Clusterheadaches.com Message Board


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

        New Message Board Archives >> Jul-Sep 2003 >> Has anyone tried topamax?
        
(Message started by: STABBINGPAIN on Aug 25^th, 2003, 7:25pm)

Title: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 25^th, 2003, 7:25pm

Im sorry I haven't been on the board , I was at the bottomless pain pit . Had me down sat. and sun. in the bed . I went to the neuro today and he's wanting me to start on prednisone and topamax. taking 50mgs of predinsone per. day and 25mgs of topamax 4x per day. makes me a little nervous.. anyone had the topamax . I read a few of you that have taken the prednisone and didnt like the side effects. I just want to know what I'm in for when I start to take this stuff...
Thanks , b-(
Karen

Title: Re: Has anyone tried topamax?
Post by hopefull on Aug 25^th, 2003, 8:00pm

what is topamax normally used for? do you know...like i take topral xl which is a blood pressure med and verapamil which i was told was also blood pressure med... but I don't have a blood pressure problem till i get a cluster...but it's working....one in a.m. and one in p.m. as preventative

Title: Re: Has anyone tried topamax?
Post by FrankF on Aug 25^th, 2003, 8:11pm

I had bad side effects from Dope-a-max. I started at 25mg for a week, then 50mg, then 75mg. I felt like I had Alzheimers type memory loss. I could not remember things that I was supposed to be doing in my job as an electrical engineer at work and it got to be a major pain in the butt. It didn't do anything for the CHs either in the five weeks I tried it.

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 25^th, 2003, 8:11pm

It says that its intended for use as an antiepileptic drug.
I dont know what it is. I'm reading the paper and as far as I can gather from it its some kind of sodium channel blockers.

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 25^th, 2003, 8:13pm

I guess I'm in for a brain failer again now memory loss.. great!

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 25^th, 2003, 8:19pm

not to mention I'm tring to lose weight not gain .YUCKY prednisone fat stuffing puffy making me pill. >:(

Title: Re: Has anyone tried topamax?
Post by hopefull on Aug 25^th, 2003, 8:28pm

in the info does it give another name it might go by? like verapamil is calan

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 25^th, 2003, 8:38pm

topiramate...

Title: Re: Has anyone tried topamax?
Post by hopefull on Aug 25^th, 2003, 8:42pm

I've been looking thru my HA med book it has both those names but only gives amounts ie 25 mg,100 mg, 200mg.... but no details...wish there was another name with it...sorry

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 25^th, 2003, 8:51pm

If this helps....

ingredients:hydroxypropyl methylcellulose,lactose monohydrate,pregeleatinized starch, micro-crystalline cellulose, sodium starchglycolate,magnesium sterate, water, carnauba wax,titanium dioxide, polyethylene glycol, iron(100and 200 mgtablets) and polysorbate 80
OMGoodness ! TOO MUCH STUFF !I cant even begin to pronounce.

Title: Re: Has anyone tried topamax?
Post by UnsolvedEquation on Aug 25^th, 2003, 8:59pm

I've had the same combination, Prednisone and Topomax. They both have lots of side effects but at the same time, it might tame the beast. ( Didn't for me ) Prednisone ( @ 50 mg / day ) usually worked for me, but caused weight gain and 'the puffy look'. Topomax caused me to be forgetful and clumsy, and to lose some hair :(. I don't take either now and my hair grew back !! :) LOL... Goodluck !
PS Topo will double your chances at getting kidney stones !

Title: Re: Has anyone tried topamax?
Post by Karla on Aug 25^th, 2003, 9:01pm

Topamax is used to keep epilepsy under control and prevent seizures. It is also a mood stabalizer and used in depression treatment. I took up to 600mg of this stuff incrimented very slowely in 25 mg intervals. It gave me severe memory loss problems. I couldn't remember how to get to drs office or friends houses. I would forget conversations etc. It sucked. I never experienced weight loss with it but weight loss is suppose to be a side effect when you are at 200mg or higher.

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 25^th, 2003, 9:03pm

Let me see. Im gonna get what ..
FAT, BRAIN FARTS , BALD SPOTS AND STONED.
gee . that sounds wonderful.

Title: Re: Has anyone tried topamax?
Post by UnsolvedEquation on Aug 25^th, 2003, 9:22pm

lol ... yeah, that about sums it all up ;D

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 25^th, 2003, 9:25pm

Anyone in this for a hit ? I hear it has great effects one ya..
Any takers?
going once........

