Open to Suggestions - Epilepsy Message Board

luv2play747 · 03-23-2006, 10:56 AM

I have been trying to get off of Dilantin. I no longer have insurance and can not afford to take anything. I keep getting a really weird feeling usually hours before I do whatever I do, but this last week, it has been lasting for a few days. I think I had some sort of seizure last weekend, woke up on the bathroom floor and my tongue was bleeding, but I have no recollection of anything other than that. Is there anything to do, will it matter if I just quit cold turkey and get it over with?

Donte · 03-23-2006, 12:31 PM

My suggestion is to NOT get off the med. Try calling the maker of the Dilantin (ask your pharmacist who it is) and tell them your situation right now. I have heard that some of the pharmaceutical companies will send people medicine for free if they qualify and truly need it.

From what you posted, you definately had a seizure. Anytime you wake up on the floor and your mouth is bleeding and you don't recall what happened, you can bet you had a seizure (if you are a known epileptic). It doesn't sound like you can do without the medicine. Please reconsider your decision and call the manufacturer.

Good luck.

Travis from MN · 03-23-2006, 02:26 PM

Dilantin is one you CAN NOT stop cold turkey. I had to reduce it using 30mg Kapseals for reductions (reduced by 30 per week) until I was off my 300/day dose when starting up on Topa.

See if your clinic has Dilantin SAMPLE packs of the 100's and or 50's to give you time to reduce your dose SAFELY **if** thats what your Dr ordered. A lot of clinics do have samples on hand.

I'd personally sugest dropping by 50 or 30 MAX if you have been instructed to get off Dilantin. If you are trying to wean yourself off it to save money, it's not worth the dangers and risks of not being on meds. Talk to your Doc.

If you are doing this on your own, It is VERY risky. Dilantin is not that expensive compared to the meds I am on now (Keppra, Topamax).

--Travis

luv2play747 · 03-23-2006, 02:29 PM

Thanks, I have never had anything like that before. I have had two incidents where I passed out or whatever at work. The ER doctor did EEG but I guess it was inconclusive... I did not bite my tongue or anything then... But I had the same wierd feeling as I am having now, which is a concern...
My dr is on vacation until next week, so I will ask the pharmacist... but by the time I get some, I will be probably be completely off... It was pretty scary. I am torn between having my kids witness this or having their dad take them for a week... I am scared to be alone, but I read on a website that I will be safe, so I think that would be better than having my kids find me on the floor again..

luv2play747 · 03-23-2006, 02:34 PM

My doctor prescribed it, I am sure he would not want me being off it, but it will only be for about another month or two until I get insurance back again. I just started a new job and it is commission only, so I have to take the chance.. I will just be careful of my surroundings to try not to bump into anything if I fall... ]
Besides the increase of seizures, which are bad enough, are there any other side effects that you know of from stopping cold turkey?