This is all new, I'm scared, I don't like this

[LizJ]

I'm not sure how this started either. I'm 30. I'm not sure if this is because I have neurofibromatosis -OR last January I fell in the street b/c of uneven roads and hit my head and got a concussion.

But, in February it all started with severe migraines (I've had "silent" migraines for years) It never went away. Then, I was on the bus and the world started to spin, I got off and lost about 20 minutes and lost control of my bladder. - By the time the medics arrived my BP was 80/20 - they said it MIGHT have been a seizure.

A week later, it happened again, this time, at home - BP was fine, but blood sugar was low (even after eating cadbury cream eggs) They decided to keep me overnight and run tests MRI/EEG/Heart Echo/MRA all clear - no idea what happened.

Well a week later it happened AGAIN - this time I didn't want to go to the ER but I was forced to by my husband. - They basically told me not to come by and to see a neurologist (I have no health insurance) - From end of Feb to April I rang up $25,000 at the hospital in tests (sorrrrrrrrrrrrrrrry)

I went to the health dept and talked to a doctor who knows a bit more on the brain than the other doctors. told him what is going on. when I have this "episodes" I stiffen, so much I vibrate, lasts anywhere from 10-40 minutes - I lose bladder control -then I'm out of it for a while, sometime forgetting important info (ie my name) - he asked about my tests, told him they were fine - he said they SOUND like a seizure (do they guys)

he put me on a seizure med

it happened again two days after he put me on the med, a week later

then this past week (week of my period) HOLY CARP!!
monday - once, tuesday - 4 wed-thurs - nothing - friday - twice, saturday - once

one of the ones on friday and the one on saturday I was partially awake - they happened whilst i was sleeping - I could feel everything happening - I was yelling at myself to wake up and I couldn't move!

what is going on guys - I cannot see a neuro - tests say one thing - my body says another

*screaming*

what do the people who experience it think

 

[Nakamova]

Hi LizJ, welcome!

Muscle stiffening, loss of bladder control, and partial or impaired consciousness are all symptomatic of a seizure disorder, so that's not an unreasonable diagnosis. It's tough not having positive confirmation from the tests, but many folks with epilepsy never have a positive EEG or MRI. Some seizures originate too deep in the brain to register, and lesions or scars can likewise be hard to spot.

Often confirmation comes when an anti-seizure medication stops the symptoms, but it sounds like that's not the case for you -- at least not yet. It can take a lot of trial and error to find the right med and the right dosage to achieve seizure control. Which medication were you put on, and are you at the target dosage? There ought to be a way for you to schedule a follow-up appointment to evaluate your medication and the ongoing symptoms.

Best,
Nakamova

 

[flinnigan]

I'm so sorry Liz this can all be so confusing but yeah it certainly sounds like it. It can be very hard to gt a diagnoses I walked around for 43 years before some believed me. I don't know how you get to the right Doctors with out insurance but I'm sure someone here will be able to help. You've come to the right place.

Bless you

 

[valeriedl]

About 8 years ago out of no where I had a grand mal seizure. The dr's have no idea where it came from or why it started.

It took a good many years to get my seizures some what under control. I'm still having them but they aren't as severe and they aren't quite as frequent as they were.

I went through many different meds and dosages before this all happened.

Is there any way that you could get to see a dr about these things. I know without insurance it costs a fortune. Sometimes if you explain to the dr about the money they will give you sample meds so that you won't have to pay for them.

You've come to the right place to get answers and help.