Migraines

[Jacquie802]

Hi,

Just curious to see how many ppl here have actual migraines....Also, who else out there gets headaches but they aren't migraines?? I'm thinking that I do infact get migraines, but am waiting for the doctor to "confirm" it. Are there any tests out there or do they just go by symptoms? I've been having a headache everyday for the past 6 weeks, so hopefully I find out whats going on. Advil, etc doesn't work to help it.

Thanks,

Jacquie

[taylortotmom]

I am a card-carrying member of the migraine club. Not only do I get migraines- I get complicated migraines which are the absolute worst part of my illness. Complicated migraines bring forth a myriad of sxs including temporary paralysis, vomitting, extreme visual disturbances, and severe pain. However, I must caution that migraines do not necessarily have to result in a headache. So, one can have the migraine process and not have a headache. A headache is just one sx of a migraine. Hate 'em, hate 'em, hate 'em!

Carmen

[lthomas521]

Hi Jacquie:

It sounds as if you might have rebound headache. http://en.wikipedia.org/wiki/Rebound_headache

[AJVDK]

I get migraines, but I can go days with out anything and then all the sudden I get one. When they come on I am in so much pain. Right now the only thing that get me though is shots when I get them. I have yet to find a med that works. I also get cluster headaches. I hope you get some answers soon.

[jenwclark]

I've been prone to headaches all my life, but I was told many years ago that they are not migraines because migraines are on one side of the head. I'm now curious whether that's true, given the wide variety of migraine symptoms I'm reading about here. My headaches also do not respond to OTC pain meds, and I haven't tried anything stronger. For at least 5 years, and possibly all my life, I've had a constant low grade headache, but frankly I'm so used to ignoring it I usually haven't mentioned it to doctors. I'm changing that now ;-)

Spike

[Beccapooh]

Count me in the migraine club, too!! I've had migraines all of my adult life and part of my adolesence, too. My sister gets what's called an "Absence Migraine". She just gets the other symptoms, but, no pain (lucky girl!!!). She'll become suddenly light and sound sensitive and vomit and want to sleep, but, no head ache!!! Weird.

Bec

[luckygoat3]

I have a constant 24/7 headache since 1999. Nothing has taken it away but it has lessened but it's back up to 7/8 on 1-10. I also get migraines, on top of the headaches...so not fun. Nothing OTC works, btw if you use to much advil *i did*, you will get rebound headaches and it's not fun detoxing from that. So currently i don't take anything for the headache ---i just live thru it day by day, and the migraines i'm on a preventive but nothing to "break" it....basically i just muddle thru them also.

I was in the hospital for migraine/headache treatment without much success as i was a square peg they were trying to fit in a round hole. Basically i was told i didn't have POTS, suck it up and live your life....

Susie

[persephone]

I am PLAGUED by migraine, and so is my mother. Both of us have EDS. I can get migraines where my head doesn't even hurt-but my vision goes really, really weird and my whole body is affected- movement, coordination, balance, EVERYTHING.

It must figure that migraine and pots aren related since there is vascular stuff going on in both conditions a lot of the time?

Whoever mentioned being told they didn't have migraine cos it only ever effects one side of the hgead- do get a 2nd opinion. You can even get ABDOMINAL migraines which only affect the tummy!

Only thing that ever shifts migraine for me is SYNDOL- which you can buy otc for about ?5 for 30 tablets here. THey work better than imigran injections, anything because they contain a muscle relaxant that lets me just sleep it off.

[Gracefulprincess]

I'm in the migraine club.. I've been getting migrianes for as long as i can remember.. since i was a kid... and i also get other kind of headaches on top of that.

[jenwclark]

I can get migraines where my head doesn't even hurt-but my vision goes really, really weird and my whole body is affected- movement, coordination, balance, EVERYTHING.

Holy ****! That's a migraine?!!! I get things where a page of text looks like it was cut into confetti, or I see stars across part of my vision for an hour or so. Last time, I also lost some serious muscle control in my arms. After the fact, I usually think it was just anxiety or imagination ...

Witness the result of being diagnosed with a psychiatric condition 15 years before being dx with POTS ...

Thanks!

[Hoobaid]

I too am a member of this club. I have migranes about 5xs a month on an average. I retreat to the dark place that is quiet. They last for up to 2 days and the aftermath is a foggy brain. I see the auru before and vomit during the intense pain!

I was told once I went through"the change" (as my Moma calls it), I wouldn't have them. Well I went through the change 2 years ago (early due to chemo) and they are still with me.

I am on my third type of migrane med. Will the little man stop pounding my head, already!

I hope the best for you!

Lori

[Guest Mary from OH]

I have intractable migraines which means I have them every day, but they vary in intensity. I am on morphine 24/7 along with a plethora of other preventatives, abortives and rescue meds.

You need to be diagnosed by a headache specialist. This can be a neurologist who specializes in the treatment of headaches. THERE IS NO MAGIC TEST!!!!! Not all drs are equally trained!!!!

Some websites are: www.ahsnet.org

http://headaches.about.com/

http://www.nomsg.com/sources.html

http://www.migraines.org/treatment/

http://www.achenet.org/prevention/5.php

Please find a reputable dr to diagnose you first. Then seek trt if necessary! It is vital to get the correct diagnosis by a properly trained professional. Good luck to you! Migraines stink!

