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Topic: Has anyone tried topamax? (Read 636 times) |
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STABBINGPAIN
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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
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hopefull
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Re: Has anyone tried topamax?
« Reply #1 on: Aug 25th, 2003, 8:00pm » |
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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
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FrankF
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Re: Has anyone tried topamax?
« Reply #2 on: Aug 25th, 2003, 8:11pm » |
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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.
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STABBINGPAIN
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Re: Has anyone tried topamax?
« Reply #3 on: Aug 25th, 2003, 8:11pm » |
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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.
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STABBINGPAIN
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Re: Has anyone tried topamax?
« Reply #4 on: Aug 25th, 2003, 8:13pm » |
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I guess I'm in for a brain failer again now memory loss.. great!
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STABBINGPAIN
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Re: Has anyone tried topamax?
« Reply #5 on: Aug 25th, 2003, 8:19pm » |
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not to mention I'm tring to lose weight not gain .YUCKY prednisone fat stuffing puffy making me pill. 
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hopefull
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Re: Has anyone tried topamax?
« Reply #6 on: Aug 25th, 2003, 8:28pm » |
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in the info does it give another name it might go by? like verapamil is calan
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STABBINGPAIN
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Re: Has anyone tried topamax?
« Reply #7 on: Aug 25th, 2003, 8:38pm » |
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topiramate...
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hopefull
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Re: Has anyone tried topamax?
« Reply #8 on: Aug 25th, 2003, 8:42pm » |
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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
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STABBINGPAIN
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Re: Has anyone tried topamax?
« Reply #9 on: Aug 25th, 2003, 8:51pm » |
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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.
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UnsolvedEquation
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Re: Has anyone tried topamax?
« Reply #10 on: Aug 25th, 2003, 8:59pm » |
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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 !
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Karla
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Re: Has anyone tried topamax?
« Reply #11 on: Aug 25th, 2003, 9:01pm » |
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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.
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Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
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STABBINGPAIN
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Re: Has anyone tried topamax?
« Reply #12 on: Aug 25th, 2003, 9:03pm » |
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Let me see. Im gonna get what ..
FAT, BRAIN FARTS , BALD SPOTS AND STONED.
gee . that sounds wonderful.
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UnsolvedEquation
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Re: Has anyone tried topamax?
« Reply #13 on: Aug 25th, 2003, 9:22pm » |
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lol ... yeah, that about sums it all up ;D
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STABBINGPAIN
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Re: Has anyone tried topamax?
« Reply #14 on: Aug 25th, 2003, 9:25pm » |
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Anyone in this for a hit ? I hear it has great effects one ya..
Any takers?
going once........
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STABBINGPAIN
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Re: Has anyone tried topamax?
« Reply #15 on: Aug 25th, 2003, 9:25pm » |
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OOPS! on .....not one
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Lori
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Re: Has anyone tried topamax?
« Reply #16 on: Aug 25th, 2003, 9:31pm » |
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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!
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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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cootie
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sumday I'm gonna be sumbody........ ..
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Re: Has anyone tried topamax?
« Reply #17 on: Aug 25th, 2003, 9:34pm » |
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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)
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| « Last Edit: Aug 25th, 2003, 9:42pm by cootie » |
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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BillyJ.
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Re: Has anyone tried topamax?
« Reply #18 on: Aug 25th, 2003, 9:52pm » |
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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
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STABBINGPAIN
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Re: Has anyone tried topamax?
« Reply #19 on: Aug 25th, 2003, 9:55pm » |
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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.
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UnsolvedEquation
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Re: Has anyone tried topamax?
« Reply #20 on: Aug 25th, 2003, 10:01pm » |
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Quote:| could make working a can opener a job |
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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  huh ???
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STABBINGPAIN
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Re: Has anyone tried topamax?
« Reply #21 on: Aug 25th, 2003, 10:04pm » |
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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.
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STABBINGPAIN
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Re: Has anyone tried topamax?
« Reply #22 on: Aug 25th, 2003, 10:07pm » |
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my kid will help> he never forgets anything. especially at the wrong improper times....he'll have a field day with mom.
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STABBINGPAIN
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Re: Has anyone tried topamax?
« Reply #23 on: Aug 25th, 2003, 10:28pm » |
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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?
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BillyJ.
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Re: Has anyone tried topamax?
« Reply #24 on: Aug 26th, 2003, 12:57am » |
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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
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