Trigeminal Neuralgia?

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SarahBear9708
Regular Member


Date Joined Jun 2009
Total Posts : 286
   Posted 6/23/2009 1:29 PM (GMT -7)   
Does anyone here suffer from it? What have you used for treatment? How do you deal with the pain? Tips/advice?

Thanks everyone!
~*~Sarah~*~

"You were only given this life because you are strong enough to live it."

Dx: Fibromyalgia, Chronic Fatigue, Trigeminal Neuralgia, Migraines, Anxiety, Insomnia, Acid Reflux, RLS, Asthma.

Rx: Indomethacin, Buspar, Cymbalta, Lyrica, Requip, Nexium, Advair, Compazine, Lunesta.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/23/2009 7:53 PM (GMT -7)   
Hi Sarah,

I know that trigeminal neuralgia can cause many different painful symptoms in your face. What areas are giving you trouble?

I have something "similar" to trigeminal neuralgia. I have severe pain in my eye from a traumatic injury that I had several years ago. In trying to treat the eye pain, I have gone through a lot of treatments that they use for trigeminal neuralgia & shingles patients.

If you're not already seeing a neurologist, you need to be. I was sent to a pain managment specialist (PM) by both my neurologist & ophthalmologist after over a year of no luck treatment wise. I did try a lot of nerve medication, anti-inflamatories, & even migraine medication to begin with (gabapentin, cymbalta, indocin, imitrex, just to name a FEW) , but when none of that, along with other things, didn't help, they felt that I needed to give nerve blocks a try. My PM tried two types of nerve blocks on me, both of which he uses with trigeminal neuralgia patients (although I know that he also has several more procedures in his arsenal that he uses with TN patients, but that did not apply to my situation). We tried sphenopalantine blocks & stellate ganglion blocks. The sphenopalantaine blocks are either done by injecting the ganglion at the back of the nose/throat, or by sticking lidocaine soaked q-tips down your nose, allowing the meds to diffuse into the ganglion (this is what they did with me). The stellate ganglion blocks are sympathetic nerve blocks done using a fluroscope. They inject the stellate ganglion, which sits right above the spine at about C3 in your neck. I know that this block is a common block for facial pain. If they hit the nerve right, it makes the whole side of your face that was blocked droop for several hours. If you don't already have a PM, you might want to look into seeing one, who could potentially try procedures like this with you.

In addition, I'm looking to seeing a neurosurgeon recommended by my neurologist, that has had luck with nerve stimulation of the trigeminal nerve. I guess that it has completely eliminated the pain of some of my neurologist's TN patients. I'm not sure if this is an external or internal stimulator. I need to get more details, but you can search online for information about "trigeminal nerve stimulation" & you should get a lot of hits.

I have been on many opioid pain medications, but they have not helped me at all. Facial pain is supposedly very hard to treat (especially the type of pain that I have), although we also think that I have some kind of genetic resistance to pain medication.

That's about all that I can think of that I have tried that is compatable with TN. I hope this helped some! Let me know if I can be of any further help. It's not too often that I come across anyone that has any type of facial pain.
Let us know how things go, and feel free to post on the CP board any time you like. It's a really great place! Oh, and if it helps at all, I'm only 21.

Skeye

Post Edited (skeye) : 6/23/2009 9:02:16 PM (GMT-6)


SarahBear9708
Regular Member


Date Joined Jun 2009
Total Posts : 286
   Posted 6/23/2009 11:00 PM (GMT -7)   
With mine, I had a few weeks of pure misery, I was having it every night, and NOTHING would help the pain. I started Lyrica and it helped some. What really helped though was getting my wisdom teeth out, apparently they were pushing on the trigeminal nerve or something. I still have bouts every now and again, but thankfully not as often.

Wow, Skeye, you have been through alot! You must be so incredibly strong! I am definitely wanting to see a PM, and am just waiting to see if my doctor will do a referral for one. (With my insurance, you need a referral from your PCP for everything.) I am hoping to see one not only because of the TN, but also because of fibro. Between the two, the pain is never-ending. I also find that the TN gets worse when I'm really tired, which in turn happens alot due to the fibro.

I'll definitely do some research, and please keep me updated with your situation as well! And thanks for the help and advice!

Oh and btw, I'm 20. :)
~*~Sarah~*~

"You were only given this life because you are strong enough to live it."

Dx: Fibromyalgia, Chronic Fatigue, Trigeminal Neuralgia, Migraines, Anxiety, Insomnia, Acid Reflux, RLS, Asthma.

Rx: Indomethacin, Buspar, Cymbalta, Lyrica, Requip, Nexium, Advair, Compazine, Lunesta.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/25/2009 8:08 PM (GMT -7)   
Hi Sarah,

Best of luck with the PM! Most PM's require referrals, even if your insurance doesn't. That was the case with mine, although I ended up returning to my PCP after about 6 mo. I hope you can find some relief from both your TN & fibro. There is nothing worse than untreated pain! And I agree with you, stress, as well as lack of sleep, seems to make everything worse!

hugs,
Skeye
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