no seizure control currently help please

[vapour]

feeling very sick.

First off, my auras and feelings surrounding my seizures when not having them are awful.. nausea... weakness....tingling all over... not sure if you count the tiny little muscle twitches as seizures.... or just hte big jerks when they finally happen.

Was switched to tegretol... seems not to be working. Neurologist was extremly mad that the psych put me on it.... spoke to her.. cleared the air I am now on a strict 8 hour schedule with it as of yesterday.... and going back on lamictal as she thought it was doing good...

This morning at church (loadsssssss of people) lights.. loud music.. triggered me as it normally does when i am not controlled... so I left... miserable... took the klonopin.. it stopped... went out for lunch.. that went well.. came home...

THEN....complex partial seizures as I was trying to take a nap...had one last night too while I was falling asleep.

Woke up... nausea... twitching.. tingling...

took tegretol when told...

still going.... took klonipin.. a little better now.. but still not right.

I just need someone here to hear me out and understand how scary this is. They are not tonic clonics but I am so scared. I feel so sick when going through seizures.. like the entire day... I just sort of feel like im dying and Im afraid I will.... i spoke to a friend but I dont think she understood these feelings regarding the seizures.

Its just the limpness and nausea that can get me the most...the twitching is extremly uncomfortable...all I have done since i got home is lay down... not been able to do anything .. and also afraid too since stimulation sets me off.

[Meetz1064]

have any place you can go, like a neighbor's or a family member's to stay so that someone can be with you--or better yet, do you have some one that you can call over to stay with you? That would be the ideal thing to do.

If it gets really out of hand, please call the ambulance.


Take care,

Meetz

[vapour]

I am not currently living alone...which is good. but I still feel scared. Do you really need to call the paramedics ? or go to the ER if you are having Simple and complex partial seizures on and off all day long ? Its scary, but i feel they cant really do anything.. apart from IVs and IV ativan (uggghhhhh)... I could just give myself another klonopin.

I do live with people but I still feel alone with this and I just wish there was someone around me who knew what this was like-in person... because the nausea and everything that goes witht he seizures and just feeling icky is just hideous at times.

[vapour]

and I dont know whether to count the tiny muscle twithes as a seizure.. if so .. thats even more scary. I only count the large jerks...that usually affect my right leg or right arm. I found out that UCLA neurologist are still dealing with januarys referals and i got refered there before i found my amazing neurologist in may. Eventually I will get an app there, i might take it cause at this point im *** scared that Im gonna be 1/3 people with temporal lobe epilepsy that dont respond to meds and need soe sort of surgical interventio.. yet I dont care at the same time, I just want E GONE from my life......gosh i just want it so gone from my life.....i just wish i did not have this.... i really do... id do anything within my power to make it go away.

[vapour]

I already just got in there with psych. but does anyone out there understand what im saying about the feelings surrounding the seizures being just as bad ?

[Meetz1064]

there was someone there, too, who understood what it's like to feel so hideous, Vapour.

And I understand that you can take the Klonopin to try to abort the seizures--but after a while, you understand, it may not work anymore.

What I am concerned about is that you may go into Complex Partial Status Epilepticus. It doesn't happen often, but considering what you've been through recently, it may very well happen....

We will all be here for you, no matter what.

Meetz

[Meetz1064]

count the twitches as little tremors, the others as myoclonics.

Have you done anything with your diet or considered using neurofeedback??

[vapour]

Yes. I have been in complex partial status epilepticus, its bad...and yes Im scared it may get to that.. becuase that is exactly what happened.

I had the first compelx partial status epilepticus in march. Afterwards i got stable for a while on BRAND name lamictal (too expensive)

I was also given valium for emergencies.... leading up to 4th july i was having to use it alot.. then BANG .. 4th july set me off (stimulation .. problem solving... lights.. etc .. do that.. so I am gonna have to get off the PC now i just needed some support) and the valium would not work .. so ER again.. in status epilepticus.

