Stonewalled again, what else is new? - Epilepsy Message Board

guineapig · 11-12-2004, 04:22 AM

I'm averaging 1-2 seizures a month with my old standby, Tegretol. Usually the absence/'psychomotor'/ TLE variety (blank stare, sometimes hand(s) in repetitive motion, for three minute blocks). Still not driving, which is good, as long as work and the room I rent is still available, and both are in reasonably close proximity for cycling.

Neuro gave me a list of other 'potions' and potion combinations to consider making me a convert to. Tegretol with Keppra as an adjunct, or go to Topamax or Trileptal alone (completely away from Tegretol).

Also the neuro says that there could be residual scar tissue from the original temporal lobectomy (of over 25 years ago) causing the seizures. Then proceeds to tell me how neither an MRI nor a SPECT can be performed to make any notion of a thorough examination along such lines, because I still have metal 'shrapnel' from the original surgery there. I'm thinking about writing a proposal to numerous experimental 'trials' that the NIH has links to, and see if I could find a 'hit' from a hospital/doctors interested in digging out the metal, examining me for scar tissue, and 'zapping' it via gamma knife (if applicable to the results of their findings).

At this point I'm ready to sign away the 'lawsuit happy disclaimers' and take my chances with surgery over drugs. If anyone knows of any university/medical institution/doctors who might be interested, please let me know. I'm ready to 'toss the dice' and deal, without any referral which my neuro is unwilling (and too biased) to give

kayakmom · 11-12-2004, 07:46 AM

Sounds like a good time for a second opinion! I have heard of one adult who did well with NIH. NO other experience, but it is worth contacting them and see what they say!

I am sorry the neuro seems less than helpful! Have you had a VEEG lately to locate where these seizures come from? This could help them see if they are indeed coming from the lobectomy area.

Go for it, try and see what other treatment is out there!

guineapig · 11-12-2004, 04:51 PM

'They' (the HMO Neuro) gave me a thirty minute standard EEG, fast breathing and light pulses. The results say this:

"The background rythum reveals an alpha rythum with a frequency of 8-10 Hz. The amplitude is 30-40 microvolts. There is the expected anterior decrement to the response. No evidencefor any lateralizing features are identified and there is no evidence for any epilleptiform activity seen in the tracing. Hyperventilation is performed but does not alter the background rythum. Photic stimulation results in a well-developed driving response. Interpretation: This is a normal EEG."

After reading this, it tends to make me wonder why I'm medicated for seizures at all! Being axperienced in electronics and ham radio, I DO know what frequency and amplitude means. But what does it mean as far as brainwave activity? The final conclusion would seem to indicate either, 1-Absolutely nothing wrong, EVER, with my brain, or 2-bad timing, the EEG simply did not get a chance to see one of my siezures in action. Is it time for an ambulatory EEG, to catch a seizure 'in the act'?

Do EEGs look for PERMANENTLY appearent signs (indications that are there all of the time) to use to determine the type and severity (if any) of 'epileptiform activity', or must it 'get lucky' and be wired at the same time that one of these abscence seizures (or sometimes, worse) occurs?

kayakmom · 11-12-2004, 07:29 PM

EEGs measure what is occuring right at that moment. It is not too uncommon for someone who has epilepsy to have a normal EEG if there is not a seizure at that time.

The photic and hyperventilation part is normal, meaning these may not be major issues for you.

My son, who started with abnormal EEGs, had a later misdiagnosis at a different neuro who ignored abnormal things he saw, called it abnormal and took him off meds. We are now having to reprove that what we see are seizures. (same exact stuff that a neuro confirmed were seizures and medicated him for.)

We are doing an AEEG right now. I have not heard wonderful things on their success rates, but worth a try.

We also wait for our 4th VEEG...

Hang in there!! Ask your neuro what he thinks about your EEG and why he still wants you medicated....

ZapGC · 01-17-2005, 07:57 PM

Well it took me long enough to write my last post I got logged out so here goes with this one. I have found an interest in stem cell research of late relating to epilepsy as I believe that the true reason that 911 happened in 2001 is because bush broke the tree of life by outlawing stem cell research. With this knowledge I have found a site on-line that discusses using stem cells successfully for other neurological disorder at [url]http://www.stemcellresearch.org/[/url]. Hopefully this will be a step in the right direction for you they have some people who have went 5 years without their disorder that are related to the same chromosome 6 that epilepsy is related to so maybe you'll have luck here. I must say though be careful on this topic as just like a couple hundred years ago this is one portion of research the church is not supporting. This bothers me for a few reasons so I'll interject them here as well as the other places i've talked about them. First off the AMA would love for everyone to believe that stem cells can only be taken from aborted babies however they can also be taken from umbilical cords without injuring anyone. This abortion thing is how Bush and the AMA have stopped research in the field. [url]www.morrow.org[/url] is using the stem cells from umbilical cords right now not sure what else is going on out there. I have no problem with abortion being illegal I do have a problem with it being legal to kill babies but not legal to heal people with disabling diseases. My take on the whole I hate the AMA, FDA, Bush administration thing for now... May we all feel loved by God even when "The Church" has deemed us unfit for heaven despite the fact that they most likely know Christ was stricken with an illness very similar to this they'd rather see him hang on the cross longer than admit that we now know what the people of his age didn't and that's that we can truely fix this. Guess they really do want to see the world end the way the bible says in the new testament. May we all meet in heaven and laugh at the hippocrits.