Neuropathy due to long term use of Dilantin

[Thankful]

Hello again everyone, I don't mean to seem ungrateful after being "seizure free for 13 yrs. My quality of life as changed dramatically after having the abnormality removed in 1998 from my RTL that was causing the seizures. No words can express how thankful I am. I highly recommend anyone comtemplating to have this surgery to have it done if you are candidate for it. The only frustrations I have is why my doctor only until now that I have been diagnosed, (May 2011) with having "pheriphal neuropathy" does he want to take me off the medication, (Dilantin-400mg daily). For 33 yrs Dilantin only helped to control my seizures. I still had seizures once or twice month while taking Dilantin. It was not until I had surgery did the seizures go away completely. I feel he should have wanted my off this medication long before now. I've gone for my yearly check-ups each and every year since my surgery. The last couple visits I advised him of the sensitivity in my legs. He said not to worry that was normal for patients that take Dilantin.

Of course I want to stop taking this medication because the doctor says my neuropathy will only get worse if I continue to it. The only down side I have is I live alone and I must lose my driving license for 6 mos. I'm not sure why because I've been seizure free for so long due to the surgery, not the medication. Has anyone ever experience this sort of dilemma? Any and all advice would be appreciated.onder:

 

[jyearta]

I have been on Dilantin for almost 41 years. Except for the times the Dr. have tried other medic. that DID NOT work for me.

I too am having the neuropathy from the long time use of dilantin. I am also B-12 defic. from long time use of this medic.

I do not react well to the B-12 shots at all, and I cann't take folic acid to aide in the absorbing the B-12.

due to the defic. - I do not the energy to live the life I have been able to live for about 2 years now.

Don't wait until symptons of B-12 defic. show up. Ask your Dr. to test you now.

I scared to try another medic. since I'v tried many of them and bad side effects from them.

 

[hootie]

Jyerta--

Have you tried folinic acid or 5'methytetrahydrafolate instead of folic acid?
Have you ever been checked for folate receptor antibodies? Do you feel better or have less seizures if you are dairy-free?

 

[jyearta]

Jyerta--

Have you tried folinic acid or 5'methytetrahydrafolate instead of folic acid?
Have you ever been checked for folate receptor antibodies? Do you feel better or have less seizures if you are dairy-free?
_____________________________________________________________
Hi Hootie

I have never heard of folinic acid or 5'methytetrahydrafolate. Can you tell me more? again I have not been checked for folate receptor antibodies. I just had CBC work done. I don't if this is included in this test.

I have been asking and asking my neur. for help, (changing to a new one, this will make number 10) He ask me what do I want him to do?

I know this going to sound studid, but I am eating spanish and sunflower seeds in order to get the folic acid I need.
I spoke with a compound Phar. yesterday, he ask if I had a seizure when I eat the spanish, I told him No., He said that is wasn't the folic acid that causeing my seizure in that case, that it had to be some else in the tablet it self that causes my seizures when I take it.

I got a call at 6:00PM form this compounding phar. that my OB/GN sent me to about 2 weeks ago.
She is working with this compounding Phar. to help me with B6, B12, Folic Acid, Vit. D. and calicum.
She seems to be the 1st dr. that seems, like they want to help me.
She said she has seen enough patients w/E, and the problems we have.
Again she is the one to give me the name of diff. Neur. - She is so mad at the one I'm seeing.

I didn't mean to write a book.

 

[Thankful]

jyerta,

Thank you for your response. May of this year when my doctor told me I had neuropathy, I had complete blood work done that included checking my dilantin level, b-12 levels and to see if I was a diabetic. Everything came back normal. My dilantin level at that time was (10.2) which according to my doctor is below the normal level. Before having surgery, if my dilantin level was this low I would be having seizures. I definitely feel coming off Dilantin with my doctor's help is my best option at this time. I just wish I did not have to lose my driving privileges for 6 mos. I read on the DMV website that my doctor can petition for me to keep my license depending on the state and circumstances. I think being that I have been "seizure free" and no "auras" since my surgery, (11/98) should be a good enough reason. I should know more after my doctor's visit next month.

 

[hootie]

Jyearta--
Folic acid is the synthetic form of folate. The body needs to convert Folic acid into its active form so it can work. Folinic acid is how folate is found in foods and is the active form of folate. 5'MTHF is also an active form. If you google folate metabolism, you can see how one form is converted to another. If you body has issues with the enzymes that convert Folic acid to folinic, then you may be deficient in folate. Also, if you have folate receptor antibodies, your blood levels may be fine but the antibodies can block the folate receptor and cause low levels of folate in the CNS.

 

[jyearta]

I have gone back reading some early post. Since my Dr. visit yesterday.

She told that I did not need to take B-12 shots, that my levels where very high.

I asked about my neuropathy, she said it was NOT due to B-12 deficiency. After being told by a neur. that diagnosed me with the B-12 defic. He said my neruop. was caused from that.

I too have been on Dilantin for around 40 years.

New neur. said that I might have to stay with dilantin, but that she will want levels every weeks, since I went toxic on it. I losted 39 llbs. which is what she caused me to go toxic on it.

 

[Cint]

I definitely feel coming off Dilantin with my doctor's help is my best option at this time. I just wish I did not have to lose my driving privileges for 6 mos. I read on the DMV website that my doctor can petition for me to keep my license depending on the state and circumstances. I think being that I have been "seizure free" and no "auras" since my surgery, (11/98) should be a good enough reason. I should know more after my doctor's visit next month.

If you have not had any seizures for 13 years, why would you lose your driving privileges if you're coming off the Dilantin? Why did the dr. wait 13 years to lower your Dilantin? Any dr. that tells a patient a side effect is normal while taking a medication and knows the risks, well, IMO, it's time to find another dr.

 

[Mimi3]

Dilantin and Neuropathy

The only frustrations I have is why my doctor only until now that I have been diagnosed, (May 2011) with having "pheriphal neuropathy" does he want to take me off the medication, (Dilantin-400mg daily).

Of course I want to stop taking this medication because the doctor says my neuropathy will only get worse if I continue to it.

Hi! I found this thread after doing a google search. I am wondering whether your neuropathy has gotten better? I have been off of dilantin for a couple of years, but my neuropathy developed after I was weaned off. I will talk to my dr. soon, as I am not on any therapies. I am hoping that you no longer suffer from neuropathy, but I am afraid I will just have to live with the condition.

 

[jyearta]

If you have not had any seizures for 13 years, why would you lose your driving privileges if you're coming off the Dilantin? Why did the dr. wait 13 years to lower your Dilantin? Any dr. that tells a patient a side effect is normal while taking a medication and knows the risks, well, IMO, it's time to find another dr.

I agree with Cint.
I was taken off dilantin after 30 years by 1 Dr. things go so bad I asked to see another Neur? they too.wanted to try all the other meds. on. me.
I perfer to live with neurparty than seizures.