I look at that one in a way as a blessing in disguise as 2 days later i found an awesome neurologist.. but I reallllyyy dont wanna go through that again, just needed to reach out here and know someone understood the awful feelings seizures give.

[vapour]

Nothing with the diet (yet) I am going to a brain storm summit for epilepsy awareness month here in a couple of weeks down town LA where a ton of neuros will be there and there will be workshops and meeting and things like that with info on all that stuff... so will be lookin ginto it...

for now Im off to lay down again..........would like more repliessssssssssss

[darcness]

(((vapour)))

My wife has these twitches too. They seem to have gotten worse for her after she got on Depakote, and have diminished some what since she started on Keppra. However just yesterday she had something similar. She was pretty much in/out of sleep all day with nocturnal seizures mixed in. It was so hard to watch. I wouldn't wish it on anyone.

I can't say I know how you feel cuz I don't have E, but I have seen my wife go through all this and it's very hard. For her a good nights rest is usually in order after a hard day like this. In fact, a good day and then some does her the best. She's been sleeping all day today, soundly I might add.

[Cint]

Vapour,

I really wish it would go away, too, for all of us!! I used to have days where I experienced complex partial seizures all day, so I know it can be hellish. I've tried 10 meds, had brain surgery, 2 VNS surgeries and still suffer seizures(complex partial and tonic clonic) once in a while. So that makes me in that 1/3 category of folks who don't respond well to anything. I wished it had gone away years ago when my kids were young so they didn't have to witness their mother being taken away in an ambulance. And they were scared too, thinking their mom was going to die. I wish they didn't have to take care of their mother on some days. So, I do understand the feelings that go along with having seizures.
Hang in there!

[vapour]

ty, glad someone understands.....

hopefully Im in for a better day today, i seem to be thus far. Not 100% right... but ... fingers crossed. I gotta go to work for a few hours today. I work part time, mondays tuesdays and thursdays teaching piano.

[Nakamova]

The "please, please, please don't seize" feeling -- it sucks. I don't know if the anxiety and fear are because of the seizure or part of the seizure (like certain auras). Either way I hope you get some respite and peace. Take deep breaths and give yourself as much time to relax as you can. Good luck!

[Rae1889]

yes, Nakamova I know that feeling! sometimes I will feel really slow and off, and then I'll get this killer foot and calf cramp like its already starting to seize, and I'll look at chad and just say "I dont wanna do it again!" or "please make it stop!" or "not again!'

And it is really scary when you know your not going to remember alot of what happened just before and after. Any cute things he might say to me while I'm post-ictal. Its sad missing peices of your life

[RobinN]

When I was having migraines monthly for 4 days straight, once the nausea was so bad they gave me something for it. It actually helped with the migraine. I didn't understand at the time the connection between brain and gut... now I do.

I don't understand why our mindset isn't willing to accept making nutritional changes as a first course of action. Why wait?

[Loudmouth]

Epilepsy sucks ass!!! I hate the fact that it controls my life and dictates's lots of can'ts to me - can't work, can't drive, can't keep a relationship, can't make my friends understsand, can't stop the seizures, can't have the life I want.

BUT I try to keep myself positive as much as possible by looking at the things I DO have - 3 wonderful kids, a nice cosy home, contact with people that know what it's like by coming on here.

I hope you feel better soon, and here's some (((((HUGS))))) for you until then.

[vapour]

Right loudmouth, understood, this warrants another post lol. I try not to let it control who I am as a person but it definatly at times.. especially now controls what I do.

[Bobby]

Good luck to you Vapour!

When my partial and complex seizures dont stop, I take Lorazepam, a couple of MG at a time. If that doesn't help, I take diazepam (a rectal gel form) and that usually calms me down, but makes me really really drugged and I sleep most of the night.

Without the help of my family driving me around and taking care of me and keeping a watchful eye on me, I don't know what I would do! Good luck to you!