of being somewhat tolerable for a short time.

What can I do?

Hmm. I had persistent, crippling headaches from around age 4 until age 39. EEGs, PET scans, MRIs, CAT scans, nobody could say why. Tried diet changes, potent drugs, (both pain meds as well as Dihydroergotamine and ergotamine), woo herbs, magnets, massage, prayer, sex, exercise, hydrotherapy, nothing would relieve them. Sound, light, smells, everything hurt, the pain was so intense I could become delirious, almost blind.

Even a shot of Demerol only slightly decreased the suffering, but the side effects of that were as bad as the headache. And you had to go to the ER and wait hours to even be seen. (Oh what horror that can be, the smells, the lights, the noise)

Life could become a living hell, at any time, suicide seemed an option at times. How could such a horrible situation even be possible. It was unfair, and most people didn't have anything close to such episodes, so there was suspicion of malingering.

One Doctor told me he could treat me, and the next time I started getting one to come see him. I told him they might happen at night or on the weekend. He said call the Emergency number, he would meet me at the office.

So of course I did, a week later. I had no hope really, but what could it hurt. The drive there was horrible.

20 minutes later I had relief, within an hour no headache. Never had one since. Cost me 25 dollars.

You can scoff, doubt, sneer and mock me all you want, I don't care. I am free of the worst pain I ever had, and have a life. I love my Doctor, and he still will meet me at the office anytime if I get a headache.

I grew up skeptical, suffered a lot of pain, and ended up being saved by somebody I was told was a quack. Later, I researched how he did it, and found it was evidence based medicine.

What can you do? Find someone who has found the answer to your problem, then do what they did.

If the pain is anything like mine, you won't care about anything except if it works.

 

[robinson]

For the record, I don't get headaches like that anymore, but it is nice to know if I do, relief is less than an hour away.

Life is good.

 

[Frozenwolf150]

Have your neurologists tried any drugs to prevent the migraine? I've been doing treatment for status migrainosis for nearly a year now. They gave me steroids to break it first and then put me on a tricyclic anti-depressant to prevent the attacks. It didn't work so well and I reacted badly to it. I'm now on a drug that has yet to be FDA approved for migraines, but it works pretty well. My migraines are down significantly and the triptans they give me will generally work. Before that we went through all three that insurance would allow and then back to the first one they tried and I'm back to Maxalt.

The drug is Lecthin. L-E-... I'm kidding. It's called Namenda. I really like it. The worst that happens is some brief inattentiveness and occasional dizziness.

Your experience with the anti-depressants sounds a lot like what I went through. I quickly built up a resistance to the benefits, thus they had to increase the dosage, but in the meantime the side effects kept getting worse. It's strange, but I was so sensitive to certain anti-depressants that if there was even a rare side effect, I would end up getting it to some degree. Given my current situation, I'm not in much of a position to go on an experimental treatment, and I'm especially reluctant to take anything that might be habit-forming or have mind-altering side effects.

Before, I could sort of describe things like you are. Constant pain, sometimes getting worse, never really getting better just moving back down to the same level after getting worse. At times I would just stop whatever the hell it was I was trying to do and wait to see if it would kill me. I figured at this level of pain, it's obviously doing its damndest to try.



Seriously, talk to them about a preventive medication. Sometimes it's the anti-depressants at a low dose, sometimes it's something else. I think they even give ergot-derived drugs (which I think is the rye mold that causes hallucinations) for this.

Thanks for the advice, but see above. Anti-depressants have not worked. Ergot-derived drugs are probably out of the question. I have to be careful even with OTC painkillers, because for a time, the rebound headaches were causing me serious problems. I actually had to stop taking drugs of any kind in order to ease the pain, but then I was right back where I started.

Hmm. I had persistent, crippling headaches from around age 4 until age 39. EEGs, PET scans, MRIs, CAT scans, nobody could say why. Tried diet changes, potent drugs, (both pain meds as well as Dihydroergotamine and ergotamine), woo herbs, magnets, massage, prayer, sex, exercise, hydrotherapy, nothing would relieve them. Sound, light, smells, everything hurt, the pain was so intense I could become delirious, almost blind.

Even a shot of Demerol only slightly decreased the suffering, but the side effects of that were as bad as the headache. And you had to go to the ER and wait hours to even be seen. (Oh what horror that can be, the smells, the lights, the noise)

Life could become a living hell, at any time, suicide seemed an option at times. How could such a horrible situation even be possible. It was unfair, and most people didn't have anything close to such episodes, so there was suspicion of malingering.

