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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> Re: Looking for Topamax tips
        
(Message started by: jadedgazer on Jan 11^th, 2004, 7:19pm)

Title: Re: Looking for Topamax tips
Post by jadedgazer on Jan 11^th, 2004, 7:19pm

henzey,

I took topomax for over a year. Gradually working up to 400mg daily(200mg twice daily). I can say that in my experience, my body eventually adjusted to the meds over time and some of the side effects subsided. However, in my case I became used to the ditzy feeling that never left and compensated for it by making thorough lists and such. This way I would be less likely to forget things. I own my own business and am a full time student, and a mother of three teens...so I empathize with your situation. It can be frustrating, but if it is easing the pain, you kind of have to weigh the side effects and managing those with the relief and make your own decisions about the drug itself.

I did find, that for me, the dose of 400mg daily was a little too much and since it was not working for me any longer, I asked to be taken off it. I am now taking 50mg twice daily and find that I am back mentally.

Just MHO.
Jackie S

Title: Re: Looking for Topamax tips
Post by chronic_chic on Jan 11^th, 2004, 7:37pm

Hi henzey,

Like Jackie, I've also been on topamax a long time. I worked up to 375mgs of it. After experiencing the severe cognitive side effects of it, I was backed off to 100mgs at night, and I still am not very clear all of the time. I was on concerta for awhile to treat attention deficit disorder, and that helped me deal with the side effects of the topamax, but I went off that back in June. I am going off the topamax altogether on the 21st because I, personally, don't find that it benefits me much. However, like Jackie said....you always have to weigh the benefits and side effects. If the side effects continue to be bothersome, you can always decide to dump it at anytime. You don't have to wait for over a year like us. ;)

~Lizz

Title: Re: Looking for Topamax tips
Post by henzey on Jan 11^th, 2004, 11:02pm

Thanks for your info....not sure I will continue with this preventative next episode given that low levels are causing such disruption in my mental faculties and appetite. Hopefully I can find something less disruptive. I am seriously thinking about trying the shrooms next time around...seem to be much less of a problem than the various meds and melatonin does not seem to work for me.

Title: Re: Looking for Topamax tips
Post by HypnoticFreddy on Jan 12^th, 2004, 10:55am

Hoenstly, I am not trying to sound like superman. I never had any side effects from Topamax. Never had side-effects from Neurontin, Lamictal, and a host of other anti-epileptics. I feel bad for you people. Can you take an aspirin and not feel dizzy?

a very hypnotic Freddy

Title: Re: Looking for Topamax tips
Post by jadedgazer on Jan 13^th, 2004, 12:28pm

henzey,

If the topomax has been effective for you but you don't like the side effects, you might look into one of the other anti-siezure meds...i.e. Tegretol or Lamictal. I am on Lamictal now(100mg twice daily), in addition to the 50mg twice daily of topomax, and I find that the Lamictal has none of the cognitive side-effects that topomax had, for me that is...remember everyone is different. Just a thought for you. Good luck.

On a side note:
HypnoticFreddy,

I am so happy that you are so very tolerant to the stronger drugs. Please be a little kinder to those of us who aren't. We realize that we aren't made of the sturdy stuff that you are, but we are just mere humans.

Title: Re: Looking for Topamax tips
Post by CJohnson on Jan 13^th, 2004, 1:37pm

I thought I was not having side effects from topamax until I was playing some DVD trivia game where they show movie scenes on the TV and you have to guess the movie or the actor based on the clip it shows. Holy mackerel, it could have been my favorite actor in my favorite movie and I wouldn't have been able to put a name to a face to save lives. Fortunately, I seem to be fine now, also headache free.

PFDANs
-Curtis

Title: Re: Looking for Topamax tips
Post by chronic_chic on Jan 13^th, 2004, 6:50pm

Here's how I found out about the topamax cognitive side effects:

I'm a piano performance major and I was in the middle of a scholarship competition at Penn State playing a 25 page Chopin Scherzo. My memory is like a steel trap, and I've never had a major memory slip in performance before. Well about halfway through I blanked on the piece....I got stuck and played the same passage 5 times over till I got out of it and the rest of the piece...I banged away at it and left the stage in tears. My teacher was like...what the hell?! I had never been like that! I honestly thought it was just a serious case of performance anxiety...but then the whole rest of the semester I couldn't play memorized. For my final jury, my best frined sat backstage with my music just in case. This was approved by the piano faculty. Then I started getting 0's on physics quizzes when I had been getting 100's...and I got a 60% on the final just because I was drawing total blanks on info.
When I described it to the docs a few months later...they told me it wasn't me...it was topamax. I was like..HOly $a;liefj! That's when I backed off it big time....

