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To change meds or not to change, that is the question.

Wed, 01/28/2015 - 16:12

Hello there, I have been diagnosed with Epilepsy for tonic clonic seizures since the age of nine. I was started on Dilantin and when became of child bearing age was changed to Phenobarbitol. I have now been on Phenobarbitol for about 33 years now and have very good Sz control, only having  one Sz about every six to eight years. I am newly establishing with a Neurologist after not seeing one for to many years to mention, primarily because of so few Sz's and my PMD has always manages my meds. Well, my Neurologist wants to change me from Phenobarbitol to Lamectal or Keppra due to the long term complications of Osteoporosis, Liver dysfunction and depression that Phenobarbitol can cause with long term use.  I am not so keen on this idea being very nervous of dealing with new medication side effects and the possibility of triggering a Sz during the medication crossover period. Not to mention my body just getting used to a new AED after all these years. I trust her recommendations and her reasoning but don't really think it is right for me. I have had some minimal testing to see if I am having any of these complications and my tests are negative minus a mild Vit D deficiency that I have been treating for over two years now.

Is there anyone out there that has gone through a med crossover after over 30 years of being on the same med (that is providing what I thik is excellent control) that can give me some advise or information to ponder to help me with this decision making. My Neurologist also wants me to see an Epileptologist at a specialty hospital to help me with this decision. I feel this is a bit excessive and may be costly being that I have controlled epilepsy. Would love to hear from there's in my boat. 

Karen

Comments

I was basically letting you

Submitted by Anonymous on Thu, 2015-01-29 - 11:17
I was basically letting you know that a specialist can help you determine some things. They know more about procedures and medications. They can look closer at things which might help you get and stay seizure free and even be taen off medications. I know what it was like being on medications that controlled my seizures to the point I had had no seizures what so ever for 3 years. Now as for keppra... It is the best medication I have ever used and I have had epilepsy since the early 1960's so I know about seizure medications. I also know I don't like taking meds but it is habbit. Keppra has reduced the number of seizures I was having. It also shortened the time in those seizures. I have had some while in a group talking about projects we were doing and they knew nothing about the seizure.Lamictal is also a good medication. I took it for awhile but I wanted better control. We switched to another med name starting with Zon. I wasn't as good as lamictol. Adfter that we went to keppra and I have been on it for about 12-15 years now. I hope you get things like you want and if the meds are changes or the specialist helps you get seizure free Joe

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