One Doctor told me he could treat me, and the next time I started getting one to come see him. I told him they might happen at night or on the weekend. He said call the Emergency number, he would meet me at the office.

So of course I did, a week later. I had no hope really, but what could it hurt. The drive there was horrible.

20 minutes later I had relief, within an hour no headache. Never had one since. Cost me 25 dollars.

You can scoff, doubt, sneer and mock me all you want, I don't care. I am free of the worst pain I ever had, and have a life. I love my Doctor, and he still will meet me at the office anytime if I get a headache.

I grew up skeptical, suffered a lot of pain, and ended up being saved by somebody I was told was a quack. Later, I researched how he did it, and found it was evidence based medicine.

What can you do? Find someone who has found the answer to your problem, then do what they did.

If the pain is anything like mine, you won't care about anything except if it works.

But wait, what specifically DID you have done? Sorry if I missed it, but I don't think you mentioned what kind of treatment your doctor administered.


Also, I don't mean to sound like an ingrate, but I would request that people please include a list of potential side effects for any drug or treatment they recommend in this thread. I know it's probably easy enough to look it up, but this isn't just for my sake, and given the nature of this thread, I think it would help to have that information as well.

 

[Chris Haynes]

My interest in this thread is because I married into a family plagued by migraines. One of my children does get migraines (the one with the seizure history, and it is not a coincidence: there is a fine line between migraine and seizure).

Anyway, I saw this editorial this morning by Oliver Sacks (a migraine sufferer):
http://migraine.blogs.nytimes.com/2008/02/13/patterns/index.html

His book on migraine was an interesting read (where I learned the similarity between seizures and mgraines):
http://www.oliversacks.com/migraine.htm

Also, All In My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headacheby Paula Kamen is an interesting combination of science and her personal search for relief (with some side notes into quackery).

 

[LostAngeles]

Your experience with the anti-depressants sounds a lot like what I went through. I quickly built up a resistance to the benefits, thus they had to increase the dosage, but in the meantime the side effects kept getting worse. It's strange, but I was so sensitive to certain anti-depressants that if there was even a rare side effect, I would end up getting it to some degree. Given my current situation, I'm not in much of a position to go on an experimental treatment, and I'm especially reluctant to take anything that might be habit-forming or have mind-altering side effects.

Thanks for the advice, but see above. Anti-depressants have not worked. Ergot-derived drugs are probably out of the question. I have to be careful even with OTC painkillers, because for a time, the rebound headaches were causing me serious problems. I actually had to stop taking drugs of any kind in order to ease the pain, but then I was right back where I started.
...

I also react badly to anti-depressants, especially SSRIs. I get the rare side effects on those ones. But as I said, there's a lot of other drugs. The drug Namenda that I mentioned is not an anti-depressant, nor an ergot-derived drug. It's an Alzheimer's drug with (apparently) minor side effects that I already mentioned. I was also offered beta-blockers and anti-convulsants before we went with Namenda. It was my luck, having seen the article on UCLA's website and that the attending physician that day was one of those who was involved in the research that got me Namenda.

So in short your options for preventive meds are:

anti-depressants
beta-blockers
anti-convulsants
Namenda

and wiki even mentions asprin. Check it:

The most effective prescription medications include several drug classes:

* beta blockers such as propranolol and atenolol. A meta-analysis by the Cochrane Collaboration of nine randomized controlled trials or crossover studies, which together included 668 patients, found that propranolol had an "overall relative risk of response to treatment (here called the 'responder ratio')" was 1.94.[62]
* anticonvulsants such as valproic acid and topiramate. A meta-analysis by the Cochrane Collaboration of ten randomized controlled trials or crossover studies, which together included 1341 patients, found anticonvulsants had an "2.4 times more likely to experience a 50% or greater reduction in frequency with anticonvulsants than with placebo" and a number needed to treat of 3.8.[63] However, concerns have been raised about the marketing of gabapentin.[64]
* antidepressants include tricyclic antidepressants (TCAs) such as amitriptyline and the newer selective serotonin reuptake inhibitors (SSRIs) such as fluoxetine. A meta-analysis by the Cochrane Collaboration found selective serotonin reuptake inhibitors are no more effective than placebo.[65] Another meta-analysis found benefit from SSRIs among patients with migraine or tension headache; however, the effect of SSRIs on only migraines was not separately reported.[66] A randomized controlled trial found that amitriptyline was better than placebo and similar to propranolol.[67]

