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progressive myoclonic epilepsy

Mon, 05/22/2006 - 14:14
my son is 14yrs old and was diagnosed with progressive myoclonic epilepsy in november.havew since then been trying alternative medicine as side effects in conventional drugs are horrendous.has anyone else went down this road?

Comments

Re: progressive myoclonic epilepsy

Submitted by cjcurls on Fri, 2006-05-26 - 12:30
Fiona, I have tried "natural" medications to no avail. I am currently med free & feel better right now than I did when suffering the ill-effects from the medications that were perscribed by my doctors. My thought - PME is progressive. No one can tell you how long each stage will last so there's no telling how long a medication will work - Meds may work for a bit & then suddenly not work. It's a difficult decision to make. My prayers are with you. - Christine

Re: progressive myoclonic epilepsy

Submitted by Dan Marple on Sat, 2006-05-27 - 13:35
Hello My type of epilepsy is generalized. At one point in my life I went off meds (depakote) for a week. I didn't have any seizures and I was becoming alert every passing day that my meds blood levels decreased. I did eventually go back to medications but it made me wonder if I was being overmedicated because I was a healthy person.I wondered: Would having the occasional seizure have been so bad when I could recover so quickly? A couple of years ago when I was on next to no meds under a doctor's supervision I had a seizure but recovered within hours of having that seizure. The medication I am on now (Tegretol) doesn't have any apparent side-effects and the doctor's graph on his computer, which he showed me, indicates that I am at the lowest levels of medications I can be. Sometimes when a person is experiencing side-effects to a degree that they are more disabling than the epilepsy itself it may be time to start talking to the doctor or looking at alternative therapies. It is up to the individual to decide for themselves because it is their life.

Re: Re: progressive myoclonic epilepsy

Submitted by judyh on Sun, 2006-08-06 - 21:02
Fiona Contact me at jshodges1@hotmail.com My daugher has Unverricht-Lundborg disease,a PME. Judy

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