Migraines

[TexasGrrl]

Hi y'all,

Just wondered how many people have migraines here and what they have done or are doing to try to control them.

I started having bad headaches 2 1/2 years ago. They aren't the typical aura-preceded migraine (I've had a few of those before). They start on the left side of my head behind my ear, then go down my neck, around the back of my head to the other side. It's more of a burning pain than a tightness. They come on very slowly and take about 4-5 hours to reach full strength. When they do reach full strength, I am light and sound sensitive, my head pounds, it hurts worse when I bend over, and I also get deep stabbing pains similar to cluster headaches. They have lasted as long as 36 hours. Sometimes they respond to sleep, but not always, and I can go to sleep without one and wakeup with one full-blown.

After several of these, I went to my GP, who prescribed Butalbital for them. It works great as an abortive, but now I'm a bit concerned about rebound headaches being a problem. Three months after I started on Butalbital, I started having them every day, sometimes twice a day. Ever since then, I've had them on a chronic basis, more than 15 days of the month. Occasionally I will go a few weeks without one.

My GP diagnosed them as tension headaches, but I'm pretty sure that's not the case, or if it is, that's not the whole story. I discovered there was some sort of vascular component when I bent down and the headache got worse. On a hunch, before I had the Butalbital, I tried Midodrine to see if it would work, and it helped a great deal, although it didn't cure it completely. Since that's just a vasoconstrictor, that confirmed to me that it is, at least in part, vascular in nature.

After all this sorting out of the POTS, I'm not all that keen on going to a headache specialist or yet another clueless neuro, but I wonder if I'm just making myself more miserable by continuing to use Butalbital, which is supposedly one of the worst for provoking rebound headaches.

Any thoughts on this? Is it really worth going to a headache specialist? As long as I have my Butalbital, I can deal with the headaches, but it sure would be nice not to have them at all.

[MightyMouse]

Janet, for a while I was on Amerge as a migraine prophylaxis. I still use it for my occasional migraines...and if it doesn't get rid of it fully, I use Migranal (DHE nasal). I also have a friend who's been using Topomax... but had to stop because it made her lose too much weight (oy, I wish!). How's the butalbital on your stomach? It rips mine to shreds.

Nina

[TexasGrrl]

Janet, for a while I was on Amerge as a migraine prophylaxis. I still use it for my occasional migraines...and if it doesn't get rid of it fully, I use Migranal (DHE nasal). I also have a friend who's been using Topomax... but had to stop because it made her lose too much weight (oy, I wish!). How's the butalbital on your stomach? It rips mine to shreds.

Nina

<{POST_SNAPBACK}>

Not too bad. When I lost that weight, I had to lower my dose due to wooziness, and now I can take it on an empty stomach, no prob.

I wonder what I have to do to get an official dx of migraines from my new GP? (My old one retired last summer.) He wanted to send me to a neuro for yet another MRI of the head and neck.. ugh... no thanks.

Nina, do you think occipital-region headaches might have anything to do with a positive Rhomberg's sign? My GP did confirm that, but is clueless as to what it might mean for me. Just wondered, since the cerebellum is right there...

[MightyMouse]

My rhomberg sign improved after my spinal surgery. While it has to do with balance/ataxia, it can be provoked by things like spinal cord compression, chiari, yada yada.

My migraines are almost all in the parietal area. For the longest time, I thought they were sinus headaches. Go figure.

Oh, I just remembered the drug that they switched my freind to from the Topomax...it was Maxalt.

really, I'm going to bed now. Nina

[StaceyYount]

