Nervous about switching BACK to Dilantin

[Dignan]

Hey all,

I am looking at switching back to Dilantin from Keppra, because of the libido issues and sometimes not feeling sharp.

I took Dilantin previously for many years and didn't notice any day to day problems other than bone loss from long term use.

Still, I am nervous about going back to it for several reasons.. mostly having to do with long term effects.

Aside from liver testing and testing for Dilantin levels, hormone, and periodic bone scans, anyone have any suggestions on other testing I should have done if I go back to Dilantin in order to keep an eye on other long term effect possibilities? Such as cerebellum issues or neuropathy??

The other concern is it took me several months to feel right coming off of Dilantin the first time, so I am wondering if it would be any easier coming off of it again, (since I hope to not take Dilantin very long this second time around), but don't want to go through 6 months of feeling like crap if I do get off of it again.

Would the fact that I have taken it and gotten off successfully mediate the effects if I have to come off of it again?

Lots of questions I know, but any help is appreciated..

Thanks,
D :rock:

 

[Nakamova]

Let your neuro know about your concerns. They can test you for peripheral neuropathy at the same time they see you to test blood levels. The test is basically a vibrating tuning fork placed against your toes to check sensitivity levels. You might have one done at the start so there's a baseline to compare any future tests against.

Cerebellar atrophy is associated with higher Dilantin blood serum levels over time, so if you can stay at a relatively low dose, that may help. If there is cerebellar atrophy, cognitive testing may help catch it early, and MRIs or other tests may confirm it. You might want to have a neuropsych test done now -- it will set a baseline that you can gauge any potential cognitive changes against. (The eval consists of all sorts tests relating memory and concentration.)

You should also make a point of seeing the dentist 2-3 times a year, since Dilantin can start affecting the gums pretty quickly.

There's no way to predict how you would feel going on and off the Dilantin this time around -- factors like age, dosage, and metabolism can all play a role. Generally speaking, the longer the taper period and the smaller the dosage changes at each level, the easier it is for your body to adjust, and the less likely you will have withdrawal issues.

 

[Dignan]

Thanks for the tips. The only reason I am going back is because of the libido problems on Keppra and that I don't always feel mentally sharp anymore.

I have thought of doing a neuropsych evaluation, but because of the mental sharpness thing on the Keppra I am currently taking, I have wondered if it would be less than accurate until I get off the Keppra.

So, i've been unsure if something like that would affect the test results, or if I should wait till I switch to Dilantin, see if i feel more alert, and then take the test.

 

[Nakamova]

I think it makes sense to wait and see how you feel on the Dilantin. Hope it does the trick for you! I was on Dilantin at first -- it basically worked fine for me, but the gum side effect, plus the potential effect on bones made me switch.

 

[jyearta]

Hi Dignan,

I am on dilantin also, and have been for the most part of 40 years. I was put on other medic. and could not take the side effects. One of them being Keppra.

Please...always have your levels checked.

I saying this, because my became toxic and my Dr. did NOT take the steps needed. ---This is what I'm being told now.---

I am now coming off dilantin and a new dr. is adding topiramate.

Dilantin worked for me for so many years- and after all the side effects of the many other medic. I have been put on. I thought I would NEVER come off dilantin.

Now it could be that it still would not be a issue, if my levels had not gotten so high. or if the Dr. had taken steps needed. (what steps-I don't know)

It is such a scary thing to change medic.

I am not trying to scare you, just be sure if you notice ANYTHING call your Dr.

I do hope this is the medic. that you need. We are all different.

 

[Dignan]

By toxic, you just mean that your dilantin levels were too high (out of reference range)?

I had taken Dilantin previously for 17 years and had no big side effects other than some increased body hair (i'm a guy so who cares) and bone loss (considered osteopenia).

The bone loss is why I changed meds. At first I just took neurontin (I had been taking it along with dilantin so just stayed on it) then switched to keppra.

I can honestly say that ever since ending Dilantin, my life has turned upside down and things have been much worse day to day side effect wise. It has been two years now, and I'm sick of it, so that's why my doc and I talked of going back to Dilantin and trying to manage the bone loss.

We figured if other side effects go away by going back on dilantin, I can feel better, but we can also say for definite that what I am experiencing is related to the keppra and neurontin.

Then, if need be, we can try to just let me be for awhile (hopefully have a year of peace) and then maybe switch to Lamictal or Trileptal if the bone loss thing keeps getting worse or someother long term issue comes up.

If you don't mind me asking, what effects occured due to being toxic that your doctor didnt notice? Also, were these effects strictly because levels were too high or just from taking Dilantin for so long (meaning would they have occured even if levels were normal given the many years of exposure to the drug).

I'm exhausted and just want some time of peace, which is why I'm looking at going back to dilantin.

