If My Doctor Can't Help, Who Can?

Hi,
i can appreciate your frustration. I've had petit mal since I was 7 but have been having tonic seizures for the past 10 years now, usually every 18 months or so. I've had eegs done, and sometimes they show some epileptic activity, other times they don't. I've had an mri done which shows no abnormallities and there's never been a determined cause for my epilepsy. I do have complete confidence in my doctor and agree with his diagnoses etc., however, if I were in your shoes with little to no answers or support I would try to get another opinion for sure. Have you been medicated since seeing this doctor? Has your situation changed any?
Kathy

It sure is frustrating when the doctors do not know. Unfortunately 70% of the time the cause is not known!!

I have 2 kids that can have seizures in sleep and it took us awhile to figure out what was going on also. They feel different and have a lot of trouble thinking when they wake up after a seizure, for one thing...


You should get a second opinion if you have doubts. How are you doing now? It is hard to deal with a diagnosis when you have had just a few things going on and the clinical answers are not clear. It is pretty common to have normal eegs and still have the possibility of seizures....

Hello everyone,
my name is sami and I like you, have been diagnosed with epilepsy 1 yr ago. I had 5 grand mal seizures in a row. And when one would stop I could talk like a robot slighty.Only for 10 seconds or so. The seizure its self lasted 40 minutes. I am 22 yrs old and female. I had no other history of seizures before this that I knew of. I have had 1 eeg and nothing showed except stress. (nothing epileptic in origin) I wasnt happy with that because I was still continuing to have seizures. After the initial one it was 7 days later and I had another bad one. My local gp put me on tegretol 100 mg 2x daily. I was still having fits. So I went to another neuro I had a ct a mri and a sleep deprived eeg done and all came back normal. This neurologist I am seeing now says that I am epileptic. But its unknown in origin. I am currently on 2000mg a day of epilim (sodium valproate) and 600mg a day of tegretol ( carbamazapine)
i dont like the sodium valproate. It makes me nausiated and it has made me gain weight. My ankels have also swolen alot on certain days. And my vision is weird about 2 hrs in the morning after taking tegretol and at night again when taking the tegretol. So the neurologists cant say if you are or arent. So I dont even know why they do the eeg tests. Only the lucky ones have abnormal brain waves. I dont mean that in a bad way. I just mean that if the doctors knew where mine were coming from then I would have a better chance of getting on the correct med. Or I could possibly have brain surgery. But seing as its all unknown I have to be a guine pig with pills like so many others. Ya know.
Please take care and I hope that this helped.

My seizures also came out of the blue. I was age 30 when they started and went through at least 7 nuerologists and many brands of meds until I found the right Nuerologist. No reasons for the seizures is normal.
You don't have to stay with the same doctor if you are unhappy. You also don't have to stay with the meds they gave you. My first doctor pushed tegretol on me like mad and wasted at least 2 years. It didnt work for me. Others mad me nauseas as well. It took over 10 years to figure out which meds worked for me. So yes we feel like a guinea pig but epilepsy is different for everyone so it's pretty normal we go through this. In 19 years only one test showed something once and that was the eeg. Something does not have to show on these tests for a Nuerologist to know you have epilepsy though.
It's harder for us to accept we have it than those who see us and watch it happen. We don't actually see the siezures so we seem to disbelieve it for a very long time. Denial was something I went through for years while everyone around me was nervous and worried about me. If you dont like your meds..tell them you want something different. Have you asked about Kepra? It makes you a bit tired if you take alot of it so I save most of the dose for bedtime.

