OK, here's my story...not sure where to go from here...

Have been having sz for over a decade--though they were misdiagnosed repeatedly as "stress". The ones I was having and continue to experience were an odd numb sensation passing over the left side of my body...this was the "completion" of what I now know was a sz, but I had/have other odd sensations that precede or replace the one-side numbness. A new manifestation was a type of "absence" sz, but I don't lose consciousness or cognitive function, just a more general kind of "numbness"--can continue speaking, working, whatever I'm doing. The first time I occurred, I did blank out, but I realized I was simply focussing on the odd sensation that was running over me...

Anyway, April 2005, I had a nocturnal convulsive sz, then another one in November of that year, went to emerg, had the CT etc., finally saw a neuro in January '06. She immediately prescribed Valproic Acid, didn't really seem to be listening to me, didn't explain anything to me...sent me for MRI...

Upon reviewing the potential side effects of the drug, I was reluctant to take it....seems wrong to treat a symptom without knowing the cause when the side effects can be more deleterious to my quality of life than the sz themselves..

Anyway, I have had nocturnal convulsive sz about every 6 months since the first. It's freaking me out, I'm scared, but I did not get a good feeling from the neuro I saw...I know I should try to find a new doc, I just want to be prepared with questions and I want to know how dangerous it is to stay off meds altogether....docs tend to push meds without exploring other options...

I'm babbling, I know..just feeling overwhelmed and lost and scared....

Time to find a new doc that will sit down and explain what is going on. Take a list of questions with you or drop them off ahead of time.

Most epilepsy diagnosis mean that they don't know the cause or source of the seizures. I've read that it is as high as 40 to 60 percent.

Welcome to the forum!

CJam,
WOW, all to common have I heard of people (myself included) having the true diagnosis of Epilepsy being confused/substituted with "Stress." I've been fortunate enough to have my 3.5 year stretch of active Epilepsy under control. Thankfully,the correct diagnosis was offered @ Hershey Medical Center, who changed my life, with a reference to University of Pennsylvania in Philadelphia. I found it interesting when I was reading your current description of your Seizures. You did say that in the past you had several "Convulsive Seizures", but the recent ones give you a sense of "Absence", but are still able to talk, work, walk (Im assuming), and other tasks you were in the progress of doing just as the onset of the Seizure came. The newer Seizures seem to have many of the symptoms of the Epilepsy I experienced in those 3.5 years. My Seizures were referred to as Partial Complex, which are in the category of petit mal, so no convulsions. My Seizures included the "Absence (or dementia), a Taste or Smell (usually Foul or sour), Blanking out was pretty typical, and NO MATTER WHAT...AN INSTANEOUS POUNDING HEADACHE!!! If you felt/still feel uncomfortable or not satisfied with the current treatment your Neurologist is giving to you, finding a new physician is probably your best bet. Without a question, to establish somewhat of a balance and control of the Epilepsy, please stay on some medicine. Tell the neuro of the side-effects you're uncomfortable with, and suggest it may be time to potentially change to a different Anti-Epileptic, just something to put you as ease. I wish you the best of health.
GOOD LUCK,
Clutch8185@aol.com

I think that it's time to search for a new neurologist. I've had a few weird ones in my life too! I agree with Julie and you should try to find one that will take the time to explain(to his/her best ability) I know how hard it is to find a doctor like that but once you do..it will be well worth it. I wasn't diagnosed with Epilepsy at about nine but had seizures for sometime before that. I know seizures are scary, boy don't we all, but because of this group of people I found here....it's been a blessing. They will try their best to be there for you and to give the best advice that they can. If it wasn't for this group, I don't know what I would have done. Welcome and we are all here for you.

Hi CJam,
Welcome to the forum! I've had absence and complex partial sz. for over 30 yrs. and I've had to see many different neuros. or epileptologist because a lot of them just try and load me up with different AED's (sz. meds) The type of sz. you are discribing when you're still aware of things going on around you and are able to talk sounds a lot like a simple partial sz.
Just like you I took valproic acid for many yrs. it was a great help to me but the down fall was that I had to have blood tests every month to check my liver and at one point I was admitted into the hospital because the valproic acid was eating up the platlets in my body and I almost bleed internally. Check out these websites for more info. on epilepsy.
www.epilepsy.com
http://www.neuropat.dote.hu/neurology.htm
when the main page comes up click on epilepsy

Also stay away from anything with nutra sweet in it like diet soda because it's been proven that nutra sweet causes more electrical activity in the brain which can lead to sz. Here's wishing you well and May God Bless You!

Sue

I am a little curious? From your posting - Just an CT? What about an EEG? vEEG? Were they ever done? Maybe I misread something or missed out something ...

I agree with everyone else's postings - you need to get a new Neurologist or get a second opinion, or if you have a Primary Care Doctor - then have him or her evaluate everything ... I'm a little perplexed by all of this.

