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daviditguy

Trying to get off Dilantin

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

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

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

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.

Re: Trying to get off Dilantin

I am on 3000mgs of keppra & 300mgs of Dilantin The dr took me off 100mg of Dilantin 4 days ago I had a panic attack & could not sleep so I took the 100mg Dilantin I hate the way Dilantin makes me feel....so I am goona try again next week I did not have a seizure just felt nervous & scared & no sleep Can someone advise me Plz help

Re: Trying to get off Dilantin

I was on dilantin for 9 years.. went off of it and took lamictal for two years.

the dr said the side effects of dilantin are ..well you know, harsh.  Lamictal made me gain weight, get acme and want to kill myself and I have NEVER been that way.  If you ask me those are worse.  All the side effects i had were cosmetic.. teeth. some hair.. whatever.. stuff that could be helped.   I'm not sure if lamictal was originally intended for epilepsy or bipolar.. but it made me nuts.

I'm switching back to dilantin.  IAs of yesterday... I say pick your poison.  If you want to try others do it up! but make sure you assess and take into consideration two things... the effectiveness of the drug (lamictal didn't work right?) and secondly the side effects you are willing to put up with for the effectiveness of the medication.  they both worked for me and i am not willing to try a new one (at this time in my life) so i'm choosing the lesser of two evils.

but nothing is permanent.  You could always try depakote.. and go back to the dilantin if it doesn't work/side effects are worse. ?

I'm not sure if I even helped but if you try depakote good luck!!

Heath

 

Re: Trying to get off Dilantin

I am trying to get off 100mg of Dilantin I take 3000mg od keppra & 300 mgs of Dilantin the dr took me off 100 mg of Dilantin 4 days age I had a bag panic attack no seizure but scard & nausea no sleep...I hate Dilantin can someone help me Im gonna try again but im scared  Plz advise me thx

Re: Trying to get off Dilantin

Hello, My name is Heidi, I am trying to get off 300mg of Dilantin I take 3000mg of keppra & 300 mgs of Dilantin the Dr took me off 100 mg of Dilantin 4 days age the dr is going to try to take me off 100mgs each month but I had a bad panic attack no seizure but afraid & nausea no sleep after the 1st 100mgs were took out...I hate Dilantin can someone help me I'm gonna try again but im scared  Please help me with some advice.   I am new to this site Plz advise me Thanks I am really scared of all the bad side effects it gives me please help Thanks

Re: Trying to get off Dilantin

I take 3000mg of Keppra & 300mgs of Dilantin  I  hate the way Dilantin makes me feel .....The Dr took me off 100mgs of Dilantin & I had a very bad panic attack, no seizure just no sleep & afraid of everything so I went back on it I am going to try again but can anyone advise me of what happened to them while being weaned of Dilantin Thanks 

Re: Trying to get off Dilantin

Thanks for the info. I was really tricked by my hospital doctor who told me I needed to take Dilantin or else loose my life. I took Dilantin for five days but when I read on the internet about strokes that led to future epilepsy didn't say anything about epilepsy leading to death. I know the hospital wanted me to be released as soon as possible since I didn't have insurance.

While on Dilantin for five days I was only capable of sleeping 12 hours a day and watching tv 12 hours. Three hundred mg of Dilantin had me zonked out on drugs. I'm getting off now and will return to a normal life. If I have to deal with some esisodes of epilepsy I will learn how to deal with them properly.  In no way was taking Dilantin worth all the side effects and the liver danage possible after a while.

Thank you all very much for your experiences with Dilantin versus epilepsy. 

Kdm

 

Re: Trying to get off Dilantin

Having been on and off Dilantin for most of 45 years I can sympathize with everyone's concerns about getting off of it. It has pages of side effects, is tricky to get the dosage just right, and is the gold standard against which all other anti seizure drugs are compared.

What it all boils down to, however, does Dilantin do the best job of seizure control for you and do you have problems dealing with other medication? That is a decision that you and your neurologist have to make.

For me Dilantin has been the most reliable med that I've taken in 45 years. I've never experienced any side effects except when I switch off and then back on again.

For those of you who haven't found your best med yet, keep trying. Just don't drop a med without medical assistance.

That is a potential trip to a grave

Re: Trying to get off Dilantin

Hi david,

I started off on dilantin, and it didn't do anything for me (anything good, anyway). Depakote was added to my mix, and that did the trick. I was taken off dilantin, and had no problems.

I have TLE, so my grand mal's are secondarily-generalized. Theoretically, if you mainly have partials...that may or may not secondarily-generalize...then a med good for partial seizures ought to work. Depakote is used for partial seizures as well as absence. You can read more about it on epilepsy.com

Lord only knows what med will work for you, and what won't. Unfortunately, it's a guessing game. Dilantin can have some pretty crummy side effects that take a while to kick in, so I would try to switch if you can. Best of luck to you!

