Doctor wants him to switch from Dilantin to Lamictal

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My husband is 37 and has been on Dilantin since he was 12 . His seizures are under control but his doctor has ordered a MRiIto check for Cerabellum(spelling?) shrinkage and a bone density test. The Dr. says of there is evidence of damage, he wants my husband to switch to Lamictal. MY concern is if there is damage what will this mean? and If he does have to switch meds, what is the process for that? it seems a little scary to me, with the possibility of seizures until meds are stabalized. How long does it take? What about work? the children?

Comments

Re: Doctor wants him to switch from Dilantin to Lamictal

Submitted by Sincereply on Wed, 2008-06-11 - 21:52

See the thread Had to go off Dilantin or search via my name.

Re: Doctor wants him to switch from Dilantin to Lamictal

Submitted by roxibaby16 on Thu, 2008-06-12 - 10:54

HI i've had to change medications several times in the past 5 yrs so email me and i will explain everything. i know alot for my age.

my email is princessroxstar1991@yahoo.com

HI i've had to change medications several times in the past 5 yrs so email me and i will explain everything. i know alot for my age.

my email is princessroxstar1991@yahoo.com

Re: Doctor wants him to switch from Dilantin to Lamictal

Submitted by coolcanadian on Thu, 2008-06-12 - 11:08

Hi Melissaa,

my neuro switched me over to lamictal from dilantin over three years ago. I had become irritable with wide, rapid mood swings among many other side effects. The change over took me four weeks. My neuro started me out on the very lowest dose- 25mg, while leaving the dilantin at 300mg/day. The next week I went to 50mg/day and dropped the dilantin to 200/mg a day and so on. I've had a few minor side effects, but nothing like what I had been going through. It may not have saved my marriage, my job or my friends, but life for me has improved greatly. If you would like, send an e-mail to mcollins6@sympatico.ca.

Best of luck,

marko

Hi Melissaa,

my neuro switched me over to lamictal from dilantin over three years ago. I had become irritable with wide, rapid mood swings among many other side effects. The change over took me four weeks. My neuro started me out on the very lowest dose- 25mg, while leaving the dilantin at 300mg/day. The next week I went to 50mg/day and dropped the dilantin to 200/mg a day and so on. I've had a few minor side effects, but nothing like what I had been going through. It may not have saved my marriage, my job or my friends, but life for me has improved greatly. If you would like, send an e-mail to mcollins6@sympatico.ca.

Best of luck,

marko

Re: Doctor wants him to switch from Dilantin to Lamictal

Submitted by eaglefan30 on Sun, 2009-09-20 - 12:35

i was change for Dilantin to Lamictal and felt 100% better in like just a few days... i do know that over time that Dilantin does stop working so it might be a good thing to change so that the meds do stop sorking and then u will have more prombles. so that might be why the dr want to change the meds... good luck on it and let us know how he does

Re: Doctor wants him to switch from Dilantin to Lamictal

Submitted by jmd2007 on Sun, 2009-09-20 - 13:47

I had my first seizure about 4 years ago. I switched from Dilantin to Lamictal about three years ago. My neuro was concerned about the long term effects of Dilantin (although, what medication doesn't have long term effects?). Anyway, we made the switch. I don't remember how we did it, but I know we stepped down from the Dilantin while stepping up to the Lamictal. Once I was off the Dilantin, I was on 300 mg daily of Lamictal. I ended up having another seizure (my 2nd) shortly thereafter, which we attributed to the transition. A year later, I had another seizure (my 3rd), so we increased the dosage to 400 mg daily. A few months later, I had another seizure (my 4th), so we increased the dosage to 500 mg daily.

So far, I've had the four seizures, and my last one was a year and a half ago. It took a while to get the dosage to the right level (I'm hoping 500 mg is the right level), so you will have to be careful when your husband makes the switch. He could have seizures again because of the transition or because the new drug will require a higher dosage than you needed before, although he may not have any seizures. It is, I'm sorry to say, a bit of trial and error. But hopefully you'll get to the point where his seizures are controlled. It unfortuately takes some time, so you'll have to adjust and make sure you're prepared. People need to know about the switch and the possibility of seizures, especially his boss and your kids, so they won't be caught off guard. As long as you're prepared, you should be okay.

