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

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

Post by Admin Fri Feb 04, 2011 9:53 am

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?


Last edited by Admin on Wed Mar 30, 2011 3:23 am; edited 1 time in total
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Post by crt Sat Feb 05, 2011 8:22 am

That is the big question, isn't it? I am not convinced that it is just one cause. Look at all the differences we have. I really wonder if migraine symptoms are symptoms of various different diseases and conditions, just as nausea is.

In my case I am pretty sure the migraines are the result of the head/neck injury I had when I was 3. I have no genetic nor hormone link to migraines. I think if I had physical therapy and follow up when I was injured I would not have migraines now. But that's water under the bridge.

Triptans, exercise, cayenne, are so effective for me, that I have not spent much time searching further.

Chris

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Post by HeelerLady Sat Feb 05, 2011 11:44 am

Aliens in my brain. alien

I don't know what causes them in general and what makes the difference between those that get them occasionally and those of us who get them chronically.

I know my wiring seems to be a bit faulty and I think that might be part of it.
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Post by Admin Sat Feb 05, 2011 11:33 pm

Chris, sorry you had the injury at such a young age. But see what I mean. Has anyone ever explained why that might have given you migraines. And not hundreds of others that suffer injuries such as these? I can see as you have a lot of things that help. Searching isnt really on your agenda. Understood.
But, given no genetic links.....why did this do this to you.....
Somewhat rhetorical of course. Smile

I had a bad bash as a 7 or 8 year old. Broke my nose, but didnt find that out for years. AND I was forceps delivery. Lot of speculation on that one on boards.

Becky I cant argue with the alien theory. I often feel like that.
Faulty wiring?? If they are genetic, sounds feasible, although God know why one of our ancestors started them in the first place..

As I said, must a speculative question. Of course, no one has the answer....or do they???
affraid
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Post by HeelerLady Sun Feb 06, 2011 1:00 am

What I meant is that my body seems to over-react to things.

I have had 2 more severe sprains and I ended up having surgery on both joints to remove scar tissue. A bit of an over-reaction on my body's part.

I was stepped on by a dairy cow a couple years ago and it damaged a nerve in my foot (the one that runs along the big toe) and ended up with RSD along with scar tissue at that joint. Another over-reaction.

The ET, well that's purely genetic but is a nervous system problem.

I could blame mine on a car accident 9 years ago but I had them rarely before that, chronically for a while then they went into remission again only to come back 8 years later. I suppose it's possible but I think I'm going to stick with the alien theory. Smile
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Post by crt Mon Feb 07, 2011 8:08 am

Admin wrote:Chris, sorry you had the injury at such a young age. But see what I mean. Has anyone ever explained why that might have given you migraines. And not hundreds of others that suffer injuries such as these? I can see as you have a lot of things that help. Searching isnt really on your agenda.

Oddly enough, I actually do a lot of research. Just not much on migraines. I found what works well for me, so I'd rather spend my research time on other topics.


Admin wrote: But, given no genetic links.....why did this do this to you.....
Somewhat rhetorical of course. Smile
I have my own theories but I really don't know and maybe never will. Some medical "professionals" agree with me. Some don't.

Since I have found such effective relief, I don't have the incentive to spend much time on migraines. I don't seen how knowing, 100%, the why, would help me. Frankly, I don't care why as long as I have effective treatment. If knowing the why, would guarantee the total alleviation of symptoms, a cure, that would be worth it, to me, to pursue.

I do have a science degree and I do like to learn, study, research. But there are only so many hours in a lifetime. There are thousands of subjects out there, many of which are very interesting to me. I work full time and have only so much "leisure" time. I'd rather spend it on activities that bring me a reward, like gardening, exercising, or are extremely fascinating to me, like aviation, astronomy.

I'm sure I'd feel differently if I didn't have effective relief. I also think that migraines should be researched much more and that answers should be found. But I certainly don't have the motivation and skills to be one of the folks to make the breakthrough.

A final thought. Thinking about my migraines a lot stresses me out. I can give myself one if I think about it too much. Stress is very bad for us physically and mentally. I work on reducing the stress by not thinking about migraines all that much. Then if I am getting one, I'll take the triptan, take a short nap if I'm home, and then go on with my day. When I used to agonize over my migraines, I suffered twice: once with the pain and once with the stress of thinking about the pain.

Chris


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Post by Admin Mon Feb 07, 2011 8:40 am

All good stuff Chris.

