Finally!!!!

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davidmc

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After almost 14 years, the neurologist I saw today (I've seen him before but it's only on the second and third visits he has listened - the third being this one today) has given me a diagnosis of epilepsy.
 
Congratulations! Now we can show you the secret handshake.
 
Congratulations David,
Although none of us like having epilepsy or any other medical conditions, I am sure it's a relief to finally been given that official diagnosis. I hope the neuros can get your seizures under control.

I can't remember but are you on any AEDs?
 
Not sure of your case but 14 yrs u got to be kidding me glad u got a answer not sure if its the one u wanted but hope they can get yours under control if there not that bad u r a step ahed of me im 14 yrs in and still uncontrolled never get discouraged always think positive
 
Congratulations! Now we can show you the secret handshake.

Thanks. lol

Congratulations David,
Although none of us like having epilepsy or any other medical conditions, I am sure it's a relief to finally been given that official diagnosis. I hope the neuros can get your seizures under control.

I can't remember but are you on any AEDs?

Thanks. Yeah I'm on Topamax, meant to ask about increasing the dosage if I ever got a diagnosis due to the fact I still get auras and the odd partial seizure but forgot. I'm only on a low dose due to the fact that I was only prescribed it for headaches as I had no diagnosis. Oh well need to see my doctor anyway so will ask him to contact the neurologist.

Not sure of your case but 14 yrs u got to be kidding me glad u got a answer not sure if its the one u wanted but hope they can get yours under control if there not that bad u r a step ahed of me im 14 yrs in and still uncontrolled never get discouraged always think positive

For years, they were determined it was heart problems, I had the same tests loads of times and got the same results, normal. Apart from once, but the onces after that were normal so that was due to human error. I ended up refusing them in the end, my dad might have had heart problems but it's been proven that I don't. So that waste of time didn't help with diagnosis.
Then one neurologist decided without doing any tests, which if he had, he would have found there was nothing wrong, that I was not getting enough salt and prescribed sodium tablets.

Then there was my doctor thinking it could be meniere's, got prescribed betahistine think it was called.

The possibility of epilepsy was brought up with the neurologists but got silly answers such as "It's not as you don't lose consciousness..."
"You have too many seizures for it to be epilepsy."


Knowing what's going on is half the battle won!:clap:

Deep down I've known for a while, my girlfriend has too. She's said from the first one she saw me have what it is.
Just needed a diagnosis, now I should be able to get a dose of the AED that works better and have an answer now when someone asks me what it is I suffer from. Sure there was something else I was going to write here but I can't remember what. lol
 
david man im sorry u had to go through all that crap to get a diagnosis they should get u going on a good anti-epileptic-drugs im on topamax along with others its okay but if they dont get ur dosage right i believe its a helper aed helps control when your on another drug thats my experience when i have been on it.have any questions don't hesitate to ask me.
 
The possibility of epilepsy was brought up with the neurologists but got silly answers such as "It's not as you don't lose consciousness..."
"You have too many seizures for it to be epilepsy."

I just got the same xxxx from my neuro late last year.

I remember your struggle, David - I'm glad you finally have something concrete to work with, and hope you have suitable medication soon. Well done for persevering.

cheers
 
I just got the same xxxx from my neuro late last year.

I remember your struggle, David - I'm glad you finally have something concrete to work with, and hope you have suitable medication soon. Well done for persevering.

cheers

Same with me. But alot shorter time period. You aren't thinking right, it's psychogenic and all the nonsense. I'm also glad you got attention David. :)
 
I had to go through the neuro-psyc (sp) test first to make sure I wasn't just nuts. Fooled them! No really, it is a huge weight off your shoulders to finally get the right results. I was going to mention that you have to go through the hazing before you can learn the handshake, but I think the previous 14 years will make up for that :)
 
I'm glad that you FINALLY got an answer. Boy, you went through a lot.

It helps knowing what you are dealing with.

Hoping for the right medic.
 
I finally got an official diagnosis of having a seizure disorder today, like you I had to wait years, after my fourth EEG it finally proved I wasn't nuts, I'm ecstatic, I literally had a neurologist tell me I was making it all up in my head, so many things finally make sense (déjà vu's, myoclonus). I almost cried, my mom doesn't really understand why I'm happy about this, she doesn't understand that it doesn't change anything, I've put up with it a good chunk of my life, it just proves I'm not nuts. Fortunetly it's mild and all the doctor thinks is I need to increase my primidone levels that I already take for Essential Tremor.
 
I finally got an official diagnosis of having a seizure disorder today, like you I had to wait years, after my fourth EEG it finally proved I wasn't nuts, I'm ecstatic, I literally had a neurologist tell me I was making it all up in my head, so many things finally make sense (déjà vu's, myoclonus). I almost cried, my mom doesn't really understand why I'm happy about this, she doesn't understand that it doesn't change anything, I've put up with it a good chunk of my life, it just proves I'm not nuts. Fortunetly it's mild and all the doctor thinks is I need to increase my primidone levels that I already take for Essential Tremor.
Abynormal,
It must be a huge relief to finally get the official diagnosis.
 
Im almost in tears, I almost thought I was crazy, I think I've been dealing with this since I was a kid when I use to get Deja Vu's all of the time, and other strange experiences I couldn't explain.
 
well I am crazy but crazy in a good way, not a Im gonna fake an illness kinda way :)
 
Hurray for a diagnosis! Instant validation and relief but then there is the, oh crap. I really do have to live with this now, don't I?
 
Thanks everyone.
I've noticed I feel hot less and the hyperhidrosis is also decreased (not to dangerous levels though, both are still not normal but a lot better) on the Topamax. Would a higher dose mean this would improve further?
 
Maybe yes, maybe no -- with meds there is often a "sweet spot" -- too little and it doesn't do the trick, too much and negative side effects start to kick in.
 
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