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  #1  
Old 08-31-2018, 04:22 PM
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Bad Dilantin side effects due to "Old School thinking"neurologist set in his ways


I had a grandmal sezure back in 1979.
To make a long story sort, after several testers, my neurologist put me on DILANTIN and phenobarb and have been on the same thing ever since but over about the last 10 yrs or so, the side effects have been "killing me".
My neurologist refuses to address these issues and says "it's a side effect of the Dilantin and I had to "live with it",

He is set in his ways and refuses to change my medication because he said that Dilantin has been around the longest as an antiepileptict drug and is the best one out there .
He told me that if I were to change meds, I could have more seizures and more frequent and more severe.
He had me TOTALY believing this.

Meanwhile, over the years, I've heard from so many Doctors, Lab techs, other ppl on this board, etc. That there are so many other anti-epileptic drug's out there with little or no side effects and good seizure control.

My question is, Does anybody out there know of any anti-epileptic drug that can control seizures AND REVERSE MY CURRENT damage that has been caused by the long term use of Dilantin?

My current neurologist has been retired for about a year and I don't see my NEW neurologist til November and I'd like to have something to suggest to him.
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Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
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  #2  
Old 09-01-2018, 05:53 AM
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Hi RanMan,

I've been on Mysoline (primdone) for at least 30 yrs. if not longer and I know when I went off the drug for a short time the seizures increased.
I'm surprised that your body hasn't gotten used to the Dilantin to the point where it doesn't work anymore, this is what happened to me when I was on Depakene for over 15 yrs. My advice to you is to have your Dr. do a DNA test on you. All they do is draw some blood and they can see the amount of enzymes in a persons liver along with their body chemistry and they take that info and match it up to the best seizure med for a person with the least side effects. I had this done after trying over 10 different meds and my Epileptologist found out I was drug resistant to all seizure meds out on the market now.
I wish you the best of luck and May God Bless You!

Sue
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Old 09-01-2018, 01:28 PM
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Hi. I took 340mg Dilantin/Phenytoin/day for over 25 years--my neurologist had me drop it due to the possibility of osteoporosis.

I am taking 400mg Topamax/Topiramate along now with 300mg Zonisamide. I've tried EVERY anti-epileptic drug out there for simple and complex partial seizures. Many of them I was allergic to. I still get breakthroughs--1 to 3 a month--despite being on these high doses. It's almost as if after a short time my brain becomes "immune" to the new anti-epileptic drug.
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Old 09-02-2018, 12:15 PM
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You have every right to decide what goes in your body. There are a lot of options now.

Definitely tell your doctor how you feel about your side effects and that you want to try something new. A good neurologist will be open to the possibility and will be willing to try something else. Things might get worse side effect wise before they get better, but if you don’t try you wont know. You might end up having some seizures before you get things worked out, but you might be better off in the end. Usually what they do is keep you on your present meds until you are on the full dose of your new ones.

I would advise against asking for a particular med, but you can “express interest” in one after the conversation has started. (I say this from experience.)
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Old 09-04-2018, 09:45 AM
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Topamax
Topiramate
Tegretol
Vimpat
Keppra
brivaracetam
Klonpin (not a direct anti-epileptic drug)

The list can go on and on. How many drugs have you tried, how many Doc's have you seen..?

Id keep trying others, the ones you are on are for numerous issues and roughly came out in the 1970's.

I do believe there are better ones to try
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Old 09-04-2018, 11:36 AM
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My wife was on Dilantin for too long herself and was suffering severe side effects from over-sensitivity to it. She was weaned off of it and now takes different meds. She still has issues with her balance/coordination, but nearly as bad as when she was on Dilantin.
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Old 09-04-2018, 04:40 PM
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Here's a list of what I've been on:

Tegretol--SEVERE allergy
Phenobarbital
Primidone
Mysoline
Dilantin/Phenytoin--took for 25+ years
Neurontin
Depakote--allergy
Keppra--SEVERE allergy (stomach cramps)
Topamax
Lamictil--felt a rash like the one Tegretol caused breaking out, stopped after 3 days
Vimpat
Zonegran/Zonisamide (recently switched to it due to insurance)


Currently on 400mg Topamax & 300mg Zonisamide/day, along with 1mg folic acid. I still average 1-3 breakthroughs/month.

