Dilantin

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Bre

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Hi. I was referred to this forum form several other ones dealing with specific medications and withdrawal. Today, I wondered if being on Dilantin from the age of 14 till 27 for supposed psycho-motor seizures could have help contributed to later difficulties (yes, a long med chart)? If the medication itself, as well as the
long terms "effects" from having taken dilantin might cause all kinds of "symptoms"? Any thoughts, experiences and suggestions about where else to look would be greatly appreciated. PS Yes diagnosed with gum disease and osteoperosis early on....
 
Hi Bre,
Welcome to CWE! Just like you I've been on Dilantin but it was yrs. ago when I was a kid for absence and complex partial seizures.
All together I've been on at least 10 different seizure meds then my Dr. did a DNA test on me to find the best seizure med for me with
the least side effect and that's when he found out I was drug resistant to all seizure meds that are out on the market now so I was told
to start using cbd oil (med. marijuana) and to my surprise that has helped me more than anything.
You may want to ask your Dr. to do a DNA test on you all they do is take some blood and get some salvia from your mouth and
all of that is sent to the lab where they can see the amount of enzymes in your liver and your body chemistry then the Dr. can
match that up to the best med for you.
I wish you the best of luck and May God Bless You,

Sue
 
Hello. I was on Dilantin ages ago--when I only had simple partial seizures. My max dose was 340MG/day. Anything higher made me very heavy headed. Even that didn't fully control the seizures. One reason my doctor changed it was the effect it has on your bones.

23 years ago, I began having complex partials in addition to the simple partials. I, too, have tried every AED out there. Now I'm trying 200MG/day Xcopri--I think it's the newest one-- in addition to 500MG/day of Zonisamide. So far, I'm doing okay.
 
All medications have the potential to cause long-term effects. Sadly, there's not always a lot of studies for people that have taken these medications for long-term.

I strongly believe any seizure medicine can contribute to later difficulties in life. Many pharmaceuticals have side effects to them and not everyone is affected the same way.

It might help others if you say what you have experienced while on Dilantin. Maybe someone could relate better if you said you had worsening bone issues or organ problems or insomnia or something? You don't have to, but it is a thought.

I took Dilantin in high school, but it was only for about 3 months because it didn't work by itself and it wasn't working with Lamictal, either. Lamictal also didn't work even though I took it for 4 years...

I sometimes wonder what being on Keppra for 10+ years has done to me...it works for me with minimal side effects and kept me seizure free for 10 years at one time. I am sure it hasn't gone without it's effects, though. It does sap folate so I wonder what other vitamins it saps from me. I've had severe iodine deficiencies.
 
Thanks to everyone for posting. Very helpful. Best wishes.
 
My wife was on Dilantin for close to 20 years. Aside from the teeth/gum issues, it has really messed with her balance. Luckily, she has really strong bones. :)
 
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