Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> Update on Topamax
        
(Message started by: mustang on May 12^th, 2002, 9:10pm)

Title: Update on Topamax
Post by mustang on May 12^th, 2002, 9:10pm

OK I tried the Topamax and that was the worst 2 days I'v had in awhile. CH, and just and all over bad feeling, also noticed small vessel in eye burst. Going to call Nuro Mon. and tell him I will not take any more, Seemed to escalate my headaches. :(

Title: Re: Update on Topamax
Post by Mr. Anonymous on May 12^th, 2002, 10:35pm

I know exactly what you mean. I too had blood vessels burst in my eye. My neurologist had originally told me to stay on it for two months and to give it time before I made another appointment with him. To hell with all of that. I had to stop taking the stuff after six days. My attacks increased in frequency and the pain even seemed to be more intense. This of course does not mean that others won't find it helpful with their attacks. Those of you reading who haven't taken this medicine, please tell you doctor about the experiences of us who have had trouble with Topamax. He might learn something. I have found that doctors don't always know everything you think they know.
Mr. A

Title: Re: Update on Topamax
Post by NotH20 on May 13^th, 2002, 11:03am

Sorry mustang :( I wish that it had worked for you. I'm glad that you have stopped taking it though with those side effects that you've mentioned. It's better to move on to another "drug of choice" instead of beating a dead horse into the ground.....Good luck to you!

Keep the faith,
NotH20

Title: Re: Update on Topamax
Post by mustang on May 13^th, 2002, 5:07pm

That's just what he told me, give it a 2 month chance
I don't think I could go that long on it. I'm still having
small ch from all this even in the day hours. The thing is
I don't know how soon he will see me or if I want to go back to him. I really don't have much faith in him. I have been with him almost 3 yrs. and I bet he has spent a total of 3 hours of his time on me or even listens to me. Am looking for a new one, in the mean time will keep my 02 handy. Nothing more I can do at this time.
Irene >:(

Title: Re: Update on Topamax
Post by NotH20 on May 14^th, 2002, 7:55am

Irene,

Have you checked the OUCH site for docs in your area? That would be somewhere to start. You really need to find someone that will listen to you and one that you can trust. We don't have a broken arm that can be fixed and then we're on our merry way. We need a long term relationship with a doc that has knowledge with ch's. I wish you luck w/ this - it's tough to find a doc that you click with, especially when ch's are involved.

My thoughts are with you,

NotH20

Title: Re: Update on Topamax
Post by mustang on May 14^th, 2002, 6:39pm

Yes, I checked the OUCH site for nuro. none very close
I also e-mailed a couple of people in my area ,but no one has helped. My nuro did call back with px it's for methylprednisolone I have no choice but to try. Going on vacation in the morning so will keep my 02 real close.
Please respond if anyone has tried this med.
Thank you all for your concern,
Irene

Title: Re: Update on Topamax
Post by plateglass on Jun 10^th, 2002, 7:18am

I too have just had a hell weekend with Topamax. My Ch's have gotten about 2x's worse and on Sun nite I thought my right eye was going to fall out of my head! Brought me to my knees in tears. I'm calling the Neuro this morning and stopping this stuff I will keep you updated. I can' sleep and defenitley cant work like this.

Title: Re: Update on Topamax
Post by NotH20 on Jun 10^th, 2002, 7:35am

Hey Plate - sorry that you had such a horrible weekend. What dosage are you on with Topomax? Are you on any other meds? What about abortives - injections maybe?

I'm glad you are talking to your doc today but make sure before you nix the Topomax that you are on the appropriate dosage. It takes a little time to increase that med.

Keep us posted.
NotH20

Title: Re: Update on Topamax
Post by plateglass on Jun 10^th, 2002, 8:37am

Hey Not, thanks for the quick reply and the sympathy. I was on 25mg a day for a week. I just boosted up to 50 and that is when I had the hell night. It seems to have made the pain that much worse. As usual the O2 tank was on empty and the Imitrex nasal that I am on as an abortive was taken earlier in the day(I was out of them) Since the introduction of the Topamax it seems that I can't predict when I will get one eg: 1 at around 2am 1at around 9:30 am they are all over the place, and the other thing that I have never experencied in my cluster carreer(12 yrs.) EVERY time I wake up from a nap(they are all naps now) I have a dull cluster that turns into a rager. Well thats enough from me thanks for listening

Steve

Title: Re: Update on Topamax
Post by nancyc on Jun 10^th, 2002, 11:38am

I can certainly relate to all this talk about topamax...i was on it twice...the first time they put me on 25mg and iworked up to 75mg...chs got worse...THEN the next time, a neuro hit me with 200mg the first nite...I was psycotic....crazy as a bed bug...no chs but could not function at all...and i was going to work trying to be a nurse ....very dangerous....That dose definelty stopped the chs but I got so suicidal that he had to take me off of them....I am back on a high dose of another antiseizure Keppra and going thru the same thing....The question with me is pf worth no quality of life? If you cant stay awake, feel like a zombie, and feel suicidal, but you are pf, do you stop it or go on?

Title: Re: Update on Topamax
Post by NotH20 on Jun 10^th, 2002, 12:17pm

Hey Steve - you are still on a low dose of the Topomax. Check the archieves and OUCH regarding the appropriate dosage levels for Topomax to affect the CH......

I know how hard it is to find the right combo. Keep the faith,

NotH20