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I'm participating in a migraine research study.

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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-20-06 01:57 PM
Original message
I'm participating in a migraine research study.
I went to see my neurologist today for a checkup and she asked me to take part in her study. The full title is "Modulation of the excitability of the occipital cerebral cortex using migraine prophylaxis medications." Basically, she had me read letters flashed on a screen while pressure was placed at the base of my skull. It didn't feel all that great, but hey, I get free Maxalt (which is expensive) out of it plus $50.

I read almost all of the letters correctly, which placed me in the "chronic migraine" category (we already knew I was there). That means that I was able to interpret information even during pain. People who don't have migraines normally can't read the letters because they are so distracted by the pain. The purpose of the study is to see if medications currently used to prevent migraines help control sensitivity to stimulation.

Anyway, it's going to be interesting to see her findings when she's finished. :)
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Susang Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Mar-21-06 10:58 AM
Response to Original message
1. Sounds hopeful
I'm on Topamax 2X daily to prevent migraines. It's worked pretty well so far, I only get about one or two a month now. Nothing I can't handle. ;-)

I've never heard of Maxalt, is it something you take to prevent the migraine or after it starts?
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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Mar-21-06 11:07 AM
Response to Reply #1
2. Maxalt is like Imitrex (only it works for me, unlike Imitrex)
You take it at the first sign of a migraine.

You and I have way too many similar ailments, kid, it's almost eerie. :D

The Topamax has been a godsend for me. I wanted to fall on my knees at my appointment yesterday in gratitude. I'd been getting anywhere from 10 to 12 a month and now I'm down to one or two a month too.
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Susang Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Mar-22-06 07:08 PM
Response to Reply #2
4. Topamax made me lose weight
An extra special added bonus! :thumbsup: :D
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ProfessorGAC Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Mar-22-06 02:19 PM
Response to Reply #1
3. That's What I Take
Maxalt is not a preventative but a treatment once a headache has begun. I've taken one once when i woke up because the migraine was in full bore. It worked in about 40 minutes. I've taken them at onset and the headache goes away before it ever gets serious.
The Professor
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REP Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Mar-23-06 05:49 AM
Response to Reply #1
5. Topomax And Elavil
Elavil wored for a while, and then I started getting more migraines, so now I take Topamax as well. So far, knock wood, it seems to be working.

Maxalt is a magic pill that tastes like ass that can seriously curtail a migraine! (I get the melting kind.)
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fight4my3sons Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Mar-25-06 09:08 PM
Response to Original message
6. I've been taking Topamax for about eight months.
It was like magic for me. I can't take the other medications because of the risk of clots. I have a blood clotting disorder. I am afraid to go off of the Topamax now. The neurologist wants to see me back in August and if I am migraine - free he wants to wean me off of the Topamax.
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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Mar-26-06 06:31 PM
Response to Reply #6
7. I started on Topamax in January.
So far, so good. I'm having two, maybe three migraines a month now. I have several hernaited discs in my neck and lumbar spine, though, so I have a lot of other aches and pains associated with that. I was having anywhere from 10 to 12 migraines a month before, so the Topamax has been a godsend for me.

I have a year's worth of refills for the Topamax. God, I hope my dr. doesn't decide she wants to wean me off of it too. The thought of those headaches coming back like that freaks me out. :(
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pdxbecca Donating Member (69 posts) Send PM | Profile | Ignore Sun Mar-26-06 10:03 PM
Response to Reply #7
8. I can't imagine 10-12 migraines a month
Edited on Sun Mar-26-06 10:04 PM by pdxbecca
You poor thing. I get about 2 disabilitating migraines a month and that is more then enough. I'm glad you're doing well on the Topamax, and I hope you're drinking lots of water! I tried Topamax a year ago and I didn't drink enough water so I ended up with kidney stones.:hurts: It also did a number on my memory and my mood. To top it off it didn't help the migraines either. I'm not sure I will ever find a drug that will actually work for me and I've suffered since childhood!
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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Mar-28-06 02:19 AM
Response to Reply #8
10. Ugh - yeah, I know about the kidney stone risk
I had kidney stones once, so I was warned. I now already drink about a gallon of water a day (talk about learning the hard way... ow).

Yeah, I guess it doesn't work for everyone. That sucks that you can't get relief. Right now I'm reading a book called 'All in My Head' by Paula Kamen, a woman who chronicles her ordeal with her headaches and her neverending quest for a cure.

Best of luck to you. I do hope you can get some resolution.
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Susang Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Mar-28-06 03:38 AM
Response to Reply #10
12. I read Paula's book when it first came out
She even emailed me when I mentioned her on my blog (back when I still bothered to blog). She lives in Chicago and even though we have mutual acquaintences, for some bizarre reason, we've never met.

Her book's great; I ended up buying copies of it for various family members who have wondered why I just don't "get over it". As someone with CFS and hypothyroidism, I'm definitely one of Paula's "tired girls". ;-)
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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Mar-30-06 02:33 AM
Response to Reply #12
13. I am really enjoying her book.
I just finished the part about going to all the bridal showers and all the energy it takes to socialize.

Right now I'm trying to get together with a couple of friends from high school. This year is our 20th reunion and these are two people I'd really like to see (I've been in touch with both of them off and on). But I have to schedule it on what I think might be a "good" day - and on a day when I don't have PT or doctor's appts., etc., or anything else that might otherwise sap my energy.

Even though she and I don't have the same story, I can very much relate to what she has gone through. My neurologist had a copy on her bookshelf - that's where I first saw it, actually.
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REP Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Mar-30-06 06:03 AM
Response to Reply #10
14. I'm a Consecutive Stone Former and I Take Topamax (Anecdote Ahead)
For what it's worth, since I've been taking Topamax, I've been forming stones at the same rate and the same composition; that is, not making more than usual or making different kinds of stones than I usually do. No one's sure why I form stones like I do - consecutive stone formers are relatively rare, and young female consecutive stone formers are very rare. Guess I'm special! But I'd MUCH rather have a stone than a migraine.
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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Mar-30-06 12:38 PM
Response to Reply #14
15. How do they treat the stones?
Do you have to have lithotripsy(sp?) every time you develop one?
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REP Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Mar-31-06 12:47 AM
Response to Reply #15
16. Mine Are Too Hard For ESWL
I am usually able to pass them without help; they're usually just 6-8mm since I form them so quickly (about every 30-45 days or so). I did have to have some hideously painful surgery last year to remove one lodged in the lower pole of my left kidney that was thought to be causing my recurrent/chronic kidney infection (doesn't seem to have helped) and will be having a cystoscopy in a few weeks to make sure I don't have a bladder tumor (unlikely, but since my father died at 56 of a cancer that started in the bladder, I'm going along with it).
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fight4my3sons Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-27-06 10:45 AM
Response to Reply #7
9. My migraines got better as the months went on.
Before I went on Topamax, I was getting 4-5 a week. It was miserable because I am a stay at home mom of three kids, ages 3yr and twins 21 months. Every time I have an appointment with the neurologist my husband says "well he's not taking you off your medication is he?" I know I was miserable to live with when I was having the migraines all the time.
It is one of many symptoms of Antiphospholipd Antibody Syndrome - my lovely blood disorder.

Hope the Topamax keeps working for you!
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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Mar-28-06 02:21 AM
Response to Reply #9
11. I cannot imagine trying to raise young kids while having migraines
I have no idea how you did it... you are superhuman.

Yeah, I know I'm not fun to be around when I have my episodes either, and I feel bad about that.

Best of luck to you, hope you continue to feel good. :)
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