Diagnosis question

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Knitting

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I am a 52 year old female who was diagnosed with Simple and Complex Partial Seizures in 2005. I don’t know anyone else who has that same diagnosis. I crashed my car and that’s when I found out I had epilepsy. I was wondering if anyone else has the same diagnosis and if so, how did you find out?

I stopped taking my medication (Tegretol / Carbamazepine) in May 2010 and I don’t know if that was a good idea or not. Has anyone else come off this medication and how has it worked for you?

Any response is greatly appreciated.
 
Hi Knitting, welcome!

I only have tonic-clonics, so other CWE members will need to chime in about your specific seizure disorder. (We do have plenty of members with Simple and Complex Partials.)

Some questions regarding stopping taking the meds:Why did you go off the Tegretol? Were you seizures controlled on it? Did you do go off with your doctor's supervision? How have you felt since you went off of it? Have you had any more seizures? Are they increasing?

Best,
Nakamova
 
Nakamova said:
Some questions regarding stopping taking the meds:Why did you go off the Tegretol? Were you seizures controlled on it? Did you do go off with your doctor's supervision? How have you felt since you went off of it? Have you had any more seizures? Are they increasing?
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I went off Tegretol because I felt that there wasn't any need to take it anymore.

My seizures were controlled, but I felt maybe I was cured.

My doctor did say that when I felt stress-free that maybe I could try going off my medication. I won't be seeing him until May.

I feel great since I went off it. Maybe a little nervous. That's why I want to know if anyone else has done the same thing.

I haven't had any more seizures since I went off it.

Thanks for replying to me.
 
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Welcome to CWE

I've been on tegretol most most life. When I was a teenager I felt I could go without it because my seizures were still pretty frequent but relatively small partials and also felt there was no need for me to take them.

I was fine for 3 days but after that I had my first tonic/clonic (convulsion). I guess that's what it took to show me that yes.... there is a need.

Also, I moved your thread to the foyer so that you can get the official "welcome" here.
 
Congrats! That's terrific that you've been 9-months seizure-free since going off the Tegretol. I understand why you're feeling nervous, but it sounds like you made the right decision.

Sometimes as people age, their seizure threshold increases due to changes in metabolism or hormones, so perhaps that's what's happened with you. Individual seizure histories can be so different that it's hard to know for sure.
 
My daughter is med free and her seizures are controlled by making nutritional changes.
I don't find a seizure occasionally to be a problem. To me it just means that more work needs to be done to fine tune her health issues. When we do this she has gone as long as 8 months. We are working on a longer stretch this time. Certainly far better than when on meds, which only increased seizure activity dramatically. Nutrition has been our answer.
 
That's great you are able to function without meds! Hope it will stay this way and you will never have to go back to taking anything for the seizures again :).

I myself have partial seizures which sometimes get generalized. However, when I am on medication they almost never get generalized and the complex partials I get are short and most of the time I feel completely normal and functional afterwards. So for me meds are a lifesaver but I hope to be able to go off them completely one day as I hate all the side effects.

Anyway, hope you stay seizure-free from now on! Good luck :D
 
carolyn said:
That's great you are able to function without meds! Hope it will stay this way and you will never have to go back to taking anything for the seizures again :).

I myself have partial seizures which sometimes get generalized. However, when I am on medication they almost never get generalized and the complex partials I get are short and most of the time I feel completely normal and functional afterwards. So for me meds are a lifesaver but I hope to be able to go off them completely one day as I hate all the side effects.


Anyway, hope you stay seizure-free from now on! Good luck :D
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Thanks for replying to me. I decided to come off meds because I wasn't getting any partial seizures anymore, so I hope it stays that way. The only time I'm nervous is when I'm driving the car, but I figure the aura will be enough warning for me to stop the car.
Good luck to you too.
 
I crashed my car, too, and that's how I found out I was seizuring. They think mine are absence or partial seizures, though I haven't gotten the official word yet.
 
You're the first person I've heard of who crashed the car too.
Was it just recently the fact that you are not diagnosed yet? Are you taking any medication?
 
Yep, I crashed my car back in December. I had been having 'episodes' for years and years prior, but I just thought these were dizzy spells and nothing more, and doctors weren't taking my other symptoms seriously anyway.

I'd usually get a funny taste in my mouth followed by a dizzy spell. I also had 'spells' where I'd wake up with severe memory loss and confusion, so I must've been having them in my sleep, too.

I am not yet on medication for these seizures...still awaiting the 'official' diagnosis...but both my neighbor and paramedics witnessed the episodes, so I'm feeling pretty confident that whether or not these seizures show up on my 24-hour EEG, my neuro won't leave me hanging without meds.

I can't post links here yet because I'm new, but my thread in the Foyer is titled...

New to Forum - Epilepsy & Lyme? Epilepsy & OCD? (long post)

Did your seizures show up on an EEG? My first EEG showed some 'possible' abnormal spikes, but it was hard to tell because one of my symptoms is this CONSTANT teeth clenching and tightness in my lower jaw, and I guess that messes up the EEG? I just had a 24-hour EEG almost 2 weeks ago; no results yet on that one.
 
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