Memory is back :)

Also, again in agreement with Jackie...I don't get severe side effects with every med, but Freddy...man...everybody's different! Topamax is a tough one for a lot of people, but I'm glad it didn't bother you. Just please don't berate people because they get side effects from meds! Not like a person can help it... :P

Title: Re: Looking for Topamax tips
Post by henzey on Jan 13^th, 2004, 10:17pm

Hynotic Freddie: I actually am usually fairly tolerant of most drugs....in fact, my pharmacist often laughs about how many things I've taken without a bad reaction. But, there was just something about the Topamax that interacted badly with me. They think now that it may have been that I turned out to be have a high level of iron (that may have triggered this odd winter episode), which can cause nausea, dizziness, etc....many of the same side effects of a bad reaction to Topamax. It also turns out that this bad reaction has a much higher incidence rate in WOMEN than men...especially women over 40. So, I am slowly getting off the Topamax since my episode appears to be winding down anyway. I do appreciate everyone's input

Title: Re: Looking for Topamax tips
Post by toader on Jan 13^th, 2004, 10:39pm

Here's a DOPEYMAX TIP

I'm a computer security guy. Or at least I was until CH found me 2 months ago. And now I have discovered the wonderful world of DOPEYMAX. It's great stuf. Don't remember root password to my servers no more. Don't remember how to fix broken networks no more. Don't remember how to hack, crack - heck I can barely even TYPE now.

One AWESOME thing about DOPEYMAX though. I found one thing I can do real good. I can read Garfield real good. And it's real funny. Way funnier than before. And I'm not even on shrooms. So I read Garfield to my little girl and we laugh and laugh and laugh. Quality time - like we never had.

Title: Re: Looking for Topamax tips
Post by MadMan on Jan 16^th, 2004, 10:57am

I overcame most of the side effects of Topomax after about 2 weeks.
I still notice some memory lapse, on occation.
But my biggest "sides" that are still with me are loss of weight and (the wife really loves this one) my lovely disposition, NOT!
Topomax has really brought on a personality change. About mid-November I ran out of my prescription and didn't get to the pharmacy right away. One thing lead to another and the next thing I knew it had been days since I had had my Topo.
Well I figured, the "beast" was gone. And indeed he stayed at bay for just over a month. The wife said that that month with me Topomax free was like being married to a different man. You know a fun guy.
But alas the beast came back and the "fun guy" had to leave.
I really, really hate the Beast.

- James

Title: Re: Looking for Topamax tips
Post by Edski_1 on Jan 16^th, 2004, 11:20am

Interesting...Madman, I've been on for about 9 days now, and notice a very nice change in the pain, but my wife notices the cahnge in the personality. I seem to be overcoming the dopeyness, but there are still some moments...

toader, I too worked in IT, untill about 10 AM this morning. But I don't think the meds had anything to do with me losing my jobs as the bass-turds just seemed to think after 6 years I was expendable in one of their capricious downsizings... ::)

BTW, the tingling can be overcome with a potassim supplement. I'm taking 1 90 mg a day, 2 might work a bit better, but I only rarely feel it, and even then it could be only because it's chilly (for Florida! :P)

Title: Re: Looking for Topamax tips
Post by Tiannia on Jan 16^th, 2004, 12:48pm

OMG, I just got a script for topomax and you all are making me not really want to get it filled.

Personality changes, in my line of work can be very very bad. What all are you refering to as far as personality changes. I am assuming that the changes cant be any worse the me snapping peoples heads off cause I am in pain and havig very littler tolerance for anything with my kids cause I know that it is almost 3pm and a HA will be coming.

Could you all be a little more specific?

