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Re: subthreshold epilepsy and stuff » Elizabeth

Posted by Lorraine on June 16, 2001, at 11:36:01

In reply to Re: subthreshold epilepsy and stuff » Lorraine , posted by Elizabeth on June 12, 2001, at 2:09:35

> > > > 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)

Partial response is a problem for me.


> > 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.


OK, then it definately goes on the "to try" list.

> > > methamphetamine
> > > (good luck)


> > 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.")

Actually, I just messed around and took a lot of drugs for a couple of years in my teens. Shot speed for a month or two. The drugs I took depended on who I was around at the time and what was available.

>
> > 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
> 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.)

It was very easy to do and I have the name of the pharmacy if you need it. They just put a copy of the prescription in the package that they mail to you. It can get stopped at customs if the pharmacy forgets to put a copy of the prescription in the package. When this happens, the package is returned to the pharmacy and they put the prescription in the package and remail. No a big deal, but can cause a time delay. The cost was about $1/pill. I was taking one pill a day. So it really wasn't bad. Even on the doctor's end, it's easy. They just make out the script and the client faxes it to the pharmacy. I suppose the doctor call the pharmacy and establishes his credentials before using the pharmacy for the first time.

> > 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.

Who did you SPECT? Do you still have the "pictures"? Have you seen the images at thebrainplace.com? Or in Amen's books? Seems like you could match them up. He is pretty clear about what brain activity means what diagnosis. Amen is going to do a study with EEGSpecturm (the neurofeedback place I go to). He is going to do the SPECT before and after treatment. Sounds cool.

> 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've been to 5 sessions so far. After a couple of sessions I fell into what felt like an unmedicated depression (pretty low). I'd discontinued my lightbox about a week earlier and replugged it in that day to see if it might lift my spirits. (I really don't know if the lightbox worked. I'd decided it didn't when I left it unplugged.) At my session that day, they adjusted the dials on the brain machine (actually increased the voltage on the band of beta I was working on) and I left the session feeling really good. It lasted all that day and the next day. I was pretty excited. Then yesterday was a bit flat. (but then I was feeling over-stimulated and cut my med dose back slightly.) So, it's too early to make any judgments. Maybe the moods were affected by the feedback or maybe it was the lightbox or maybe just my mood modulations. They were not suprised that I was experiencing all of this upheaval and would make adjustments session-to-session depending on how I was feeling.



> > 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.

Yeah, I know, but I can't keep the terms in my head. It's like I'm allergic to these high tech words.



> > 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.

It's really hard to separate fact from fiction in this stuff. It's all so experimental. (although lately, I've been feeling like drug therapy is experimental. You roll the dice and hope it comes up with your number.)

>
> > 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?

Depekote--really slammed me down sedation wise. Lomictal just made me feel wierd and uncomfortable. Now it's Neurontin. There are others to try, but I don't want a lot of cognitive side effect (because my cognitive abilities are weak due to the depression anyway).


> Again, good luck with the neurofeedback.

Thanx.


Lorraine



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URL: http://www.dr-bob.org/babble/20010612/msgs/66726.html