A Hamster's Tale : My VEEG Journal

[AlohaBird]

The belt was an annoyance the first few days when nothing was happening but it was good to have the last two when I had seizures. These were more intense than the ones I usually have had for the past 5-10 years.

I haven't had two nights in a row since back in the "bad old days" just after college when I was partying like a fiend.

My thanks to everyone who has participated in the thread. The hamster was finally sprung yesterday and got 12 hours sleep in her own bed next to the best dog in the world.

My house sitter thought it would be a nice welcome home present to come back to a clean house. Either that or he couldn't stand it that grubby anymore. In any case it's clean and smells lovely.

I have an appointment with my Hawaiian healer this afternoon. Then more sleep.

 

[Blonde Angel]

Glad to read you are back to your paradise, it would be a relief after all that "torture".
Well I call it "torture"..

 

[AlohaBird]

Sleep deprivation is recognized as torture under the Geneva Convention.

 

[gbpackerfan]

Hey Alohabird,
So when do you meet with your neuro to go over the results? I'm sorry you had two seizures in two nights but I'm also glad that you had two of them recorded. So, even though it's all in your head, it's not "all in your head".

 

[AlohaBird]

I saw him briefly before I checked out but my brain was pretty mushy at that point.

Both the "events" they got on camera and EEG recording were full tc grand mals and definitely not of the P.N.E.S. variety.

The doc couldn't really tell me if I have apnea or not. He said there is a separate "sleep study" that is done specifically for that purpose. I think they could have done both at once but would rather get twice the money for two tests but that is just my suspicious mind.

I did quiz the two techs who sat at the cameras on the night shifts about apnea and they hemmed and hawed and basically said they can't tell me anything because that would be "diagnosing" and they are not doctors. Sigh. The Catch 22s of life.

I may get the "sleep study" done as soon as I am up for it.
I've begun my gradual step back of my Valproic Acid with no ill effects. We'll see how that goes.

My next neuro appointment is in January by which time I should be off the VpA.

 

[AlohaBird]

The other reason the doc thought getting off the Valproic Acid first would be a good idea is because it has a shorter half life than the phenobarbitol so any withdrawal issues I might encounter will be over with sooner.

Five nights in, at the 25% reduction level, and sleeping great. I'm off to see my healer again this afternoon.

I'm starting to feel right again.

So what was accomplished? I'm doing the same thing I was doing before, experimenting with a gradual medication step back but now I'm doing it with an official sanction / blessing of a neurologist.

My next door neighbor is retired from a very lucrative career developing medications for big pharmaceutical companies. He told me today that the standard industry practice when determining what will be the officially recommended dose of a new medication is to draw the line so that 90% of the population at large will be receiving at least the amount they need if not more.

He said that individuals vary widely in how they metabolize any give med for a huge list of reasons including age, weight, body composition, gender, ethnicity, activity level, other meds in the mix, other medical history, stress, diet, and just plain personal variations.

But if 90% of the people are getting enough or more of a medication, that means that a lot of people are being over-medicated. The trick is finding out where you are within that 90%.

My neighbor says that his personal policy is to take whatever his doctor gives him and then titrate back to the lowest effective level. He said he is only taking 15% of the Lipitor that he was prescribed.

Interesting information from inside the pharma industry.

 

[Pinkattitude]

He said that the bone density issue is much more common with phenobarbitol ...

Yikes! I've googled phenobarbital long term effects before and never found this. I've been on mebaral and then phenobarbital (they are cousins) for 50 years. The switch to phenobarbital was 30 years ago when they stopped producing mebaral.

Thanks for mentioning this.

 

[truegrit]

Thank you so much for this thread. I'm heading in for my first VEEG on the 7th and I was wondering what to expect from the viewpoint of someone who'd been there. The "event" was probably my biggest concern,because let's face it tonic clonic seizures are no fun.
I am curious though did you have any more seizures shortly after you returned home?