All the best.

I had my first seizure about 4 years ago. I switched from Dilantin to Lamictal about three years ago. My neuro was concerned about the long term effects of Dilantin (although, what medication doesn't have long term effects?). Anyway, we made the switch. I don't remember how we did it, but I know we stepped down from the Dilantin while stepping up to the Lamictal. Once I was off the Dilantin, I was on 300 mg daily of Lamictal. I ended up having another seizure (my 2nd) shortly thereafter, which we attributed to the transition. A year later, I had another seizure (my 3rd), so we increased the dosage to 400 mg daily. A few months later, I had another seizure (my 4th), so we increased the dosage to 500 mg daily.

So far, I've had the four seizures, and my last one was a year and a half ago. It took a while to get the dosage to the right level (I'm hoping 500 mg is the right level), so you will have to be careful when your husband makes the switch. He could have seizures again because of the transition or because the new drug will require a higher dosage than you needed before, although he may not have any seizures. It is, I'm sorry to say, a bit of trial and error. But hopefully you'll get to the point where his seizures are controlled. It unfortuately takes some time, so you'll have to adjust and make sure you're prepared. People need to know about the switch and the possibility of seizures, especially his boss and your kids, so they won't be caught off guard. As long as you're prepared, you should be okay.

All the best.

Re: Doctor wants him to switch from Dilantin to Lamictal

Submitted by Seruzies on Sun, 2009-09-20 - 17:17

I'm trying to switch back the other way around. I've taken both and feel like I had more success with Dilantin. I (of course) can't remember why I was switched at the time. I'm not real happy with the side effect of losing my hair on Lamictal either.

Re: Doctor wants him to switch from Dilantin to Lamictal

Submitted by leftoverhippie on Sun, 2013-07-28 - 16:48

I was an AT&T corporate manager until my job was surplused after the bellsouth merger. During that time I had become toxic from 25 yrs of dilantin. Dilantin has SO many irreversible side effects it is unreal. So my Dr. switched me to Lamictal. To keep me safe as I had to travel during my job he took 6 months to convert me from dilantin to lamictal. Now I am on Lamictal xr. I do take a percentage over what I need but that was at my request. I will NEVER regret the change. Life is so much better and thinking has dramatically improved. I have only had one seizure since 2007 and that was a day I had forgot to take it and it was very light. I am happy. I was not a born epileptic but was in a wreck when I was 17 and sustained head injuries. Then the seizures started.

Re: Doctor wants him to switch from Dilantin to Lamictal

Submitted by just_joe on Wed, 2013-07-31 - 09:24

I had to switch to another medication but it was not because the dilantin wasn't working. It was keeping my seizures down,After being on it for over 30 years you can become toxic on it. One of the side effects with dilantin is fluctuation in your gumd. After being taken off the dilntin my gums receeded all the way back and my teeth were all loose. I had to have dentures made because there was nothing holding them in you could see the roots of my teeth. With most dentures they get molds and they have to adjust them after the gund receed mine were adjusted 1 day after they were put in and I haven't had anymore adjustments. I wil need to do something soon because these are showing wear but then they have been used every day since 1994.

Hope this helps

I worked for the OLD AT&T and the project I worked on was downsized. When southwestern bell got it they did not know how to fix anythig in our operation

I had to switch to another medication but it was not because the dilantin wasn't working. It was keeping my seizures down,After being on it for over 30 years you can become toxic on it. One of the side effects with dilantin is fluctuation in your gumd. After being taken off the dilntin my gums receeded all the way back and my teeth were all loose. I had to have dentures made because there was nothing holding them in you could see the roots of my teeth. With most dentures they get molds and they have to adjust them after the gund receed mine were adjusted 1 day after they were put in and I haven't had anymore adjustments. I wil need to do something soon because these are showing wear but then they have been used every day since 1994.