Hey,

I get those exact headaches. I think some of the others do as well and I am sure they will post too. I have been to so many headache doctors, neurologists and tried many things. Now the only thing that helps is an injection of Demerol and phenergan. It usually eases the edges, puts me to sleep and in a day or 2 the headache will go back to bearable. Butalbital use to help me too but they stopped because of the fear of rebound. I don't think it gave me rebound headaches but the thing is with that and most meds you have to take it at exactly the right moment (which changes headache to headache) if not, it does not work or makes it worse. Sometimes when the pounding starts taking 1 excedrin will stop the pounding but again one time it will work another not at all and another it will make it worse. One doctor said that they were vacuum headaches but no one else ever said that. This is one of my biggest problems. I just wanted you to know you were not alone and that if your doc will allow the Demerol phenergan can help. I have to go to his office to get the injection but it helps so I don't mind. In the worse cases one side will start I will get an injection feel better and then it will switch sides. Last week it started on Sunday got injection on Monday by wednesday switched sides and since I had an appointment on Friday anyway the nice doctor gave me another. ( that is rare usually one shot per headache)

My theroy is that instead just one type of headache I get three and then if they all gang up one me I'm doomed!

No migraine med has ever made a difference but that is me in some cases it helps others.

I could go on and on about headaches but I don't want to give you or me one!

Stacey :-)

[Jillybeanbme]

Janet,

Did your PCP have you fill out a questionnaire about the types of headaches, the time of day or day(s) of the week and the symptoms you get with them? It's a common checklist that is used to officially dx whether your headaches are tension, cluster or migraines. It is possible to have all three. If you feel like your PCP it's doing all you would like, maybe see a Neurologist that specializes in headaches & migraines.

From my experience, yours kind of sound like tension. I say this because migraines generally are one sided. My headache problems started 10 years ago with tension headaches, within 2 years I was having full-blown migraines. Sometimes I can take Excedrin Migraine to dull it enough to get through the rest of the workday. Then there are times like the past two weeks where the pain is so bad it brings tears to my eyes and I end up throwing up before taking an Imitrex and going to bed. My hormones play a big part in my migraines. I can always tell when I'm ovulating because I get a migraine and generally a day or two before I start my period I get one as well. They also run in my family. Every female on my mom's side of the family has them!!

Good luck. I feel your pain!

Jill

[goldicedance]

Migraines are a real bummer. I sometimes call myself the Migraine Queen. I frequently judge my headache on the cost of hte Maxalt I take to knock it out--for example, a $16 headache, a $32 dollar headache, and so forth.

I think it is a good idea to see a neurologist who has a special interest in headaches. My neurologist told me the best way to treat migraines is to prevent them. I am on mega doses of neurontin and zoloft. They seem to help. Then I have stuff like maxalt and dhe in the event of a headache. Frequently internists are not all that familiar with medicines to prevent migraines. I think a headache specialist is the doc to see for managing headaches.

Hope you don't have one when you read this post,

Goldie

[Roxanne]

I also get the headaches but kept track and noticed I always get them at my time of month. I also get very symtomatic with my pots and ncs. My gyn had me take the pill for 3 months and then have a cycle but, that is still to much I spend the week in bed. So now I am going to have one ever 6 months and it does not hurt to do this. But those headaches sure do, I also get them if under alot of stress.

Roxanne

[Jersey Girl]

I had acute onset of similar headaches behind my left ear and at the base of my skull when my POTS first starated. I eventually saw a neurologist who specializes in headachers who said mine weren't migraines. I was put on high dose of neurontin (400 mg 4 times a day). I still get this same headache although less intense on a daily basis and take neurontin 100mg 2-3 times each day.. I am also light and noise sensitive. I also get sharp shooting pains randomly as well, if I am overdoing. I spent months in bed initially because my headaches and dizziness were unbearable. Hope you can find some relief. Martha

[TexasGrrl]

Thanks for all the info, folks.. I had to see my GP today and mentioned the headaches.. after a bit of discussion and my revelation to him about having a positive Rhomberg's sign, he recommended I see a local neuro (oh great!) who is also a headache specialist. I told him most of the neuros around here are flakes (last time I called several when I was hunting down my POTS issues, and they didn't know what the autonomic system was.. sheesh)... he sort of nodded like he knew what I was talking about and told me about the one he wants to refer me to. He said if this guy doesn't get it, then our only other option is going to Houston - a 2-hour drive away.

Ugh, I don't want to go to Houston, so if this guy doesn't have something good to offer me, I'll just stick with the butalbital for the forseeable future.