Heather :)

Re: Re: Trying to get off Dilantin

Hi:
My then Neurologist took me off Dilantin when I was 18 and just beginning University. I never did drugs because of my epilepsy, but boy did I experience withdrawal. I was in such a panic for the longest time. I called my neurologist almost weekly, sometimes daily during that time. I have been off Dilantin for over 30 years. I took Dilantin as a teenager, my then Neurologist was concerned about the side effects it might have had on me. I do not know which was worse, Dilantin and its side effects or the withdrawal from Dilantin.
CG

Re: Re: Trying to get off Dilantin

I used to take dilantin and it didnt work very well so i switched over to tegretol. This is the best working medicine I have used so far.

Re: Trying to get off Dilantin

david, have you had any luck, great insights, results etc. on finding a new med ?

i have been on dilantin, on and off for 30 years, and want to find something else too, if i can find something without the same side effects, etc.
i have things mostly under control but occasionally, about every year or two, have a break through seisure, which you know ain't any fun.

i'm also not as young as i used to be and would like to find something that keeps it under complete control, at least as long as i'm mediucated.

my breakthroughs are beleived to be stress or lack of sleep induced according to the docs, but the thing is they seem to run in cycles which no one i've talked too has any comment on.
like if i have one, or occasionally two in the same day, then i've never had another one for at least 9-10 months, sometimes years.
it almost seems like something builds up that triggers the seisure and then once i have one its "releived" temporarily.

all comments appreciated, on any of these issues.

Re: Trying to get off Dilantin

I was on Dilantin for 35yrs also. My neuro wanted me to come off it because it was such an old drug with so many side effects, but I refused because I thought it helped me. A low bone marrow test opened my eyes and I went to my neuro. First I tried Keppra, that just made me too agitated and nervous so now I am starting vimpat which is supposed to be an excellent new drug. Being on dilantin for as long as I was, my neuro took it very slowly (50mg a week) until I came completly off it. No problems doing it like that! Good luck to you! hope I helped a little

Re: Trying to get off Dilantin

I have been on dilantin and depakote for over 15 years. During all that time, I have been seizure free, but affected by the side-affects of these meds (especially the weight gain, tremors and hair loss of depakote). I have had a few grand mal seizures and several other types of seizures.

Recently a new neurologist I am seeing has taken me off dilantin (gradually) and gradually put me on trileptal. Thus far no significant issues and he is looking at reducing the depakote.

Re: Trying to get off Dilantin

Hi my name is Megan I was on Depakote for 14 yrs no side affects except being a lil sleepy at times. I am being switched to Keppra because of the complications in pregnancy due to depakote incase I decide to start a family. I personally loved Depakote. I just think side affects affect ppl differently. My sis loves Keppra I hate it. My grandpa is on Dilanton and it is the best thing for him.

I really miss my depakote. THere are pros and cons to everything tho.

Re: Re: Trying to get off Dilantin

I`ve been on Dilantin for over 35 years along with Phenobarbital and Mysoline. I am now on Dilantin alone and my seizures (violent Grand Mal) have been controlled for 15 years. The only "noticeable" side effect I have deal with from Dilantin is "lack of sex drive".
Has anyone else had or still has this side effect?
Mike

I`ve been on Dilantin for

I`ve been on Dilantin for over 35 years along with Phenobarbital and Mysoline. I am now on Dilantin alone and my seizures (violent Grand Mal) have been controlled for 15 years. The only "noticeable" side effect I have to deal with from Dilantin is "lack of sex drive".
Has anyone else had or still has this side effect?
Mike

Re: Trying to get off Dilantin

Get off of it as soon as you can and then have your thyroid checked. Dilantin put a cyst on my thyroid and I had to have it checked for cancer. I Never would have found it but I had a seisure in the car and banged my throat and they hadt o check to see if I crushed my larnyx. When I asked my doctor why he didn't tell me Dilatin caused cancerous cyst he said," There isn't any point in telling you because you were off the medication, was it malignant?" I have to go back every year and have it checked. I quote him!

Re: Trying to get off Dilantin

I have been on and off different seizure meds for the last 2 years. I was put on Dilantin last January and have been trying to get off of it since May. I am very sensitive and have to go very slowly. I feel like I have a sick hangover every day, I dont sleep well and I am moody, hostile and very emotional. I was put on the meds because I was having brain surgery and my body freaked out from every one. It has been a total nightmare. I agree.....the side effects of Dilantin and withdrawals are dehabilitating. Good luck out there....I hear Topamax is good. My friend takes it and seem to have no adverse effects. NONE! can u imagine???