Saw a new neuro today

[horsehead]

So I saw the new neuro today. He thinks my seizures are non -epileptic. Since i told him the keppra and clonazepam worked for me in the past, he decided to try me on just clonazepam to see if that helps. The doctor and the np were very nice and listened to me. Heres to hoping this works. I have another appt in 6 weeks.

 

[Nakamova]

I hope the clonazepam works for you. I know how exhausting this whole process has been.

 

[thornton8000]

hey horsehead,
I know the feeling, they think mine are PNES, but I'm not so sure myself since mine have stopped almost completely since starting my keppra I am still on topamax and keppra I'm seeing a new neuro, and a new epi this month, good luck, I've read a little about your journey on here and hope you get some soild answers soon my friend!
mike

 

[horsehead]

Thanks mike. Glad your seizures are under control.

 

[LJ-Bain]

Clonazepam is something! Let us know how things work out for you.
I hope that one day your seizures will be under control too.

 

[julie wishes]

Yes! A positive post about a doctor

 

[horsehead]

Well no seizures since I started it so thats good.

 

[Nakamova]

That's great! I hope things keep getting better and better.

 

[Hand of Blood]

it doesnt make since he thinks u wasnt ep y he keep u on meds?

 

[horsehead]

I told him the meds worked for me in the past that is why he decided to try the meds again. I was dxed with epilepsy when I was younger. the only reason the neuro thinks they are non epileptic seizures is because they dont show up on the eeg.
HOB read my old posts if you want to know what I wa going through.

 

[Rae1889]

I am moving very soon, and there is a walk in clinic right near the new place. I am thinking about going in there and asking for a referral to a new neurologist. With a letter basically outlining everything I want to say so that it goes well.

 

[horsehead]

I hope you get some help rae . I know you have been through alot.

 

[Rae1889]

you may want to do the same. keep a detailed diary of your seizures. Then give a copy to your neuro when you see him next. If you have an ipod or iphone with a camera, you can download the free seizure tracker app, this way you can add video and sound to your diary and email it to your neuro, or upload it onto a jump drive.

As for trying the meds, the neuro probably continued with the clonazepam because it is also used to treat psychogenic seizures (mainly ones stemming from panic, anxiety, startle response, OCD, mania and depression) so he is probably thinking that if its working, its because you have one of the many psychological disorders the drug helps to treat. Not trying to say you do or do not have E or PNES, but thats just how doctors think.

 

[horsehead]

If I have anymore , which I really hope I don't, i will write them down.
Humm so if clonazepam works for both e seizures and non e seizures i wonder how they tell which ones you have?

 

[Rae1889]

really as far as my research goes, there really is no way sure fire way to tell if a seizure is psychogenic, pseudo, faked or epileptic, I think they are only able to tell if there is a physical issue. such as diabetes, brain tumor, cancer etc.

As sucky as that sounds, everyones seizures are sooooo different, with only a basic mold to fit in (although most neurologist tend to think that if you dont fit the mold it isnt E.) the brain works in mysterious ways, and unless they open you up and place electrodes in and around your brain, they can technically cant know for sure (false positives and negatives etc) not too mention that if they screw up putting in the electrodes and cause scarring, that itself could cause a seizure....

Its essentially a catch 22, and to be entirely honest, I think people should be treated as E unless a physical cause is found. This way to keeps someones frustrations etc down, and majority of the drugs treat all the issues anyway.

 

[horsehead]

still no seizures

 

[Nakamova]

Awesome!

 

[horsehead]

Thanks