WHAT do you think causes migraines? Or at least your own.

First topic message reminder :

Okay just a speculative discussion (I hope).
But if they called us all in and asked us:
a) What we thought was the cause of our migraines.
b) How they might best serve us in our plight?

What would you be telling them?
We have a better insight than all the medics, we live with the damn thing.

This would be our chance to tell them, what works, what doesn't.
If MOH is as big a problem as they tell us, or causing more stress in the way it is put out...
etc, etc.

What would you want to tell the experts?
If we had a chance to make them really listen to us....WHAT might make a difference?

It's true. My friend (the one I am struggling to visit) has Parkinson's.
They have a standard type of drug to treat this. Not every one has the same one, and often they change from one to another over time.
BUT there is a set protocol for everyone with Parkinson's.
Their symptoms vary, but the treatment is pretty standard and seems to work for everyone, albeit with some drug juggling.

It hasnt always been like this, and some of the improvement is thanks to Michael J Fox for all his work.

Sadly with migraine anyone in the public eye does their best to hide it. It seems unless they are chronic like some of us, they can hide it to a degree and still work. This does us no favours.

I'll go with the Cupcake Syndrome. Too bad, too, 'cause I enjoy cupcakes. But at least it explains the craziness of migraines.

I have noticed a lot of fibromyalgia, CFS and depression among so many mig patients. This would tend to lean towards a neurotransmitter imbalance which can be triggered by so many things. Hormone fluctuations can also upset neurotransmitters which could explain why women are more prone to migs. Men just have one constant hormone that just tapers off over decades and fluctuates very little. The tapering is so slow that our bodies can adjust to it without even being aware of the change.

However injury and disease can abruptly change that and it would be interesting to study men that have had rapid onset of low testosterone to see if there is any correlation to migs. Or men that are supplementing testosterone but have not got a functional consistent dosage established. That could also reveal a fluctuating hormone relationship to an imbalance of neurotransmitters. then track to see if there is a link to migs in men.

I know.....Good luck having that happen.

But that is also dangerous and results in under diagnosis and under treatment of it. But that's another topic for another day.

Brent,
That is why I started my FB group.
its too easy to call them co morbid, I am sure there i smore to it than that.

I am convinced if they looked closer at this evidence they would crack it.

I have all 4 of the triggers migrainegirl mentions. Both my children get them, although my son won't admit it. He had a lot of headaches and carsickness as a child, like I did. He just says he gets bad headaches that make him feel sick and I go along with that because he obviously doesn't want the stigma of migraine. He only gets a couple a year.

My daughter gets them mostly with her cycle like I started out but is also progressing to more like I did.

I have now had them over 40 years. As a young child, I got a lot of headaches and threw up a lot so I probably had them younger than 13 when I was diagnosed.

I think the most frustrating part is what triggers it one time might not the next. Or maybe what I thought triggered it actually didn't. Mine are so frequent I can't name the trigger every time, but some are very obvious. I just know I want it to stop!

Cathy, I am sorry your kids get them too.
So far mine seem to have escaped them.
Although one daughter does get headaches with her cycle.

I have only had them for 20 years and that is too long.
40 would be unthinkable. I am so sorry.

I have no idea what triggers mine.
No idea at all. It was hormones and seemingly nothing else.
Now they should be dead, so what the Hell is doing it?

Pen - I still think it is hormones. I wake up at night hot for no reason--not really a hot flash but hot so I think the hormones are still raging in there to some degree. I know they were the culprit that started the whole mess.

Do you Linda?
I still get runs of flushes. Several night in a row around 10.30. Then none for a while. Haven't actually logged how often, don't want to go back to that stuff.

Will the damn things ever die.....

I think I agree with CRT - that it is a symptom of something else, not a disease in itself. That is why we aren't treated the same. We are getting them for different reasons. We just have to get to the bottom of what our individual reasons are in order to treat the successfully.

I agree, and I think mine are because of hormones and Fibro/IBS.
These so called co morbids are really more than just that...

Hypothalamus. In migraine.

I think this link is ignored too much.
Jacob Teitelbaum comments here, but many other info on line,.


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I have been going to a fibromaylgia/chronic fatigue center in Philadelphia that is founded by Jacob Teitelbaum and based on his book. I haven't really seen any change in the migraines. I've seen a little in my chronic fatigue and some in my fibromyalgia.

