New and confused

[Evie]

Hi,

I had a head injury in 1999 that subsequently resulted in a few generalized seizures. After a couple of years and a few different kinds of drugs, they were controlled with Lamictal and life got pretty much back to normal. Later on I lost my health insurance and since the seizures were gone, I stopped taking the (hideously expensive) Lamictal. Within a few months I started having auditory and olfactory hallucinations, periods of severe disorientation, and weird inappropriate spontaneous bouts of weeping. Afterwards, I'd be incredibly exhausted and sleep like the dead for hours and hours.

I didn't make the connection between the second thing and the first thing...they looked really, really different...until I went to a psychiatrist for my brand-new psychosis. He diagnosed TLE, I went back on the Lamictal, and except for a few rare breakthrough events, live has mostly returned to normal again.

But last night I woke up at 2 a.m. because my right arm was shaking violently from my elbow to my fingertips. I didn't know what to do, so I got up and went downstairs and it stopped after a couple of minutes, but was almost immediately followed by severe anxiety and sensory hallucinations. I knew that the second part was the TLE and if I just rode it out it would end, but that part lasted for almost two hours. What the heck??

The thing with my arm was new. Can anyone tell me what that was about? Thanks.

Ev

 

[RobinN]

Simple Partial Seizure? When my daughter was on meds, there were many different side effects, mostly unusual seizures, muscles twitching, vision and memory issues, head turning and becoming stiff, ... however most of her seizures were tonic clonic. Now connected to a blood sugar and hormonal imbalance. Thankfully the weird seizures stopped after the drugs were out of her system, and the TC's stopped almost a year ago.

Evie, have you considered perhaps researching neurofeedback? It is a way of training the brain. It can strengthen the areas around an injury. In addition, nutritional changes, to improve brain function and thus raise the seizure threshold.
Just a thought.

 

[Belinda1961]

Hello Evie,
welcome to CWE

I'm sorry about your generalized seizures.Do you by any chance have anything happen before the seizure a warning an aura?
You definitely need to take your medications.I know the side effects aren't to great
Do you have a neurologist or an epileptologist? If not you need to get one.
Belinda

 

[Evie]

Hi Belinda,

Thanks for the welcome. It's nice to find a community of other people dealing with the same stuff I am.

I haven't had a generalized seizure in probably five years now. I have these funny temporal lobe seizures with the hallucinations, confusion, and crying. I was seeing a neurologist who was very helpful, but probably was even crazier than I was. His office staff would periodically quit en masse and I'd show up for an appointment and he'd be manning the front desk, answering the phones and trying to figure out his own billing system. Funny, but not too confidence-inspiring.

Since then I've been seeing a P.A. at the rural health clinic near us. He's supportive, but he tells me he's in over his head. He referred me to a new neurologist a few months ago who told me, sight unseen, that I'd been misdiagnosed and I was probably just having migraines. I never went back.

I'm good about taking the Lamictal and I haven't really had any unusual stuff until the arm thing last night. After the arm shaking stopped it was the usual routine: sensory hallucinations, confusion, etc.

I suppose I ought to be keeping a log of this stuff. When it happens, it's so vivid and traumatic that I can't imagine forgetting it, but after a couple of days it fades away like a dream I can barely remember.

 

[Evie]

Simple Partial Seizure? When my daughter was on meds, there were many different side effects, mostly unusual seizures, muscles twitching, vision and memory issues, head turning and becoming stiff, ... however most of her seizures were tonic clonic. Now connected to a blood sugar and hormonal imbalance. Thankfully the weird seizures stopped after the drugs were out of her system, and the TC's stopped almost a year ago.

Evie, have you considered perhaps researching neurofeedback? It is a way of training the brain. It can strengthen the areas around an injury. In addition, nutritional changes, to improve brain function and thus raise the seizure threshold.
Just a thought.

I'd never heard of neurofeedback until I read your post about it, but it's something I'll look into. The only other noteworthy change in my life lately is that I started working out in a gym a couple of weeks ago after years off.

That, and I ate an orange. I blame the orange.

 

[Belinda1961]

Evie,

neurofeedback I wasn't sure what that was until I figured it was the same as
bio feedback. I had been doing that on my own.

I'd start thinking of something else when I had an aura or warning. I was literally able to shake the seizure off.

(a)abort (b)fail (c)retry (d)throw computer against wall

southern&proud of it

Belinda