[Jacquie802]

Is it possible my headaches/migraines are caused by POTS?? Never got a headache until i was dx with POTS.

[Eli6596]

I have migraines too. Migraines are more common in POTS patients than the general population.

The International Headache Society criteria for the diagnosis of migraine requires at least two of the following:

unilateral (one sided) location to the pain

throbbing or pounding

limitation of usual activities due to the pain

increase of the pain with movement

AND one of the following:

nausea or vomiting

light and sound sensitivity

If you have at least two symptoms from the first list and at least one symptom from the second list, you would meet criteria for the diagnosis of migraines, but consult your doctor.

Karyn

[bttrflyamby1981]

I get migraines too. They can range from mild to "I want to die"

They make the POTS symptoms worse for me. I have noticed that my migraines have seemed to become worse around the same time I noticed the POTS symptoms.

Good luck,

Amber

[lthomas521]

I get them, too. When they started, I didn't even get head pain, just episodes of spinning vertigo. Now I get pain without vertigo. The pain isn't too bad, but I just feel exhausted when I have it.

[pamela]

Talk about a mixed blessing... I had to go to the Hospital for a sudden intense migrain and they gave me shots for pain aand nausea. We did not discuss pots or any suxh and I was released a couple hours later. It has been 3 days and I still have a mild to annoying headache, brain fog, clumsiness, sensitivity to everything..bloated and all the other potsy stuff. So the migraine was a precluding symptom....I just stareteda job as a groomer for dogs after being unable to work for over a year. For about 4 mos my POTS and OI have been manageable and after 3 straight days on my feet my symptoms are back and all I can do is hold on. So I thought I would get on the computer to see if anyone else had these sudden migraines and prolonged symptoms. Its sad to see the answer is YES but at the same time is reassuring to not be alone.

[the_dancer_grl]

yeah, it seems alot of us get them and while sad it is comforting to know we're not alone. I personally just finished detoxing to get rid of rebound headaches but i get migranes to... took meds to get rid of them or at least cut the edge off (OTC meds don't work by the way) and am trying a preventative now that i'm seeing a headache specialist finally.

[1pl8ump]

my wife is a pots/migraine sufferer. a couple of issues we have found out which could be helpful to those that have posted previously. she has had migraines for many years, but they seem to have gotten progressively worse during the past year. headaches are relative. there are no tests or radiology films that will show a headache. the doctors just go on your description of the pain you describe in your head. also, headaches seem to be very hereditary. my monster-in-law & sis-in-law both suffer as well. as far as pots & headaches, there seems to be no correllation, yet. it could be a blood flow problem to & from the brain. my wife's condition is known as migraine w/aura (where you see geometric shapes in your line of sight or black spots or stars). we have been to the cleveland clinic a few weeks ago and are scheduled to return in november. they have a headache specialist there named stillman. i have seen several potsy people post about him. she is going to go through 2 days of extensive testing for possible small fiber neuropathy in her feet. this could explain the manifestation of the syncope (which travels from south to north in your body). hope this gives some insight to you "guys".

[Guest dionna]

i get migraines. the doctor that diagnosed me did so the first day i went in with a complaint to him. i had been having them for a while but other doctors just dismissed it cause i passed out so frequently and most of them were around the time i fainted. i think they may have also thought i was crazy still and a hypochondriac. whatever! it was noted in my records that it is "almost certainly vascular in character"... which is a migraine.

i hope yours find relief.

take care

dionna

[goldicedance]

Again, I ask, are your sure the Florinef isn't triggering your headaches?

s/The Migraine Queen

[Jacquie802]

Hi, I never even went back on teh Florinef due to the headaches..I see my cardio/EP next Thurs.

[deeplyset]

I get chronic hemiplegic migraines. That's what I was diagnosed with because of the assicoation with Paralysis. They are similar to stroke like symptoms. Also, I have loss if vision in one eye and slurred speech is a problem. Not to mention the all over weakness and confusion. And most of the above mentioned symtoms.

I was hospitalized and on morphine to control them. They put me on Depokate and then Topamax to control them and this has been the BEST TYPE of control I have found pill wise. I was stillin a lot of pain with constant underlying headache about at a 7/8 level.

But then I found out about Nevre blocks (simiplar to Trigger point injection but way less intense). In order to add to the treatment. So, every 4-6 weeks I get a Occipital Nerve Block injection on both the right and left lobes. It works instantly. And the injections take less than 5 minutes. It's a subcurtaneous injection of a local anestic (I get Marcain). It's none addictive and just numbs the Occipital Nerve (which runs from the back of the head, around the sides, and to the forehead). I also find my POTS symtoms way improve.

It takes my pain down to a 2/3 level. I CAN'T tell you the difference it makes in my life!! When they start wearing off I feel like dying again. I don't know what I would do it I couldn't get these. They just make like so much more bearable.

If I get a really bad mirgaine before my next shot I take imitrex.

Here's a good site on hemiplegic migraines.

http://headaches.about.com/od/migrainedise...ic_mig.htm?nl=1