 

[jyearta]

I hope to explain this as best I can.

a Neur. that I had been seeing since 1975, said that it was due to high levels, my level got to 24. something

--it gets a little fuzzy here-- I was alread dealing with B-12 defic. due to the long term use of dilantin. When more symptoms kept coming up, I would ask my old neur., and he would say MMM.

--Sorry ---I go here and there--now back to my symptoms
shaking/trembling, trouble walking, numbness ,concentration, crying, and it gets a little more fuzzy, cause I went to another Neur. (I thought He would going to be so good) - He said it was because I had been on dilantin for to long a period.
I was taking 100mg 3 tablets at PM and 2 tablet AM
He started reducing and I could tell it.
I would be better for 2 or 3 days, then there I would go. When I called his office for advise on why is this happing like this, his assist hung up on me, that is why I found another neur.

SOO I'm at a yet another neur. - I didn't give her any of the inform. from the other two. dr.- I wanted to hear what she had to say.
She said that being on dilantin for a long period of time can cause my problems.

She put me on Topiramate, this started up my seizures again just this week, so now she took me it.

Which one is right. I don't know.

Let me know how it goes for you. Good Luck
jyearta

 

[Dignan]

Thanks for the info. It's always a tough call, whether to take the risk of Dilantin in the future for a better day to day life today. Robbing Peter to pay Paul kind of deal.

I don't think I've ever had anyone check my B-12 levels (unless they are tested under some other name). I find it strange that they never told you if indeed the Dilantin caused your problems if it was because of some permanent damage the drug had done, or if it was indeed reversible. Maybe they just don't know. When you say you could feel it after they reduced Dilantin, was it for the better? And, did it stay better? If not, you may just have to give it time, as when I came off Dilantin the first time it took my 6 to 8 mos. to feel right.

Personally, I'd rather have a doc admit if something isn't knowable instead of pretending they do know and give out false reassurances.

As I said, I'm on Keppra right now, and I have heard that can mess with your B levels as well. I routinely feel fatigued, sometimes out of it mentally, and I have no sexual desire. As bad as that sounds, I really don't think these effects are too bad, except for the sexual decline.

If I do go back to Dilantin, it is just to feel right in the short term, but I do know that long term, I'll have to find some other answer.

The truth is that even if they give you another newer drug, in 10 or 20 years we may discover that drug ends up being worse than older drugs like Dilantin. They really don't know since they haven't been around long enough to long term effect studies.

So... it's a crapshoot.

 

[jyearta]

I so agree with everything you said.

sorry, I did make that clear. I would feel better for 3 to 4 days each time my dilantin was decreased - I was back to my garden, baking, cleaning, laughing, Oh it felt so good to laugh, l was going out with friends - I was ME.

Then, it was back, fatigue, couldn't get out of bed. This is still going on this way and has been since 2007.

My neur. 1st. started me on B-12 sublig. tablets - that didn't help, for about 2 years I took the tablets and got the B-12 shot.
My B-12 level would be high, but I still didn't have the energy to tie my shoe.

I started doing some research and asking EVERYONE and not to mention reading in this forum.
I realize I needed folic acid, so that the B-12 would absorb. I can not take over the counter folic ac.
Now this is going to sounds so silly, I eat spinach, nuts, oranges, oj for my FA. and I again I can tell this helps me.

My new Neur. the other day, said she did not think this was helping me.
1st. it did have time to get through my system in that short amt. of time (about 10 Min.) to help me. She wanted me to drink a coke or eat something sweet. I did, and got the sugar shakes.
I went back to my spinach, nuts, oranges, and 10 min. I was feeling much better.

SOOO Have your B-12 and folic acid levels checked!!!

Sorry about such a long answer.

 

[foul ball]

I also went toxic on dilantin (was on it for 25 years) and have since changed over to trileptal. The transition went ok. Since being on trileptal I experience bouts of depression and no longer have a desire to go to work. This may sound strange, but I used to love my job. Now, I'm counting the day's to retirement. I will be seeing my neurologist soon and hopefully we can work this out.

 

[jyearta]

I also went toxic on dilantin (was on it for 25 years) and have since changed over to trileptal.

You are the 1st person I heard from that went toxic on dilantin.
I don't mean for that to sound like I'm gald, I just wanted to talk to someone who has been there. I hope you know what I'm trying to say.

I'm in the precess of coming off of it, however dr. have not been able to find a medic. that I can tolerate the side effects, or they don't stop the seizures.

I have always had a problem with depression, I never thought that it could be related to dilantin, just thought it was me.

I'm going to see a psych. in Dec. --that is his 1st opening.

I'm trying to deal with it myself - I take fish oil. And was thinking (I can handle this all by myself) WRONG. It does help me, but I don't like the ideal that I'm taking supplement I not sure about. But hay, I had to have something.

