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Old 04-21-2009, 03:04 PM   #1
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Anyone having to go off Dilantin due to long-term side effects?

I have been on Dilantin -- 300 mg a night for 22 years. Dilantin works 100% for me. I am lucky an haven't had a seizure for 17 years and that's only because they tried to take me off Dilantin. For the most part, I forget that I even have epilepsy. Believe me, I feel blessed. The only side effects that I have on Dilantin are issues with my gums. I also had problems taking tests, but now that I am 37, that doesn't really apply. So I am extremely scared of changing meds. My Dr. wants to switch me to Lamictal due to my risk for Osteoporosis on Dilantin. Also, I guess your cerebellum atrophies and leads to unbalance etc. Also, numbness is a risk. Anyway, some of the side effects to Lamictal seem worse than these long-term effects of Dilantin. I really don't want to change meds but every Dr. says I should.

Is anyone else going through this? I'm not only afraid of the side effects, but worried that it might not work at all! I have partial seizures secondarily generalized. While having a grand mal seizure may seem scary, I have only had them at night. But at the beginning I am aware of what is about to happen. I wake up, blink my eyes and can not stop, I feel my arms and legs twisting. It hurts. Then I start to pass out as I feel my whole body shake. I wake up in the morning with blood on my pillow, dazed and confused. I REALLY don't want my husband to see this.

Plus, is anyone having these long-term side effects from Dilantin?

Anyway, I would be grateful for any insight.

thanks!
Christine

Last edited by cstinner; 04-21-2009 at 05:36 PM.

 
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Old 05-02-2009, 03:59 AM   #2
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Re: Anyone having to go off Dilantin due to long-term side effects?

I was only diagnosed with epilepsy about 5 years ago. I was on dilantin until I fell pregnant and was swapped to lamactal. I am desperate to go back to dilantin, lamactial is crap, the side-affects are insane and no doc will listen to me. Refuse taking it for as long as you can!!!

 
Old 05-06-2009, 09:08 PM   #3
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Re: Anyone having to go off Dilantin due to long-term side effects?

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Originally Posted by lozza85 View Post
I was only diagnosed with epilepsy about 5 years ago. I was on dilantin until I fell pregnant and was swapped to lamactal. I am desperate to go back to dilantin, lamactial is crap, the side-affects are insane and no doc will listen to me. Refuse taking it for as long as you can!!!
What kind of side effects have you had? Your Doctors won't switch you back even though you are having issues? That is terrible! I haven't decided on switching yet. It seems like the side effects of Lamictal are just as bad as the long term effects of Dilantin. I don't get it. I was actually on Dilantin for two pregnancies and have two healthy children.

 
Old 05-07-2009, 01:03 AM   #4
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Re: Anyone having to go off Dilantin due to long-term side effects?

I was on Dilantin as a secondary medication for a good number of years. Lamictal never worked for my case; but that's just me. They even tried mixing Dilantin AND Lamictal in my therapy.

My history med is Tegretol. Been on it from the start (1981) and still am. They JUST lowered it by 200mg when my levels reached near toxic at 15. By lowering it one tab it came out at 11. Still nearly 3 points higher than I should be (mid 8's) for blood levels. I have begun to wonder if my system is saturated and fed up with the medication after 28 years on it.

It sounds like I have a very similar mindset to you. Don't mess with treatment if it's working! We don't need years on the roller coaster if we already have control. (or should I say don't mess with TX!)

I know Dilantin did some nice work to my teeth; also did not having any dental coverage during that time.

Having to be part doctor (as the patient!) is something that I started 10 years ago due to a bad doctor. I don't like it, but it has helped keeping on the front edge so I am not in the blind. So much of it I have learned is still a guessing game. When I (you) were younger it seemed like they knew what they were doing, you never asked questions and for those of us that HAD control it seemed like it worked!

Now it's seeing one specialist for seizures, and then another for something else, and yet another for something else in our health! Simplicity no longer exists!

You almost HAVE to be on your toes (BRAINS) when it comes to medications. Sometimes doctors don't catch negative interactions that we think they should. It happened to me.

Don't know what to say. I also cannot comment on the current Dilantin. I was off it a number of years ago, so the newer formulation DID effect only a small grouping of people; most were fine with it.

