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        New Message Board Archives >> Oct-Dec 2003 >> Topomax??
        
(Message started by: Jayne on Nov 19^th, 2003, 5:03pm)

Title: Topomax??
Post by Jayne on Nov 19^th, 2003, 5:03pm

Ah well started with my new doctor yesterday. My old doc (the one who has clusters) has stopped practising *boo hoo*
So the new doc put me on topomax as well as my verapamil. she started me on 25mg per day for one week 50mg per day for he second week...up to 100mg per day.
I am a little nervous about what to expect?
Anyone? Good and bad?

Title: Re: Topomax??
Post by Margi on Nov 19^th, 2003, 5:11pm

um, well, Jayne.....might be a good idea to sew your name into your underwear TONIGHT, so if you DO forget your own name, you'll have a reminder handy by.

;)

It sure helped Blake (of Blake and Jackie fame). Here's praying that you'll react the same way he did, my friend!!

Of course, we'll be needing blow by blow details of your progress. Wait. That didn't sound right, did it....

Title: Re: Topomax??
Post by Jayne on Nov 19^th, 2003, 5:14pm

Oh Bloody hell!

Title: Re: Topomax??
Post by Margi on Nov 19^th, 2003, 5:26pm

http://www.deephousepage.com/smilies/kickbut.gif

Try it, Miss Salters. I think that this: (http://www.deephousepage.com/smilies/hypnotized.gif) would be a good look for you.

seriously....lotsa good results with Topomax here, missy. BarbD had good success with it. Joe Stone too. Blake Warrior. All chronic, I believe. Do ramp up slowly though. You'll do fine.

Write to Jackie - she knows the details intimately. Where the heck IS Jackie anyway??

Title: Re: Topomax??
Post by hootchdom on Nov 19^th, 2003, 5:35pm

Jayne,

Been on it since Oct. 10th. Started at 50mg/day been at 150 for the last couple of weeks without any noticable results. Doc just moved me up to 200 mg/day today. Have seen reports as high as 400mg/day. Have not had any adverse affects other than weight loss. Gone from health 210 lbs (6'4" male) to sophmore highschool weight of 185 lbs. Even my wife doesn't like it.

Wouldn't be to scared of it. Seems like a lot of people have had some sucsess with it.

Hootchdom

Title: Re: Topomax??
Post by Jackie on Nov 19^th, 2003, 6:00pm

Hi Jayne,
I'm glad you're going to try the Topomax. It has been a wonder drug for Blake. He hasn't had any bad side effects.....he has lost some weight and says food tastes different. That's a small price to pay for the great results he's having. Oh....he did get a little 'smart mouthed' when he started on it and I had to threaten to whip him..... ;;D...so that side effect went away... ::)
I think the secret to controlling side effects with Topomax is to start low and work up to the dose that stops the headaches. Good luck, Sweetie :-* We're crossing our fingers for ya!!!!!

Love to you,
Jacks 8)

Hi Margi [smiley=wave.gif].....told ya I was lurking..... ;)

Title: Re: Topomax??
Post by Jayne on Nov 19^th, 2003, 6:14pm

Thanks guys
Love Carol...er..Sandy,,no,no that's not it..erm..hang on, hang on I know this one....CLamidia...no no...
aw fuck it..you know my name.

Title: Re: Topomax??
Post by Prense on Nov 19^th, 2003, 8:17pm

You know how Ali looks? That's about what I felt like while being on this med... It affected: speech, tremors, "shock-like" feelings in my arm, feet/hands always falling asleep, staying awake for more than 12 hours in a day was impossible, short-term memory was non-existent... I was on it for 12 days. The taper sounds ok, so hopefully you will not react as I did.

Chris ;;D

Title: Re: Topomax??
Post by Little Deb on Nov 19^th, 2003, 9:07pm

Jayne,
you are comical! [smiley=laugh.gif]
Good luck with the Top.
I see you are in Nashville and just wanted to mention that if you think you could remember how to get back home LOL, [smiley=laugh.gif] maybe you could come here in Jan. for our get together. Raleigh. ;;D ;;D ;;D

LD

Title: Re: Topomax??
Post by BarbaraD on Nov 20^th, 2003, 6:36am

Jayne,

It works different on everyone. I went on it in 1999 and it worked miracles - put me pretty much in remission till lately. If it starts bothering you - take it at night before you go to bed.

I never really had any side effects and I've been up to 400 mg at times. Usually level off at 100mg. Had breakthru headaches, but all it all it was a miracle. Didn't have to take anything else with it.

