Trigeminal Neuralgia/facial pain

[EllenS]

I am hoping I'm not alone in this...

I suffer horrible facial pain called Trigeminal Neuralgia or Tic Doloreaux.  Basically, the nerves in my face begin to fire, and it feels like lightning, or electrical shocks to my face and inside my ear and throat. 

I think my TN is caused because my parotids seem to be going thru mass destruction right now.  The nerves lie on the glands, and it seems to make sense anyway.  I try not to touch my jaw or face at all because doing so makes the situation worse, but sometimes the pain is so severe I can't help it.  Then it's like a snowball.  Worse pain means I touch it, which makes it worse, which means I touch it.  Yadda - yadda. 

My doctors are not treating me right now and I am beyond miserable.  I'm hoping somebody else here has some experience and can talk me thru my options etc. 

Be well,

~Ellen S

[Joe S.]

The pain in your head is one of the hardest to detach yourself from. To calm your nerves, try an omega three. I use Flax Seed. 8 oz of Carrot Juice can help with endorphins. I also used the breathing meditation "I am ... calm" to reduce this type of pain.

I hope you can find something that works for you. I would also talk to my doctor before I try anything that is a little different.

[Dolly Dimples]

  Poor Ellen, just want to say that I hope you do get beyond that misery soon.
            Toothache is bad , what you got is agony!!

                   I hope someone here can answer your query,
                                             but I hope no one else is suffering the way you seem to be right now!!
                                                          Big hug Dolly..

[Gail]

Hi, Ellen,

I am sorry that you have to suffer through this pain. I can relate somehow. I had facial pain that feels like burning on and off for several years now. It also burns on top of my head and in the occipital area. It comes and goes. It is very painful too. I never was diagnosed with TN or anything else, but I know how it feels. I notice that certain triggers can cause my burning pain in the face and head. Triggers like caffeine in the Diet Coke or latte that I like to drink sometimes. The hair coloring also is a trigger. I used to color my hair blond all over and when  I had the color on the scalp, it started burning really bad and would continue burning several days later. I also blame my smoking habit for it. Smoking irritates facial nerves. Also when I use a hot blow dryer on my hair , it can cause burning sensations on my scalp and face later. Purfumes and detergents too.

Cool air in my face helps reduce the pain. I use a humidifier air flow to calm my facial nerves.

Does your pain comes and goes? Or it is the same all the time? If it comes and goes, watch for the triggers.

Take care,
Gail.

[Jules48cats]

Yikes Ellen
That sounds awfully painful.   I don't have the face pain.  I did have a tooth that was infected and that was 5 days of horrible pain, even with vicodin.  I do have shooting pain and neuropathy in my right leg.  When I stand or walk for 20 minutes or so it is unbearable.   Not only do I have shooting pain, I also get cramping in my hamstring, right behind my right knee.  From there it shoots up to my hip sockit.   If I can sit down and rest it helps.  So I can not imagine how it must be not to get relief from your facial pain.  Meditation may help.  I use it at nighttime when I hurt too much to fall asleep, and it does help. Have you thought about going to a pain management clinic?    Good luck and I hope your Doctor can find something to help. 
Jules

[~elizabeth~]

Sorry to hear this. My father suffered terribly with trigeminal neuralgia for most of his life. He took Tegretol (carbamazepine) which controlled it to some extent for many years until it started to interact with his heart medicines in his late 70s so had to stop. It really is one of the worst kinds of pain.

I think there may have been newer surgical treatments by the time my father had to come off Tegretol, but he was too frail to try them by that stage so I didn't bother looking into them. He had a couple of courses of acupuncture through his GP; he thought the first one apparently worked well, but the second had no effect at all. My father's main 'cure' was a little wooly bobble hat, which he wore in his hospital bed almost to the very end.

I used to suffer terrible pain in the ear/parotid area; I noticed it disappeared when my GP put me on Fluoxetine (to cure my then 'imaginary' thyroid/Sjs problems), so I carried on with it at a low dose, then changed to Citalopram which the next GP thought was a better SSRI for pain control. I don't know what the mechanism was, but they did work to control the pain. I think these sorts of anti-depressents are now thought to have an anti-inflammatory effect. I think tricyclic antidepressants are usually prescribed for trigeminal neuralgia, but these can cause dry mouth.

Good luck, I know how miserable this sort of pain can be.

TGN treatments:
http://www.nhs.uk/Conditions/Neuralgia/Pages/Treatment.aspx