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Trying to get off Dilantin

Thu, 01/26/2006 - 11:28
I'm trying to replace Dilantin with some other med that will have less side effects. The doctor tried Lamictal and it didn't work. Then I found out it wasn't really indicated for grand mal seizures. !#%!! Now my doctor wants to try Depakote. Can anyone give me some insight on changing drugs? Should I just stick with Dilantin because all these drugs have side effects that are just as bad? Thanks

Comments

Re: Trying to get off Dilantin

Submitted by kdm on Sun, 2013-01-13 - 18:08

I am very concerned about Lantalin. I was hospitaled two weeks ago with a stroke defined as bleeding part of the left side of the brain. Five days ago I was given a 300mg of dilantin each night. I was told by my doctor if I did not take this medication I would die. When I was hospitalized I did not have insurance.

The day after I started delantin I left the hospital. I found when leaving that the delantin has negative effects on my behavioral. As a result I was told not to return to the hospital because of the way I acted in the emergency department.

As a total I've taken the Lantalin for five days. I want to take 200mg a night for five days, and 100mg a night for five days until I stop Lantalin entirely. After that if I have any signs at all of epilepsy I will go to a different hospital as necessary. If not I will stay without Lantalin.  Please advise me of my plans, thank you.

 

 

I am very concerned about Lantalin. I was hospitaled two weeks ago with a stroke defined as bleeding part of the left side of the brain. Five days ago I was given a 300mg of dilantin each night. I was told by my doctor if I did not take this medication I would die. When I was hospitalized I did not have insurance.

The day after I started delantin I left the hospital. I found when leaving that the delantin has negative effects on my behavioral. As a result I was told not to return to the hospital because of the way I acted in the emergency department.

As a total I've taken the Lantalin for five days. I want to take 200mg a night for five days, and 100mg a night for five days until I stop Lantalin entirely. After that if I have any signs at all of epilepsy I will go to a different hospital as necessary. If not I will stay without Lantalin.  Please advise me of my plans, thank you.

 

 

Re: Trying to get off Dilantin

Submitted by rebmil on Sun, 2013-01-13 - 21:09

Hello. I started to have seizures in my sleep 4 years ago. I was first put on Dilantin 100 mg 3 xaday. Dr. changed it to 2 xaday. Then my insurance changed the med to Phenytoin the generic brand. After a year of taking the pills, I decided to get off them. So I weaned myself off them by myself. I went through withdrawl symptoms. I know many people will say that it was dangerous for me to wean myself off my pills by myself, but I really did not have a choice. I lost my job and could not afford the meds anymore. Plus I wanted to get off them too cuz in my opinion, seizure meds are BAD and cause more problems than they are worth taking. They cause memory loss, mood changes, personality changes, depression and other mental problems. I would rather have seizures than take seizure meds.

The reason I got off the meds is cuz I was experiencing memory loss. The pills were also affecting my personality negatively. I also have sometihing wrong with my stomach and they were making the nausea I feel almost everyday worse. 

Right now I take no seizure med. for my seizures. I have a seizure about once a month. My last seizure was on November 28, 2012. I have noticed after I have a seizure, for about a week or so, I also have auras. I have the icky feeling aura where this icky feeling like a hot flash comes over me and travels from my head down my body to my feet. My hearing sometimes goes muted and my vision goes tunnel vision. I think weird thoughts but I don't remember what they are. The last seizure I had in November, the auras were more intense than ever before. One time when I was taking a bath, the left side of my body felt a tempature drop. The left side of my body felt cool in the water compared to my right side which felt the regular temp. of the bath water. Very weird feeling. Later that day, the left side of my face felt numb and felt like it was melting. Very weird as well.

I see red colored sparkly lights behind my closed eyelids almost every night. I have also had the smell aura where I smell this sauce cooking. The last time I had that aura, I had a seizure. I also have the thought aura where this thought of you're going to have a seizure pops in my head, and that night I have a seizure. 

I have grand mal seizures. But I only have them when I am sleeping, never awake, and I only have them about once a month. But like I said, I would rather have seizures than take the pills. Seizure meds are bad and they cause memory loss and a host of other problems as well.