Tiannia

Title: Re: Looking for Topamax tips
Post by Edski_1 on Jan 16^th, 2004, 1:25pm

9 days is hardly a justifiable sample...but I myself feel "normal" enough, by and large. Any sode effects are outweighed byt he tremendous reduction in pain! :)

Little things...I occasionally do feel like I can think of a simple word...but it's fleeting and not as common as it was the first few days. When up to 100 mg I expect I'll have a couple of days of "el dopa"...I'm an ametuer musician...Wednesday night at rehearsal I had a few space out moments...couldn't hear my guitar for a spell and thought it was a connection-trouble was everyone else heard my randomizings...could have been rock'n'roll ear, some odd standing wave that set up precisely where I was standing, or the "dopamax"....If I drink a beer, it tastes really odd, and gives me a buzz far more than one beer should...but not a headache...I CAN DRINK IT...so that's good (I guess, though it really doesn't taste like much any more-neither does anything carbonated for that matter...)

I'll have to ask my wife to give some specifics about the personality changes, if she can after so short a time. And again, today I have a life changing event super-imposed on things.

But give this stuff a chance. Some seem to have a bad time with it, but some report good things. So far I'm relatively impressed. Yesterday was basically the first really PF day in about 3 months...now today I've had a pretty persistent K2...again, not sure if the stress of getting canned from a job you've dedicated 6 years of your life to isn't causing that... >:(

Title: Re: Looking for Topamax tips
Post by Prense on Jan 16^th, 2004, 2:08pm

on 01/16/04 at 12:48:09, Tiannia wrote:

Personality changes, in my line of work can be very very bad. What all are you refering to as far as personality changes. I am assuming that the changes cant be any worse the me snapping peoples heads off cause I am in pain and havig very littler tolerance for anything with my kids cause I know that it is almost 3pm and a HA will be coming.

Tiannia,

The personality changes I experienced were that I became much more laid back, and somewhat child like. I made jokes about anything... I laughed at things that just were not funny.

Chris

Title: Re: Looking for Topamax tips
Post by toader on Jan 17^th, 2004, 10:54am

Awww, come on Tiannia - join the party!!

sing it with me ....
gotta find another paw print
cuz that's the next clue
put it in our notebook
cuz it's who's clues?
Blues Clues?!!!!

[smiley=laugh.gif] [smiley=laugh.gif]

Title: Re: Looking for Topamax tips
Post by Edski_1 on Jan 17^th, 2004, 1:57pm

found this on a site called "future-drugs.com"

http://www.future-drugs.com/Iparticle.asp?publicationid=4&articleid=286

******

Topiramate

Topiramate is a newer antiepileptic that maybe efficacious in both migraine and cluster headache prevention. In a recent open-label study by Wheeler et al., ten patients were treated with topiramate [24]. Cluster remission occurred within 1 day to 3 weeks with a mean time to remission of 1.4 weeks. All patients who were able to tolerate topiramate responded. The average topiramate dose utilized was 77 mg/day. Of note, this appears to be less than that needed to treat migraine. Lainez et al. treated 21 patients with topiramate up to 200 mg per day [25]. 11 patients had complete remission within 1-27 days (mean 14 days), while another five patients had more than 50% reduction in number of attacks. Topiramate was effective in both episodic and chronic cluster and some patients had remission after the first day of therapy.

Topiramate should be initiated at a dose of 25 mg per day and increased in 25-mg increments every 5 days up to 75 mg. The patient should be monitored at this dose for several weeks before deciding if the dose needs to be increased. Dosages up to 400 mg have been needed in some cluster patients. Anecdotally, there appears to be a therapeutic window for topiramate in cluster. Some patients have experienced worsening of attacks when the dose is raised above a certain limit and improvement again when the dose is lowered back down.

Title: Re: Looking for Topamax tips
Post by brad267 on Jan 18^th, 2004, 11:44am

I just couldn't handle Topomax. Among all the wonderful side effects that y'all mentioned, my favorite was giving a speech at a meeting at work -- opening my mouth -- and literally stuttering out incomplete syllables, forgetting works, and looking like an ass.

My Neuro put me on Zonegran and Gabitril -- both anti epileptic drugs in the category as topomax, instead of Topomax, and I love it. Within 2 days, I was back to normal, but the beast still stayed away!!

