Weaning off Phenytoil (Dilantin): Has anyone successfuly done this??

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Clover

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GBM brain Cancer 2011, three years Cancer free and no treatments. Have been on Dilantin since, and I'm wanting to get off! Doctor is telling me this is not an option due to the negative repercussions. I have only seen one or two people talk about this happening, and they basically did it alone. I did find medical research (will share with my doctor) stating that it is possible with the right 'program'. ALSO, have any women out there had a healthy child while using Dilantin? I am on a fairly low dose. Sadly for my doctor, I am not giving up on this. The long term effects of this medication is not good and frankly a little frightening. PLEASE HELP... any replies would be helpful. THANK YOU :comp:
 
Hello, Clover. Yes, I had to wean off of Dilantin. I was told to slowly drop my dosage about every 2 weeks, I recall (my dose was 340mg/day).
I had been taking Dilantin for 25 years. My neurologist replaced it with Vimpat because of the osteoporosis risks. I am still taking Topamax, which I began when I started having complex partial seizures.
I had both of my sons while on it, & took Topamax as well while pregnant w/ my second. Both of them are healthy. I've been on folic acid since I started taking AEDs, & during both pregnancies, my doctors raised my dose from 1mg to 4mg/day.
 
Thank you for your reply, and I'm happy you were able to get off of it. I was hoping I would not have to move to another medication for this however, and my doctor is not giving me any options at all. As for the childbirth, I have had men reply, but no women have shared that they had problems or healthy children while they were pregnant and beyond. It's not very comforting. Thanks again!!
 
There are far better meds. for epilepsy. Withdraw very slowly. If not you are very likely to seize. I have permanent damage to all of my teeth, still having grave difficulty with lymphatic enlargement, and I stopped taking this drug over two decades ago. Out of all remaining anti-epileptics that have been tried dilantin has the worst side effects, and there are so many others that can be used without damaging your body. Lamictal is the easiest on the system, but does not work with all seizures. I have introduced this med. to a variety of epileptics and all of them were helped. Used to work in a pharmacy.
 
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I agree with what you are saying. The only reason I probably didn't have any issues with Dilantin was the low dose I was taking (340 mg/day). If I took more, I would feel very heavy-headed--I literally couldn't lift my head. I am also a milk & cheese lover, which may have helped offset the osteoporosis risks somewhat.
 
Dilantin was the first med I was put on after my initial seizure. I weaned off of it (under my neuro's supervision) over a period of about a month, just to see if my initial seizure was a one-off. (It wasn't.) I went back on it, but then tapered off when it started to affect my gums. I'm now on Lamictal, which has worked well for me.
 
In my case, Dilantin was the 3rd major AED I was placed on--after Tegretol & Phenobarbital. I took Primidone or Mysoline for some time w/Phenobarbital, but neither helped.
 
Thank you for your reply Mari! I am in Canada, and I don't believe we have access to all of the same medications. I have not been diagnosed with epilepsy, however I had a brain tumour and 1 grand-Mal seizure just after radiation and chemo. My doc is asking me to chose between two newer meds, as he's saying Dilantin is an older drug. He still insists that the drugs would have negative effects for a growing child and I should not try. I do plan to discuss this with my other doctor (5 hrs from here) and we meet in October. Thanks you again!
 
Oh, Lamictal is available in Canada.... will research and discuss with doc. I'm curious wy it was not offered to me, maybe it's only for epileptics? Thanks again!!
 
I see Lamictal is a better medication, however it is still harmful to a growing fetus. I understand they likely ALL are, which is why I'm trying to get off completely. I had one seizure 6 yrs ago, and I am not Cancer free. I just want off, if possible!
 
Hi Cover I live in Canada too...smile. Vancouver, BC. Grew up in Ontario.
 
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Dilantin is generally the first medication tried for seizures in Canada...It was discovered in 1937/38. Bad, bad stuff.
 
At the time I was placed on Dilantin, simple partials were the only type of seizures I was regularly having. Tegretol had been given due to 3 or 4 tonic clonics 30 years ago (none since).
 
Clover, I know that the cancer you have can cause seizures. I know a lady who has gone through the same thing as you: brain cancer, seizures. Her neurologist put her on Lamictal right away. She has been seizure free ever since...smile,
 
Fellow Canadian! Where in Ontario did you grow up?
I did research the Lamictal... sorry but it does not seem any better once I researched it.
I guess the fact is they will all have bad effects... I never had another seizure after the first one... so the Dilantin did work, but I really hope I can get off completely.
I want to have a baby. I'm 43... not sure it will even be feasible. :\
 
I weaned off it. It was many years ago. It is possible. Any chance of getting a new Dr.?
 
Thanks!! Did you wean off to another drug, or completely off?
Did you also have a GBM brain tumour?
 
I have epilepsy, but I can't see why anyone couldn't wean off of it.
 
Well, my tumor was in my left temporal lobe and apparently my grand-mal seizure occurred in the same area. This was docs concern about never getting off it (or any other seizure med). He knows I want to/plan to tho so he told me if we try it I won't be able to drive for a year for safety precautions. That stinks as I lost it twice already and fought so hard to have it back. I love driving sigh... There's also a good chance now that I will never have a child too.
 
I made the decision not to drive when I was only having simple partials. I still recall the day. I had one right before my last behind the wheel practice in drivers ed class. Now with the complex partials that I get being so unpredictable, I'm glad that I don't despite the inconvenience.
 
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