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Topic: Topamax (Read 467 times) |
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Elisabeth_T.
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I visited my neurologist yesterday and told him that I had stopped taking the Topamax he prescribed after a six week trial since it seemed to me that it only worked when I combined it with Verapamil. Also, I did not like the side effects from the Topamax. The neurologist told me he was glad I stopped taking the Topamax because further studies have shown that Topamax does not work for clusters.
I'm posting this for some of you who are taking Topamax and are waiting for relief.
Elisabeth
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nancyc
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Friends don't let friends post drunk on mbs......
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Re: Topamax
« Reply #1 on: Mar 2nd, 2002, 11:10am » |
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Would be very interested in finding out what your side effects from topamax were...could you email me? I was on topamax for awhile...my neuro at the time was very aggressive and started me out the first nite on 200mg...I was pf after that nite...then the longer i took it, the more depressed and zombie like, i got....i could not live like this anymore...in fact, it made me not even want to live so i had to get off of it...i had tried it once before and started at a low dose, but it did nothing...i do know of one person who has been on it for a long time and does good on it...but she thinks it may cause depression too...my old neuro got really upset with me when i came off of it saying that it does not cause depression...but that is a side effect in the PDR too...would like to hear from you...thanks...
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bdenkew
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Elisabeth.
I was prescribed Topamax a few weeks ago, but held off until I had more information about the side effects. Would you mind posting what some of your side effect were and where you saw that it hasn't worked very well for clusters?
Thanks,
bdenkew
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Elisabeth_T.
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Hi Bdenkew,
The side effects I had from the Topamax were light streamers I could see out of the corners of my eyes when I turned my head, tingling and numbness in my hands and feet, problems with my thoughts connecting which made me very unsure of myself. I was constantly double checking my work and finding that I had made mistakes. Also, a feeling of little electrical shocks in my brain.
It was my neuro at the Cincinnati Headache Clinic that told me last Thursday that the new findings show that Topamax does not work for clusters. This must be a recent finding since the Topamax was prescribed by him in November. I did not ask any further questions about that since I had already found that Topamax did not work for me and had stopped taking it.
I suggest you ask your doctor about this. Sorry, but that's all I know.
Elisabeth
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karen
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My daughter has been on 500 mg of Topamax for 7 months now. She has been cronic for 18 months (HA everyday, from 4 to 10 kip scale, up to 8 HA per day) She tried everthing, 4 nero's, and we have a grocery bag of drugs that did not work. Any way, the topamax has been the only drug that worked, it took her HA's to 1 per day at a 4 Kip. She also takes 1 oxycodin. Her HA still comes everday at 7:00am, so strange, the nero has just told to try 600 mg per day to see if we can get rid of that last HA. Her side affects were, 1st month-tingling hands, sweating, drowsy, forgetful, weight loss (about 30 lbs now)could not drink soda's. 2nd month- sweating, taste still odd but all other side affect are gone. Now after 7 months she still gets hot flashes during the day but thats it. This drug gave her lift back. I do not know if it would work for everone but it has been a "life saver" I don't think she could have taken much more. She is 21 and started getting Cluster at the age of 18. I just pray that one day they will go away and she can be drug free. God bless all who suffer from this.
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justin
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what it is...
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Re: Topamax
« Reply #5 on: Mar 7th, 2002, 9:10pm » |
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i so scared of topamax. verapamil is not cutting it now. my neuro has recommended it but i have had side effects from everything. for some reason i just react really strongly to all meds. i'm just scared of not being me anymore. it's bad enough the headaches steal 3 hours of my life from me a day. i don't know if i could handle being a 'zombie' all day everyday. i would like to have some kinda of social life. not sure what's worse though , HA's or side effects. ugh. so annoying. it's like i can't even make plans. i can't tell you how many times i have to duck into bars on the street or seedy public restrooms to drop trow and inject myself. so annoying. sorry to rant. - karen, does your daughter post on this site. i'm 23 and would be interested in getting another young persons view on things. just curious. email if you like. thanks
jd
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if any clusterheads in NYC want to get together shoot me an email justinott@mac.com
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DAYSTAR
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 IHAVE SUFFERED 25 YRS. EVERYDAY OF MY LIFE.NO ONE IN MY FAMILY REALLY CARES TOO MUCH, ESPECIALLY MY HUSBAND,I HAVE STARTED TRYING THE PROGESTERON CREAM.WHO KNOWS?