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 25^th, 2003, 9:25pm

OOPS! on .....not one

Title: Re: Has anyone tried topamax?
Post by Lori on Aug 25^th, 2003, 9:31pm

I used topomax, started at 25mg a day for 1 week then to 50mg daily for one week and then to 100mg daily. It gave me the same symptoms as the others but the symptoms did subside for the most part after a few weeks. For the most part, not completely. I was also taking verapamil though. No pred. My clusters were practically non-existent after about a week on the combo. A few breakthroughs but not bad. Everyone is so different. I've heard people say there are bad side effects with pred. I'm sure everyone is different with that too. I guess you can only give it a shot. Just don't do anything that requires too much thinking for a little while. Good luck!

Title: Re: Has anyone tried topamax?
Post by cootie on Aug 25^th, 2003, 9:34pm

I've heard topamox refer'd to as the 'California drug'......people take large doses for short amounts of time and lose 'alot' of weight. But it also causes extreme memory loss doin it that way.....I guess they stop takein it once the weight is off. Also read one article that it could make working a can opener a job. Scarey stuff but think that is when taken to the extreme in binges.....but have also read it can work if started ut very slowly in very small amounts. "That's jus what I read about it recently" and am no expert on it what so ever. So maybe you can go around and write instructions on eerything before it takes effect.....leave yerself little notes how to stat the car ect or flush the toilet......ha-ha-ha ( jus jokein !! ) ....hope it works for ya tho cuz everyone is different. Pam that's computer is barely hangin on (due ta freeze up here gin shortly)

Title: Re: Has anyone tried topamax?
Post by BillyJ. on Aug 25^th, 2003, 9:52pm

http://members.cox.net/catlind/CHconvention.pdf

Please read page 3 paragraph 6
For me Topomax has very bad side effectcs even when
ramped up slowly,but,thats me.I have read reports( can't remember who's)
about severe nausea from starting out at a high dose.
For me Topo also did nothing for the HA,got up to 150mlg/day
before the cycle started,side effects became unbearable.
Prednisone has side effects but it is effective,although
intended for short term use,the bennefits outwiegh the
side effects.(IMHO)
Again I am not a doc,and everyone responds differantly
to meds,this is just my expieriance/opinion.If your BP
permits I would try Verapamil first if your doc agrees.
Either way I hope you find something that helps.
Have you gotten any abortives yet?
PF2U,
Billy

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 25^th, 2003, 9:55pm

The stocks in Post-it notes must be ^ with everyone taking this stuff.... I have a kid with a killer crayola crayon to help and the other drool! between the both I might make it.....we'll see.

Title: Re: Has anyone tried topamax?
Post by UnsolvedEquation on Aug 25^th, 2003, 10:01pm

Quote:

could make working a can opener a job

LOL ... you won't remember making this post next week ! Keep the instructions on how to operate your tv close by ! And ease off the driving ;D ;D huh ???

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 25^th, 2003, 10:04pm

My little sister has to take a lot of nasty stuff. She has advanced Chrone's . being dignosed at the age ( 9) She gets terrible side effect from the 22 pills she has to take everyday to help her. I knew she took a lot of stuff but now In away Im thankful to only have to deal the petty stuff compared to her. I really dont know how she's coped all these years with stomach torcher and l aggony. I guess if I have to have some side effects to releave or prevent the brain grippers.. so be it.

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 25^th, 2003, 10:07pm

my kid will help> he never forgets anything. especially at the wrong improper times....he'll have a field day with mom.

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 25^th, 2003, 10:28pm

Billy, they havent given me any abortives. I wonder about the next step the neuro and the MD will do next. As far as I can gather at the moment hes tring to do this as a preventive. I did beta blockers . are they almost the same as this channel blocker?

Title: Re: Has anyone tried topamax?
Post by BillyJ. on Aug 26^th, 2003, 12:57am

Karen,
First let me repeat I am not a doctor,just another
sufferer that has done a LOT of reading,and tried many
differant meds.
I would say that NO beta blockers and calcium channel
blockers are NOT even close to the same thing.They may
both be used as a blood pressure med but I believe the
mechanisms of action are differant,therefor the effect that
they have on clusters is differant.I can tell you fer sure
that Verapamil at 960mlg/day will controll clusters almost
100% for ME.
100% oxygen w/non-rebreather mask at 10-15 lpm
is the only abortive that I use.It has not failed me yet!
(knock on wood)But,it does not work for everyone.
You need to be agressive with you're docs,don't be
afraid to ask questions,make suggestions and requests.
Of course other health issues must be taken into account
when prescribing meds,but don't be afraid to ask the
hows and whys after all they do work for you!Not ALL
neuros are HA specialists so you may have to shop
around.
PF2All,
Billy

Title: Re: Has anyone tried topamax?
Post by athos12 on Aug 26^th, 2003, 1:08am

Topamaz was by far the worst thing that I have been on outside of imitrex (which makes me stop breathing)... Topax increased my CH from 1 cycle a week to cycle(s) everyday and put into the deepest dark depression that I have ever been in, sucidal the whole bit... I was on it for 3 months.. Once off I was back to normal...

