Author |
Topic: Anyone Try Topamax? (Read 350 times) |
|
stuey
Guest
|
My neuro (his things epilepsy) went to a headache convention and mentioned my case to a doctor there and said he was having trouble breaking my cycle. The other doc said he might try topamax which is an anti-seizure medication that covers two types of seizure and also shows promise with those who have cluster headaches. Just wondering if anyone here has tried it and with how much success. Peace. Stuey
|
|
 IP Logged |
|
|
|
stuey
Guest
|
Sorry I didn't search. I see it's been covered and my apologies.
|
|
IP Logged |
|
|
|
CJohnson
New Board Old Timer
Cannot kill the family, Battery is found in me
Gender: 
Posts: 442
|
 |
Re: Anyone Try Topamax?
« Reply #3 on: Jul 22nd, 2003, 2:16pm » |
 Quote  Modify
|
My new neurologist thinks it might be a good idea to try topomax when my CH strikes again. He said some people get dopey on it but some people don't. If you get dopey you stop taking it, if not, it should be a pretty effective preventative. He gave me the impression that there would be either strong side effects, or hardly any.
PFDANs
-Curtis
|
|
IP Logged |
Through water and fire. From the lowest dungeon to the highest peak, I fought the Beast. Until at last, I threw down my enemy and smote his ruin upon the mountainside.
|
|
|
stuey
Guest
|
Since I seize during sleep I may go on it anyway and stop taking the trileptal i take for seizures now. thanks.
|
|
IP Logged |
|
|
|
2late
New Board Hall of Famer
Ride Free..Pain Free
Gender:
Posts: 1190
|
|
Re: Anyone Try Topamax?
« Reply #5 on: Jul 22nd, 2003, 5:19pm » |
Quote Modify
|
had to stop topamax @ 75mg. a day.......it made me a zombie, hope it works for you! .................Jack
|
|
IP Logged |
|
|
|
Karla
CH.com Alumnus
New Board Hall of Famer
One of Many and Never Alone - Join OUCH
 
Gender: 
Posts: 3090
|
|
Re: Anyone Try Topamax?
« Reply #6 on: Jul 22nd, 2003, 5:45pm » |
Quote Modify
|
I tried up to 600mg and all I got was a lousy memory out of the deal. It did nothing for my ha.
|
|
IP Logged |
Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
|
|
|
Danielle
Guest
|
I am taking it right now (50mg x 2 per day) along with my Verapamil (480mg x 2 per day-600mg x 2). I don't really know what to say about it...I didn't think it was doing anything but when I stopped it to start Lithium treatment, my head went nuts. But, since I am chronic, it's hard to tell because my head goes stupid all the time whenever it bloody well feels like it....
Side effects? Yes, I am noticing some memory problems, and I am apparently not even on a high dose?! On the upside....My Neuro says that Topomax helps with weight loss which can't be all bad....
|
|
IP Logged |
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
   
