Seizures or ?

[horsehead]

Hi I've been on this site before but it has been awhile.

i'm still confused as to what is going on with me. Doctors have givin up and just said i have non epiletic seizures and will do nothing for me.I have had eeg's ,video eegs,mri's , cat scans. The only thing that showed was i have a buldging disk in my neck. Some doctors have seen my spells and called them seizures others say they are'nt. 7 years ago i had two spells in a row losing conciousness and convulsing while holding my son in a motor home. my neice and nephew saw me telling me I was shaking all over and dropped my son on the floor. I felt light headed before it happened and then felt sick when i woke up. For years now I've been having something happen at night when I'm asleep and dreaming the dream will stop I'll feel something in my head like a shock then wake up screaming. I'm not scared at all just the scream seems as if it is from someone else I have no control over it. the other day i woke up after several of those screaming spells with a horrible headache and very dizzy. also have felt very disconnected for a few days.Oh I shake a bit as well during the sceaming spell.

I was taking keppra, which worked, I had no spells while on it ,but the doctors took me off after a three day video eeg that showed no abnormal brain functions .

Anyway do these sound like seizures ? Or have any of you had these type of issues and the doctors know what it is ? Thanks for any opinions.

 

[horsehead]

Something else that was strange happened. yesterday I was sitting in the office with my husband and i saw a large spider fall down on my shirt. i hit my shirt where the spider was and felt nothing and looked around for it but nothing was there.

 

[Nakamova]

I was taking keppra, which worked, I had no spells while on it ,but the doctors took me off after a three day video eeg that showed no abnormal brain functions.

This is crucial information. Find another neurologist to consult. Remind them EEG tests can produce false negatives, or miss seizures that originate too deep in the brain. Ask them to re-evaluate your symptoms, given that they were controlled by Keppra.

 

[horsehead]

yes i did think it was strange that they took me off the medicine when it was working. They even wrote a note to my primary doctor telling her not to put me on any seizure meds. kindof like they thought i was in there to get meds or something. i never asked for any meds just answers to what was going on.
the docs took me off keppra to to the 3 day video eeg and the spells came right back after only one day.

what I do find strange though is that they will go away for several months at a time and then come back. I cant find any reason for them.

 

[horsehead]

no one has had this kinda thing happen to them? Just looking for someone to talk to about it.

 

[Cint]

what I do find strange though is that they will go away for several months at a time and then come back. I cant find any reason for them.

Over the years my seizures would come in clusters..... several every day for about 4 days and then go away for another month, maybe two. After many meds and surgery, I still have an occasional seizure maybe 6-8 months. I never could find a reason for mine, either.

As Nakamova said, you need to find another neurologist and tell them the results of your VEEG. Get a 3rd opinion if needed.

 

[Hand of Blood]

all my tests came back fine..... but after few years of having them they just dignoised me with ep anyways.... i cant believe my nero thought it was panic attacks i just laughed at him

 

[horsehead]

My nero said it could be panic as well, i do have a panic disorder however it is controlled and the spells are very different from the panic attacks. haven't had any spells for a few days again.

i'm not sure who else i could see I was sent to the university of iowa for most of the tests

 

[Cint]

Here is a list of doctors who treat epilepsy in Iowa, some at U of Iowa:

http://www.aesnet.org/find-a-dr/find-a-doctor-epilepsy-com

Doctor Information

Alexander G. Bassuk, M.D., Ph.D.
University of Iowa
Med Labs Rm 2158
25 S Grand Ave
Iowa City, IA 52242
UNITED STATES
319.384.4648
Map It

Mark A. Granner, M.D.
University of Iowa
Dept of Neurology
200 Hawkins Dr S212 GH
Iowa City, IA 52242
UNITED STATES
319.356.7235


Mostafa Hammoudi, M.D.
Iowa Health Physicians
Methodist Plaza Specialty
1221 Pleasant St Ste 300
Des Moines, IA 50309
UNITED STATES
515.241.4200

Sant M.S. Hayreh, M.D.
Mason City Clinic
Dept of Neurology
250 S Crescent
Mason City, IA 50401
UNITED STATES
641.422.6760


Matthew A. Howard, III, M.D.
University of Iowa Hospital
200 Hawkins Dr Rm 1620 JCP
Iowa City, IA 52242-1061
UNITED STATES
319.356.8468


Preeti M. Joseph, M.D.
Medical Associates Clinic
Dubuque, IA 52001
UNITED STATES

Charuta Joshi, M.D., FRCPC
Children's Hospital
200 Hawkins Dr
2506 John Colloton Pavilion
Pediatric Neurology
Iowa City, IA 52242
UNITED STATES
319.356.1851


Hiroto Kawasaki, M.D.
University of Iowa Hospital
200 Hawkins Dr Rm 1620 JCP
Iowa City, IA 52242-1061
UNITED STATES
319.384.8239


David B. Moore, M.D.
McFarland Clinic - Neurosciences
1215 Duff Ave
PO Box 3014
Ames, IA 50010
UNITED STATES
515.239.4435

 

[horsehead]

thankyou for the list

 

[momof3boys]

yes, I agree with the others, if the Keppra did help, and you had problems after being taken off, then I would find a good neurologist to go to and point that out to them. I kind of had the same thing happen to me last year. I had my first VEEG in march of 2011 and because I didnt have any grand mal seizures, but simple partial seizures, my dr took me down from 2 medications to only 1, but then thought that since alot of the seizures didnt show up on the EEG, that I was possibly having non epilpetic seizures. So he referred me to a psychologist dr, who talked things over and looked at my chart. During this time period, my dr had tried to get me off the Keppra and slowly took me down each week. I started out at 3000mgs a day and got down to 2500mgs a day, but during that time, I had alot of weird thing happen. My hands and feed would get numb, and tingling feeling, and I would get headaches, and feel weird. During my simple partial seizures, I always have the tingling feeling, so I knew it had something to do with not being on enough medication to prevent the seizures symptoms from coming. The psychologist even said that if they were in fact non-epileptic seizures, the Keppra wouldnt be controlling them, and of course after going back to my neurologist, and telling them about what the psych dr said, along with them hearing the symptoms I was having, they agreed to put me back to 3000mgs a day of keppra and see if that helped. Within days, I was back to feeling normal, and all those symptoms were gone! So just cause a dr says one thing, doesnt always mean they are right. I had to proof myself to them that what they were saying wasnt "right". But at least I got them to hear me and find a right solution to the problem! I hope you do too!

 

[horsehead]

Hmmm I have that tingling feeling all the time and headaches I thought it was due to the buldging disk. I've seen a psych dr but she didn't help at all . I hate to go through all that testing again for nothing. I also think it might be really difficult to get a referal from my doctor due to the letter from the neuros . Things to think about.