Last edited by Sabbo; 09-04-2018 at 04:42 PM.
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Old 09-07-2018, 11:43 AM
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Bad Side Effects from Dilantin.


Hi RanMan,
Is Dilantin sodium valproate. Like you I was on sodium valproate for 30 years. Sodium valproate was first introduced in the 1970's I took it in 1983. Because I had no seizures the medical profession did not ask me if I wanted to come off it. What about my quality of life? I think my GP practice was more willing to consider this but my mother did not want me to go to the yearly check up in case the strength would be put up.

I have to repeat what a previous post said. No-one can tell you what to put in your mouth. That is pure arrogance. It is your body, your decision.

The previous neurologist that I consultant kept telling me in a letter that there was an alternative to trying another one - to go back to sodium valproate - even though I had been taking it for 30 years. I did have a big seizure in 2012 while led to an increase in this anti-epileptic drug and that started all the side effects. I know this happened as my body had got used to the medication. Does the medical profession not know this or is it "out of sight, out of mind". Some of the neurologists still only think of being seizure free. That is not the only thing. A persons quality of life. There is a website on this but as I am a neubie I am unable to post it.

I can't say that it is old school as the neurologist I saw - and he was a Specialist in Epilepsy - was about in his early 50's. Or perhaps you think that he is old school. Don't these medical people have to keep up with their research so that they are better able to help people. New GPs who have just come out of their 2 years of training have to.

I am unable to help you with the reversing of current damage due to long term use of dilantin I think it is best you wait for your appointment with your neurologist. I am currently seeing a new one as the previous one did not help me. I could even say that I wish that I had never consulted him the first place.

Ask him straightaway about reversing your problems. Make notes to take with you into the appointment. I have done this as I forget words and get nervous. I wish you luck.

Debbie


Originally Posted by RanMan View Post:
I had a grandmal sezure back in 1979.
To make a long story sort, after several testers, my neurologist put me on DILANTIN and phenobarb and have been on the same thing ever since but over about the last 10 yrs or so, the side effects have been "killing me".
My neurologist refuses to address these issues and says "it's a side effect of the Dilantin and I had to "live with it",

He is set in his ways and refuses to change my medication because he said that Dilantin has been around the longest as an antiepileptict drug and is the best one out there .
He told me that if I were to change meds, I could have more seizures and more frequent and more severe.
He had me TOTALY believing this.

Meanwhile, over the years, I've heard from so many Doctors, Lab techs, other ppl on this board, etc. That there are so many other anti-epileptic drug's out there with little or no side effects and good seizure control.

My question is, Does anybody out there know of any anti-epileptic drug that can control seizures AND REVERSE MY CURRENT damage that has been caused by the long term use of Dilantin?

My current neurologist has been retired for about a year and I don't see my NEW neurologist til November and I'd like to have something to suggest to him.
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Old 09-07-2018, 11:50 AM
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Hi RanMan, Dilantin is phenytoin. I am English and living in the UK. I have been told by my new neurologist (and I have seen it written on a website) that phenytoin should only be taken for a few years. That is why you have got the damage due to this anti-epileptic drug. Your new neurologist should know about this. Please tell your new neurologist that you want to/have to come off it and perhaps quote this. I don't know if the USA knows this but we definitely do.

Debbie
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Old 09-07-2018, 12:44 PM
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Long term use of Dilantin can cause osteoporosis. That's why my neurologist had me drop it, & add Vimpat. I was surprised that they hadn't done it sooner.
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