I hope you don't mind if I ask you questions?
Did you become B-12 defic. due to the dilantin?
When you got off dilantin did that take care of the B-12 issue?

I'm how walking with a walking cane - gate is off.
I want to go with my husband on our motorcycle again.

So, has this medic. got you seizures under control.

 

[foul ball]

Hello Jyearta,

I've been there and this is how.

I had gone on a diet and lost wieght (194-170). In the meantime, leg neuropathy, which I had had for a while, was getting worse. I was also getting a pins and needles sensation all over my body, my speech was labored, and I was getting terrible involuntary body jerks. The slightess noise caused me to jump out of my skin, as if I had a severe nervous condition. It got to the point where I thought I was having a nervous breakdown. I went to my PCP and he told me I had a nervous condition and gave me some narcotic. My wife called my neurologist who immediately ordered bloodwork, and on the same day, called, and told me to cut back on the Dilantin, that I was at a toxic level. Within 24 hours, I felt much better.

That's when we decided to change meds. I now take Trileptal which is no bargain. While on dilantin I also took b-12 supplements. I am also dealing with some depression and I also take fish tablets.

My tonic clonic seizures are under control - I still deal with the simple partials. I do have a great Neurologist that I wouldn't give up for the world. My PCP (caused the toxic problem-that's another story) is average at best.

Hope you find a great doc.

foul ball

 

[jyearta]

I had gone on a diet and lost wieght (194-170). In the meantime, leg neuropathy, which I had had for a while, was getting worse. I am also dealing with some depression and I also take fish tablets.

foul ball

Boy, foul ball,

Now that just knock my soxs off, when I read your reply. This all started when I went on a diet and exercise program. I lost 39 lbs. in 4 months.

I was with my (I will call him) Neur. #1 - he knew of me dieting and saw a good bit of the weight lose. He was the one, who told my level was 24. something. --didn't chg. dilantin

So at Neur. #2 - he had my records form #1, I told him of my dieting and exerc. , I don't know why I even told him.
I was in such a mess that day.
He did start reducing my dilantin that day.
I thought all my symptoms had to be related to the B-12 shots.
I couldn't walk that well, my speech, concentration, shaking, emotional.
He said it was the dilantin being at should a high level. He didn't say toxic. I don't know what level is toxic.

This sounds like I will be getting better, when Neru. #3 finds the medic. I can tolerate.

I wish you the best on the depression, that can be a rough thing to go through also.

 

[foul ball]

Jyearta,

The diet thing makes sense. Reduce the body's weight and it will take less meds to maintain a certain level. Kind of like a person's blood alcohol level. Anyway, I'm better and I hope your getting better.

Good luck

 

[Dignan]

I am revisiting this thread because I saw my neuro the other day and we talked again of my going back to Dilantin.

I quizzed him pretty hard about lots of things and concerns I had. One of the things I mentioned was that I wanted to have hormones checked regularly if I went back to Dilantin along with Vit D, B12, Folic Acid, etc.

He said the only thing he thought needed to be checked besides the dilantin levels and liver was the Vit D. He said Dilantin didn't affect B12 or folic acid (which of course doesn't jive with what I have read on this forum). Also, he admitted that he wouldn't know how to interpret hormone test results either.

Does anyone have an opinion on what he told me? Is it time to find a new neuro? I am kinda wanting to go back to Dilantin just because I haven't felt "normal" for 2 years since going off of it, but I do have some bone loss that I will have to monitor and I already take calcium and vit d supplements to try and help that.

Any opinions are appreciated.

 

[jyearta]

He said the only thing he thought needed to be checked besides the dilantin levels and liver was the Vit D. He said Dilantin didn't affect B12 or folic acid (which of course doesn't jive with what I have read on this forum). Also, he admitted that he wouldn't know how to interpret hormone test results either.

Does anyone have an opinion on what he told me? Is it time to find a new neuro? I am kinda wanting to go back to Dilantin just because I haven't felt "normal" for 2 years since going off of it, but I do have some bone loss that I will have to monitor and I already take calcium and vit d supplements to try and help that.

Any opinions are appreciated.

All I know to say is that I have had 3 diff. neur. tell me that it was long term use of dilantin that caused my deficiency in B-12.

I have done all lot of research on this.
The nutrition value along with the vitamins have been depleted from the way our foods are processed.

Dr. Oz did a TV show on this a few days ago. He tested his audience and a lot of them were B-12 deficient, I'm sure they were not on seizure medic.

Dilantin along with clonazepam are the only medic. that have my seizures under control.
My memory is the pitts from being on dilantin. But I'm able to have a normal life, and for that I'm thankful.

I applaude you for doing all the research and asking the questions of your Dr.:clap:

I so hope and pray that you get the help you are needing.