Hi Elaine,

I wish you the best of luck with your neuro appt. You may want to ask your neuro to do a DNA test on you to find the best seizure med for you all it takes is a few tubes of blood and some salvia from the inside of your mouth. Then the Dr. can find the correct seizure med for you with the least side effect.
Be careful if you have to go on med for your bronchitis I had that a few yrs. ago and my family Dr. put me on some med and it caused my seizure med to become toxic. I wish you only the best and May God Bless You!

Sue

Thanks for the 'heads up' about bronchitis, medications, seizure medications.

It does seem like it's always something.

I have a raging headache and slept really badly last night. I do want to see the doctor today, for sure.

But really, I'm just so miserable.

I'll let you know how the appointment goes.

Hugs, ElaineD

So Dearest Sue,

I saw the Epilepsy Specialist today. The diagnosis: my jerking and trembling, and my episodes of collapsing are related to worsening damage to my Autonomic Nervous System. I don't have Epilepsy

Autonomic nervous system - Wikipedia


The second 'bad news' is that there no medication for my problem. The shaking is just moderately unpleasant, but the collapsing to the ground is downright inconvenient.

So, I will just have this condition, as it stays the same or gets worse, with no treatment.

I am very sick with this bronchitis which is going around, and that is new for me, too. I haven't been sick for over 3.5 years, since I started IVIG. So I am just not a happy camper all around.

The collapsing is an orthostatic problem (when I stand up) and a failure of my autonomic system to make the adjustments necessary to stand up without falling down. I've been tested several times for orthostatic hypotension (falling blood pressure on standing) and it isn't that So it's some other part of the adjustment system.

In fact everything is way more complicated in our bodies than those cartoon diagrams that I saw growing up. The human body is amazingly complex, and every time I see a new specialist my mind boggles.

The shaking and jerking and trembling of my left side is less clear to the doctor, but he's very clear that I don't have any form of epilepsy and that there isn't any known treatment or medication. So I will always wonder when I will collapse again?

I feel very alone in this, but my husband is very supportive, which is a big help.

Hugs, ElaineD

Hi Elaine,

I would get a second opinion if it were me, if I may ask after you've had these possible seizures do you have a headache, feel confused after it's over, and feel tired? If you do these are seizures. Also from what I read about what the Dr. said you have it can cause heart problems and take my word I have that. Heart problems can lead to seizures sometimes do to lack of blood flow to the brain. It's up to you but I would get another Drs. opinion.
Wishing You only the Best and May God Bless You!

Sue

Those are all the questions the Epilepsy specialist asked:

I don't get confused.

I don't have a headache.

I don't wet myself.

I don't feel tired.

I don't black out.

I just go down, and get back up (with difficulty because I have mobility problems).

I've had two EEGs and a sleep study with EEG in the past 3 years...all perfectly normal.

So, I really think he's right.

So I'm slowly stopping the Depakote. The doctor said if the Depakote didn't help, nothing would.

And the condition developed while I was taking 3600 mg Neurontin (Gabapentin), another reason I wondered how it could be true seizures.

SO, I'm in bed today with the bronchitis from h..l. I guess it lasts up to 3 weeks. So I'm a bed potato for today.

Thanks for all your support and care over the past week, Sue.

Love, ElaineD

Hi Elaine,

I think I know what your problem may be and that's the Neurontin. I was on
it for a short time for a concussion and it caused me to have status epilepticus seizures, then I saw on NBC DATELINE where 2 employees reported the drug co. because they found out the drug can cause seizures for people who have never had a seizure in there life. If you find you aren't having anymore problems once you get off the Neurontin you may want to see a lawyer. There's millions in lawsuits against this drug co. for what it's done to people.
Wishing you only the best and May God Bless You!

Sue

Hi Sue, I was on Neurontin for two years before the problem showed up. I did my research, and withdrew from the Neurontin. The problem did NOT go away.

I don't think it was the Neurontin.

My doctor for Epilepsy works with my ordinary Neurologist....all connected to Duke Hospital. The sense is that since I have a host of neurological problems related to autonomic neuropathy that in all probably this is just another piece of that package.

Thanks for all your help.

Hugs, Elaine