I cant do any activities like you do, but I can understand how that can help.

However,I seldom think about migraines when i don't have one.
As I have permanent pain, I am never sure where it is going.
That is more stressful for me...
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Post by Admin Mon Feb 07, 2011 9:01 am

I should add, partly why I posed this bit of rhetoric is the Horizon programme over here on pain.

They are looking at the rewiring that is occurring in our brains after we suffer chronic pain.

It just made me speculate what I would say if they asked me what I thought caused them and what they could do for me...

Go figure how my rewired brain works lol!


Last edited by Admin on Mon Feb 07, 2011 11:25 pm; edited 2 times in total
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Post by LynelleH Mon Feb 07, 2011 3:21 pm

I am not 100% sure WHY I have the daily head pain and/or intracranial hypertension.

But I do get the golden opportunity of "what can we do for you" from my neuro from time to time. On the occasions when I actually see the doctor in addition to the physician's assistant during my 6-8 week office visits, the doctors are eager to hear what I would like to do for treatment. This time I requested botox. Even if I don't see the doctor, and just see the PA, I feel comfortable enough asking her for specific treatment. I have a great relationship with their staff.

I will be seeing my new neurosurgeon in the near future, so hopefully he will have some new ideas for getting me out of pain.


My theories about my conditions: I hit my head on the driveway falling off my bike when I was 8. I didn't have a concussion, but my parents "watched" me for signs of a concussion. I think that had something to do with it all.

Additionally, genetics. My parents' sides of the family all have aunts who had migraine. I think even my paternal grandfather had headaches. It was inevitable.

The intracranial hypertension: I think this fully came on with the pregnancy of my second child. Immediately following her birth is when I noticed the "headache that never went away". Maybe it was from the spinal block for the c-section, maybe it was from the pregnancy weight gain, maybe it was a combination of both. Who knows? But it took 5.5 years to diagnose and 6 years to treat. But now, 3 years after diagnosis, I am still in daily pain.
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Post by Antonella Mon Feb 07, 2011 6:28 pm

Why? Because I have a faulted gene that runs in my family
What? Cure that gene, please!!!
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Post by Petzi Mon Feb 07, 2011 9:12 pm

I believe the culprit is the trigeminal nerve being pinched by various super tense muscles.

Why do several of my relatives have migraines too? Because we Petzi's tend to be nervous, anxious and don't cope well with stress. It is telling that the more relaxed family members don't suffer from this affliction.

P.
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Post by Admin Mon Feb 07, 2011 11:29 pm

Interesting Petzi. I never had a problem with stress until all this crap began. I was pretty laid back, but the pain and anticipation has left me anxious. But I have had tense muscles my whole life.

I have constant head pain, they call it myofascial. My neck muscles are a mess, and my sinus/nerve thing gives me phantom toothache.

In my family, both sides. Well my mum coped okay with stress, but my Dad turned to the bottle... Sad
In the rest of their families, not a headache, but on mum's some IBS. No one else with FMS. But I suspect my dad had it.

Did you see the Horizon programme Petzi?
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Post by Admin Mon Feb 07, 2011 11:30 pm

Antonella wrote:Why? Because I have a faulted gene that runs in my family
What? Cure that gene, please!!!

You would enjoy that Horizon programme Anto.
The family they are using to find the gene fault are, I think Italian, they feel no pain at all...
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Post by Admin Mon Feb 07, 2011 11:33 pm

"LynelleH"]I am not 100% sure WHY I have the daily head pain and/or intracranial hypertension.
But I do get the golden opportunity of "what can we do for you" from my neuro from time to time. On the occasions when I actually see the doctor in addition to the physician's assistant during my 6-8 week office visits, the doctors are eager to hear what I would like to do for treatment. This time I requested botox. Even if I don't see the doctor, and just see the PA, I feel comfortable enough asking her for specific treatment. I have a great relationship with their staff.

Lynelle, if I had that sort of treatment. I might actually get somewhere. Remind me to tell you how my so called treatment goes...

alien
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Post by dcook60 Tue Feb 08, 2011 12:11 pm

we all have our different takes on this condition with which we are cursed. here's mine: i never had a headache of any kind til age 29, when i had a mysterious disease which put me to bed, completely non-functional, for a month. soon after i finally got out of bed and back to life, the episodic migraines started, very severely.