I hope that it helps some people, it was a nightmare for me. I even broke down crying in my office from the depression.. Screwd up my life big time.

Title: Re: Has anyone tried topamax?
Post by UnsolvedEquation on Aug 26^th, 2003, 5:02am

damn Billy thats alot of Verapamil. When I was up to 400 mg/day ... it about killed me. (slowed down my heart rate to almost nothing ).

Title: Re: Has anyone tried topamax?
Post by Miss_Deleny on Aug 26^th, 2003, 7:38am

Prense, my fiance', was on Topamax for a "little" while. Doc put him on it to control the HA's but didn't advance the dosage slowly like everything we read advises .. instead, he had him up to 300mg in about 3 weeks. Everything we have read said that you should advance the dosage slowly to when you hit your 6th week, you would be taking 100mg daily.

Anyway, the side effects were TERRIBLE! Not only did he have trouble remembering things, his speach was impaired to the point that he sounded like he was drunk or drugged up all the time. He was constantly tired and when he was not at work, he was sleeping or fighting sleep. We had to make a deal between eachother, he would NOT go to bed before 8pm ... he was coming home at 4 and ready for bed at 4:30. He had trouble with his hands and feet going to sleep .. not the sleep that "normal" people know, like if you sit on your foot too long and it goes to sleep and you move it around a while, it wakes up ... his would stay alseep for hours at a time. He said that things didn't taste right. And his moods changed too.

Needless to say, he fired his Nero and was "slowly" taken off the Topamax. I was so glad to "have him back" when the meds got low enough that the side effects let his "normal" self come back out to play!

Now, this was only HIS experience with Topamax, that does not mean that it doesn't work for CH on others.

He has made a few posted about his experience with Topamax in the med section. I tried looking for them but couldn't find them. *I don't go to that section very often to know where he posted his comments*

~April~

Title: Re: Has anyone tried topamax?
Post by don on Aug 26^th, 2003, 8:10am

Quote:

Let me see. Im gonna get what ..
FAT, BRAIN FARTS , BALD SPOTS AND STONED

Topomax ( Symptoms or Effects )

Common: Anxiety, depression, sedation, speech problems, double vision, abnormalities in vision, decreased appetite, impaired cognition, memory impairment, dizziness, impaired muscular coordination, tingling in the extremities, an unsteady gait, nausea, respiratory infections, or weight loss.

Rare: Weight gain.

See physician always: Anxiety, depression, sedation, speech problems, double vision, abnormalities in vision, decreased appetite, impaired cognition, memory impairment, dizziness, impaired muscular coordination, tingling in the extremities, an unsteady gait, nausea, respiratory infections, weight gain, or weight loss.

Don't worry, with the "memory lose" you'll forget the whole episode.

Feel better now?

Title: Re: Has anyone tried topamax?
Post by stuey on Aug 26^th, 2003, 8:22am

Wow those side effects look exciting can't wait to start it. My headache specialist wants my epilepsy specialist to put me on it. Looks like I have lots to look forward to. I hope I pass on some of the side effects, I just want to stop the seizures. I try not to look at side effects when possible because then you start to worry. if you do you're liable to not take anything. Stuey

Title: Re: Has anyone tried topamax?
Post by hopefull on Aug 26^th, 2003, 9:52am

Ya the drug companys have to cover their collective asses...by putting any and everything on the warning...it's enough to scare the @#$% out of you!...

Title: Re: Has anyone tried topamax?
Post by athos12 on Aug 26^th, 2003, 12:13pm

I usually don't pay much head to the side effects warnings, but whoaaaaaa!! Topamax was a doosy

Title: Re: Has anyone tried topamax?
Post by scottie40 on Aug 26^th, 2003, 3:12pm

Ive taken prednisone and topamax tell ya what the first few days you will get you house cleaned the prednisone is like taking speed, one down fall is the MOON FACE :( your face swells up for a few days but it stop my CH in there tracks. As for the Topamax i took it for two months and never noticed any side affects. Good Luck hope they work for you ive been CH free for 3 months now.