I've been through everything under the sun, EEG, vEEG, MRI - reg, MRI WOW,C-Scan, SPECT, PET, WADA (twice), and so much more that would make your head spin, and not to mention that I was supposed to have brain surgery several times... all of these are on "hold" at the moment as the current medications I'm on are working, and it's a wait and see right now.

So I'm a little lost myself as how the conclusion came to being ...

How do "we" end up getting weird and/or bad ones? That part
itself is scary!

Sounds like you ran through the same series/sequence, conglomeration of tests I myself have done. I had everything done to localize my epileptic activity with the exception of the Inner Cranial Epilepsy Monitoring(Brain Imaging), just doing the VEEG was enough to find the , I'll call it the: "Poison" that troubled me for just over 3.5 years. I too was a candidate for Epilepsy Surgery, but also turned out to be a patient, which I'm grateful for and happy to say I'm doing fine now!!! To the best of my knowledge, the Epilepsy Surgery is showing the best results for Partial Seizures...them (Seizures) typically being in the Temporal Lobe(s). Ina previous post, I revealed that in May '04 I had a Right Temporal Lobectomy and Partial Hippocampus removal. Where has your Epilepsy been said to be localized/focused? You said that now your Seizures have been under control with the various Anti-Epileptics, which you've gotta be happy about, but should you find yourself unfortunate and the Seizures start again...please, please, go for the surgery!!! It's changed my life and I'm certain it'll do the same for you.
Not sure where you live right now, but I will suggest University of Pennsylvania in Philly. The Penn Epilepsy Center and Neurosurgery Dept. is AWESOME! Good Luck, and Best of Health--Keep those Seizures Dormant!

Clutch8185@aol.com

I was born with it.

I had seizure-free breakthroughs but these stupid HMO's that my ex kept changing or the company kept changing, and the stupid clauses they had "pre-existing condition" often kept me at bay, so it would keep me away from a Neurologist or what-nologist.

But strangely, there was a shift somewhere in the 1990s' where the temporal lobe went from the left to the right - and everything's on the right side of my brain now.

I suffer from Tonic Clonics & Complex Partials - but after 2005, something happened, where it's now Complex Partials with Secondary Generalized and it's resulting Todd's Paresis, hence had mild spells in the year of 2006, and it was effecting my cardiac system (originally they thought it was TIA ~ but the Cardiologist finally caught it) and then I got hit with a moderate Todd's in Summer of 2006 - had to undergo battery of Tests again - but due to the failed WADA - because the Nurse administered some meds that puts me to sleep before asking me if these puts you to sleep, the WADA was called off half way through the procedure, and due to the angio-seal - I had to wait 90 days before the next procedure can be done.

Even in the many MRI's, C-Scans, etc - it's all shifted to the RIGHT, for once before everything was on the left, is now on the right, and with neurodegenerative hotspots showing in addition.

Meanwhile they had to put me on some other AED's in place. So by looking at the history - sounding like a "Wedding" Something old, Something new ...

Dilantin, Mysoline, Klonopin - are all old anticonvulsants (AED's) that have always worked with me with virtually no side effects....

Zonegran / Zonisamide - is a newer drug that I can take with no side effects at all.


Phenobarbital & Keppra are the first two on the top of the list of what NOT to give me ...

Since I'm allergic to Tegretol ~ I got kind of mad at my Epi when he put me on Trileptal (I should have looked that one up - the fault lies with me) - and I had a horrible (BLEEP) with that one and nearly ended up in the ER - and it was 2 weeks when I found out that Trileptal was Tegretol with Oxygen! Grrrrrrrrr!

It seemed that the Epi was causing more seizures than I normally had, and he seemed to be so pressed towards surgery than anyone I've ever known. But once right out of his hands, I sustained Back-to-Back Tonic Clonics with Complex Partials ... and not to mention, bitten sides of my tongue twice and lost 2 teeth (and one I have in my possession that the hospital gave me) and cracking and chipping teeth, I was in a mess.



Everyone was relieved that I was out of his (Epi) hands!


Current meds I'm on is Zonegran 400 mg & Klonopin 1.5 daily - and it's been doing so well, like the southern adage goes, "Ain't broke, don't mess wit'it!"

I do not know what their next step will be... Since I have a great Trio of Doctors - the Primary, Cardiologist & Neurologist - all working together.

So right now - just one step at a time and playing it cool!

Hello and welcome! I'm also curious as to if they have done a EEG or VEEG, or even an in-office hyperventilation (hoping I spelled that right) test. Have you had any other testing that feels more like you're having your fine motor skills or memory tested? I know a larger form is sensory integration testing, but most Neuro's have a smaller test to do.

If you did have a EEG and didn't mention it, did they find anything or mention the area?

PS: Did you make your question list yet? If you need help, I'm sure everyone here (self included) would be happy to give you a hand.