Hope my rambling helped.

--Travis

 
Old 05-09-2009, 06:21 AM   #5
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Re: Anyone having to go off Dilantin due to long-term side effects?

Quote:
Originally Posted by Travis from MN View Post
My history med is Tegretol. Been on it from the start (1981) and still am. They JUST lowered it by 200mg when my levels reached near toxic at 15. By lowering it one tab it came out at 11. Still nearly 3 points higher than I should be (mid 8's) for blood levels. I have begun to wonder if my system is saturated and fed up with the medication after 28 years on it.

--Travis
How do you like Tegretol? Do you have any side effects? I am just wondering if there is any other medication that will work for me other than Dilantin and if Lamictal is really the right move.

thanks!

 
Old 05-09-2009, 07:41 PM   #6
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Re: Anyone having to go off Dilantin due to long-term side effects?

As I said, I've been on some form of Teg since 1981. Starting on chewable, to brand name tablet, to generic tablet. to the XR form. It's been a very good medication for me up til recently when my levels became elevated.

The only other issue I had was switching from generic 1 to generic 2 of tablet. Something in the secondary generic my system didn't like. I had to go back to the old pharmacy and stay on the other pharmaceutical companies supply (same store line at both locations!) for stability.

Trying to predict if a medication will work for another person is hard. In my case I only had problems when my dose was above 1600/day. It was the one constant I had in my control over all these years.

When the one doctor tried bringing me up to 2200/day It was precarious in spacing the doses out 3x/day. I had to space them with a 15-30 minute time slot to take the dose or my levels would spike or drop and I'd have side effects. Needless to say THAT regiment didn't last more than 2 months!

During my roller coaster years as I call them (when I didn't have good control), they were trying different meds, different combos, changing the doses, and so forth. It was very common for them to be using 3 meds at a time on me. I'm STILL on 3 medications. Not nearly as bad as when they tried me on 4 meds at a time once (horrible failure).

 
Old 05-13-2009, 11:06 AM   #7
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Re: Anyone having to go off Dilantin due to long-term side effects?

Hi Christine - I'm in the same position. Have been on Dilantin since I was diagnosed 6 years ago and my neuro keeps bugging me to switch. First it was to Lamictal (I respectfully declined) and now it's Teg (I've also refused). His comment? "I'm going to keep bugging you until I wear you down."

No clue why. Dilantin does the job with my only side effect being minor gum overgrowth. In the past 6 years I've only had to have minor gum surgery once, and I have dental insurance.

Frankly, I'm wondering if the drug reps are pushing really hard to neurologists with perhaps fabulous incentives and that's why they want us to get off something that works fine without side effects to something that has far scarier side effects.

 
Old 05-14-2009, 09:32 PM   #8
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Re: Anyone having to go off Dilantin due to long-term side effects?

Quote:
Originally Posted by Art_930 View Post
Frankly, I'm wondering if the drug reps are pushing really hard to neurologists with perhaps fabulous incentives and that's why they want us to get off something that works fine without side effects to something that has far scarier side effects.
I'm starting to feel the same way. My Dr. has scared me into wanting to change meds even though I am doing fine. He has told me about all of the long-term side effects that WILL happen to me on Dilantin. However, in doing my research on Lamictal, it seems that some of the side effects are far worse. It all confuses me completely. I found this website, http://www.* removed */. And I have seen people who have been on Dilantin for 50 years that claim to be fine. Ahhhhhhhhh... so much to think about.

Last edited by hb-mod; 05-15-2009 at 01:56 AM. Reason: Please don't post links and/or instructions regarding commercial websites as per Posting Policy. Thanks.

 
Old 05-18-2009, 08:43 AM   #9
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Re: Anyone having to go off Dilantin due to long-term side effects?

I have a pretty good relationship with my Neuro. Next time I go in to see him, I'll ask him straight out what his agenda is in trying to get me to switch.

His latest attempt at persuasion was that Teg would help me to lose weight. That may well be, but so would getting out of my office at lunch and taking a walk.

 
Old 05-25-2009, 06:32 AM   #10
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Re: Anyone having to go off Dilantin due to long-term side effects?