Other drugs:

* Sansert was withdrawn from the US market by Novartis, but is available in Canadian pharmacies. Although highly effective, it has rare but serious side effects, including retroperitoneal fibrosis.
* Namenda, memantine HCI tablets, which is used in the treatment of Alzheimer's Disease, is beginning to be used off label for the treatment of migraines. It has not yet been approved by the FDA for the treatment of migraines.
* ASA or Asprin can be taken daily in low doses such as 80 to 81 mg, the blood thinners in ASA has been shown to help some migrainures, especially those who have an aura.

http://en.wikipedia.org/wiki/Migraine#Preventative_treatment

 

[robinson]

But wait, what specifically DID you have done? Sorry if I missed it, but I don't think you mentioned what kind of treatment your doctor administered.

I certainly did not mention it. Nor will I. It is a medical procedure that is known, and used for migraines. It is also considered quackery, hence I am torn between my human desire to help others who suffer, and the sure knowledge that doing so here will result in a flurry of non-scientific nonsense, debunking and other forms of delusional behavior, from people who are not Doctors, and who nothing about it.

Who needs that? As I said, if you have exhausted all possible solutions, (and I didn't even mention many I tried), and you find something that works, you just don't care what anybody says.

At the time I was still on a strict diet, and avoided all triggers, alcohol, chemical solvents, fluorescent lighting, sleeping without medical devices, stress, etc etc, none of which eliminated the headaches.

Though I had decreased the frequency by doing so, I still lived in constant dread of "the headache", which I called it, because it was always the same one. It wasn't always as bad, and huge amounts of scrips could blunt the worst of it at times, but it always lurked, a monster that deprived me of a life.

I hardly ever use any pain meds now, and do not live in fear.

For those who don't have severe headaches, if you ever had a really bad hangover, the kind where your eyes hurt, and you puke until you have the dry heaves, it is like that. Only worse, and it lasts for days sometimes.

I wouldn't even have mentioned any of this, except that comment touched a nerve, the asking of what to do?

I know that space. I lived in it for longer than I care to recall.

Maybe you don't have the same migraines, maybe it is something different for you, I don't know. I'm not a Doctor. Nor do I give medical advice of any kind. I suggest seeking out someone that has had the same kind of problem, who has found a solution, then ask them how they found relief.

I wish I had thought of that many years before.

 

[BenBurch]

...
Question on the magnesium -- I've heard magnesium chloride and magnesium citrate for preventative measures. Is this substantially different from the plain elemental magnesium sitting next to the vitamins? I would assume magnesium is magnesium, but I'm not sure how the different ways of getting it into your body would affect its availability.

Yes, Magnesium Carbonate and other Mg-bearing minerals are not very bio-available. Your stomach acids are just not good at cracking the Mg out. You really want a salt which dissociates or citrate which binds very weakly to the Mg. I strongly recommend the MgCl salt in the Slo Mag or its cheaper clones because it is very bio-available and also balanced with calcium which keeps you from having bone issues as an added benefit.

It also makes insulin in your body work better.

And you can take large doses of this safely; Women in labor are routinely given HUGE injections of MgCl (like taking a whole bottle of the Slo-Mag) to smooth out contractions and you know that would not be done if there were any thought it was damaging to either mother or child.

 

[luchog]

Ooh, from the wikipedia article:

I kind of feel like I'm wasting my time now keeping a journal.

Well, Wikipedia is hardly an authoritative source; and there are demonstrable links to allergies and sensitivities; so if you do have any undiagnosed food allergies, the food log could still be useful.

 

[luchog]

I also react badly to anti-depressants, especially SSRIs. I get the rare side effects on those ones. But as I said, there's a lot of other drugs. The drug Namenda that I mentioned is not an anti-depressant, nor an ergot-derived drug.

I'll have to look into that one. However, if it still affects the serotonin system then it's likely I will not be able to use it. I cannot use Immitrex for that very reason, it acts on the serotonin system like SSRIs, and the inevitable side effects are often worse than the migraine itself.

 

[LostAngeles]

I'll have to look into that one. However, if it still affects the serotonin system then it's likely I will not be able to use it. I cannot use Immitrex for that very reason, it acts on the serotonin system like SSRIs, and the inevitable side effects are often worse than the migraine itself.

