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weaning off Dilantin and on to Keppra
Thu, 09/29/2011 - 16:48Comments
Re: weaning off Dilantin and on to Keppra
Submitted by mkfarnam SB Cal on Sat, 2011-10-01 - 20:49
I have to agree with Spike. And not only in "if it works, don't fix it", but also where Physicians and Pharmasist are more concerned about money than they are helping people.
I've had epilepsy for about 50 years. When I was first diagnosed, I was put in a State Hospital for 5 yr's and used as a guinea pig because epilepsy was next to unknown and treated like leprosy. Thorazine was the "cure all" back then.
Back to the issue..
20 years ago I had voilent Grand Mal seizures. So violent that, somewhere along the line I had a seizure and crushed my collar bone. I never knew it was crush until 6 mo's later.
I was on 600mg Dilantin, 120mg Phenobarbitol and 500mg Mysoline per day.(75mg of Mysoline would knock an average person on their ass) I walked, talked and looked like an overdosed drug attic. I was even arrested twice because I looked doped up. All of this together didn't even reduce my seizures
I was sick of make DR's happy and lining their pocket for not doing what they were being paid for. So I spent the next year weaning myself off of Phenobarbital and Mysoline and lowering the dose of Dilantin.
Now I take 400mg of Dilantin a day, and for the last 15 yr's I've been seizure free and no one knows that I'm epileptic unless I tell them. I also have an unrestricted drivers license.
About 6 months ago, my Dr's assistant called me and told me the Dr, said(without seeing me for mo's or taking any test what so ever) that my Dilantin level was too low, you need to double your dose.
I said:
me: How did she(dr) come to that conclusion?
assistant: She checked your chart
me: This dose is working fine. So you tell the Dr, that if she feels she can make more money off her patients with random phone calls and not testing, I think that the AMA,FDA and Medicare would be very interested in hearing about her unprofessionalism. So you tell her that I said to stick her unmonitored advice where the sun don't shine.
PAUSE:
assistant: The Dr, said it's OK to keep your previous dose.
I have to agree with Spike. And not only in "if it works, don't fix it", but also where Physicians and Pharmasist are more concerned about money than they are helping people.
I've had epilepsy for about 50 years. When I was first diagnosed, I was put in a State Hospital for 5 yr's and used as a guinea pig because epilepsy was next to unknown and treated like leprosy. Thorazine was the "cure all" back then.
Back to the issue..
20 years ago I had voilent Grand Mal seizures. So violent that, somewhere along the line I had a seizure and crushed my collar bone. I never knew it was crush until 6 mo's later.
I was on 600mg Dilantin, 120mg Phenobarbitol and 500mg Mysoline per day.(75mg of Mysoline would knock an average person on their ass) I walked, talked and looked like an overdosed drug attic. I was even arrested twice because I looked doped up. All of this together didn't even reduce my seizures
I was sick of make DR's happy and lining their pocket for not doing what they were being paid for. So I spent the next year weaning myself off of Phenobarbital and Mysoline and lowering the dose of Dilantin.
Now I take 400mg of Dilantin a day, and for the last 15 yr's I've been seizure free and no one knows that I'm epileptic unless I tell them. I also have an unrestricted drivers license.
About 6 months ago, my Dr's assistant called me and told me the Dr, said(without seeing me for mo's or taking any test what so ever) that my Dilantin level was too low, you need to double your dose.
I said:
me: How did she(dr) come to that conclusion?
assistant: She checked your chart
me: This dose is working fine. So you tell the Dr, that if she feels she can make more money off her patients with random phone calls and not testing, I think that the AMA,FDA and Medicare would be very interested in hearing about her unprofessionalism. So you tell her that I said to stick her unmonitored advice where the sun don't shine.
PAUSE:
assistant: The Dr, said it's OK to keep your previous dose.
