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Re: subthreshold epilepsy and stuff » Lorraine

Posted by Elizabeth on June 12, 2001, at 2:09:35

In reply to Re: stuff » Elizabeth, posted by Lorraine on June 11, 2001, at 21:32:01

> > > Yeah, I have given up on the SSRIs, only had a partial response and a lot of side effects.
> >
> > Hmm, is that better or worse than no response and no side effects? :-)
>
> I believe it's worse because you stay on the horse too long following a blind alley.

Hmm. How about a partial response and no side effects (except very minor ones)? (Parnate)

> No, it's Cylert (pemoline).

Cylert! I took a small dose for a while in college, and it was surprisingly helpful. I feel like I should revisit it. It's very long-acting, and smoother than other psychostimulants. Its pharmacologic mechanism of action is unclear. It actually helped me get (and keep) my sleep-wake cycle back in sync with the rest of the world, because I would take it every morning and feel more alert, and then start to get tired in the evening as it wore off.

> Say have you heard anything about a time release Adderral?

Controlled release Adderall? That would be quite a task, and probably not worth the money and effort.

> > methamphetamine
> > (good luck)
>
> Actually, it's my pdoc that suggested it. So I can get the prescription.

That's impressive. Pdocs hate to write for that one. I would expect it to be safer and more tolerable than dextroamphetamine, because it has a more favourable ratio of central to peripheral effects.

> The question is whether I want to try it or not. In my past (long ago far away--like 30 years ago), I abused drugs. But I was never addicted and I don't think I have an addictive personality generally.

Hmm. How do you define "abused?" (Believe it or not, the American Psychiatric Association has attempted to come up with a rigorous definition, although most psychiatrists seem to ignore that definition when they label patients "substance abusers.")

> The question is whether it would be a good drug to try. I think I've read about energy depletion or something like that with it.

Well, I don't know if the sustained-release formulation ("Gradumets") is still made. You might get a lot of highs and lows in energy as one dose wears off and then another starts to work. It's a pretty short-acting drug (I'm not a big fan of those; I want to be able to go about my business and not have to worry about my medication wearing off every few hours).

> > Moclobemide? Jeez. I assume you're not in the USA. If you are, it's a waste of your energy (IMHO).
>
> I am in the USA. My pdoc writes a prescription that is then filled by a Canadian pharmacy and mailed to me.

Huh. My impression was that the by-the-book way to do this involved a lot of red tape and hassle, so I never considered it an option (especially since I didn't even respond completely to the irreversible nonselective MAOIs). If it's just a matter of finding an amenable Canadian pharmacist, though, it might well be worth it. How much does it cost? (I'm pretty sure my insurance won't cover prescriptions that are filled outside the USA, especially for drugs that aren't even approved here.)

> Right now all of these pharmaceutical experiments are on hold while I try Neurofeedback to see if I can stabilize some subthrehold seizure-like activity that is probably causing my physical anxiety.

That's interesting. I have had several EEGs that showed no or little sign of anything being wrong in that department, but I had a SPECT scan which suggested...umm, it's not clear what it suggested, but it was definitely weird.

I hope your experiment does some good. I would like to hear about it. (As with all things, I'm curious how (or if) it works.)

> I don't have epilepsy, but I suspect the approach is the same--train the person to narrow the volitility and variation range of alpha, beta and theta brain waves.

Those refer to different combinations of amplitude and frequency: for example, theta rhythm refers to low-amplitude (voltage) and moderately high-frequency (fast) waves.

> My pdoc is a neurologist. His reading of my QEEG confirms the reading at EEGSpectrum--namely that I have a lot of spiking activity, one or two out of range spikes every 14 seconds. Those spikes destabilize me, impacting my memory, my autonomic functions (physical anxiety)and generally wreak havoc in the brain. EEGSpectrum believes that this is why I am treatment resistent.

Yeah, I got the same line about my SPECT. < g > I did get my medical records -- finally -- and plan to call up a neurologist I know to see if he can determine the clinical relevance, if any, of the abnormal SPECT scan.

> Of course, my pdoc is trying, without success so far, to treat the problem with anti-convulsants.

Isn't a lot of that due to intolerance of side effects? Which ones have you tried so far?

> We really do not know a lot about the brain right now.

Yeah. I'd sure like to know a few things about mine, in particular. < g >

Again, good luck with the neurofeedback.

-elizabeth


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