[TooBlue]

Hello.

My wife has hydrocephalous due to malfunctioning shunt.
She developed a seizure disorder almost 10-11 years back about the time she got her decompression surgery for chiari malformation.

It has taken almost a full 10 years to get a combination of seizure meds to control her seizures. It has been very hard to control since they are possibly from the inttracranial pressure as well as damage that was done prior to her emergency brain surgery , and also possibly from her central apnea, which makes her sometimes stop breathing and or become oversaturated with CO2 and then stop breathing and a seizure will begin.

So it makes sense that if you don't know the exact cause , it may be harder to figure out how to medicate for them.

Anyway after sevarl Drs. basically gave up on seizure med combinations , and she had mini strokes , and severe memory loss periods on and off for the last 10 years. A year ago and another Dr. ago , we were allowed to try different combinations and dosages of the three seizure meds that she had.

One was not an actual seizure med (clonazepam) , but was all we had on hand since noone would prescribe anything that we were told should be available when these things took off on her. It was used when a seizure started even though she had a regular constant amount of tegretol and neurontin in here blood , to knock it out and stop it from becoming a full blown grand mal , which she had too many of in the past before we learned about these meds.

This last year was the firt year in 11 years that she has not had any mini strokes or memory loss due to seizures as we finally were allowed (after drs. gave up) to figure out what the best dosage and schedule was for the tegratol and neurontin.

Thing is it just can't stop the central apnea, and she developed pseudo seizures as well, which can turn into just as bad of a full blown seizure as any other one.
Any way we always had her clonazepam on hand as she did have anxiety and alot of stress just from being so screwed up fopr so long

The only insurance is medicaid, and her seizures, and central apnea that can bring them on , can really come around quite often when the weather starts to change or if it gets rainy etc., due to changes in barametric pressure which in turn affects intracranial pressure in certain people.

Here's the problem.... with the increase in the frequency of seizures, she has required more than two ofb the 2mg clonazepam per day that medicaid draws their limit at. They will not cover any more than two 2mg tablets per day for a patient.

This most recent Dr. (we don't think) has obviously never explained anything to medicaid about the clonazepam being used for seizures. When they recently got very low and we tried to get them refilled and medicaid refused, the Dr. came up with a new combination for her rather than even go with valium or something else that she has used with success before. He now wants her to go on dylantin in place of the clonazepam , along with her neurontin and tegratol.

We are completely ready to get a new Dr, and not only over this, but close. This shunt has needed maintained every since she became his patient, yet he for some reason, has never gotten her into her neurosurgeon to have the thing revised which pust a stop to the majorty of all of this to begin with.

We have been to world reknowned NSGs and seizure experts in very well known popular university hospitals, who never knew any better combination for the seizures than what we were able to come up with , out of what was available.
I believe the reason is as I exoplained earlier, multiple causes of the seizures.

She is on other meds besides these too, to help with the excess CSF she can not gte rid of with this poorly working shunt. Diamox, lasix, reglan for nausea, even comtinuous birth control pills since this stopped the great grand mals she used to have as soon as the menses began. She is on pain meds also.

What good is it to go to a new combination of seizure control meds with nothing to knock them out when they do happen any more?

We just can't get over this decision. We have had a very hard time over the yeasrs with very similar situations and Drs. refusing to ask our neurosurgeons for help, advice , or even verify what we passed on about her need to go back on diamox, etc.

We have had tghings as bizarre as Drs. ripping off a CPAP from her face in the ER, when her vocal cords were paralyzed , saying "she doesn't need that!" and having to prove then and there by forcing a "room full" of air out of her abdomin right 8in front of them, and watch their eyes almost fall out of their heads, and tell us to put it back on and storm out , tell, the nurse to tell us to stop c\bringing her to their ER!

This is 1 out of literal 100s of events.

We just don't need to start more nightmares all over again from yet another Dr. wanting to try different things out because he has never heard of this, and will not call a neurosurgeon to verify what we already know.
Or it could be another thing we have experienced many times. He , or his staff does not want to deal with medicaid and would rather drop her as a patient or just hope they can guess their way into something different working or convincing us to find a new Dr. and getting out of their hair. We have lost at least 3 Drs. over stafff persons not wanting to deal with mediacid problems alone.

Any help / info any one can give us about this dylantin , neurontin, tegretal combo can give us would be great. It was explained to us that they would be checking levels in her blood after she got started on it, so I don't feel there is any way it could be used o give here when a seizure begins, like valium, clonazepam , etc.

Thanks for wading through all of this, and I am sorry for the length. It's just very hard to accurately explain this without explain why all of this very strange combination of things go on with here, as well as our situation.

Thanks again.