Hope this helps

I worked for the OLD AT&T and the project I worked on was downsized. When southwestern bell got it they did not know how to fix anythig in our operation

Re: Doctor wants him to switch from Dilantin to Lamictal

Submitted by Cathy M. on Tue, 2013-09-24 - 14:12

After having my 1st two tonic-clonic seizures (2nd was in ER) hours apart, I was put on Dilantin. I ended up with either my blood levels too low or toxic for years. I was only taking the Bad D for about 5-6 years The absolute worst part was the development of Osteoporosis, and damage to my teeth and gums! All of these are side effects of Dilantin. I unfortunately didn't do my research until AFTER suffering numerous broken bones, a bone density test that shows I have the bones of an 80 yr old (I'm only 43), gum loss and tooth damage! IMO, this gentleman deffinately needs a bone density test and a med change! This is my first post, so please accept my apologies if it's disjointed, wordy or not in the right place. I'm learning... also on a tablet which isn't too typing friendly.

Re: Doctor wants him to switch from Dilantin to Lamictal

Submitted by just_joe on Sun, 2013-07-28 - 17:36

Dilantin was a great medication. I used it for about 35 years. After being on it for that length of time I had become toxic on it. As for geting someone off one medication and onto another. It has been done to me many times. People are eased off one while they add the other. I had no problems or seizures while they did that. They do it just like they do when putting someone on medications. Ease off while adding the new one little at a time. When they took me off dilantin and put me on the new medication it took about 1 week but we had already reduced the dilantin in half before I saw the neuro which I had done knowing the dilantin was causing the problem. I had increased the tegratol I was taking by 1 tablet which kept me from having seizures.

Hope this information helps.

Understand too that side effects do not happen to all people on medications. The number of people with those side effects is a small percentage.

good luck and I do hope he gets seizure free

Dilantin was a great medication. I used it for about 35 years. After being on it for that length of time I had become toxic on it. As for geting someone off one medication and onto another. It has been done to me many times. People are eased off one while they add the other. I had no problems or seizures while they did that. They do it just like they do when putting someone on medications. Ease off while adding the new one little at a time. When they took me off dilantin and put me on the new medication it took about 1 week but we had already reduced the dilantin in half before I saw the neuro which I had done knowing the dilantin was causing the problem. I had increased the tegratol I was taking by 1 tablet which kept me from having seizures.

Hope this information helps.

Understand too that side effects do not happen to all people on medications. The number of people with those side effects is a small percentage.

good luck and I do hope he gets seizure free

Re: Doctor wants him to switch from Dilantin to Lamictal

Submitted by scorpio on Wed, 2013-07-31 - 04:58

Changing the medication from Dilantin/phenytoin is a very good idea. I did it myself 15 years ago and have never regretted it. The slower the change the better however for two reasons, the main one being that Lamictal's side-effects are more likely to materialise if its uptake is too fast, if they appear at all, and the other being that phenytoin reduces the efficacy of most drugs taken alongside it. In the case of the latter, the 200mg/d Lamictal that I take now, on its own, is at least as effective for me as 400mg/d level I had reached before I finally removed the phenytoin altogether.

Timewise, I completed the first changeover in 3 months, from 100% phenytoin to 100% Lamictal, and another couple of months reducing the Lamictal to what I take now, 200mg/d. Two stages really.

Chris

Changing the medication from Dilantin/phenytoin is a very good idea. I did it myself 15 years ago and have never regretted it. The slower the change the better however for two reasons, the main one being that Lamictal's side-effects are more likely to materialise if its uptake is too fast, if they appear at all, and the other being that phenytoin reduces the efficacy of most drugs taken alongside it. In the case of the latter, the 200mg/d Lamictal that I take now, on its own, is at least as effective for me as 400mg/d level I had reached before I finally removed the phenytoin altogether.

Timewise, I completed the first changeover in 3 months, from 100% phenytoin to 100% Lamictal, and another couple of months reducing the Lamictal to what I take now, 200mg/d. Two stages really.

Chris

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