Seeing my neurologist today

[Buddy's owner]

My appointment is at 9.00. He will make the finsl decision on whether to take me off tegretol completely. I think he'll take me off it. I want to know if I've got epilepsy still but I don't want to have a seizure if thar makes any sense.

 

[N Sperlo]

That makes complete sense. I wanted to know that once and took myself off my medication. The result was not good, but I didn't follow the doctors suggestions.

Best of luck.

 

[Buddy's owner]

That makes complete sense. I wanted to know that once and took myself off my medication. The result was not good, but I didn't follow the doctors suggestions.

Best of luck.

One of those situations isn't it, you want to know but at the same tie you don't fancy having a seizure. My neurologist said lower the dose to 100 at night for six weeks then come off it. He discharged me but I think he should have kept me on just in case. I asked him about walking the dog on my own he said for the first month havesebody with me. He pointed out my dog is a great thing to have a round so I said it is apart from he isn't a trained seizure alert dog but he has picked up on stuff I can't see before. He's always around me.

 

[daviscy60]

I took myself off meds once. It lasted somewhere around 2 years then back on. I always have this problem I think because of the not knowing what actually causes them... I start feeling good, no seizures, unless small ones and I'm not aware that they are there. So, I start to think I really don't need this... Maybe if I were like some who actually have found the cause or who really have a hard time controlling them, it would be easier for me to say I need meds. Don't know why it seems like I'm always in denial.... Stubborn, I guess.

 

[Buddy's owner]

I took myself off meds once. It lasted somewhere around 2 years then back on. I always have this problem I think because of the not knowing what actually causes them... I start feeling good, no seizures, unless small ones and I'm not aware that they are there. So, I start to think I really don't need this... Maybe if I were like some who actually have found the cause or who really have a hard time controlling them, it would be easier for me to say I need meds. Don't know why it seems like I'm always in denial.... Stubborn, I guess.

My seizures are never small, only tonic clonics with me. Had one on my bike once landed on the road, bad place to have a seizure.

 

[daviscy60]

My seizures are never small, only tonic clonics with me. Had one on my bike once landed on the road, bad place to have a seizure.

Mine I guess started as CPs. Alone did not know what happened. Would picky self up off floor. Then finally had full blown grand mal or I guess what they now call TC in my sleep. Spouse took me to ER. This was about 30 years ago. Started on Dilantin 300 mg/day. This is what I took myself off of but after a couple of years it happened again. I have had TC wali g on treadmill. Also working too many hours without sleep had TC hit head on a cabinet ended up with staples in head. Shower had stiches. You would think this would be convincing. Had EEG July 1st and hac tonic seizure during EEG. Neuro says I have "well substantiated seizure disorder. It is pretty well controlled with meds. I guess I just start feeling normal again... Hate side effects from meds and I start all over again with maybe I really don't need this. Seems like they would at least be able to tell what is causing it.

 

[N Sperlo]

Seems like they would at least be able to tell what is causing it.

I've never had a T/C seizure outside of sleep, but same story. They don't know and there is no attempting to find out. I'm just fine taking the meds. I'm a little tired from them, but I get by just fine. Need more sleep than most people.

 

[Buddy's owner]

While I'm on medication I won't have seizures it's when I'm off it we need to watch. A 5 minute warning would be great rather then the flashing lights I get 2 seconds before a seizure. Yes I get an aura 2 seconds before, not good enough. I've a tonic clonic at a sewing machine once in school. I said to my neurologist today epilepsy I's so predictable, not he said your right it I's unpredictable. Don't you wish you could just wave a magic wand and tell epilepsy to clear off. Unpredictable thing it I's.

 

[Nakamova]

How;d it go at the neurologist's? What did he say about the tegretol?

 

[qtowngirl]

I want to know if I've got epilepsy still but I don't want to have a seizure if thar makes any sense.

hmmmm. onder:

i get the sick of being on pills thing but not sure re: you wanting to know if you 'still' have epilepsy.
regardless of any seizure medication/triggers/what type of szs one has, including having brain surgery... epilepsy is incurable. if one goes 20 years without a seizure (having even 10 years is rare), or has brain surgery, they are not 'cured' of epilepsy. the reason for this is that it ALWAYS has the ability to come back.

take it how you will but the others who responded have made the obvious point, that even if you go off meds and go quite some time without seizing, more than likely they come back.
my neurosurgeon has recently treated someone who came back after 25-years seizure free. that's a big chunk of life (would be amazing) but very rare. he put me in a post-surgery category of 'likely to have a completely seizure-free life' however that doesn't mean i 'don't have epilepsy anymore.'

best of luck going off the tegretol and being okay, keep us posted.