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Posted 6/18/2008 1:40 PM (GMT 0)
Is anyone here taking topamax for migraines, if so how is it working for you, my sons on, it seems to be working somewhat.

And does anyone know when its suppose to go generic?

Posted 6/23/2008 12:20 AM (GMT 0)
Hi Sheryl, I took Topomax when they were first trying it off label; it was a god-send...at least head pain wise, but I had some problems with it and can't take it. My sister-in-law has been on it for 1 or 2 years now and is doing wonderfully in it.
I haven't heard any news on generic.
Posted 6/23/2008 11:07 AM (GMT 0)

Thanks Jane,first thanks for responding, second im glad it has worked for your sister, it works for my friend too.  Not really sure its helping my son, well yesterday he had a terrible headache, but ithink its too much computer time, he went to bed real late like 2 woke up at 1, so that may be the reason for his headache, but i have noticed a drop in them, no bad side effects , well one good one weight loss, he need to lose weight and he has. He was on an anti phchotic that was puting to much weight on him, and i couldnt take it anymore, it wasnt worth it any more, besides what he doesnt know is that topamax is also used off label for bipolar too, its used as a mood stablizer, which is what he needed, so he still covered there anyway without the antiphyhcotic, which was being used as moodstablizer too. So he is still on on the topamx, so it killing two birds with one stone, hopefully helping prevent headaches(which I think it has for the most part) and it helps stalize his moods, which i think sorta helps, not as well as the other, but i have not noticed much difference since i took him off the other. So its kinda working as a moodstablizer. hes liveable anyway, just have to keep my kids sepreated which is sad. the younger one wants to be around the older one, but its not reciprocated. I feel bad, they fight so much.  Sorry for rambling, thanks for listening.

I have imitrex for breakthrough headaches but after taking it once he wont take , because it made him go to sleep, but it got rid of his headace, and so it did its job.  It doesnt make me go to sleep? So if he hes has breakthrough headaches, he uses advil, i should buy alieve probably work better for him. Or he wont use anything at all and just suffer. alot of his head aches come form what he eats, and sometimes lack of eating, he waits along time to eat then eats a huge meal. So his (our) habits could change abit, and he might see less headaches.

What kept you off the topamax?

I did hear its suppose to go generic in sept(its generic in Canada and has been for some time, and its been in the US quite a while long enough to be generic by now),so I sure hope it does, becasue then i will get back on it, its also used off label for nerve pain, which i have neuropathy. But we cant afford for us both to be on it, so I am with a cheaper off label med for my nerve pain. Both meds do help with my nerves but the topamax seems to give me more energy and it helped me lose weight, which I need.

Ok i strained your eyes long enough, i really do appreciate you listing to me, sometimes HW is the only place I can come where anyone does listen with out judgement. so thank you very much.... smurf ....

Posted 6/24/2008 12:42 AM (GMT 0)
Dear Sheryl, you are carrying a tremendous weight and you need to give yourself credit for doing so well for your children and yourself. We raised 3 sons and I'll tell you 13 is no picnic, boys like to fight and argue with, well sometimes everyone! A lot of times this is just the "king of the mountain" hormones coming through. The staying up late and sleeping is also fairly normal, but you'll need to be the strong one to maintain a certain schedule of meals and sleep and such.
I've read excerpts from a study where they're using topamax to treat bipolar; the results seem to be promising according to what they've published. You may want to search for studies on-line; very often they pay for investigational medications as well as Dr. visits and ancillary services; some also pay for travel. The down side to this is that if the study is a double blind, then your son may not get the medication, but may instead be given a placebo. I would still check it out though.
Bipolar is such a difficult illness to work with, tame and control, but trying to do so with a 13 year old takes a great deal of strength and I give you a lot of credit for doing so. The Imitrex may not be causing your son to sleep, the migraine itself may be doing so; couple that with his erratic schedule and a teens need to sleep a lot and his body will take every chance to sleep that it can.
I have bronchiolitis, the smallest airways in my lungs are fibrotic; this means that it's difficult to breathe. The topamax caused severe respiratory distress syndrome in me...it caused me to have a tremendously difficult time breathing, so even though it worked wonderfully for my headaches, I couldn't breathe!, hence, no more topamax!
Hang in there!! hopefully the topo will go generic for you soon; the original patent is scheduled to expire in August 2008, but there can always be patent lawsuits and extensions that may make this date go by without generics being released.
Posted 6/26/2008 12:47 AM (GMT 0)

OH GOD...PLEASE BE VERY CAREFUL TAKING TOPAMAX!!!!  It's been years since I stopped taking that toxic poison and I pay for it every day.  It destroyed big chunks of my brain and many of the mental abilities I used to possess.  My shortterm memory is shot, along with a lot of my longterm memory.  My spelling and grammar skills have seriously dwindled.  I can't communicate verbally like I used to, and I feel like a total dolt.  It's basically like my brain is mostly gone and my head is just a big fishbowl on the top of my head. 