Quote:
Originally Posted by Art_930 View Post
Hi Christine - I'm in the same position. Have been on Dilantin since I was diagnosed 6 years ago and my neuro keeps bugging me to switch. First it was to Lamictal (I respectfully declined) and now it's Teg (I've also refused). His comment? "I'm going to keep bugging you until I wear you down."

No clue why. Dilantin does the job with my only side effect being minor gum overgrowth. In the past 6 years I've only had to have minor gum surgery once, and I have dental insurance.

Frankly, I'm wondering if the drug reps are pushing really hard to neurologists with perhaps fabulous incentives and that's why they want us to get off something that works fine without side effects to something that has far scarier side effects.
I had the exact same thought about the drug reps. I've been on Dilantin since 1971 with good sucess.

My neuro first tried me on Keppra, which caused intense mood swings into deep black anger (not useful on the large crowded trading floor I work on), then Neurontin, which caused uncontrolled facial tics.

She wanted to try Lamictal next, but I'd had it with pharmecutical experiments on my brain...Dilantin worked just fine.

I'm 58 now, regular flossing with dental tape (not floss) takes care of gum problems. My mother has osteoporosis, so I occasionally have a bone density scan done.

I have been seizure free for over 25 years. I don't know why neuro's try so hard to push patients onto another drug when the one they're on works so well. When I complained to my GP about the neuro trying to switch me to Lamictal, he said "It's your body and you don't have to put in it what you don't want to."

 
Old 05-26-2009, 05:43 AM   #11
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Re: Anyone having to go off Dilantin due to long-term side effects?

My neuro has scared me so much I don't know WHAT to do! The thought of the long-term effects catching up with me is terrifying. I have been so lucky just dealing with my gums. I don't want to lose the feeling in my feet or have no sense of balance and become uncoordinated. But all of these other drugs seem to have worse possibilities! While I know I might tolerate Lamictal well, it concerns me that I haven't read about many people that have! I have 2 young children and I am nervous how all of this may effect them -- switching onto Lamictal or another drug and not having it work or having crazy mood swings or anger and even sezuires, which I haven't had for 17 years! I wish there was an easier answer. Plus, Lamictal hasn't been around THAT long. What do they know about long term effects for that medication? So frustrating. I think I might just stay on Dilantin for now and just keep doing my research!

Thanks all!

 
Old 09-16-2009, 11:33 AM   #12
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Re: Anyone having to go off Dilantin due to long-term side effects?

Hello everyone.........I'm so glad I came across this site by Google.....
I am reducing my dilantin 100mg a week till off of it, I am on Keppra now, 750mg am/pm.....my new nuero told me dilantin is old and she wants me on a more up to date med. I'm scared no doubt, I haven't had a seizure in like 10 years or so, I wasn't sure if it was the dilantin causing my memory loss, although my mom and husband call it "selective memory".


I'm scared, but I have the Keppra and klonopin, but most importantly, I have Jesus, and I know he will see me through this without no seizures.....* Off-topic religious discussion removed by hb-mod, moderator *


Last edited by hb-mod; 09-16-2009 at 03:22 PM. Reason: Off-topic, religion.

 
Old 09-17-2009, 05:07 AM   #13
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Re: Anyone having to go off Dilantin due to long-term side effects?

I will have to look into Keppra. I don't know much about it, but something has to be better than LAMICTAL! Have still been too scared to switch off my Dilantin.

 
Old 09-23-2009, 12:20 PM   #14
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Re: Anyone having to go off Dilantin due to long-term side effects?

Hi, I am a older person who has been on Dilantin for over 30 years. I am 100%controlled with it, and feel blessed, as you do. I have never had any side effects, not even the gum enlargement that many have. A while back my doctor was concerned about osteoporosis, but a bone scan was normal. So far I don't have any balance problems, either. I don't know if this would make a difference, but because I have been so well controlled for so long, I no longer see a neurologist, just my family physician. Good Luck to you.

 
Old 09-24-2009, 08:33 AM   #15
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Re: Anyone having to go off Dilantin due to long-term side effects?

cstinner, I switched off of Dilantin long ago because of side effects -- mianly the swelling of gums. You couldn't get me off my Lamictal. I found something after 26 years that controls my GMs. One time my Dr asked if I wanted to try another cuz I still have CPs. I told him "NO WAY".

 
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