Gender:
Posts: 14968
|
|
Re: Anyone Try Topamax?
« Reply #8 on: Jul 22nd, 2003, 6:15pm » |
Quote Modify
|
I've used Topamax for epilepsy. It's the only drug that was 100% effective. Unfortunately, it made my ears ring LOUD all the time. No one else has mentioned that side-effect. It also made me a bit tired and forgetful as well. However, it worked and I'd like to try it again.
My doctor and our convention doc says it should begin with a small dose of about 25mg and then slowly upward. It also should be tapered off slowly if you quit the stuff. The doc said he takes 100mg for his migraines, if I remember. Anyway, I did that and it killed my epileptic seizures but I'm on other stuff now.
Try it, you might not have any problem. Some don't.
Charlie
|
| « Last Edit: Jul 22nd, 2003, 8:31pm by Charlie » |
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
pigeon
New Board Newbie
Trying to get out of my head
Gender:
Posts: 31
|
|
Re: Anyone Try Topamax?
« Reply #9 on: Jul 22nd, 2003, 6:53pm » |
Quote Modify
|
I've used topamax for my last three cycles. I get hit every 12 months or so. I also use indocin along with the topamax. I think the key is to move along in slow doses, 25mg increase per week and remember to taper off the same. I tried to get off it a little too fast this year and traveled thru some deep deep fog. Good luck
JoeP
|
|
IP Logged |
|
|
|
stuey
Guest
|
Charlie I was curious. Have you tried Trileptal? It's in the same family as tegrotal but has less side effects. I can't say I have any bad side effects at all. I was probably drowsy at the beginning but that passed like on other meds. Also, when you seize do you seize during awake time or while you sleep. I only seize in deep sleep for some reason and it's called nocturnal epilepsy. I used to be afraid to sleep cause I could tell during the day (bottom left lower lid would start twitching) and I would get a nasty feeling in my head like a fullness and sometimes my left pointer finger would twitch. Curious what your signs you were gonna seize were. Stuey
|
|
IP Logged |
|
|
|
NotH20
New Board Hall of Famer
Gender:
Posts: 778
|
|
Re: Anyone Try Topamax?
« Reply #11 on: Jul 23rd, 2003, 1:21pm » |
Quote Modify
|
Stuey - I was on Topomax for my last cycle in late 2001 and early 2002....it does affect your memory a bit and also is a wonderful weight loss med  Sometimes it makes your hands and feet tingle (in my case it was the tip of my nose - go figure LOL)....also I saw "black bugs" in the outter corners of both my eyes - this happened when my dose was higher (little squiggly lines moving around). Try it and hopefully it will work for you. Just be aware of all of your symptons since it's sorta a weird med.
Good luck to you,
Mia
PS - I agree w/ everyone that posted about slow increases and decreases - watch this carefully.
|
|
IP Logged |
|
|
|
stuey
Guest
|
Thanks Mia and thanks everyone. I guess it will be up to my neuro anyway. I'm taking 960 verapamil and it is actually working with the 100 of elavil. I was beginning to think nothing would help cause my cycle started late april but now i am four days pain free day and night and i am happy about this. The only reason I was really thinking about Topamax was because I seize in my sleep and i know it's an anticonvulsant. So I was maybe wondering if I could know out 2 birds with one stone. i just wish more was understood and more people understood what these attacks are. there is absolutely nothing cool or hip about having to say that i suffer from clusterheadaches. it plain and simply sucks and i just hope those who are in their cycle now find relief somehow. my headache specialist said we are lucky to have triptans now cause even 25 years ago we would have been even more devastated cause triptans didn't exist. Peace to all. Stuey
|
|
IP Logged |
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: Anyone Try Topamax?
« Reply #13 on: Jul 23rd, 2003, 2:47pm » |
Quote Modify
|
Stuey, there is an article that was written up on trials done for Topomax in CH that our speakers talked about with us.
Dr. Bigal said that the drug holds alot of promise, but this is where OUCH will have to go to work. If the drug is titrated slowly, starting between 15 and 25mg and titrated by 15mg each week up to 100mg then side effects should be lessened.
The topomax deal is one of the projects that OUCH will get to work on as soon as I get my shit together and get the info to them 
Cat
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
Ree
New Board Hall of Famer
2008's my year to shine~SUN IS OUT!!!YAY
 
Gender:
Posts: 5236
|
|
Re: Anyone Try Topamax?
« Reply #14 on: Jul 23rd, 2003, 6:14pm » |
Quote Modify
|
Dave is going to try topamax as soon as I get to CVS to pick up the prescription... His Neuro says it can be combined with Neurontin anyone let me know if they havent had luck with these two... thanks ree
|
|
IP Logged |
Proud Mom to US ARMY Kiowa OH58 PILOT~CWO2 SCOTT Hawaii, & USMC Vet~Now POLICE OFFICER SEAN, Citizen of the Month~ Breezy~ Nana 4 Matt/Mike&Aya, MIL To Shino Wife to Dave HI BILL!http://www.myspace.com/dungareespocket http://www.prohawaiian.com
|
|
|
stuey
Guest
|
Ree I hope it works for Dave. Let us know how he is doing okay. Stuey
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss