Has anyone here been given the AED phenytoin for nerve pain? Just wondered; I’ve taken most of those on offer, wasn’t sure if this is widely used.

Many thanks


hi Sarah, hope you are well. I’ve just came accross your post - i’m due to start this tonight. I noticed you posted this last year and was wondering how you got on with it. I’m getting it for neuropathic pain relating to my bladder. Neuro told me yesterdat this is the last med available that he can offer me. I have tried every other neuropathic pain killer , but NONE have taken away the pains I get when i need to pee . It is a pain i can only describe as frost bite all over my body. It is so very sore. It keeps me from sleeping too. I now have to use a catheter everytime i need to go , even that doesn’t empty my bladder properly. The slightest drop of water in the bladder sends off the triggers to my brain ( brain sometimes has a laugh when there is nothing in the bladder) I can be going to the toilet 4-5 per hour just to try in the hope the pains go.

I’m babbling on here just assuming you are having the same nerve pain as me !!

Please let mr know how you got on with it - side affects etc.

thanks Sarah,

keep smiling

cath x

Cath, l was having the same problem as you - many years ago. l ended up having a Supra Pubic Catheter - 20yrs now - and it has made such a difference to my life. There is now a new treatment - Sacral Neuromodulation - thats worth a google!

But l can remember sitting on the loo nearly all night - as l just continued peeing.

LDN also made a big difference to my bladder - reducing the pain and spasms. And also making me feel so much better in myself.

At last Sarah , someone who might just be able to help me !!! i’m busy today so I won’t be able to look this stuff up till tonight. Had a quick look at the sacral neuro part and looks interesting ! thanks for getting back to me. I’m sorry it’s taken so long for someone to reply to your post , and sorry I couldn’t have helped.

How did you get on with phenytion anyway ?

speak soon

keep smiling

Cath x

Hi Sarah, I am soooo tired!! last night was the 2nd night on the phenytion. I know i need to be patient but i’m still up peeing with catheter and have been barely able to get up the past 2 mornings! The consultatnt said to take at night - the doctor said during the day. At what time did you take yours? Do you think it makes a difference ? Can you tell me how it worked for you, if atall? This nerve pain is so painful. Do you get a specific area that pains you more relating to your bladder ? I actually have a few but the one I can’t controle is this pain that feels like frost bite all over my body.

You mentioned the LDN. I have not looked into it yet. I took copaxone for 5 years and in the end came off it because it made me severely sweat. It really was debilitaing. My wee boy stopped cuddling me because i was always dripping from head to toe! I went to see a dermotologist who , after taking me off anti-deps, decided that copaxone was the reason. I take a drug to help the sweating- but no more copaxone. My neuro obviously not hapy with me not taking it but something had to give. I will read up on it but, is LDN the same idea as copaxone, rebif, avonex etc?

Have you managed to ‘manage’ your bladder nerve pain yet?

I’m just fed up with it. I think I have already mentioned that the neuro has said that the phenytion is the last drug he can give me. ( maybe he’s still in a huff about the copaxone!!!)

Hope you have a good day.

hope you don’t mind that i have latched on to you about this.

keep smiling

Cath x