Neurologists & Seizures

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I'm a bit in shock or something after getting back from the neurologist. I was referred to her after having repeated syncopy and a history of childhood and young adult seizures.

I was sent to have EEG and I had what I believe is a myoclonic seizure when they started flashing the lights. The seizure didn't show up on the EEG and the neurologist does not believe me that I had a seizure. I also have what appears to be absense seizures I'm guessing at least 50 times a day or more as far back as I can remember. I just didn't know my zoning out was an absence seizure until I met someone medically diagnosed with it. Well anyway the neurologist says I don't have seizures because the EEG didn't show any. But she did want to put me on SSRI because she said that's what they do with people like me who black out for no reason. Yeah right. I told her I am not depressed so I didn't see why I should take SSRIs. She said ok you don't have epilesy but I will let you take Topomax because it makes people lose weight. Uh...ok so she says I don't have epilepsy or seizures but she will put me on a seizure med so I can lose weight. Anyone else think she is sounding scary?

She seemed like such an idiot to me. Especially when I have read EEGs don't always pick up seizures. But then again how do I know she was even reading the EEG correctly?

Sounds like you should see a different neurologist.

She's the only neurologist for at least 300 miles in any direction. I won't drive to the big city either. With 6 million people I can't handle the traffic and have no one to drive me there.

IMO, I think that most of these so-called medical professionals get some kind of bonus from the pharmaceutical companies, by pushing the most popular drugs. Back when I was diagnosed as Bipolar, I, too was prescribed Topomax. I got the most uncomfortable side effect - it felt like an electrical current running through me, and I wondered if this was the beginning of a seizure. When I complained, I was told that "No one else had ever complained of such a thing." I was also told that the drug would make me lose weight. I tend to mistrust these doctors, greatly.

Topomax hasn't made me lose weight either. Nor have I gained any more (The other meds I am on cause weight gain) so I'll take that...Maybe they counteract eachother...

I have temporal lobe seizures...They cause an experience called "Alice in wonderland syndrome". When I first described this experience, doctors thought I was psychotic and prescribed anti-psychotic medication (One that is known to aggravate seizure activity.... ) I ended up in a psychiatric hospital for some time...everyone thought I was hallucinating until one of the doctors observed me when I was alone and decided she wanted to do further tests. Seizures didn't show up on my first EEG either...they had to do different kinds, including one where I had things stuck up my nose

An EEG is definitely not the only test for seizures. Try this link, for a start:

Guide to Diagnostic Tests for Epilepsy

Immortal would you mind explaining your Alice in Wonderland syndrome? I would like to know what others experience when having a seizure or before the seizure. Also what on Earth was that test about where they stuck things up your nose?

I think part of the problem with neurologists is they have never felt and experienced what their patients have so they have no freakin clue what they are doing.

When I first have very obvious grand mals at age 9 before it happened the first time I KNEW something very bad was about to happen 5 seconds before it started. I got this wave of heat starting in my feet and going up my legs to spine and finally to back of head then I would get an electrical feeling. The neuro basically thought this was BS how I knew ahead of time and how I was conscious throughout the seizure and could tell exactly what happened.

I was put on Welbutrin several years ago because I was told it is used off-label to treat nerve pain which I also have (incidently that started after I was struck by lightening). Well within a hour of taking the Welbutrin I got this painful electrical feeling in the back of my head, this feeling of impending doom and dizziness so I felt it was causing either mild seizures or I was having auras and coming really close to a seizure. I never actually hit the floor those time. But after 4 days of that I threw the med in the garbage!

I don't know what the test was called. Alice in Wonderland Syndrome gets it's name because the writer of Alice In Wonderland had Temporal Lobe seizures, and was writing about the experience. Lots of times they happen when the person is tired (Between asleep, and awake) so the person will mistakenly think it is just a really strange dream, when in reality they are wide awake. It is common to feel as if your body is paralyzed...you try to move and speak and it just doesn't "work"...usually accompanied by hallucinations. But these hallucinations are very real...They involve every sense, if you see water it can feel as if it is actually dripping on you...you'll feel the cold, the moisture. Now that I know what they are, they're actually kind of cool.

So the Alice in Wonderland thing I could actually google and find others that have experienced it? I thought it was a nickname you coined for your own experience. I'll have to research that.

What you described reminds me of when I took too much cold medicine. I was restless and couldn't sleep so I wandered around the house late at night. I went into the bathroom and swore I saw an angel sitting in the sink. A few seconds later I tried to open my bedroom door and I had that strange seizure aura feeling. Actually looking back I think I had a seizure too. I couldn't call for help so I got this idea to bang my head on the door really loud. Except then I couldn't stop banging my head and I couldn't speak for awhile. My parents of course were saying "oh she must have took some drugs" and I couldn't tell them that was the only way I could "call" for help. Course maybe the head banging was the actual seizure too. Just picture someone on their knees, clutching a doorknob and beating their head repeatedly against a door. Hmm... they say during seizures one doesn't feel pain and I didn't feel anything from whacking my head. No wonder I'm a total dork these days though.

Yes, it's the actual name of the syndrome.

oh, you can freaking feel pain during seizures, I've had it reduced, I've had it just as crappy and paainful as it is in normal as close to normal as I get waking life

now, POST ICTAL of a generalized, I feel NO pain, which is kinda nice, because so far every time I've injured myself some way <sprain+bit a hole in my toungue, concussion + bit a hole in my toungu, can't remember the main one for the seizure I had in the chair, but it was + bit a hole in my tongue, etc. notice a pattern here>

During temporal-lobe seizures, you don't convulse, so there is no risk of biting a hole in your tongue or being injured. Any pain felt is caused by the brain itself...When you have a temporal lobe seizure, you are usually completely frozen in place and unable to move. Most people don't even know you are having a seizure. (Like the feeling I described, of feeling paralyzed)

You're back! Yay!

I have the twitchy "look good on t.v." seizures

I haven't had an EEG mapping yet, but all my stuff has looked like it's been coming from my left hemisphere, which would make sense, since my last big seizure I've been having all kinds of weird stuff happening on my right side <eye twitching etc.>