If the medication helps, great.  Just carefully watch for any signs of decline in skills or abilities.  I never got a moments help with my migraines, but a lifetime of residual brain cramps.

Leigh Ann mad

Posted 7/9/2008 11:07 PM (GMT 0)
I just started taking Topamax last week. Let me tell you IT IS NOT WORKING! I had such a horrible Migraine last week for 2 days that my PCP gave me a shot of Toradol it took almost 2 hours before it kicked in. It lasted about a day and a half then the headaches came back. It's driving me Crazy!!!!!!!
Posted 7/11/2008 10:53 AM (GMT 0)
It is my understanding of this medication, that you must build up to effective levels.  I have been taking topomax now for about six weeks and am up to two  25 mg in the am and two 25 mg in the pm for a total of 100 mg daily.  I am just beginning to see results.  I seem to be getting fewer headaches and they are most definitely less painful.  Mine tend to run cyclical tho, so time will tell if this is an accurate picture of my migraines.

I also feel my mood is better.  I had been taking welbutrin which seemed to have stopped working after about six months.  I have a friend who is terminally ill and apparently I am having difficulties dealing with a forty-something woman being terminal.  This has helped me regain some of my energy levels and sleep patterns.

I had previously tried amytriptyline with little effectiveness and the side effects of a freight train...lol.

I already have some short term memory issues so I hardly notice any from the topomax.  I get a little of the tingles in my hands and face at times but so far, that is the only side effect I am experiencing.  Doesn't really bother me much at all.

As for the pain of the headaches, when I do get them, no prescription meds worked for me, but Excedrin is a miracle drug for me.  If your son is able to take aspirin (some pediatricians do not like that concept at all)  it really has been what has kept me totally functional through all of this scool

Mmm....I remember being 13.....I am surprised my sister and I actually lived through it at all.....God Bless you....  tongue   It is indeed a difficult time

Posted 8/3/2008 2:18 PM (GMT 0)

Hi all 

I have been having migraines for over 30 years.  Tried everything.  I recently was put on Topamax June 1st.  25mg the first week.  50 mg 2nd week.  75 mg 3rd week and now at 100 mg. 

I used to take about 9 Imitrex per month just to stay in control.  I am down to about two a month which is great.

Here is my problem though.  Since I started the Topamax, I have had very bad Diarrhea since the first week.  Everyday now for 8-weeks.  Worse in the morning.  Lost about 12 pounds.  Now have painful hemroids from all the diarrhea and some joint pain developing which I also believe is linked to the Topamax. 

My doctors suggestion was to eat yogurt with active cultures every night before bedtime to control it.

I am ready to get off the Topamax and take chances with the migraines.  At least I know what to expect. 

Has anyone else had the diarrhea with the Topamax?

Posted 8/3/2008 5:04 PM (GMT 0)
i took topomax samples my doctor had given me for about 2 weeks. wehn i went to get my perscription filled, i found out that it made my birthcontrol ineffective... it seemed to be workin ok but id rather have a headache than a kid right now... so yeah. lol
Posted 8/6/2008 10:34 PM (GMT 0)
I've been on Topamax for over a year, I take 50mg in the morning and 50mg at night and take Relpax as needed when I get migraines.  I'm 27 now and have been getting migraines since I was about 12 years old and tried many different medications.  Topamax was really hard at first because of all the side effects, I literally thought I was going crazy for about the first month.  I had speech problems, short term memory loss and lost a lot of weight.  I literally had NO appetite.  But all of those side effect subsided after about 3-4 weeks and I could tell that my headaches were really starting to regulate after a few months.

I still get clusters of headaches once in a while.  Before I was on any medication at all (I used to be on medications before Topamax) I used to get between 5-8 migraines a month.  Now I get less than 4.  Any improvement for me is positive.  Of course living with migraines is never fun but whenever I can find something that is an improvement to my quality of life I will gladly try it, and this is one thing that has definetely helped me.

 

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