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Ending Topamax

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Old 11-19-2007, 04:09 AM   #1
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Ending Topamax

I had an EEG done last week and it was decided that I am not having seizures. My doctor has taking me off of Topamax.

I am having a tough time with this. I am dizzy and a bit emotional as well as being bloated.

Anyone have these side effects when ending Topa?

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Old 11-19-2007, 07:35 AM   #2
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life_is_good HB User
Re: Ending Topamax

Need some clarification. So you're coming off of all seizure meds? Just be sure your dr. feels it's absolutely safe for you to do this...I was w/o seizure meds for several years and then suddenly started having seizures again. I now know I have to be on them for life. Have your dr. monitor your EEG frequently for any seizure activity, just to be on the safe side.

Topamax does mess with the emotions, so it's understandable that you're feeling a bit emotional right now. As for the bloating, that would also make sense, as it did control the appetite, so you may put back a few pounds.

Wishing you the best of luck, that's terrific news!

Old 11-19-2007, 08:15 AM   #3
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Re: Ending Topamax

The doctors were never really sure that I was having seizures. I had an EEG come back abnormal and to be on the safe side the put me on meds. Now that the last EEG came back fine they said it was fine to come off. I was only on 25mg of Topamx - not even a dose that would control seizures anyway.

Although I am a bit scared to come off - I have to put my trust in these doctors or I will drive myslef crazy. I am scheduled to go back to the the DRs in 2 months for a follow up.

I am only 10 days being on Zoloft so It very well could be the Zoloft but for 8 days I didn't get dizzy or feel bad. It was only when I came off the Topa.

I just didn't know how long it would take to adjust being off of Topamx.

does anyone know?

Last edited by j2006; 11-19-2007 at 08:16 AM.

Old 11-19-2007, 09:54 AM   #4
Travis from MN
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Re: Ending Topamax

Being it takes about a week for your body to adapt to Topa when starting on it with the 25, I'd guess it may be the same for withdrawing from it. Were you told to just stop it cold? I'd guess with 5-10 days to steady (from the books) it would be the same for our systems to shed it. See how you are after one week.

I have dropped 50mg this year (one pill) with no problems adjusting or in transit.


Old 11-19-2007, 11:00 AM   #5
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Re: Ending Topamax

This helps so much!

Yes I was told to just stop taking it as I was at the lowest dose. I will wait the week and see how I feel after that.

These meds can get confusing - especially since I started the Zoloft and then after 5 days went off Topa.

Thank you so much!

Old 11-19-2007, 01:11 PM   #6
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Re: Ending Topamax

A normal EEG does not mean you don't have seizures, just that no seizure activity was going on during that particular EEG..... is this a neurologist taking you off the meds, or a general practitioner???

Old 11-19-2007, 02:04 PM   #7
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Re: Ending Topamax

It was my neurologist. The second one that has said that It is unlikely that I am having seizures. So I am going to think positive and try not to second guess her decision.

The reason why I got the EEG last summer was because I felt foggy like and I just couldn;t shake it.

When I had the EEG it came back abnormal and they were going to treat it for precuationary measures. He wasn;t sure if I was having them. When I switched doctors she immidietly had a different opinion. Then I had another EEG and It did not come back normal it came back different and she said I wasn't having seizures.

I do suffer from anxiety and panic so this is hard for me to accept. but I am going to try to keep positive.


Old 11-19-2007, 04:28 PM   #8
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Re: Ending Topamax

Hi Jane,

This is the first time I have ever heard of a doctor taking
someone off meds. because they had one normal EEG.
I cannot say it any better than neuro. did. I can tell you
that over the 40 years I have had E. I have had a few normal
EEG test also,but,never did my doctor even think to lower my
meds. more less take me off of it.I know you would love the
thought of being off the meds,but,I would go to another neurologist
and ask his opinion.Good-luck and Take care,Sherri

Old 11-19-2007, 05:25 PM   #9
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Re: Ending Topamax

i have been to three. All say not sure and with this last one they say I am just not having them. I am sure they would keep me on meds if they though I was having seizures. Otherwise they would risk losing their license.

I have had 2 abnormal EEGS but they just don't think I am having them.

i can't keep going to all of these doctors.

I have to put my trust in them.

Old 11-24-2007, 03:10 AM   #10
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Re: Ending Topamax

First off all: it's indeed very important that you have trust in your doctor.
So I'll go with you on that one.

But on the other hand trusting your doctor doesn't mean that you still have a responsibility for your own health. Doctor's can be wrong and in questionable diagnosis for epi, as in your case, there's bound to be some difference in opinion between doctors; with you ending up in the midst of their discussion.

