Autonomic seizures kicking of 2 yrs of neuro chaos
 

Hi- the title says it all. For those experienced with epilepsy, I'd like to know your take....

At the age of 45 (female), I experienced what we now think were autonomic seizures. Rising feeling in stomach, head pressure, stiffness on one side of face, eye twitching, then nausea, dizziness, arrythmia, and having to relieve myself. This did occur at a time of minimal sleep and high stress.

THis went on for about three months, during which I developed severe insomnia b/c many of these would attacks happen at night. I was scared and had to try and sleep upright. I also had sensitivity to noise and light. I also felt a tugging sensation behind my eyes.

I had one EEG but it was brief and showed normal activity. ONe time I was hospitalized and it showed elevated prolactin.

Anyway, here is my question. Since then I have had neurological chaos. I have twitching all over (3 normal EMGs). I developed extensive palpitations. I had trigeminal and glossophyrangeal neuralgia. I now out of the blue have obstructive sleep apnea (Im 120 lbs!) My eyes burn, sometimes my eyebrows go up or down and droop a bit, and I have skins crawling anxiety which swings to depression.

I have autonomic system testing which shows dysfunction (but no orthostatic hypotension). I have an "adrenergic" system out of whack and a "paradoxical" parasympathetic response whatever that means.

I am going to have one more round of EEGs in January. I do have reactivated EBV and had Lyme in the past.

Just wondering if anyone has had "chaos" after suffering seizures or pseudoseizures. I am frightening that something is "developing." I can't live my life like this. Ive been to about 8 neuros and no one knows what to make of this. I don't see the autonomic neuro until March. Long waiting list.

Any ideas? Can seizures throw you off permanently.

Hi Pyr2,

Take my word sleep apnea can trigger seizures do to lack of sleep. You need to have a sleep study done along with a e.e.g. then the Dr. can find out all the details. Since light and sound are triggering seizures this means you are having both audio seizures and seizures do to certain color lights. Have the Dr. do a special e.e.g. where they flash different color strobe lights one at a time along with hearing different sounds and this can tell what area of your brain is triggering the seizures along with what colors and types of sounds are triggering seizures.
The dizziness and depression is all part of having epilepsy. You are at an age where you may be having these seizures do to hormones changing. My advice to you is to see an Epileptologist at an Epilepsy Center. I've seen many neuros over the 43 yrs. I've had epilepsy but I found an Epileptologist has much more education on epilepsy and they have treated me with less meds. You may want to start taking vitamin B12 1000 mcg. once a day this has done a great job reducing my seizures. I wish you the best of luck and May God Bless You!

Sue

Thank you so much Sue. I guess I need to do the EEG first. I went to an autonomic doctor who gave me a central beta blocker too b/c of the system imbalance. I do take B12 but not regularly. Need to do that!

Hi Pyr2,

I'm glad to hear that you take vitamin B12. Another thing you may want to do is watch what you eat. I found that if I used NutraSweet (aspartame) that triggered seizures like crazy for me.
I went on the ketogenic diet a few yrs. ago which is a diet for epilepsy. The diet is high in fat but low in carbs and starch foods this helped me a lot plus I lost a lot of weight on the diet. The diet is similar to the Adkins diet only more strict.
Taking Beta blockers is a very good thing to do to help reduce seizures. I wish you the best of luck and May God Bless You!

Sue