Weight loss is one of the side effects (oh gee!) and some short term memory loss (so write down things) But I've always taken it at night before I go to bed, so if I had any other side effects they were gone by morning and I slept good.

Hope it works as good for you as it did for me.....

Love ya BD

Title: Re: Topomax??
Post by ZAIRA on Nov 20^th, 2003, 7:58am

I can't help you, for me topomax doesn't work >:(... Good luck Jayne... Zaira :-*

Title: Re: Topomax??
Post by Giovanni on Nov 20^th, 2003, 10:22am

Good luck with this Jayne. My wife called me a Zombie while on it. Maybe you'll be one of those who can tolerate the drug.

:P

Title: Re: Topomax??
Post by nancyc on Nov 20^th, 2003, 11:46am

I am on it, sis..In fact, I am in the process of upping mine at the present....and i definetly have my topamax moments..but is has helped me alot...I just have to get thru the rought times of the memory loss....hang in there and call me if you want to talk...but give it a chance...and that means more than a month trial, sis. OK? Believe me, if it works for you, it is worth every lost memory....smiles,nancyc ps plus i just blame it on being blonde...thanks, Lady Clairol. :)

Title: Re: Topomax??
Post by Karla on Nov 20^th, 2003, 3:29pm

My dr. told me that you needed 200mg to be theraputic and he was a ha specialist. I didn't notice any memory problems until I reached 200mg. I went all the way to 600mg on topamax. So if you don't have any luck at 100mg you may want to suggest to your dr to try upping the dose. I wish you much luck on this medicine. As was mentioned earlier it has helped a few people on the board so it is definetly worth trying.

Title: Re: Topomax??
Post by Jayne on Nov 20^th, 2003, 5:42pm

Thank you ladies and jellybeans!.

Title: Re: Topomax??
Post by Prense on Nov 20^th, 2003, 8:41pm

While the memory loss problem was bothersome...by far, not being able to stay awake and the speech issues were my biggest complaint. No kidding, it would have taken me 4-5 minutes to say what I have written here when I was on this stuff. On the bright side, most of the side effects were not permanent, but they did take a month to all subside. I still seem to be suffering some short-term memory problems...it has been around 5 months.

Good luck Jayne!

Chris

Title: Re: Topomax??
Post by Jayne on Nov 21^st, 2003, 11:10am

Hey there Prense
what dosage were you on when these side affects became noticable to you?
Cheers

Title: Re: Topomax??
Post by Prense on Nov 21^st, 2003, 9:36pm

on 11/21/03 at 11:10:51, Jayne wrote:

Hey there Prense
what dosage were you on when these side affects became noticable to you?
Cheers

Day 3...25 mg

Title: Re: Topomax??
Post by cootie on Nov 21^st, 2003, 10:04pm

Not sure if I'm gonna be of any help here (I'm a supporter don't fergit)... but I read up on topomax sumwhat cuz our new doc had told us it was one of the new meds that was showin good results for CH'rs and to consider it next cycle for Brad. I read it's also called the California drug cuz people take it in mass quantities and loose LOTS of weight then quit......heard workin a toaster can be a challenge when ya do that. But read a few articles sayin it had best results with LESS side effects 'if started out very slowly' no matter how long it takes ta creep up to a dose that works. The trick was not to experience the side effects and start out too high a dose and jus take it slow. Sounds like you may be doin that.......so am hopein it really does work for you ! Hey neurotin made me so messed up I couldnt walk without help or talk well cuz only one sentence would come to mind each hour.....I was a total basket case on one 300mg pill (Brad asked me ta never take it in public again.....soooooooo).....but most say they have NO side effects what so ever. So it only goes ta prove.......everyone is different. Pam that has memory loss by nature

Title: Re: Topomax??
Post by jadedgazer on Nov 22^nd, 2003, 3:14pm

Jayne,

Hi there,

I have been on Topomax for about a year now. It has helped me more than any other drug I have used. It does have side effects. The most noticeable ones to me were leg pain when I was increasing, memory problems & cognitive thinking problems. I lost 78 pounds over the last year, going from a size 24 to a 12. Still losing but much slower.

I am in the process of going off the Topomax now. It isn't working for me anymore and my kidneys are giving me trouble. Another possible side effect, so drink a lot of water. Go up slow on your dosage and the side effects won't be as bad. You will adjust to it over time, and it seemed that it was the best for me at about 200-250 mg per day. I took it twice daily, splitting the dose, i.e. 100mg in the morning and 100mg at night. I finally got to 400mg a day, and was really feeling the side effects at that dose.

Good luck to you!