We are patients living with Trigeminal Neuralgia, here for your support.

MULTIPLE SCLEROSIS AND TN

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A forum for members with both Multiple Sclerosis and Trigeminal Neuralgia, their caregivers and family and friends who want to learn more.

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Members: 53
Latest Activity: May 9

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Occipital Nerve Stimulation for Neuralgia??

Started by Rager_Sara Apr 22. 0 Replies 0 Likes

[I have atypical (symptomatic) trigeminal neuralgia in all branches on both sides, and occipital neuralgia on both sides. It's a constant burning/clawing pain that worsens throughout the day - no…Continue

Pain numbers?

Started by Rager_Sara. Last reply by Jennifer Apr 19. 8 Replies 0 Likes

I'm sure we're all used to giving the 1 - 10 pain designation by now. I was wondering what the average pain is throughout the day for those of us with MS and trigeminal/occipital neuralgias? I'm…Continue

ms and tn

Started by guppy. Last reply by Rager_Sara Apr 19. 3 Replies 0 Likes

i asked my husbands neroligist if people can get disability for tn. he said no. which left me a bit confused because when my husbands tn flares up he is bound to a chair for awhile. it is worse at…Continue

Artsy One needs a break!

Started by Artsy One. Last reply by stacia Mar 24. 14 Replies 0 Likes

I have had TN and occipital Neuralgia for 7 years now. It is secondary of MS. I have been holding on with medications until recently. My pain is no longer being controlled with medication.I need help…Continue

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Comment by Sheila W. on May 6, 2013 at 12:39am: No, not at all Sara because it's not an opiate. It's an anti-inflammatory, but it has a slightly numbing and muscle relaxant effect too. You can ask for diclofenac 10% cream, then you'll have to find a pharmacist that mixes prescriptions, a compounding pharmacy. Most pharmacies that are in department stores don't do it, but most pharmacies that are all pharmacy and Walgreen's or Mom & Pop stores usually compound. Just call your pharmacy to ask if they do compounding. If your Dr. says no to 10%, ask if you can have 5%. if you can't find a place that mixes creams, Voltaren Emulgel has the same chemical, but is only 1.6%. It's over the counter. (OTC).

Comment by Rager_Sara on May 5, 2013 at 11:45pm: Thank you Sheila! I've added that to my list to bring to the pain doctor :) Is there a stigma in asking for diclofenac cream, like there is in asking for pain pills?

Comment by Sheila W. on May 5, 2013 at 12:19pm: I have a cream that is equivalent to ketamine cream. It's diclofenac cream. It takes the pain down a notch or 2 so it's more bearable, but not completely gone. Many people on the website speak of lidocaine patches and that they are helped by them You might want to start discussion in the main section of the website to see many more comments than in this small group.

Comment by Rager_Sara on May 5, 2013 at 1:34am: Has anyone tried ketamine cream (or gel) in any of its possible mixtures? Did it help you? Or has anyone had any luck with lidocaine patches?

Comment by Sheila W. on April 19, 2013 at 9:22pm: Sara, Funny you should mention that specific one, I'm laying on one for a back injury right now. lol.

Comment by Rager_Sara on April 19, 2013 at 8:26pm: You've all been so kind, I wanted to share with you one of my most helpful - and harmless - pain relievers. The Medi-Temp Hot & Cold Compress for the head and neck. This is the only extremely cold ice pack I've found that is hands-free and actually stays put! They will melt in 20-30 minutes, but I have 5 of them that I rotate all day. Amazon sells them for $15.95: http://www.amazon.com/Medi-Temp-Head-Neck-Hot-Cold-Therapy/dp/B000A...

Comment by Sheila W. on April 19, 2013 at 10:03am: Vicki: Thanks for your compassion.

Birdman: I'm so happy for you!!

Comment by Sheila W. on April 19, 2013 at 10:02am: Sara, Glad I saved 1 person from that he**. For the first few days I was in bed, unable to walk due to MS symptoms. They said if I wanted to eat, I'd have to walk to the lunch room, and when I was 'ready" to smarten up, I could come meet people there. I had to fall off the bed and drag myself to the bathroom, then do the opposite to get back to the bed. I got water, but about 5-6 days later, my legs were working well enough for me to lean against the wall to get to the lunchroom. That's what a "pain camp/program" does for you. There are other types of pain programs where they actually seek out the cause of your pain and try different methods to treat it, but I didn't have that one,. The second one would be worth seeking out.

Moderator Comment by Richard A. "Red" Lawhern on April 19, 2013 at 7:44am: Birdman, I hear you, and glad for your positive outcome.

No two patients are absolutely the same -- and some MS patients do get relief or pain moderation by means of Rhizotomy, from the component of their MS pain that is experienced in the face. The procedure causes a lesion on the nerve which interrupts downstream transmission of nerve impulse cascades. It may be an "additional" lesion on a nerve where MS plaques have caused pain, but it's a planned lesion in a specific physical location.

Regards and best,

Red

Comment by Birdman33 on April 19, 2013 at 7:01am: To: Richard A. "Red" Lawhern, Wether or not MS can cause TN I do not know the definitive answer but I do know this, I had a Rhizotomy ( Spelled wrong I'm sure ) procedure done back in November and that along with taking 300 mg Trilipel pills 3x a day I have not had one instance of the TN. My Neuro told me the TN was due to the MS and I took his word on it. I saw Dr. Grande at the U of M hospital and he has extensive experience with this and he preformed the procedure and again, no issues. I took my first real vaction in 3 years back in March. I'm happy. I know it will not last but for now, I'm happy....