I have multiple sclerosis and trigeminal neuralgia. My dilantin totally helps the pain, but I have a sensation of internal heat in my face, head and neck. I am wondering if anyone else deals with this.
Thank you

Hello Shaunna, and welcome to Neurotalk

Trigeminal Neuralgia is a battle that I too have faced for a long time with my MS. It was my 'onset' symptom as far as I can tell.

Do you believe the heat sensation is coming from the medication? I'm not familiar with that drug. I ask because while I have T.N., I also experience burning in my head (left side primarily - also where I have the T.N. attacks, except when I have 'atypical' T.N. attacks that are less severe and affect both sides of the head), and burning in my mouth.

I have to take 2 medications, one to control the burning in the skull/head, the other to help control the burning in the mouth.

Welcome Shaunna, nice to meet you.

I don't have TN, thank heavens, but some here do and I am so sorry for your pain..

I hope you pull up a chair and join us.

Feel better soon..

Hello Shaunna ..... welcome to NeuroTalk.

I am very sorry that you are suffering from this symptom. I too have had it, once, and I thank the Lord that it's not recurred. I was treated with a different antiepileptic medication to Dilantin, but I ended up with a course of cortisone to rid myself of that terrible pain. Maybe that's something to think of if the symptoms continues much longer.

May I suggest that you have a look at our Trigeminal Neuralgia Forum because the pain is the same, no matter what the cause.

This is a really good thread for explanations:
http://neurotalk.psychcentral.com/thread27175.html

... and there are more up in the stickies as well.

Here's the link to that forum. Do go have a read, even if you don't post.
http://neurotalk.psychcentral.com/forum26.html

I hope it eases soon for you.

I am new to the group. I was diagnosed with trigeminal neuralgia for the longest! It was not until 2006 that Dr. Mohan stated that was an early sign of MS. My husband and family did not want to believe it, but 2 years later went to another neurologist and she confirmed it!!! I am so tired of being in pain everyday. I understand people like it cold. I cannot stand cold. I sleep with the heating pad on the right side of my face. I was given neurontin; which I take 2 at night and it does help me sleep. I cannot take it during the day as I have to work. I do use capzacin. I'd rather it burn than be in pain. Unfortunately, it makes my face red when I put it on. The paind in my head feels like needles prickling my head. The face pain is like that but sometimes it feels like an elephant kicking me in the face!!!

I'm so sorry that you're suffering Carlisa. Have a look at the reply above my post here, and your post above. Hopefully you will find some information there to suit you too.

Welcome to NeuroTalk Carlisa, nice to meet you. I'm so sorry for both of your DX, especially TN, because that is so painful. I hope that you and your Doc find the right combo of meds to help you.

I'm glad you found us and I hope we can get to know and help each other..

I have had trigeminal neuralgia since the early 90's. I suppose there are varying degrees of severity because I was easily controlled with Tegretol. When I was first put on it and with each increase in dose I was pretty drowsy but that would go away in about 2 weeks. I guess it would be considered an abuse of the drug but sometimes when I can't sleep I take an extra dose of it. Since it is more milligrams than I take every night it does help me sleep. I take 200 mg in the morning and 400 mg at night.

Thanks for the response. What kind of meds do you take for the burning in your head?

For the head I take Cesamet (Nabilone). I had to go through a pain doctor here to have it prescribed. It's a government controlled medication (Canada).

Seems to be the medication that's provided me the most relief. Seeing a pain specialist was one of the best 'decisions' I've made in managing my MS and symptoms (including the T.N.).