I read an article yesterday about a women who was having terrible headaches and losing her balance and she ended up having some sort of tangled cluster of blood vessels in her brain that they did surgery on, so that sort of prompted me not to ignore this as much as I have been.

I have had an MRI of the neck and head, but it was primarily to rule out Chiari, and I don't know if they looked for anything else.

[Guest Mary from OH]

I have SEVERE migraines and have had since I was a child. The Houston Headache center is VERY good. I would definitely recommend seeing a specialist to be properly diagnosed. Keep a diary of when your headaches occur and what precipitates them. They tend to be genetic. Do you have any family history? Both my parents have them and unfortunately, my daughter inherited them too.

Hers were diagnosed at age 3.

You really need to have a specialist do a proper evaluation to have them treated properly.

I noticed people talking about their meds. 400mg of Neurontin is very low. A typical migraine dose is more like 3600mg a day. I take 200mg of Topamax a day as a preventative and have multiple abortives. (Imitrex, Phenergan, multiples narcotics, ...) I often have to go to the ER for IV meds and fluids. Migraines can actually be a component of POTS, just like FMS. I would check into it further. It's miserable to suffer. Dangerous too!! If you have a migraine for over 72 hrs, you are at high risk for a stroke. It's really nothing to mess around with.

Please take care!

[TexasGrrl]

Mary,

Yes, my mom has started having these headaches in the last year or so as well. We both take the same drug to stop them. Hers aren't as frequent as mine, but she has had a couple of them last 3-4 days in recent months.

I hate taking the time to go to Houston, so maybe this local guy will have a clue. I'm afraid that I wouldn't know if he had a clue or not, unfortunately... but I'll see him and see if I can find good signs of docs that know what they're doing.

Incidentally, my mom probably also has EDS, like me. Since I know my dad's family doesn't have any of these symptoms, and my mom did when she was younger (the POTS, I mean), plus she's always been very flexible. It makes sense that the headaches would be part and parcel of the whole POTS gig.

I have a daughter, too, who I am watching very closely as she goes through puberty to see if she shows any signs of POTS or these headaches..

Thanks for the additional info, Mary... will keep you all posted.

[ramakentesh]

'From my experience, yours kind of sound like tension. I say this because migraines generally are one sided'

Id have to disagree - my doctor informed me that the pain can occur anywhere - from the face (sinus area), behind one or both ears, back of the head, and can be excruciating, or just throbbing, or the pain can be completely absent with aura symptoms only.

[violahen]

I take a megadose of magnesium (Magox 400) every morning as prescribed by Dr. Grubb....it definitely helps my migraines....I still get them, but they are less frequent and MUCH less severe.

Kristen

[ramakentesh]

thanks for teh tip - ill try that out

[TexasGrrl]

Dr. Grubb also prescribed Magnesium for me; it didn't work. He also prescribed Bextra for them, which might have been like peeing in the rain. I couldn't tell that it did anything at all.

I have an appointment with the neurologist on February 23rd. Hopefully I'll be able to get my MRI from the hospital where it was done and bring it to him for review.

Fortunately, I haven't had a headache in a little over a month, but they'll be back... they always are.

[justme]

My wife suffers from severe migraines. She takes Maxalt and if that doesn't work, she has to be admitted for about 3 days.

[kristinp29]

Hi TexasGrrl,

I had migraines for a long time--5-7 times per week. I tried two different medications for them, but my body was always too sensitive with POTS to handle any meds. I guess I just got used to living with them. You know, you kind of adapt as best you can. I mean, it's not like the pain goes away or anything; you just learn how to function with it. At that point, I was too sick to function very well, so it wasn't that difficult! *shrug*

Within several months, that symptom passed, as have all the rest of my symptoms. They always seemed to go in stages. Strange...

I hope the medication you're on will work for you. Best wishes,

Kristin

[kristinp29]

Sorry for the double post--I just read what others were saying about magnesium and wanted to say that, from my experience, magnesium has helped a lot as well.

~Kristin