Yeah, Imitrex messed me up too. I wish I was better with biology or chemistry, but Namenda seems to be doing something um... involving ions? I don't know, but it doesn't appear to work on the serotonin system.

 

[Phaycops]

I can't take triptans. It makes me feel like I cannot breathe or swallow. There is no drug that is a magical elixir for everyone.

Sigh. Lisa, I usually like your posts and find you intelligent, but this really sounds like you've got a major chip on your shoulder. This is part of why I kind of hate the internet, and was hesitant to even post this question here. I'm sorry you didn't find relief from triptans, but narcotics aren't the answer either -- the research I've come up with (online, IANAD) seems to indicate that narcotics don't act in the right way to provide relief from migraines. Triptans act on the blood vessels, which is what causes migraine pain and other symptoms. Some people may be allergic or have adverse reaction, but using the wrong drugs over and over isn't gonna help either. So chill out, and I'm sorry if I sounded like triptans are the "magical elixir." Yeesh. Stress gives me a migraine, so I think I'm done with the internets for a while. No matter how minor the question is, someone's gotta come in with some kind of attitude. See ya all later, and I hope some of you folks find some relief. Sorry I even asked.

 

[alfaniner]

Oddly enough, I just read something this morning about "mirror-induced" migraines. Someone performed an experiment swapping the visual cues for right and left hand, and this appeared to bring on the condition.

I've had some luck with the old "pinch the web between your thumb & forefinger for 30 seconds, hard" technique. (You have to get the muscle/nerve, underneath, not just the skin). But since I pulled back from drinking at least two Java City coffees a day, I haven't had one in quite some time. I still have the coffee, but only a few times a week.

 

[earloke]

I may not have the right answer for everyone but after living in hell for 25 years I found mine. I found all the wrong doctors and took all the wrong drugs and nothing worked. I never found any trigger or reason for my daily hell and began to believe like a lot of people with this problem that it was brought on by something I was doing myself. I finally gave up and was taking Imitrex injections daily ( I took 290 in 1 year ) I was lucky enough to find a neurologist in Houston who specilized in migraines and he prescribed Topamax.
I have had 5 migraines in the 5 years since. I know that this medication may not be the answer for everyone but it makes me wonder, did it cure my triggers for all the things that they say that cause migraines or is it really something else that causes them and many things get blamed. I just feel so sorry for those who are looking for the right doctor to take away the pain and there are so many doctors that dont even know what they are doing.
If you are in this situation and the doctor refuses to acknowledge your pain, says that it is a mental problem or wants to experiment with you, find another doctor. The web is a great source. Research like I did and find someone who has proved their knowledge.
Earloke

 

[Ron_Tomkins]

To this day I haven't been able to find the pattern in my daily life that will help me determine what causes my migraines. What I have noticed is this:

-I used to get a lot more migraines than I do now. Usually they would happen on certain cycles, meaning, that there would be periods of constant migraines, followed by periods of none

-Only one two things cured my migraines: Taking a pill called Dolviran (it's made in Venezuela, and it contains Codeine) or going to sleep. Now recently, going to sleep doesn't always guarantee that my migraine will be gone by the next day. The first time this exception happened was in Argentina. I arrived to the hotel at night. I had a migraine. I went to bed, expecting as usual to have no pain at all the next day. What happened is that I awoke in the middle of the night with the pain worsened, and I had to take a pill. Thank God I had Dolviran with me. I took it and went to bed.

-Since I currently live in the United States and they don't sell Dolviran here, I found the only other thing that kills my Migraines: Exccedrin (the one for Migraines, of course). Two pills will do the trick.

 

[bellonax]

Caffeine causes mine. I originally came off caffeine because I thought it was contributing to my insomnia (which it was) and then noticed that I didn't seem to be getting migraines anymore.

Not thinking, one day I had a Red Bull and two hours later got a migraine. Same when I had a VK (vodka drink with caffeine) and when I foolishly had several cups of caffeinated tea round my gran's house.

Haven't had one now for nearly two years but when I did get them I'd get a strong aura that would sometimes blind me, followed by a crippling headache and violent sickness. They were so bad that if I thought I was getting one I'd cry. I was over the moon when I found out what the cause was.

My mother and sister get them too, but they refuse to even test whether caffeine is the cause of theirs (although, as my sister gets such a different set of symptoms to me - delusion, hallucination - I'd be surprised if it was).