Question about MS and Trigeminal Neuralgia

[VickiD]

Hi everyone,

So happy and relieved to have found this forum!

I won't tell my entire story right now but just had a question about Multiple Scleroris and TN. I have both (oh, lucky me!) and was recently told that there's not much that can be done for the excruciating pain of Trigeminal Neuralgia when you have MS. That really scares me because I can't imagine a future with this type of pain along with my MS symptoms.

Right now my pain is being managed by a high dose of Neurontin but at it's peak last Summer, even Morphine didn't lessen the pain. I'm hoping there's some type of procedure or surgery if the TN gets progressively worse down the road but was told by another person with TN that what works for the typical TN patient doesn't work for those who have both diseases.

Do any of you have TN and MS? Is there any hope for the pain as the condition progresses?

Thanks in advance for your help.

~ Vicki

[Sequoia]

Hi everyone,

So happy and relieved to have found this forum!

I won't tell my entire story right now but just had a question about Multiple Scleroris and TN. I have both (oh, lucky me!) and was recently told that there's not much that can be done for the excruciating pain of Trigeminal Neuralgia when you have MS. That really scares me because I can't imagine a future with this type of pain along with my MS symptoms.

Right now my pain is being managed by a high dose of Neurontin but at it's peak last Summer, even Morphine didn't lessen the pain. I'm hoping there's some type of procedure or surgery if the TN gets progressively worse down the road but was told by another person with TN that what works for the typical TN patient doesn't work for those who have both diseases.

Do any of you have TN and MS? Is there any hope for the pain as the condition progresses?

Thanks in advance for your help.

~ Vicki

The person who told you that what works for TN doesn't work if you also have MS was misinformed. The usual treatments do work.

Many MSers get relief from TN by taking Tegretol. If the Neurontin isn't working for you, you might talk to your doctor about switching meds.

When TN is severe and non-responsive to other treatments, there's also a surgical intervention that can be done.

http://www.neurosurgery.pitt.edu/ima...neuralgia.html

Long story short, you're not doomed to suffer terrible TN pain for the rest of your life.

[VickiD]

Thanks, Sparky and Sequoia. What a relief to hear that there are options! They did put me on Tegretol (sp.) but I broke out in rashes. Neurontin is working great right now...I just have this looming fear that it won't be effective after awhile and I'll be doomed. lol.

Sparky, I'm not actually new to MS world but I think I gave that impression.

Thanks for your comments! I'd love to hear any other thoughts on this topic, too.

~ Vicki

[mlissa67]

Finally...

someone else who has both MS and TN...I'm so sorry that you too are going through this, but it is nice to meet you.

I too am struggling with both of these. I had an allergic reaction to Tegretol so that is out. I was taking Lyrica which worked just okay but I couldn't tolerate higher doses due to the side effect of being "higher than a kite" although I suspect it would've worked well so that might be an option for you. I too am taking neurontin right now along with pamelor at night. I've been given oxycontin for pain but as you have experienced, narcotics don't work so well for relieving this type of pain.

I have an atypical TN (type 2) and it is bilateral. I've read that most of the standard treatments don't work for those of us who have both MS and TN or they may provide temporary relief that includes the available surgeries for TN. I have asked myself if the surgery albeit a temporary solution might be worth the relief from the pain..idk at this point. I just can't imagine a lifetime of this. Right now I can't chew without increasing my pain so I am drinking most of my meals.

Thank you so much for posting. Maybe we could pen pal and support each other through this. I'm almost convinced that until you've experienced pain from TN..you haven't experienced true pain.

Take care -
Melissa

[dmcmtk]

Diagnosed with MS Nov. 2010. Experienced fairly severe TN Nov., Dec., Jan. . Couldn't sleep, shave, breeze from an open window was unpleasant, taking a shower was like being tortured, first time I was left crying purely from pain. was put on Lyrica, and Melissa, not to make light of things, the high as a kite part was the only good side effect. At its worst was taking 450mg a day. Worst side effect was dizzyness and unsteadyness on my feet, which is not a good side effect when you already are feeling that from MS. I'm still on Lyrica, down to 225mg a day, the TN is still there but not as severe. I was just browsing on Youtube watching videos of TN sufferers, and it brought tears. Then there was a woman's video discussing her relief from laser therapy. She had it in one of the Carolinas at a place called LaserMedCenter. The name of the treatment is Low Level Laser Therapy or LLLT. I just fond out about this half an hour ago and bookmarked several pages. I plan to do more research on this, it's 12:45 where I am, in the coming week. It's actually an FDA approved treatment. Godspeed.

Dave

[VickiD]

Hi Melissa and Dave,

Melissa, I'm so relieved to find someone in the same situation...so sorry you suffer with this too, though. I'd love to be penpals! How do we go about exchanging e-mails? I'm heading to bed but we can hopefully talk about this more soon.

Dave, I'm definitely going to look into the lazor treatment you mentioned. When I worry about the future a good friend reminds me that in my lifetime there may be new treatments to relieve the pain of TN....that thought makes me feel hopeful.

~ Vicki

[KoKo]

VickiD: I'd love to be penpals! How do we go about exchanging e-mails?

Hi Vicki! Here is some info for you that might be helpful:

Email addresses must be manually added to user profiles for them to be visible. Here's how to do it:

Click on UserCP (1st item at the top of the page, on the left side, in the blue Navbar)

Choose Edit Your Details

Scroll down to Additional Information

Type your email address in the URL field

Scroll to page bottom and click Save Changes

Your profile is only visible to registered logged-in members. Adding your email to your profile is done purely by choice. You can remove it at any time.

Here's another way to communicate - the Friends of MSWorld website.

http://friendsofmsworld.proboards.com/

You can PM (Private Message) each other, and post pictures.

Take care,
KoKo

[VickiD]

Thanks, Koko! I had no idea there was another site where we could interact with other MS'ers. I appreciate your recommendations.

[VickiD]

Attn: Melissa

I added my e-mail address to my profile under "favorite urls". I'd love to hear from you!

[dmcmtk]

Laser update

I called the LaserMedCenter I referred to in my earlier post this last week. For starters, the technique they use is not LLLT, however beyond that the technical information is way beyond my knowledge. Generally, they treat patients one or two times a day for two weeks to twenty days. I told the woman I spoke with that I had MS, and asked if they had treated TN/MS patients before and she said yes, but generally qualified her answer that MS could make the situation more uncertain. The word re-myelinazation came up and she said that in part is what the laser treatment is supposed to do. The cost of the treatment if self paid is around $5000, so in my mind I have to balance that against the close to $4000 a year I'm paying for Lyrica. She told me to fax a copy of my insurance card for them to find out if my insurance would cover it. That I will do, but I will still need to understand exactly how the treatment works before I would commit to it. Soooooo......I guess I dont know and have to do more research. Right now, as I'm typing I think I will try to get the names of the MDs associated with this center and see how they check out. That's all I have for now, Dave