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BAHAMAS · 08-11-2002, 07:09 AM

Hi I am presently in the middle of

switching medications from Dilantin to Topamax .

I have been taking Dilantin for approx. 30 years , on

& off ,

My Dr. said that it may make my

ATAXIA worse . To date Topamax has worse side

effects than Dilantin ( although to be fair

I am taking both … going off the Dilantin & onto

Topamax ).

As none of the Drs. I have seen over the years can

help me Traditionally I am considering

Other possibilities , at the moment it’s

vitamin/mineral therapy , either on its own or with

A small amount of medication . I have Grand Mal

Epilepsy – with no warning before a seizure .

I will give you some figures & ask if anybody out

there who is either taking Topamax OR if you are a

Dr. & prescribe it to a patient , if you can

please give me some feedback on others

who may be a little like me .

I AM AN 180 lb / 80 kg MALE – 5’ 11” TALL

CEREBELLER ATROPHIE / MILD ATAXIA

TOPAMAX – Dosages & frequencies for the above figures

would also be good to know .

“Any kind” of information on anything I mentioned –

would be of great help & interest &

Very appreciated

Thankyou Craig

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[This message has been edited by BAHAMAS (edited 08-11-2002).]

Piano · 08-12-2002, 01:10 AM

Research older posts on this forum--I've had bad experiences and they are documented here.

Piano

08-14-2002, 05:55 PM

I used to take Topamax. I currently take Lamictal & Tegretol. I was having a lot of side effects with Topamax. I was always losing my balance & getting dizzy. I was always shaking. The main side effect from it that was bothering me was that my eye sight was getting a lot worse! In a years' time; my eyes was 3 times worse than it had been. When I went to my eye dr.; he asked me what medication I wa on. I told him. When I mentioned Topamax he stopped me in mid sentence. He told me that's definately why my eyes got worse. I hope Topamax works good for you!

May God bless you!,
Rose

BAHAMAS · 08-14-2002, 10:04 PM

Please tell me that the side effects from Topamax is

reversible , after you stop taking the drug ???

How about Dilantin ... are they reversible ???

Thanks Craig

------------------

Pie™ · 12-06-2003, 07:09 PM

Quote:

Originally Posted by BAHAMAS

Hi I am presently in the middle of

switching medications from Dilantin to Topamax .

I have been taking Dilantin for approx. 30 years , on

& off ,

My Dr. said that it may make my

ATAXIA worse . To date Topamax has worse side

effects than Dilantin ( although to be fair

I am taking both … going off the Dilantin & onto

Topamax ).

As none of the Drs. I have seen over the years can

help me Traditionally I am considering

Other possibilities , at the moment it’s

vitamin/mineral therapy , either on its own or with

A small amount of medication . I have Grand Mal

Epilepsy – with no warning before a seizure .

I will give you some figures & ask if anybody out

there who is either taking Topamax OR if you are a

Dr. & prescribe it to a patient , if you can

please give me some feedback on others

who may be a little like me .

I AM AN 180 lb / 80 kg MALE – 5’ 11” TALL

CEREBELLER ATROPHIE / MILD ATAXIA

TOPAMAX – Dosages & frequencies for the above figures

would also be good to know .

“Any kind” of information on anything I mentioned –

would be of great help & interest &

Very appreciated

Thankyou Craig

------------------

[This message has been edited by BAHAMAS (edited 08-11-2002).]

I was on topamax for 10 months, starting at 15mg and upping gradually to 100mgs after 2 months.
I had all the side effects that everyone talks about - loss of cognitive skills, tingling, I was really uncontrollably angry for the first 2 weeks - blindly violent for no reason. Most of those went away, the anger only lasted 2 weeks, but the loss of memory and cognitive skills stayed the entire time I was on it. The tingling eventually went away. After 10 months, I started losing my hair. My neurologist told me to immediately go off it, and I did, and 4 weeks later, I started having heart palpations and arrhythmias. Irregular heart beat that after 2 months, haven't stopped. I see my regular doctor on Tuesday to schedule an appt with a cardiologist. My hair has just now started to stop falling out and the dermatologist I saw said it could take 4- 6 months for my hair to stop falling out. And I just recently found out - the loss of cognitive skills and memory - are for a majority - permanent, you will never regain them.
I would not recommend topamax for anyone. The weight loss, I lost 10% of my body weight, and the help I received with moodswings and my migraines is not worth what I'm going through now and / or what permanent damage there may be.

DBG · 12-06-2003, 07:57 PM

Hi Craig. Like others I did not have a good reaction to Topomax. It started with difficulty concentrating. A few days later I literally felt as though I was losing my mind. I went off it immediately. I now take Tegretol XR and Lamictal. The combination for me has the fewest side effects of any that I have been on. I do know that some people actually have done well on it and have seen a reduction in sz activity. Good luck.
Christine

bleubird · 12-11-2003, 04:59 PM

Hi,
I was on Topamax right after I was diagnosed. I was actually on a study for them. It did slow down the amount of seizures I had, but did not stop them for me. I also only have the grand mal seizures. I will say now as with all drugs everyone reacts differently.... In the 16 months I was on Topamax I went down to about 1 seizure a month. I came off the medications when they upped my doseage from 50 mgs. a day to 75mgs. (I wasn't even on any real dosage) but when I went up I started having this tingling through my arms and legs. More like the pins and needle feeling you get when your foot falls asleep and you try to move it. I also started losing my short term memory. My speech was terrible, I couldn't form full sentences.... I couldn't even tie my shoes without really thinking about how too. It was not a good thing for me

Good Luck with it..... I have seen where this works well for others.

crystalw · 01-07-2004, 07:19 AM

Dec 30th the FDA came out with a warning on their website about topamax that it can cause hyperchloremic, non anion gap metabolic acidosis (you can look that up) basically it can affect you in not good ways) How are you anyway. Beside my irregular heart rate that I now have to give the topamax up for ....I did love the drug. It was the best I'd ever had. Oh, well. I could live with the other side effects. I hope my heart comes back around though. Crystal

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