Scott

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 26^th, 2003, 7:23pm

Hey , I told a couple other today I went to the neuro .My regular Dr. said that I had CH. but the neuro thinks different ... I have chronic pain 24 hrs a day 7 days a week. My face goes numb ansd Im so sick to my stomach. a family history of brain anurisms(father's side ) My Uncle died in early 40's... not sure what dignose I am yet. but for the time being to be on the prednisone and the topamax.... I go back In 4 weeks and then after that lots of test and brain scans...My stomach Is upset thinking about what if they find something else? or wrong. this really scares the freakin POOH outta me. I could leave streaks man !!!

Title: Re: Has anyone tried topamax?
Post by nancyc on Aug 27^th, 2003, 12:34am

I have been on topamax for awhile now along with other medications and would be glad to talk to you about my experiences..feel free to email me anytime...smiles,nancyc

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 27^th, 2003, 6:21pm

I just wanted to say thank you for all your help and support,

Today I started the meds today . tatatatatat-da what what was I saying...Oh ! I forgot already! haha.Does my head look fat from the prednisone ? as far as the topamax,(ONLY THE FIRST DAY)
Wasnt that bad, so far. I feel like I've I'm a little on the slow side and a little dizzy.we'll see what happens by the end of the week after i get this really good into my system. the pain has chilled out a bit. only a slight pressure now. Yeah! ;D ;D ;D makes me feel mellow !
Happy
thanks again Ya'll...

..

Title: Re: Has anyone tried topamax?
Post by Carla_Comiter on Aug 28^th, 2003, 1:31am

I took Topamax a couple of years ago to prevent migraines. It seemed to work, but I quit taking it because of the side effects. At first, I just felt dopey, maybe like walking thru knee-deep water.

Then it hit my language centers (typical side effect). I couldn't spell--confirming my theory that spelling is genetic, couldn't remember words, and worst of all, couldn't recognize people. Often people would greet me by name, and I didn't remember ever seeing them before. I felt like I was on day pass from the asylum.

It did have a positive mood enhancing effect that I rather enjoyed, but I didn't realize that it was from the drug, I just thought I was having a mystical breakthru.

I didn't lose any weight (drats!)

When I quit taking it, I boomeranged into a deep depression. Also, I missed the altered state of spirituality--but not enough to try it again!!

I incremented the dose up to 100MG/day and back down by 25/MG every few days.

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 28^th, 2003, 12:18pm

to all the topamax users and ex-users...Thanks!
your right on the speech thing and the little forget me nots. I find my self studdering and jetting stuck on words and getting fustrated becauce I cant think of the word I want to say. I repeat a lot now . I called the neuro ans he siad it wsa normal to have these effects.I wont tell him but im only going to take the 25 mgs instead of the full amount . I dont like the feel and lack of not being able to concentrate welll.I find it really hard to type this note to everyone. I got the hot flashes ans feell thirsty all the time. freaky stuff. It wasnt bad yestreday but today im slow.

Title: Re: Has anyone tried topamax?
Post by ZAIRA on Aug 28^th, 2003, 12:50pm

on 08/25/03 at 19:25:53, STABBINGPAIN wrote:

Hello Karen, I used TOPAMAX 5 yrs. ago but I’ll never use it again because I had many side effects, for me it is a bad med.

PFDAN and all the best from Italy, Zaira :-*

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 28^th, 2003, 1:09pm

hi zaira
U r right this stuff can be vrey dangerous. very scarry. I find myself being slow . I went to make tea and left the burner on till i smelled it burning. I called my husband crying told him what idid . I think Jewel is right too and doc's should tell you everything to expect before you take any drug .what's its effects are and how it reacts to the body. neuro said today ist normal to feel that way.

Title: Re: Has anyone tried topamax?
Post by ZAIRA on Aug 28^th, 2003, 3:02pm

:'( Oh I understand you... using Topamax I couldn’t remember all the things, and I had many faintings.
My neuro told me that the cause of this can be attributed to Topamax, reducing it the problems are totally away. Anyway, you are right >:(, doctors do not inform you about side effects... :-X :'(

PFDAN always, Zaira

Title: Re: Has anyone tried topamax?
Post by STABBINGPAIN on Aug 28^th, 2003, 3:18pm

my question is this...if they prescribe the meds and we take the meds as directed and something happens like an accident.. is he liable the Doctors ? My goodness the effect this pill has on the brain and the way it makes you forgetful. "normal my back side" im physically challenged at the moment tring to think of what to stinkin type. besides listening to myself sounding like porky pig .I wonder how any people get over medicated ? I have to have my wisdom teeth removed the next week in a half. what am I going to do then? these pills and then ontop of them pain killers? I dont know about all of this. i better do something before I go to the dentist and find out for sure . any suggestions?