Re: weaning off Dilantin and on to Keppra
Submitted by Kaeli on Fri, 2011-09-30 - 11:47
I would recommend consulting another neurologist to find out if this is a necessary step considering your difficulties. I was on keppra for 4 years, and it did stop my seizures completely, but it did cause me to have some unpleasant side effects, so I am in the process of changing medications right now. Keppra can cause you to be extremely tired and grouchy, so that it probably why you are so sleepy and irritable. Honeslty, that never went away for me. I was bitchy for 4 years...and tired. I slept ALL THE TIME! but that may just me. Everyone is different.
I honestly think you should get a second opinion. I agree with the first person. If it isn't broken, don't fix it. If your liver enzymes look good (and any good doctor should be monitoring them regularly for ALL OF US!) Any medication can cause liver damage from long term use. Our liver filters out foreign toxins.
I would recommend consulting another neurologist to find out if this is a necessary step considering your difficulties. I was on keppra for 4 years, and it did stop my seizures completely, but it did cause me to have some unpleasant side effects, so I am in the process of changing medications right now. Keppra can cause you to be extremely tired and grouchy, so that it probably why you are so sleepy and irritable. Honeslty, that never went away for me. I was bitchy for 4 years...and tired. I slept ALL THE TIME! but that may just me. Everyone is different.
I honestly think you should get a second opinion. I agree with the first person. If it isn't broken, don't fix it. If your liver enzymes look good (and any good doctor should be monitoring them regularly for ALL OF US!) Any medication can cause liver damage from long term use. Our liver filters out foreign toxins.
Re: weaning off Dilantin and on to Keppra
Submitted by Spike. on Thu, 2011-09-29 - 19:50
So your current neurologist's reason for wanting to switch you from Dilantin, to the newer drug Keppra, was because the longtime use of Dilantin can cause bone loss and liver damage. Well, by searching the Internet for information pertaining to Dilantin, the information indicates that the longtime use of Dilantin can also create overgrowth of the gums, excessive hair on the face or body, acne, coarseness of facial features, damage to the nerves in the legs, and so on.
Here are a few questions. For all the years you have been taking Dilantin, has there ever been anything indicating that you have experienced bone loss, liver damage, or anything else stated on the list of long-term causes for Dilantin? Because, if you have not experienced any long-term side effects, and if the Dilantin was working by controlling your seizures, then what's the real reason why your neurologist wants to switch you over to a different medication? If it works, don't fix it. Here is another question. When an individual has been taken to a emergency room because they had a seizure, why are the emergency care physicians still doing what they've been doing for many years, prescribing patients to take Dilantin?
Maybe the pharmaceutical company that manufactures Keppra has offered your neurologist some type of special bonus, where if she sells an X amount of Keppra, she will be given that special bonus.
Bruce (I'm not a doctor, but instead, an epilepsy support group leader, epilepsy advocate, who has epilepsy.)
So your current neurologist's reason for wanting to switch you from Dilantin, to the newer drug Keppra, was because the longtime use of Dilantin can cause bone loss and liver damage. Well, by searching the Internet for information pertaining to Dilantin, the information indicates that the longtime use of Dilantin can also create overgrowth of the gums, excessive hair on the face or body, acne, coarseness of facial features, damage to the nerves in the legs, and so on.
Here are a few questions. For all the years you have been taking Dilantin, has there ever been anything indicating that you have experienced bone loss, liver damage, or anything else stated on the list of long-term causes for Dilantin? Because, if you have not experienced any long-term side effects, and if the Dilantin was working by controlling your seizures, then what's the real reason why your neurologist wants to switch you over to a different medication? If it works, don't fix it. Here is another question. When an individual has been taken to a emergency room because they had a seizure, why are the emergency care physicians still doing what they've been doing for many years, prescribing patients to take Dilantin?
Maybe the pharmaceutical company that manufactures Keppra has offered your neurologist some type of special bonus, where if she sells an X amount of Keppra, she will be given that special bonus.
Bruce (I'm not a doctor, but instead, an epilepsy support group leader, epilepsy advocate, who has epilepsy.)