41 years later, the episodic ones aren't as frequent (because of daily triptan drugs) but the daily ones have been ever-present for about 12 years. after reading more about NDPH (new daily persistent headache) i'm pretty sure i would qualify as having this condition, even though i've been given every label EXCEPT that one over the years.

if my mysterious illness was lyme or a related bacterial or viral disease, that would be the trigger. also i've had a lifetime of sinus problems, with 3 surgeries and untold misery. chiari malformation also fits in there somewhere. it's all too much to sort out; no wonder most doctors just chalk it up to MOH. grrrrrrrrrrrrrrr.

dianne

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Post by Antonella Tue Feb 08, 2011 6:30 pm

Dianne,
this is an interesting point: migraine can begin at different ages.
I had my first attack when I was 21, my cousin was 28, a colleague of mine began in his mid 30's, another colleagues has had them since she was 15...
I feel "lucky" as - at least - I got away with it when I was a kid
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Post by Admin Tue Feb 08, 2011 9:16 pm

I feel so "lucky" I didnt get any until I was almost 40
BUT I had the IBS before them and 3 bouts of depression.

I am grateful I didnt have them when my kids were growing up.
But now I have more than my share, every couple of days, its like I am catching up.
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Post by ann004 Fri Feb 11, 2011 3:41 am

I was in my 40's when they began. No clue. Can't even speculate. I hit my head hard as a kid, but why would it take 35 years to catch up? Someone above mentioned it as a symptom of many different diseases and that is why we can't be treated the same. Good point.

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Post by ann004 Fri Feb 11, 2011 3:44 am

After just posting the above, it occurred to me - how many of you have some other thing going on besides migraine? Maybe migraine isn't a disease afterall but a symptom of various other diseases

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Post by Admin Fri Feb 11, 2011 3:45 am

It is a good point isnt it Linda? I know you are the closest to my situation I have yet found.

I hit my head and was a forceps delivery, but it seems that hormones kicked mine off all by themselves.

Thing is, now that they are gone, why are the migraines still here?

I think it is a symptom. Hormones, messed up endocrine system, left me with fibro.
Mine are a symptom of FMS I think.

Maybe we should al just list our "other" illnesses, and see who has nothing other than migraine???
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Post by Migrainegirl Mon Feb 14, 2011 4:33 pm

(1) genetics
(2) often an injury seems to have preceeded it for many of us
(3) hormones for many of the women
(4) various triggers which seem to vary quite a bit from person to person

From what I can tell there is a mix of all of the above (or at least 3 of them) for most of the people with chronic migraine
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Post by Admin Mon Feb 14, 2011 10:47 pm

Thanks MG.
Good thoughts...

I can claim 1 for sure: #3 Hormones.
Injury: Well forceps delivery and few falls from horses long time ago.
Triggers, apart from hormone, cant find a single one. Nothing that actually triggers migraines as such.
Genetics. Cant find any links at all...
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Post by ann004 Thu Feb 17, 2011 5:17 am

I agree with crt that I think the migraine is a symptom, not a disease in itself. Otherwise we would get relief in similar ways. As it is, all of us have our own different drugs, etc. If you take other diseases, for example, diabetes, diebetics take insulin or modify their diets (or both) and that is about it. In fact, most diseases have a main drug to treat it, not hundreds that are used for 100's of other things. A headache isn't a disease. A stomach ache isn't a disease. Why is migraine considered a disease. Just like headaches and stomach aches, maybe they should be looking for the disease or ailment causing the migraiane, and quit saying we have migraine disease. I think we would have a better chance of eliminating them.

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Post by HeelerLady Thu Feb 17, 2011 5:25 am

Linda,

I don't know that I agree with you. I'm an otherwise healthy adult. Yeah there are a few other minor issues but either they were there previous to the migraines or are just bad genes that were going to hit anyway.

I think we've looked at commonalities in the past and we've come up with bupkus. There doesn't seem to be one link. I'm not trying to be argumentative, this is based on observation. It is possible that we all suffer from an unknown Cupcake Syndrome but there are so many quirks that is it possible for it ever to be nailed down?
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Post by ann004 Thu Feb 17, 2011 5:35 am

Heelerlady, I'm otherwise healthy too. You got a point. BUT, I just find it hard to believe they can't figure this one out. Just because I feel healthy and pass my physicals doesn't mean there isn't something gong on somewhere. Take me for example. If I get a migraine, a couole squirts of DHE can knock it out before it barely gets started. Why does this not work for everybody to at last some sort of degree if we all have the same "disease".

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