luv2play747
03-23-2006, 01:56 PM
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?
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Donte
03-23-2006, 03:31 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.
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, 05:26 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
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, 05:29 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..
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, 05:34 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?
Besides the increase of seizures, which are bad enough, are there any other side effects that you know of from stopping cold turkey?
Travis from MN
03-23-2006, 05:35 PM
When adjusting Dilantin it takes about a week for the Dilantin levels to stabalize. That may be why if you are not taking a regular dose you could be feeling "odd".
--Travis
--Travis
luv2play747
03-23-2006, 05:44 PM
I noticed the same feeling a few hours before the last times I had a seizure, but this time it is gone on for more than a few hours. If I end up going cold turkey, will that intensify the seizure or just how often? I have only had two prior to the weekend, but many unexplained instances of winding up on the floor and not knowing how i got there. I just don't know anything about seizures, not really sure what is going on...
luv2play747
03-23-2006, 06:01 PM
I tried to find who manufactures Dilantin but coul dnot find it on the web. DO you have aa ny idea who does? I think youu are rihgt about cold trukey, i will take some wh en I get hoem.
Travis from MN
03-23-2006, 06:29 PM
Pfizer is the brand name Dilantin. (clear Kapseal with a red stripe for the 100mg)
There are also generics. (purple and white capsul is one I had)
Talking to a nurse at your clinic may be your best bet... see if you can obtain some samples of Dilantin.
You are going to be feeling like a yo-yo... You may end up being shipped to the emergency room and shot up with Dilantin as they have done to me (1800, or 2100mg by IV drip in my history). The mega-dose of Dilantin is NOT enjoyable. It effected a few of my senses.
--Travis
There are also generics. (purple and white capsul is one I had)
Talking to a nurse at your clinic may be your best bet... see if you can obtain some samples of Dilantin.
You are going to be feeling like a yo-yo... You may end up being shipped to the emergency room and shot up with Dilantin as they have done to me (1800, or 2100mg by IV drip in my history). The mega-dose of Dilantin is NOT enjoyable. It effected a few of my senses.
--Travis
Discododi
03-23-2006, 08:39 PM
Hi Luv2play,
Please call you doctors office and explain you are having some difficulties with your meds right now. Many times Docs have samples they can give you. This would help until your new insurance kicks in and you can get your meds again. It is worth a try.
Please don't quit cold turkey. It doesn't work well with these meds.
Take Care, Dodi
Please call you doctors office and explain you are having some difficulties with your meds right now. Many times Docs have samples they can give you. This would help until your new insurance kicks in and you can get your meds again. It is worth a try.
Please don't quit cold turkey. It doesn't work well with these meds.
Take Care, Dodi
luv2play747
03-24-2006, 12:17 PM
I had that mega dose once, I know what you mean, my head felt like it was full of pingpong balls... I woke up again on the floor last night a few hours after I got home from work, beginning to worry me a bit more. Feel a bit loopy today. That is twice in less than a week... Luckily my kids were not home, I don't want to freak them out. I will try to find out something on my lunch break. I don't want my boss finding out, I have only been here for 3 weeks. I will look up Pfizer and see if they can help. I only have 6 pills left so I am running out of time. If I take my normal dose, it will last two more days, I guess I will try to stretch it through the weekend. Maybe I can get in touch with my doctor when he gets back Monday. No one is answering the phone cause he is still on vacation.
Thanks for the help...
Thanks for the help...
Donte
03-27-2006, 04:39 PM
Hi Luv2play - Any word from the doc's office? Just curious if all is well and if they are going to work with you on your situation.
luv2play747
03-28-2006, 11:18 AM
My dr got back from vacation yesterday and said that he didn't have any smaples of Dilantin, but is working on getting some. Strongly suggested I go to the ER, but that would just add another bill I could not pay. My insurance starts Apr 1... I will just have to try to make it until then. Spent the whole weekend and yesterday in a headspin... Between feeling really dizzy to throwing up, only worked 1/2 hour before I had to go back home to bed. Only 4 more days until I have insurance and counting... I am hoping to make it a few hours today and then go back home. I have to try to balnace how i feel with being bale to drive the 2 miles back to my house somewhat safely. If I can't, I have to stay put until I can.
Thanks
Thanks
Travis from MN
03-28-2006, 01:25 PM
Please don't drive if you are feeling like that!!!!!
Your safety and for your kids is too important! There any Transit you can use?
--Travis
Your safety and for your kids is too important! There any Transit you can use?
--Travis
luv2play747
03-28-2006, 03:32 PM
We only have taxis, can afford to do that, I am careful as tho when I drive. I didn't go anywhere all weekend cause I knew I couldn't drive anywhere.
If it were warmer, I would ride my bike, it is only 2 miles, but I am more afraid of doing that.
If it were warmer, I would ride my bike, it is only 2 miles, but I am more afraid of doing that.
bryan916
03-28-2006, 04:10 PM
You really shouldn't be driving if you are having seizures. I know when I had my first seizure, my doctor immediately sent a request to the DMV to revoke my license. From what I understand, and maybe it is just state law (California), you need to go 6 months without a seizure before a doctor will give clearance for you to drive again. It might be different for you right now, since you don't have insurance and are not under medical supervision, but you really shouldn't be driving if you are having seizures. Just like Travis said, for your and your childrens safety, please don't drive until you have your seizures under control. Also consider the safety of others on the road. If I had a seizure while driving, especially if I wasn't supposed to be driving in the first place, the last thing I would want to wake up to is the thought that I might have injured or killed someone else on the road.
neurowreck
03-28-2006, 07:18 PM
Parke Davis makes Dilantin- see if they have a patient assistance program to get you your meds- you have to meet certain financial guidelines, and they don't care if you have other medical expenses. You can also try online foreign pharmacies...I'm using one now. I still can't afford the generic neurontin (same ones who make Dilantin make the real Neurontin), but I've been able to get some help through a generic assistance program. I'm not sure if it's ok to list it, but if you private message me, I'll get you their name....generics are better than nothing- if you've been on generic Dilantin - you should be ok....a lot of people have trouble with generic Dilantin if they've only used the brand stuff. Most AEDs don't make that much difference, but Dilantin definitely does.
luv2play747
03-29-2006, 11:16 AM
I don't drive when I feel bad, I wait wherever I am until I feel up to it. I know it is dangerous, but I have to get food for my kids. I have not driven over 3 miles from my house. I have looked in to the drug assistance, but it takes a few weeks to take effect. I had another seizure yesterday evening. I am averaging one almost every other day, quite different then 3-4 per year. I have a dr appointment Monday when my insurance kicks in, I have a few more days of hell until hopefully things will get better. I have a friend coming down this weekend to keep an eye on me, which I hate, but feel I need. If anything happens, he will make sure I am safe... He can drive, too...