Help me? Treatments that Worked for you

Re: Help me? Treatments that Worked for you

Submitted by 3Hours2Live on Sun, 2010-11-21 - 05:11

Hi Caboose, I've had simple partial seizures (SPS) all my life. The worse ones usually come in clusters about once a month. As I aged, complex partial seizures (CPS) became more common in the clusters. Then in my mid 30's, secondarily generalized tonic-clonics (TCs) became more and more common during the clusters, until they became life threatening in my 40's, and I was put on Anti-Epileptic Drugs (AEDs) again after severe head injuries from strong TCs at 53. Very brief atonic events (absences?) are also common, mainly noticeable only in dropping heavy items, or "impaired awareness" short gaps in recorded events. The only AEDs that I tried that worked are Dilantin and Keppra, but they only prevented the TCs, and had minimal effect on the CPS, with no effect on the SPS. Dilantin was stopped over bone loss, and since I usually get plenty of warning of impending possible TCs, I take minimal regular Keppra as a daily residual, and with any warning of a TC, then I take an immediate large dose of Keppra. Regular Keppra works fast enough, with a short half-life, to have stopped impending TCs for about 20 months now, with minimal intoxication during the minimal usage periods. The minimal residual Keppra seems to be important, because during a Medicaid snafu on refills, I had a 7 day gap in Keppra about 2 weeks before a set of clusters, and besides withdrawal effects of "jumpy eyes" trying to read or watch anything closely and very vivid and sharp dreams during the 7 days, the CPS in the clusters when they struck were much stronger despite being back on Keppra and with the warning's stronger dose, but with no bad tongue bites or severe bruises and injuries with a TC. Being on a zero-carbohydrate diet back in my mid-20's seemingly stopped my simple partials and clusters, but bouts of hypoglycemia were difficult to prevent, and diet health problems and diet expense stopped me from continuing the diet after the desired weight-loss and body-mass ratio was achieved. My seizures slowly returned to their "normal" pattern after stopping the expensive diet. I tried all types of nutritional tricks with minerals, herbs, vitamins, etc., but none of them worked, and many seemed to make the intensity of seizures in the clusters worse. St. John's Wort worked the best for the after effects of TCs, but photosensitivity was a problem with it. I can't stand the smell of marijuana, and I've never tried it. If I had the resources, I might try the length of day as a factor, since my biological day seems closer to 25 hours than 24 hours, and being totally out of sync, or in sync, every 30 days or so, might "explain" my clusters of seizures. (My clusters don't stay in sync with the moon, tides, magnetic storms, etc.). I've had better luck with aversive, Pavlovian, and Operant conditioning in moderating the prior and after effects of seizures, but the seizures themselves seem to be totally immune to behaviourism techniques, whether to prevent, stop, or start a major seizure itself. Seizures seem to be functional in inadvertent conditioning, and if conditioning results in micro-seizures, epileptic kindling and learning might be different views of the same thing. Many of my SPS seem to aid in learning new things, while CPS have more haphazard effects, and TCs are near exclusively aversive in the type of conditioning resulting. I'm still tempted to play with Persinger's "God Helmet", to see if it could be exploited in conditioning/extinguishing "kindled" seizures. Tadzio