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Aging and Epilepsy

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Posted 8/27/2006 6:40 PM (GMT 0)

My husband has had epilepsy - grand mal for 54 years, usually nocturnal.  He has started to have break through seizures.  I am wondering if others are seeing this as they get older.  He is rigid about compliance and Dr. doesn't seem to have any ideas other than starting trying new meds.  Husband has been stable on Tegretol and Phenobarbital for 37 years, they are cheap and we hate to start the hassle of new drugs.  I noticed some of you have been diagnosed for a long time.  Are you noticing changes?  Having breakthroughs?

This is my first attempt at this so if I messed up, please forgive me. Thanks for your responses. Cactus

Taking:

Tegretol    200MG  4 per day

Phenobarbital  10 mg 4 per day

Posted 8/27/2006 8:11 PM (GMT 0)
Hi Cactus: When you have been on meds for a long time, sometimes your body gets use to them and than different types of szs start. That did happen to me on tegretol.

Getting off tegretol and pheno are both difficult, I would wean off really slowly and I also used acupuncture to help with the withdrawel systoms.

Best of luck to your husband!!!

Riva
Posted 8/29/2006 12:57 PM (GMT 0)
Hi Cactus

I am 48-years old and have been taking medications since the age of 15. My doctor put me on dilantin and valium, which didn't help at all. Finally I got a second opinion about the meds I was on. They put me on 120mg of phenobarbitol in the morning and 120mg at bedtime. I also have insomnia, so I take Doral, which is a sleeping pill. I have an irritation on my brain that became more irritated. Maybe the phenobarbitol dosage could be raised. This might help, but talk to your doctor about the dosage mixed with tegretol. I tried tegretol and through it down the toilet. I was completely incoherant. Every individual is different, so it is important to discuss every option with you doctor. As far as new products on the market, I hear about more serious side affects than anything. I am pretty nervous about the newer drugs that are coming out. I hope this helps.

Heppy the Eppy
Posted 8/29/2006 1:00 PM (GMT 0)
Cactus,

I apologize for the poor grammar, I am very sleepy while writing this post. (Threw it down the toilet). Wow!
Also when I mentioned that the phenobarbitol could be raised, I meant for your husband. I truly apologize for the errors. I am so drained. Hope to hear from you soon, and good luck.

Heppy
Posted 9/5/2006 2:34 AM (GMT 0)
I am 50 and been on meds since I was 13. I tried them all, but never could fine any that really worked for me. My seizures were getting worse, so thats why I had my surgery and I am feeling alot better. I hope everything works out for you.
Posted 9/5/2006 4:31 AM (GMT 0)
Hi Cactus, confused confused

Re, Epilepsy and aging: I'm 50 yrs old, dx'd with Epilepsy and Ulcerative Colitis in 1979, I'm on dilantin and pheonobarb and it has totally controlled my seizures untill 2002 when I had another GM sz and another in 2004 so it is increasing with age but I've been on these meds for so long that I figure I've been doing pretty good (if it's not broke, don't fix it) and I can I fully expected it to get a little harder to manage as I got older.

 

Now take this for what you think it's worth, (based on personal experience only)I'm not in the medical profession but at his age and all his years on pheonobarb and tegretol, I don't think it would be a wise decision for him to change his meds at this point in his life, especially if they're working "fairly well".

 

That's just my opinion.

 

Randy

Posted 9/11/2006 12:33 AM (GMT 0)
Hi there, my name is Margaret & I have been on meds for about 40 years(I dont know exactly!) & had brain surgery last year ( July ), all went well. I chose surgery over more meds ( as I got older I needed more meds to control my szs ) & I am glad I did!! Have you considered surgery?
Posted 9/11/2006 4:59 PM (GMT 0)

Hi Cactus-

I'm new to the board, but I have had epilepsy since 14 mos. old and am now 50.  I have been on almost all the meds out there, and I know that if you take meds for too long, they stop working or not working as good.  I am currently on keppra, am coming off of tegretol and getting on lamictal.  eyes    Coming off of tegretol is not easy, I am having anxiety attacks. 

But anyways, I would talk to your husband's doc and see what he says.  I have been doing okay, have had some complex partials.  Also, had brain surgery in 1998, and am doing much better.  I am sure as I get older, I might have problems. 

Have you given any thought to veeg?  That's where you are admitted to the hospital and hooked up and are watched on video 24/7.  I don't know if your hubby would want to do that, but maybe it could help?? 

Take care and keep the faith!

Barb

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