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tammy66

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pittsburgh,pa
Gender: female

Topamax(topiramate) for headaches - help!
Jan 6^th, 2011 at 8:18pm

Amanda -9years old, had her surgery in Boston (bilateral -indirect pial synangiosis) March 30, 2010 for MM. She has been doing pretty good since, however the headaches and tiredness have not improved. Her 6month MRI was good, it did show that the rt carotid narrowed more (just about closed now)and if she hadn't had the surgery when she did, things wouldn't be good for her. So thankful that we went to Boston and saw DR. Scott and Smith!!!! So back to the headaches - she saw a new Neurologist this week and he is suggesting to try Topamax -low dose 25mg every night. She rates her headaches as a 6 (10 being worst) and has about 4/month. Missing school because of them and any increase activity, sleeping over , staying up late or holiday months- they are the worst. We said we would try it for a month, keep track of side effects and headaches- if don't get better or side effects are bad- we will not try increase dose, will just stop. I am worried though about the side effects. My husband went on the internet with reviews from different people taking this med. I thought it would be better to ask everyone on the MM site. Anyone taking this at this age? What are the good vs bad effects. Do they help the headaches or does it give more problems with the headaches? Is it highly recommended or totally discouraged? I did email DR. Scott and he says it is worth trying. Just wanted thoughts from MM patients who have taken this or are currently on this med.
Thanks all for any help and advice. Amanda is having her yearly angiogram in March- we will be making a road trip to Boston and plan to take the kids to the aquarium and hockey game while there.
Tammy (Amanda's mom)

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pamR

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mom of 15 yr old twins,
one with MM

Posts: 62
Sellersville, PA
Gender: female

Re: Topamax(topiramate) for headaches - help!
Reply #1 - Jan 7^th, 2011 at 7:06am

Hi Tammy. My daughter Courtney is 14 and had her surgery in august of 09 in Boston. She still suffers from daily headaches and is ALWAYS tired. She has started taking a medication called neurontin, prescribed by her neurologist at CHOP. It seems to have stopped the really bad ones(vomiting, freaking out,). She has not taken the topomax. I know how frusterating it is to see your child suffer every day with these headaches. Sometimes I want to scream! Totally thought the surgery would have stopped them. Hope this helps.
Pam

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Becky

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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: Topamax(topiramate) for headaches - help!
Reply #2 - Jan 7^th, 2011 at 4:30pm

I was diagnosed and had my surgerys when I was 22. I was on Topmax for awile. I thaught it worked very well for me. I used to wake up with a migraine everyday. i don't remeber the dose it was, but eventualy my migrains slowed down the more I have healed. I only take an as needed migrain medication generic excedrin lased with a mussle relaxer (vicaden). The only side effect from the topamax was a decrease in my lebido, which should not be an issue for some one who is 9.

If the migrains don't inprove then i would have them look at if she is getting enough blood flow to her brain in the MM area. She may need another type of surgery. I had the STA-MCA and EMS.

Hope this helps,
Becky

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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

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hrsridermom Senior Poster Offline mother of 19 yr old daughter with MMD Posts: 292 Tampa, USA, FL, Florida Gender:	Re: Topamax(topiramate) for headaches - help! Reply #3 - Jan 7^th, 2011 at 5:43pm Destin is 16 and takes Topomax. She recently had Botox and I'm hoping it works enough to get her off the topomax...which hasn't seemed to help much anyway. I think one of the side effects is fatigue.
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katieSD New Poster Offline I Love MM.com! Posts: 32 Aberdeen, SD Gender:	Re: Topamax(topiramate) for headaches - help! Reply #4 - Jan 9^th, 2011 at 12:49pm I also have taken topmax (at 29) I did not find any releaf from headaches, but it did make me EXTREMLY tired! It probably a little differnt for everyone!
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tuknits

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Posts: 67
Batavia, IL
Gender: female

Re: Topamax(topiramate) for headaches - help!
Reply #5 - Jan 12^th, 2011 at 2:38pm