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Lori
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Re: Topamax
« Reply #7 on: Mar 11th, 2002, 6:04pm » |
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I am so sorry for all of you who suffer so from these awful HA's. I am an episodic CHer and I know how 6 weeks of my life is with these...I just pray for you all...especially for you who are chronic. I am so sorry you suffer so.
I just started topamax Sat...25mg a day to start. Doc said if that doesn't work...increase to 50mg. No HA yesterday, alot of pressure in head today...so took zomig...and am fine. If this is all I feel for next few weeks...I will say topamax is a success for me, but too soon to say. I feel tired, not totally coherant...but better than HA in my opinion. I was on indocin last week for 4 days...was helping but made me VERY sick by FRiday...in fact...still getting over that! If it's not one evil, it's another I guess.
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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NotH20
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Re: Topamax
« Reply #8 on: Mar 14th, 2002, 3:08pm » |
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I have had CH for over 20 yrs now and this is the 1st time I've never responded to a treatment. Usually we start w/ Calan, followed by a round of Prednisone, along w/ Imitrex injections. O2 quit working many years ago - this past cycle we started Imitrex pills along w/ Zomig and Maxalt. Then we started Keppra for the first time - what ride that was! Nothing seemed to break the cycle so i was admitted for a 6 day stay in the hospital for a DHE IV treatment - WHAT A RELIEF!!!!! It was like a ray of sunshine for the first time in 20 years!!!! Then we started the Topomax and I was discharged on the Keppra and Tomopax. My doc increased the Tomopax and decreased the Keppra - this entire time while being on Calan.....if all goes to plan my last pill should be April 19th!!!!! I haven't had a ch since the 2nd week in January. I still have pains in my head at times and there are some side effects of the Topomax - weight loss, flashes in the corners of my eyes, tingling in nose, lips, hands and feet at times - but NOTHING compared to the ch.......I would love to give encouragement to anyone to stay w/ the Topomax if they can thru the first few weeks of the clumsy stage and the confusion stage - that does go away and gets better. This may not be the solution for me the next time - but thank God I've been pain free for so long.
My thoughts and prayers to you all......
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MaryD
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Hi my name is MaryD, and I have been taking Topamax since September. My doctor started me off and a very low dose 12mg a day and up it 25mg a week until I reach 150mg a day. I had no side effects, and it keep my CH attacks under control. The problems is that it doesn't do me any good during my worse part of the cycle which is Feb-April. So at this point nothing seems to work for me during the worse part of my cycle. I'm not taking Topamax now but will continune to take it starting in May once again. I am a chronic CH sufferer.
I believe in Topamax if you are not in peak, and if your doctor starts you out at a low dose so as to allow your body to get adjusted to it. But of course we are all different, what works for you may not work for me.
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MaryD
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just wanted to let you know that Tomapax has been my saving grace since September. My doctor (Dr. Kudrow) started me off with a low dose of just 12mg a day then worked me up 25mg a week until I hit 150mg. I had no side effects..but the results were wonderful. Although I'm not taking anything right now because nothing seems to work for me during my peak period. I am a chronic CH sufferer, and will be going back on Topamax in May. I think the important thing about Topamax is to start out very slow to allow your body to use to it....Topamax is a very strong drug... as most of you who have try it or have taken it have noticed. When you come off the Topamax you should come off of it slowing too 25mg every three days. I just thought I put my 2 cents in...
MaryD
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MaryD
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Hi,
Just wanted to let you know that Topamax has been my saving grace since September. My Doctor (Dr. Kudrow) started me off with a very low dose of just 12mg a day for one week. Then increase it by 25mg every week until I reached 150mg a day. I had no side-effects.. But my results were wonderful. Although I'm currently not taking anything due to the fact I'm in my peak period and no med seems to work for me at this time, I do plan on going back to Topamax in May. I am a Chronic CH sufferer and have my worse peak period from Feb-April. I think the important thing about Topamax is to start out very slow and increase gradually, thus allowing your body to adjust to the med...Topamax is a very strong drug!! As most of you who have taken it or have try it know. It also important to know when coming off Topamax it must be done slowly, 25mg every three days....Or Wow you really will get side effects..... Just thouoght to my two cents in...
MaryD
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