They treat my health probelms in general but don't directly address the migraines. I was surprised to see the website where he sells his products and that they have pedatolex. That has never been included in my program.

One thing though- my seratonin levels are sky high and I can't use melatonin or 5-HTP so I seem to have something completely different going on. It's so frustrating.

Jacob Teitelbaum is quite the Fibro guru isnt he?
I have his Fatigues to fantastic book, had it for years.

Interesting his protocol hasnt helped so much. Perhaps it takes time?

I have never seen where he addresses migraine per se.
I think they are a symptom in my case, and that is how he seems to view them. But if yours are not, then maybe his ideas dont fit for you...

I had no idea they measure seratonin levels Cathy.
Never heard of that here.

It's a great program, it's just that I can't tell if I have more energy or not due to taking so many painkillers. But maybe since my seratonin levels aren't low, they didn't think the petadolex would help me.

I've met a lot of people in the program because they put most patients through a series of IVs and we all sit and talk while having the infusion. Many, many of them also have migraines. I know a lot of what they test for also causes headaches - Epstein Barr, Candida, Lyme's, etc. It's all very connected.

A lot of the people I have talked to went from bedridden to functional. But I know it will take time.

Admin wrote:
Maybe we should all just list our "other" illnesses, and see who has nothing other than migraine???

What about the conditions we don't know we have?

Chris

Good point Chris. For instance. The cayenne works for you and cayenne is good for circulatory problems. Maybe you have circulatory problems and don't know it. BTW the cayenne is working for me so far but it has only been a few days.

Here is a point of view from one of our top neuros.
He is a really nice guy too and he and his wife and daughter all have migraines. I wish he was my neuro.

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Pen - why can't he be your neuro, or is he too far away?

We have what are called PCTs. (Primary care trusts), it has to be by arrangement between then, but preferably within yours.

Also, he is even further away than the one I see, and I havent managed to get to him since last June.

Very interesting read what everyone has to say. We were also in a car wreck at a young age - 8, and even though I spent a year being dragged to the Chiropractor (missed Sat morn cartoons!), a few years ago I found myself at a Gonstead practitioner Chiropractor who did head to toe standing x-rays which revealed all kinds of stuff. He was able to correct much of it but my neck is still pretty much stick straight (it should have a nice bend in it to support your head) and it hangs off over my right shoulder. He said he thought that and the twist of my spine was all from the accident.

To get to migraines, both Mom and I got them after we experienced Fibro symptoms. My doc calls mine Occipital meaning from the occipital nerves. But I really think I have two kinds - the one where you can't stand light, really nauseated, all that fun stuff and then the kind where you can feel and trace the nerves directly down into your neck or shoulders/upper back (with some hypersensitivity components - esp vibration) and that I think stems more from the Fibro muscle garbage entrapping nerves and causing them to flare. I use Maxalt-MLT for them. It works beautifully on the main ones but I do notice it effects me a little differently if I use them for the other kind so not sure what to think of that except maybe the first is true migraine and the other just feels like one but the med still works cuz it's all nerves.

I'm also a big believer in trigger points being a culprit for the 2nd kind I think I get cuz those always respond better to heating pads, plain old aspirin, massage (if you can stand it) and light nerve massage than the occiptal kind which really need the Maxalt. Oh! And hair pulling. That's a weird treatment but it can help. We just look insane while we're doing it but when was the last time I cared about that?

PS Forgot there is a 3rd - I had a hysterectomy in '93. My doc sent me to an Endocrinologist last year who didn't test my blood level of estrogen that always was fine, he tested two other glands (sorry-forgotten which ones) that are the ones that put out the hormones that cause you to produce estrogen - they don't know or care whether or not you have ovaries, they will try their best to get your level up. Turned out these two gland's lab numbers which should be in the 50's or so were in the 400's! So even though my blood levels of the hormone were fine, I only had 1/4 of what I should have had bioavailable to me - for 18 years. He changed me to estrace only and my migraines, which normally were 3-4 honkers a month along with the others, dropped immediately to 1-2 a month and it also, besides improving my general outlook, entirely removed a really awful body tension that was underneath all the other stuff. I still get daily headaches from my neck but they don't move into migraine land as often either. I was pleasantly surprised.