Feeling shaky, waiting, hoping

This Thursday I am going in to the University of Maryland Hospital for an inpatient EEG study, possibly lasting a week. I’m nervous, hoping they’ll find me answers, afraid they won’t, afraid that if they do find answers I won’t like them. . . .

I was diagnosed, almost two decades ago with–provisionally–atypical epilepsy. This was long before any vertigo; I would periodically dissociate, for maybe a minute or two, and then be more-or-less out of it for several minutes, retaining no memory of the episode unless told of it. Sometimes, before the dissociation, I’d notice I was losing it. They tried various drugs, but nothing eliminated this. Finally, they settled on carbamazepine, a.k.a. Carbatrol/Tegretol, which seemed to keep it down to some degree. I’ve taken it for well over a decade–and spaced out over the course of the period.

Then, a few years ago, along came an acute MAV incident, followed by many, many months of being knocked for a loop by vertigo, brain fog and all. Finally the MAV was diagnosed, and between the Hain diet and 75 mG of daily nortriptaline I am usually pretty clearheaded and nonvertiginous unless the weather’s changing. But there’s still the dissociative episodes.

I’m hoping hoping hoping that my neurologist, Dr. Alan Krumholz of U. MD’s Epilepsy Center, will be able to finally get a clear EEG associated with one of these episodes while I’m under observation, and come up with a solution that’s more reliable. At the doctor’s suggestion I haven’t taken the carbamazepine since last Wednesday, toward that end. I believe the medication change is a major reason I’m feeling particularly shaky. This year has brought a lot of additional stressors, but they hadn’t actually brought me to feeling like this, as though I were sometimes shaking inside.

If Dr. Krumholz is not able to take me further, I guess my next step is to revisit my neurotologist, Dr. John Carey at Johns Hopkins, and ask him whether these could in fact be an atypical form of migraine reaction rather than of epilepsy, and what else to try.

On the other hand, the list of U.S. MAV docs drew my attention. Are any of them particularly adept at differential diagnosis where some symptoms say “MAV” and others say “seizure disorder”?

Thanks

Hey there,
I was wonderig how they expect you to quit a med that you have been taking for a lengthy amount of time without a slow decrease? It seems that any med that would affect your brain, could have the potential to send things spinning…so to speak.
Weren’t you on topamax at one time and it was doing well?
I hope you get some answers…best to you…
Kelley

I know that sense of being in limbo between wanting answers but not wanting the ‘wrong’ answer.

All I can say is that you are doing the right thing by going in for more testing. It sounds like they have you lined up for extensive tests. Probably the shakiness is a combination of the change in meds plus the anticipation of further testing (I have that reaction personally).

My guess is that if it was something really serious you would have been more symptomatic and it would killed you by now, I don’t say that as a joke, I really mean it. The more likely scenario is that they give you some vague answer that doesn’t really help eliminate the problem.

Wishing you a good time at UM, it actually sounds kind of interesting.

Thanks, Kelley, Longshort.

With my doc’s okay, I had lowered the dose from four to one 200 mG tab daily a few years ago, with no ill effect. So when my doc suggested stopping the remaining tablet, I didn’t think to ask whether I should cut it in half or whatever. We tried an in-hospital EEG study many years ago, and they didn’t get clear-enough readings for a definite diagnosis, which I guess is why my doc finally settled on a drug that seems just somewhat helpful. (We had tried quite a few others.) It’s also why he suggested I go cold turkey for a week before the study starts.

Meanwhile, my sweetie and I talked about the preparation days and decided on minimal driving, no work with dangerous tools, . . . I’m not even going to send a follow-up email to an editor whose magazine I’ve been trying to land as an outlet. I may yet drive to the pool today, just because exercise seems so important for physical health and sanity.

Longshort, I’m not afraid they’re going to find some horrible brain growth, but that they won’t nail down a solution to my spacing out. This means no children, because our situation is such that I’ll have to be the primary caretaker. It means no next career of teaching, either classroom or seminars. Probably no next career of inspecting. It means no return to performing bodywork. Because of a necrotic hip, I’m going to have to stop supporting myself primarily as an electrician and electrical writer, which I’ve been doing since 1980. So the outcome of this study could affect how I reestablish my identity, in a number of ways.

Hi David…my sister had this study done last year in Charlottesville at UVA hospital. It was very helpful as she had been having “silent seizures” for awhile…periods of time where she would lose time with no memory of her actions… She too had to titrate her meds down and wu hen she entered the hospital epilepsy unit…she essentially waited while they waited and watched with cameras throughout her room. When she finally had a grande mal seizure…the area of the brain where the seizure occurred was documented and a lot of valuable information was obtained. Since then, her meds have been tweaked a bit and she has had no seizures, silent or otherwise since… She is however taking a pretty hefty cocktail of lamictal, topamax and another med which escapes me at the moment… Her dr at UVA is dr Fountain. She was also at Hopkins for a number of years but switched to UVA as it was a bit closer to her home. I wish you the best with this study and hope that your oytcome is positive and treatable as was my sister’s… PM me if you have any questions…I wish you all the best!

Hi David

Good luck with the study. I sincerely hope it brings you some answers. I’ve always appreciated your posts so much - your sense of humour especially. Let’s hope it’s payback time and something good comes back to you in a karmic sort of a way - something like news that will make a positive difference to your future lifestyle. All the very best, our thoughts will be with you…

Brenda

David,
when do you find out the results?
Kelley

David, I hope everything turns out good for you. I got you in my prayers!

Greg