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Vickie
Vickie, Nurse (RN)
Category: Health
Satisfied Customers: 85
Experience:  7 years exp. on surgical floor, plus many other areas, Emergency Medical tech, 19 yrs total medical.
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dilantin..now wants to switch me to another medication due to atrophy

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I have been on dilantin for 47 yrs. My dr. now wants to switch me to another medication due to atrophy. Is it wise to change meds now? I have been seizure free since 91. Will getting off dilantin stop the atrophy in the brain? What will happen if I stay on dilantin. I was told that the atrophy will continue and I will lose balance a lot. I am 58.

DearCustomer


If you have been going to your doctor for awhile, and you trust him, Then I would feel safe in believing that he knows what he is talking about. 47 years is a long time to be on a medication, and there are new and better drugs coming out every day. You definitely don't want your brain to atrophy, that will cause all kinds of neurological problems that will be irreversible. Try the medication. you may find that you feel better than you ever have.


Good luck to you...

Customer: replied 11 years ago.
Reply to Vickie's Post: Thank you for your answer. A recent cat scan that I had does show some atrophy of the brain at the back. Will a different pill stop the atrophy? I was told that if I stayed on dilantin the atrophy could cause balance problems. I guess I am concerned that another pill may not agree with me causing seizures again.
Sincerely, Customer
Customer: replied 11 years ago.
I cannot find the accept button. My reply has been sent. Thank you Vkie for your answer. I do have some atrophy in the back of the brain. It showed up on a recent cat scan that I had. What does atrophy cause? I was told that my balance would be bad. Customer
A different pill may or may not stop the atrophy. This is something your Dr will have to determine via CT scans after you have switched meds and through the course of time.
There are many new medications out there for seziure disorder in the past 47 years. There's Neurontin and Topamax off the top of my head. Topamax has actually been shown to faciliate weight loss as a side effect. I hope this helps :)
Greetings:

I would like to share with you that my husband was taking Dilantin for several years and his doctor switched him to Neurontin - both were bad - but Neurontin was far worse. He continued to have Grand Mal seizures - With many prayers and blessings, he is no longer taking medication for seizures.


I find it very unusual to be on such a drug for as long as you state - and I'm very sorry that you have such a condition. Long term use of Dilantin has been found to cause weakening of the bones. People taking Dilantin should exercise, take vitamin D and eat foods rich in calcium - see the following site for more information: What are the most common side effects of Dilantin? (Basic) : Epilepsy.com


I am fully aware of the experience of seizures - as I have gone through MANY YEARS with my husband suffering (especially when I saved him from falling out a window from a 3 story building. During one of his attacks, he fell and his head crashed through a window). I'm sure this must have been very difficult for you. I am very glad that you have been seizure free since 91.


Regarding atrophy - I would venture to say that it is neurological degeneration affecting the cerebellum.....and this is a condition that is brought about by long term use of Dilantin.


I would suggest that you seek other medical opinions before switching and that you are given appropriate testing, as well.


While it is very important to listen to the advice of your doctor - as I'm certain you have had much faith in him/her, it doesn't hurt to get other medical opinions, especially due to possibly having to make a drastic change after all these years.


However, something more important to be aware of, I strongly suggest that you seek the advice of other medical professionals as I feel that your doctor had you on this medication for too long of a period - therefore, being that I am also a legal secretary/paralegal, this may be possible malpractice -- I have seen such cases - know your rights!


My very best to you.


Bright Blessings.


Peace, Love & Happiness,


The Mystic Wave

DearCustomer


Do not worry dear, your doctor will monitor you closely with any new med that he thinks is going to help you, at the first sign of any problems...if worse comes to worse he will change you back. That is why it is so important to keep in close contact with him and even write down any unusual side effects that you might experience so you don't forget them. I truly believe that he is trying to look out for your best interests, and will keep a close eye on you. He is changing you because he is not liking what he is seeing at the moment, and trying to save your quality of life. I know its hard when you feel as though if it is working...then don't mess with it, but in this case it is beginning to cause some irreparable damage - and he wants to spare you of this. It is still your decision, but I would hate to see you end up that way, when maybe the change of a single pill could stop the whole thing.


Good luck to you, you are in my prayers!!!

Vickie, Nurse (RN)
Category: Health
Satisfied Customers: 85
Experience: 7 years exp. on surgical floor, plus many other areas, Emergency Medical tech, 19 yrs total medical.
Vickie and 3 other Health Specialists are ready to help you
Customer: replied 11 years ago.
Reply to TheMysticWave's Post: Thank you for the information in your reply.

Greetings:


You're very welcome.


Please take care.


Bright Blessings.
Peace, Love & Happiness,


The Mystic Wave


Customer: replied 11 years ago.
How do I get to see the 8 responses? Customer

DearCustomer


Thanks so much for the accept, everything is going to work out fine, and I think you have an "Excellent" chance of feeling tons better because of it! I wish you much luck, and you are in my prayers!!!

Customer: replied 11 years ago.
Dear Vickie
The dr. I am going to now is new to me as the dr. I had been seeing for many years recently retired. I truly appreciate your info as right now I need other opinions. /Thanks again,
Also my sister died of a cerebral hemorrhage in the pons and when I was told I have atrophy in the back of the brain well I am sure you know what I thought of first. Customer

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