I can't really tell you what other pills you should take for your seizures. They are all bad in my opinion. Talk to your dr. Maybe you can try a natural pill or even talk to your dr. about medical marijuana. I have read a lot of info. that weed helps people with their seiuzres. There is alot of info. out there that says it is good or it is bad. So I can only tell you do research and talk to your dr. 

I don't know if I will ever go back to taking a seizure med. The two meds I took Dilantin and Phenytoin were not good for me and caused memory loss. 

Well I hope this helped you. Take care.

 

Hello. I started to have seizures in my sleep 4 years ago. I was first put on Dilantin 100 mg 3 xaday. Dr. changed it to 2 xaday. Then my insurance changed the med to Phenytoin the generic brand. After a year of taking the pills, I decided to get off them. So I weaned myself off them by myself. I went through withdrawl symptoms. I know many people will say that it was dangerous for me to wean myself off my pills by myself, but I really did not have a choice. I lost my job and could not afford the meds anymore. Plus I wanted to get off them too cuz in my opinion, seizure meds are BAD and cause more problems than they are worth taking. They cause memory loss, mood changes, personality changes, depression and other mental problems. I would rather have seizures than take seizure meds.

The reason I got off the meds is cuz I was experiencing memory loss. The pills were also affecting my personality negatively. I also have sometihing wrong with my stomach and they were making the nausea I feel almost everyday worse. 

Right now I take no seizure med. for my seizures. I have a seizure about once a month. My last seizure was on November 28, 2012. I have noticed after I have a seizure, for about a week or so, I also have auras. I have the icky feeling aura where this icky feeling like a hot flash comes over me and travels from my head down my body to my feet. My hearing sometimes goes muted and my vision goes tunnel vision. I think weird thoughts but I don't remember what they are. The last seizure I had in November, the auras were more intense than ever before. One time when I was taking a bath, the left side of my body felt a tempature drop. The left side of my body felt cool in the water compared to my right side which felt the regular temp. of the bath water. Very weird feeling. Later that day, the left side of my face felt numb and felt like it was melting. Very weird as well.

I see red colored sparkly lights behind my closed eyelids almost every night. I have also had the smell aura where I smell this sauce cooking. The last time I had that aura, I had a seizure. I also have the thought aura where this thought of you're going to have a seizure pops in my head, and that night I have a seizure. 

I have grand mal seizures. But I only have them when I am sleeping, never awake, and I only have them about once a month. But like I said, I would rather have seizures than take the pills. Seizure meds are bad and they cause memory loss and a host of other problems as well.

I can't really tell you what other pills you should take for your seizures. They are all bad in my opinion. Talk to your dr. Maybe you can try a natural pill or even talk to your dr. about medical marijuana. I have read a lot of info. that weed helps people with their seiuzres. There is alot of info. out there that says it is good or it is bad. So I can only tell you do research and talk to your dr. 

I don't know if I will ever go back to taking a seizure med. The two meds I took Dilantin and Phenytoin were not good for me and caused memory loss. 

Well I hope this helped you. Take care.

 

Re: Trying to get off Dilantin

Submitted by debdub on Sun, 2009-02-22 - 23:03
Hi, David, I've been on Dilantin for about nine years after a single grand mal seizure. I recently saw a med specialist who said I need to get off of it ASAP, as its harmful effects are usually worse for women. Many docs still think it's the best, but it's an older med. I'd been taking 800 mg. Dilantin for well over a year, suddenly had level spike to 27 and was a total zombie. Went down to 700 mg, still feeling crappy, now also going through some withdrawal, I think. BUT, I'm also more mentally clear than I have been for a while. It may be different for me, though, as my issues are with a brain growth (cavernous hemangioma) that bled, rather than ongoing seizures. Definitely taper off slowly as you introduce a new med; wish it were a simpler process. The med specialist is a psychiatrist who was looking at my overall usage — thyroid, antidepressant, cholesterol-lowering med, anxiety med — as I'd like to get rid of as many as possible. He was awesome, and had some great ideas. Might be worth a shot for you. Best of luck.

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