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Epilepsy from Neurocysticercosis contacts please!

Wed, 12/31/2014 - 11:51

Hello my name is Leon, I'm 25 and I'm from Australia. I contracted Neurocysticercosis when I was 14 from SE Asia. When I was diagnosed I was kept in the infectious diseases ward for 3 weeks whilst they killed the parasite with medication. I cannot remember what the medication was. I had 9 tonic clonic seizures that year.

 
I now have epilepsy...I've had 3 tonic clonic seizures in the last 4 months and I have been experiencing simple partial seizures for about 2 years now, they are quite frequent, sometimes daily and I have had up to 10 in one day. It is simply life ruining.
 
I have not been taking my Epilepsy medication now for about 6 months as I cannot handle the side effects. I have tried various different ones such as Dilantin, Tegretol, Epilem and various anti depressants. I have been researching alternative medications, some they have legalized recently in some states in America that are completely stopping epileptic seizures with minimal side effects.
 
I have applied for trials and sent all the right people my expression of interest, I have even sent in a terminal illness treatment form as my seizures untreated can potentially kill me.
 
I am looking for others that have had Neurocysticercosis and epilepsy that I can talk to, to help me have a better understanding of how to deal with my Epilepsy.
 
Please email me or message me on facebook. Any help will be greatly appreciated, thank you.
 
Leon James Cooper
leonjc89@gmail.com

Comments

Your wepilepsy does not

Submitted by Anonymous on Mon, 2015-01-05 - 11:06
Your wepilepsy does not necessarily come from Neurocysticercosis. It might have had some effect tho. You do need to get with your neurologist and see what other medications there are that can help control your seizures. The medications you listed have been good but there are more out there that help control seizures with fewer side effects. I know that because I have been on almost every medication out to control seizures. Keppra is becomming the go to medication for epilepsy and seizures. It reduces the number of seizures and well as the time in them and time to get back to normal.Discuss this issue with your neurologist because as you posted it can get worse   my seizures untreated can potentially kill me. Start with discussing this issue with your neurologists and other doctors yo uhave and let them know ALL the medications you are taking. I say that because one medication can counter another. My PCP will not prescribe medications at times until he finds the medication that will not counter my seizure medications or heart medications. The same with my neurologist and cardiologist. I hope this helps and you get the assistance you need Joe

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