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Long Term Dilantin use
Mon, 08/09/2010 - 22:53
I have been on epilepsy medication for over 40 years. I was originally started on the drug phenobarbatol and then later in life transitioned to only Dilantin.
I have been on Dilantin for over 20 years + now and last year my neurologist said I was suffering from the effects of long term Dilantin use.
I would like to hear from other people with similar stories (I am new to this site)
Basically, my problems were as follows:
In 2009, I had extreme back pain and lethargy- I was sent to a back surgeon who then again referred me to a neurologist after a cat scan. The neurologist indicated that my PTH (parathyroid) levels were abnormal and I had osteomalcia.
The neurologist worked to change my medication at first to Keppra, then to Epilim. I had seizures on Keppra and Epilim caused too many side effects. The end result was being put back onto Dilantin over a 6 month period of time. Now I am back on Dilantin with Calcium and Vitamin D supplements. Seizures are ok but I am still worried about the long term effects of Dilantin.
Generally, my quality of life is ok. I am married and can drive. My concentration is not the best. I am not sure if Dilantin affects my sleep (I get up around 4 to 5 times a night) so I wonder if my lack of concentration is due to the lack of good sleep or the long term use of Dilantin.
Has anyone else experienced these symptoms?
Comments
Re: Long Term Dilantin use
Submitted by Jpmanuel on Tue, 2010-08-10 - 01:11
Hi Kay,
I have been fortunate that in all my years on Dilantin I never had any gum or mouth issues. I forgot to mention that I have idiopathic Epilepsy and my Gran Mal seizures have mainly been controlled by Dilantin. The only other issues that I can report is lack of sleep (get up around 4-5 times a night) which has a big impact on my energy levels. I never had any skin rashes that other people report as well. I wish I were able to increase my concentration levels. I don't know if this is because of lack of sleep or side effects of Dilantin. I would give anything for a good night of rest without having my sleep interrupted.
Hi Kay,
I have been fortunate that in all my years on Dilantin I never had any gum or mouth issues. I forgot to mention that I have idiopathic Epilepsy and my Gran Mal seizures have mainly been controlled by Dilantin. The only other issues that I can report is lack of sleep (get up around 4-5 times a night) which has a big impact on my energy levels. I never had any skin rashes that other people report as well. I wish I were able to increase my concentration levels. I don't know if this is because of lack of sleep or side effects of Dilantin. I would give anything for a good night of rest without having my sleep interrupted.
Re: Long Term Dilantin use
Submitted by carden on Tue, 2010-08-10 - 12:10
JP,
I was on Dilantin for 20+ years for gran-mal seizures. I took care of my gums and teeth and had little problems. I began having auras, with seizure activity a few years ago. My Neuro believed it was because I had developed a resistance to Dilantin. He weaned me off of Dilantin and moved me to Keppra. I am taking Keppra and Lamictal 3 times a day. No gran-mal seizure activity in 3 years.
The vitamins are a good thing because of bone loss from Dilantin.
Here's my story if interested with more med details. http://my.epilepsy.com/story/991301
Good luck
JP,
I was on Dilantin for 20+ years for gran-mal seizures. I took care of my gums and teeth and had little problems. I began having auras, with seizure activity a few years ago. My Neuro believed it was because I had developed a resistance to Dilantin. He weaned me off of Dilantin and moved me to Keppra. I am taking Keppra and Lamictal 3 times a day. No gran-mal seizure activity in 3 years.
The vitamins are a good thing because of bone loss from Dilantin.
Here's my story if interested with more med details. http://my.epilepsy.com/story/991301
Good luck
Re: Long Term Dilantin use
Submitted by kay69 on Mon, 2010-08-09 - 23:49
I'm glad I got off dilantin but I was on it for the better part of 10 years in my teens and early 20s. I know osteoporosis is a well-documented effect of long term use, and it can coarsen the facial features. My vitamin D levels have crashed in recent times, and while long term AEDs in general can do this it's been suggested that my time on dilantin as a teenager is a contributing factor. I take a mega-dose Vit.D tablet once a month now, that seems to be working. I had a bone density scan done and thankfully that's OK. These drugs can catch up with you years down the track. Hopefully taking the vit.D and calcium will prevent any more damage for you, and you didn't mention it but are your gums OK? That's one side effect you need to look after via a dentist- no point losing your teeth if it's avoidable.