An EEG is an useful tool, but has it's limitations. An EEG can confirm a diagnosis for epi, but never exclude it! An EEG registration is just a moment in your day, one could register a complete normal EEG and have a seizure 5 minutes after coming off the machine.

An EEG registers brainwaves and there are a lot of different brainwave patterns, depending on your state of alertness, consiousness, being awake or sleeping, doing nothing or doing maths etc. If a EEG is abnormal it doesn't have to be epileptic. After head trauma an EEG can be abnormal as well, or just the fact that you use epi meds can cause some non-epileptical abnormalities.

Epileptical abnormalities consist of a very distinct brainwave pattern, but having them does not mean that you have epilepsy. It could just mean you're more susceptable to seizures. If you start to have seizures and they do correlate with epileptic abnormalities in an EEG, than you have epi.

Since catching a seizure on an EEG registration could be like searching for a needle in a haystack, diagnosis is often made on the description of the seizures.

When you have epi, the meds are slowly normalising the epileptical brainwave patterns. So a normal EEG is not a very good reason to quit epi meds, the normal EEG just shows that the meds are doing what they are supposed to do, in a well controlled epi. If the epi isn't under control, the normal EEG doesn't show or proof much, because it can change in a few minutes. What it does show than is that the epileptical waves are not constantly present.

An EEG is a good tool, but has it limitations, any doctor or neurologist knows this. Excluding epi on the basis of an EEG is simply not possible.

In your case the diagnosis wasn't very strong, since you haven't had any real seizure, that you know of. A diagnosis for epi isn't made, normally, untill more than one seizure did occur. One seizure isn't epi, 'cause anyone can get a seizure, when provoked.

I think that your current doctor questioned the original diagnosis and made an EEG to see if there was any epileptic activity, because if there was, that would be a reason to continue the Topa. I can't imagine that he used the EEG as a means of excluding epi. I just think he didn't agree with the original diagnosis.

But.......unfortunatily there's a but in this one! There are people who have to struggle for a diagnosis of epi for years, when their epi isn't showing very clearly. And in the mean while suffering the consequence of having the dissease and not getting treatment, they so desperate need.

I'm not saying that you do have epi, when it is even hard for doctors to get consencus on this one!
But if you do keep having strange episodes, or disturbunces that could be epi, act upon it and seek medical help!

For now, congrats are in order! 'Cause the doctor is saying that you haven't epi!

As for the Topa withdrawel, sorry can't help with that one!

I just hope that I've made clear how difficult a diagnosis for epi can be/is and what the limitations are of a EEG, for the doctor as well as for the patient.

Whishing you a healthy, medfree life!

Old 11-24-2007, 03:48 AM   #11
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Re: Ending Topamax

Thank you for that.

To my knowledge I have never had a seizure. I have had panic attacks. It is when they were going to put me on medication they did the EEG and found it to be abnormal. The doctor put me on medication for seizures as a precautionary measure. I did leave that doctor as he really wasn't very kind.... the next neuro didn't think I had it from the oigianal EEG and then the second one I guess confirmed for her.

I have had the sleeping EEGS and so forth.

I finally came off the Topamax... I was on 25mg not enough to control a seizure I am told.

As you can see I still come on board because as much as I want to trust these doctors I am always afraid - that is my anxiety kicking in-. I never thought I had seizures from the beginning - I just had this strange foggy feeling all the time.

thank you all for the reply and because of that I am going for another opinion.

These docotor's form there own opinion based on the EEGs so I feel that I could keep going to doctors to have them read and possibly still feel that I am being misdiagnosed.

Last edited by j2006; 11-24-2007 at 03:50 AM.

Old 11-27-2007, 09:01 AM   #12
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Re: Ending Topamax

Epileptic here. I have NEVER had an abnormal EEG but I have friends, family and former lovers that can all attest that I've had grand mal seizures as they've fallen witness to it.

I was weaned off Topamax at the rate of 25 mg's every five days. From what I've understood, it takes ten days for it to fully be out of your system. Topamax was hell for me. It made me incapable of holding a normal conversation. When I came off it, it was so bad i had horrible anxiety, ringing in my ears and problems breathing. I am on Keppra now and while I feel much better than I did on Topamax, I still don't feel like I've recovered completely from being on it (I was on it for 2 years).

And in terms of trust in doctors. Forgive me if I offend someone but I'm someone who doesn't have a whole lot of trust in them. I suffered blindness in my left eye as a child and saw more than 10 opthalmologists, none which could give me a diagnosis (one even insinuated that I was faking it). FINALLY, after seeing over ten opthalmologists, I had one who diagnosed me with optic neuritis which is an inflammation of the optic nerve.

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