I hope others can switch over too.
Brad

Title: Re: Looking for Topamax tips
Post by jadedgazer on Jan 18^th, 2004, 12:14pm

I never noticed a personality change other than the frustration of forgetting things. My family never mentioned any personality change either. Just laughed sometimes when I was really dingy. It was difficult to continue with college courses and continue with our business, but making lists and working diligently to keep up with the lists made life a little smoother. At least that is what worked in my case.

Over time I suppose I just learned new ways to adapt to what was going on and functioned within my limitations.

Just my two cents.

Title: Re: Looking for Topamax tips
Post by henzey on Jan 20^th, 2004, 9:45pm

Brad, I really appreciate your comments on other anti-seizure options. I think that my current episode is at least winding down, but I will suggest the other options you mentioned in your posting. The Topamax did work for me at 50 mg a day but side effects never went away and I was not able to function at work.

Title: Re: Looking for Topamax tips
Post by toader on Jan 20^th, 2004, 11:09pm

Just visited my neuro *again* today to see about other options besides topomax.

She calmly explained the following choices available to me:

A) Cluster Headaches
B) Meds I'm on including Dopeymax

Hmmm... real toughy, but I choose drugs. The doc said Dopeymax is the the most effective and wouldn't consider anything else. She said the effects of Dopeymax should fade with time.

As an added bonus, I was very pleased to find the receptionist desk had a nice jar full of Dum-Dums. I chose the Mystery flavor. The nurse said she thought it was cotton candy.

Title: Re: Looking for Topamax tips
Post by Edski_1 on Jan 21^st, 2004, 6:07am

Morning Toader...

Can't remeber how long you've been on "el Dopa" but if it's not significantly helping you at 200 mg I wonder how much it will help. From what I'm reading, and what I'm experiencing , if it helps it should do so quickly, and certainly at the dose you're getting...200 mg a day, right? Not being too experienced at the meds gme here I can only offer hope that you find relief soon.

BTW, splitting my dose yesterday was great! Feel great today, 5 of 6 days with no pain to speak of, and no rel side effects to speak of. Got music rehersal tonight, so we'll see if I space out any! :)

Title: Re: Looking for Topamax tips
Post by toader on Jan 21^st, 2004, 10:00am

Mornin Edski

After I got hit with the beast, I couldn't function at all for 5 weeks. My wife had to take time off of work to take care of me. I was a babbling, sobbing, shivering stark raving lunatic.

Not sure, but I think I've been on this dose of 200mg for almost a month now. Don't get me wrong, the meds certainly are helping with the headaches, but it's still a days to day struggle. Some days are better than others. I still have to take my little buddy R2O2 with me whereever I go. Todays forecast: shadow with flames.

I used to be the hare. My mind and my life went really fast. Now I'm the tortise. I'm just going to have to learn to deal with .... going .... really .... slow.....

Take Care

Title: Re: Looking for Topamax tips
Post by Tiannia on Jan 21^st, 2004, 10:46am

Well guys I started my Topamax trail last night. I am prescribed 25 mg each night for one week, then up it to 50 mg each night until I see the doc again on the 12th od Feb. By then they are supposed to have the neuro referal done, (So I keep bugging them about every 3 days in hopes that it will happen) and the approval for the stripping of my occipital nerve done so that I can do that. With the tpomax, inderal 80 mg at night and the occipital nerve maybe my life will get back to some semblance of order.

I guess I dont see how being dingy with topomax will be that bad of a thing considering, when I am being hit, I cant think straight at all. All I can do it stammer out words and hope that they make sense. It hurts so bad and if I am at work, all I am trying to do is finish up what I am currently working on and move on to a place that is by myself until it stops. I think that I freak myself out more and that it is not the ch that makes it so that I cant talk, but that I want to make it seem like nothing is wrong and I want to seem normal while I am gettng hit so it makes it that much worse.

Sorry I think that I am rambling today.

Tiannia

ps: my kids will love it is I could learn how to relax some and play. I am one of those people who never played as a kid and I dont know how to do it with my kids now. So maybe the topomax will make my relationship better with them.

Title: Re: Looking for Topamax tips
Post by forgetfulnot on Jan 21^st, 2004, 2:47pm

Thanks for the link Edski, http://www.future-drugs.com/Iparticle.asp?publicationid=4&articleid=286

One of the best articals I'v seen on CH.

Lee