I take topamax for my headaches and it helps me quite a bit, however I am an adult (43). I had headaches leading up to my surgery (about the 6 months prior) and really wicked ones afterward that I just couldn't function with. Initially I had a lot of side effects from topamax. I mostly had numbness and tingling in my extremities which was pretty severe. I had read about this side affect before I started taking it and was worried that I wouldn't know the difference between the side effect of the med and a TIA but I definitely did. I was a distinctly different feeling. It got much worse if I went out in the cold but it went away after a few months on the med. I also had to stop drinking soda initially because it made everything carbonated have a weird metallic taste but that went away after a while too. Some other side effects - fatigue and mental fogginess are common complaints. I felt that way as well but I had major fatigue before I started taking it so its hard to say. I have been on it for over a year and was just diagnosed with fibromyalgia and fatigue and mental fog are two big issues with FM so hard to say if any of it was the topamax or just the FM. It helped my headaches in such a tremendous way that I didn't really care about any side effects. Having said that, dealing with the side effects as an adult is one thing but being 9 years old is quite different. Certainly everyone reacts to it differently and some may not experience side effects at all. Either way, I hope that Amanda finds some relief very soon. Blessings
-Tracey

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The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart. - Helen Keller&&

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hillary

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My daughter Holly has
MM

Posts: 340
new braunfels, USA, usa, 279, 285, TX, Texas
Gender: female

Re: Topamax(topiramate) for headaches - help!
Reply #6 - Jan 24^th, 2011 at 12:20am

Since early last year my daughter has starting having daily headaches and also several severe migraines a month. She was hospitalized in May for 10 days while trying to get a migraine under control. She was put on Topomax as well which she took until July. In July she went back in the hospital for another Migraine where she was also put on Verapamil (bad medicine). She took both until Sept at which point she started having really bad side effects and was taken off of both. In mid October my family and I relocated back to California so that she can be seen at Stanford again.

She had her MRI today, we see Dr. Steinberg tomorrow. On Feb 10, 11 and 14th she will be doing the rest of her testing.

Hopefully through all of this we will figure out what is going on. She too misses 1-2 days of school a week.

Hillary

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leemyd

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Daughter: STA-MCA Bypass
at age of 9 in 2007

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Herndon, USA, VA, Virginia
Gender: male

Re: Topamax(topiramate) for headaches - help!
Reply #7 - Feb 16^th, 2011 at 9:36pm

My daughter had her surgery with Dr. Steinberg 3 years ago at the age of 9. We must have gone to the emergency room on the average once a month during the 1st post op year and perhaps once every other month during her 2nd post op year. No one could explain to us whether her episodes were TIAs or seizures, which always accompanied severe migraine headaches accompanied by nausea and vomiting. In fact, many visits to the emergency room was due to her inability to keep fluid down due to the vomiting. On the 3rd post op year, she was put on Keppra (currently at 2000mg per day), which significantly reduced the frequency of episodes. Also, Doctors at Stanford prescribed her Midrin as a 'rescue' medicine for her headaches. We believe this medicine did noticeably reduce the intensity of her headaches, nausea, and vomiting. Hope this helps. Best of luck.

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Little Luca

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Whatever it takes

Posts: 346
Somerset West, South Africa
Gender: female

Re: Topamax(topiramate) for headaches - help!
Reply #8 - Feb 17^th, 2011 at 5:55am

Luca was only 1 year old when she was taking Topomax. She doesn't take it anymore and I can't tell you whether or not it was actually doing anything for her because she was so young, but my point is that it very definitely can be taken by kids. I think tiredness and grumpyness are the worst of the side effects which, in my opinion, are a small trade off for relief from headaches.

Give it a try.

Stay strong
Mark (Luca's Dad)

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1st stroke in September 2008, age 10 months
Bi-lateral mm diagnosis
2nd stroke in November 2008, age 1 year old
Left side surgery in December 2008
13 years on now
Doing just great!

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hanginon New Poster Offline I love YaBB 1G - SP1! Posts: 14 USA, usa, 405, 106, MI, Michigan Gender:	Re: Topamax(topiramate) for headaches - help! Reply #9 - Mar 13^th, 2011 at 11:29am Yes, I tried Topamax for about 9 months, and did not find it helpful at all for my headaches. I was up to 200mg/day.
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