I have had them for only 8 months and after only one sleep deprived eeg that was normal and one CAT scan that was normal (I'm 44), they are convinced that mine are stress induced and not "eplipetic" at all. I feel crazy. Now, I'm about to go into the hospital for 5 days for "long term montoring where I'll where an eeg cap and be under a video camera 24 hours a day until I have enough seizures (if I have them at all) so they can see if I have brain waves that match noted brain waves that match normal epileptic patterns. I'm currently on 225 mg of Topamax and 750 mg of Depokote ER and 2 mg of Clonopin and a host of Cardio drugs due CABG surgergy 9 months ago to correct a heart defect that caused a heaart attack at 43. I also had a hysterectory (leaving the overies) 9 months before the CABG. I can't help but wonder if all three are related but none of the doctors, the cardiologist, the ob-gyn surgeon and the epilelptologist have failed to connect something major. But all seem to think that the seizures seem to have prsented so late in life (43, as I recovering from CABG surgery), that they were more than likey stress induced, and therefore not epilepy, that I'm scared that my mind is taking over my body in ways that I can't understand. Epilepsy, I can understand - this - stress induced seizures, I can't. Am I going to end up in the pysch ward on thorizine? I'm terrifed? How can someone as intelligent as I am, a executive at a fortune 300 firm, do this to myself? I'm been operating like this way for 24 years? I'm fit. My CABG surgery was a defect, not due to blockages or high blood pressure. I feel my next stop is a padded cell if I can truely invoke a tonic-clonic seizure because of stress. How do they treat this? My seizures have went from max of 6 clusters a day to once every six weeks now on meds. But I do know that there are signs that I may exhibit stress induced ones based on what i read. My eyes close (according to observers, I bow my back hard, I cry (from frustration as I come out of the seizure - not during the seizure and I am not sure, but I don't know if I have assymetrical or symmetrical movements in my my limbs during my seizures). I have them both in public, alone, outside, inside, doesn't matter. I am just afraid on either score, one part of me would like for it to be triggered by stress - it seems he easiest to fix, the other part of me doesn't want to be labeled as so weak that my brain can't handle stress and mainfest such a response to it that it excudes such a horrible and violent response in my body. Why can't I just scream and yell like other people? Ok, that was a joke?

Anybody living with stress induced epilepsy? What is the treatment? Drugs? Therapy? HALP??? I feel lost and alone. In four weeks, I'm about to enter a rat cage and be video montitered with wires on my head for week with all meds taken of my head and it scares the living *bleep* out of me. Please ANYBODY, help me prepare. I'm begging you.

Have you seen a Nuerologist?.. for in 20 yrs of seizures I never heard of an 'epileptologist' like you stated.
Are they saying you have petite mal seizures? Temperol Lobe seizures?

Not enough info in your post to be able to know what to tell you. And alot of your post was difficult to make sense of. (especially the first part).
But I know that hormones induced my seizures and you say you still have your ovaries and now you are at the age of pre/or menapause.

Do you experience a smell or aura such as a dejavu prior to your episodes?

And..Have you researched panic attacks and or anxiety?
No offense but have you seen a psychiatrist? Most people with beginning symptoms such as yours see both a Nuerologist and psychiatrist so don't let that get you nervous.
You didn't mention if you have seen either.

elderberrywine said
I'm about to enter a rat cage and be video montitered with wires on my head for week with all meds taken of my head and it scares the living *bleep* out of me. Please ANYBODY, help me prepare. I'm begging you.

Don't worry! I'm 54 and have had 2 of them. The type of EEG you describe is the best way to catch your seizure on tape, both visual and EEG. Knowing where, in the brain, the seizure originates allows them to be able to treat it w/o most of the "guineau pig" treatments alot of people go through. I was a g.pig for 15 yrs. before they finally did one on me. None of my outpatient EEG's ever showed much, if anything, at all. Then, when they finally did one on me, they were able to correctly diagnose the cause, the type and how to treat it. I had multiple types of seizures and they were able to pinpoint all of them.

As far as the test itself, it's painless, and where better to have a seizure than in a hospital. The only problems I had with the procedure were, because of my dry scalp, the itching on my head after a few days became a real pain in the ass for me(both times) and when I took a sleepwalking ( complex partial) seizure, I took my eyeglasses from my desk drawer, walked into the bathroom and flushed them. Other than that, they were well worth it. NO MORE GUINEAU PIG and proper treatment.
GO FOR IT!!! Hoping you get on the right track!!