Trigeminal Neuralgia? Anyone else have it?

Discussion in 'Fibromyalgia Main Forum' started by mariemac, Jul 23, 2005.

  1. mariemac

    mariemac New Member

    I am wondering if there are any of you out there have trigeminal neuralgia? I have had several bouts of it.

    Dr. RX'd Neurotin for it but all that has done is make me tired. It hasn't even touched the pain! I also took 2 Ultram and that hasn't helped either.

    I was going to try heat but couldn't stand ANYTHING touching my face. Ice makes me ache even worse plus I couldn't figure out how to get it to my face without screaming. My hair even hurts!

    Now my eye on my right side (obviously the one having TN symptoms) is burning and feels VERY dry. It hurts to talk or touch any part of that side of my face.

    I am really not trying to sound dramatic, it just really hurts.

    Any ideas? Thanks!


  2. pepper

    pepper New Member

    for trigeminal neuralgia and it really helps. She also has FM and Sjoegren's (sp?).

    Her doctor who prescribed the Tegratol said that TN is the worst pain known to man so I can only imagine how you must suffer with it. My sister was in incredible pain for a very long time before it was diagnosed and she got on the medication.

    [This Message was Edited on 07/24/2005]
  3. cjcookie

    cjcookie New Member

    I rarely see her since they live about six hours away. The conversation got started because I was sweating (so what's new) and she asked if I was having hot flashes. I explained the fibro and then she told me about a probably MS diagnosis along with this trigeminal thing. I know she takes a very high dose of neurontin but I don't think she has found anything that helps completely.

    I know this isn't that helpful. I hope you find some help - from the way she described it, it sounds very painful.
  4. lbconstable

    lbconstable New Member

    Hi Mariemac,

    My grandmother has trigeminal neuralgia. She takes Tegretol and that seems to help.

    I feel for you. The pain is so aweful!!!

    Love & Light, Laurie
  5. sunnywey

    sunnywey New Member

    My Dr. gave me Tegretol to break the cycle. It gives me a regular headache, I must admit, but it stops the incredible sharp neuragia pain, right away. And - it actually completely goes away. I just had a bout, and after taking it for 3 days, I'll probably be good for 6 months. I only take 1/2 dose during the day, then whole dose at bedtime when I have it, cuz I don't like the headache it gives me - BUT - it is worth it to get rid of it.

    Oh - I mentioned it last week to my Internist, and he said that amitriptyline can really help neuralgia.

    Good luck! It is horrid pain, I know.
  6. I have TN and know what you are going through is very painful.I had shocking going on in my head where I could not touch it without getting shocked,people thought I was nuts.I had brain surgery that was to take care of it for about lasted 4months i'm back in pain everyday but it is not like before,i've had pain like you had where I conld'nt touch my face.It hurts to take a shower,dry my head,brush my teeth everyday of my life.I'm taking carbatrol300 2 times a day oxcarbazepine 300 2 times a day,baclofen 10mg 2 times a day,and hydrocodone 10-500 for the pain every 4-6hrs.I don't know what else to do but it does suck,but I do know what you are going through never give up hope.good luck this comes from 50yr old male
  7. Rafiki

    Rafiki New Member

    I, and many others, have had complete resolution of TN with topical capsaicin.

    If you research (Google) the relevant words including neuropathic pain you'll get lots of info.

    Follow the directions on the package, the sensation of heat can be intense, and avoid getting in your eyes or other sensitive places.

    I used Tegretol, then neurontin until both failed. Been using topical capsaicin for about 6 years. Now only need to use it every few months. Only problem is you can develop a dental problem and not be able to feel it because the nerves have been depleted of substance p.


    PS I've often wondered if this would be a useful drug for those with FM as it is used for diabetic neuropathy to good effect.

    ETA A bold title because nobody seems to pay attention to this information even though an over the counter cream is the most effective agent against a pain that is sometimes called "the suicide pain."

    It's the same on TN boards - most people think it's too simple. Those who use it get relief, try to convince others, and ultimately just go on with their lives.

    It's not too simple -- it actually works and has been studied by Harvard Med School for various neuropathic pain.

    [This Message was Edited on 08/13/2009]
  8. poets

    poets Member

    I've had that on and off for years. There's no way to describe the pain unless you have it. Even simply turning my head can make the pain shoot into the side of my head and face. It literally stops me in my tracks. I'm on Neurontin for Fibro, but that doesn't seem to help. It takes something really strong like hydrocodone to just take the edge off, and I never seem to have any of that on hand.

    Cold air seems to trigger it. I don't know of any pain that's harder to get rid of. I can feel sincere sympathy for anyone who has to deal with this.

  9. suzannekart

    suzannekart New Member

    I had asked this question several months ago. One person responded with the hint "keep your lips together and your teeth apart when you are not speaking or eating. I know it sounds crazy but it truly works for me. I have not had the pain since she told me this. It took so practice but now if I notice any tension in that area its because I have not been doing this simple thing. All the meds in the world never touched the pain. Hope it also helps you.
  10. Jayna

    Jayna New Member

    As I understand it, the trigeminal nerve is most concentrated just above the joint of the jaw on each side of the head. If I put peppermint essential oil on that spot as soon as the pain starts, I can usually forestall a full-blown attack.

    Another thing I've found useful is to tie a scarf under my jaw and over my head to support my jaw and keep its weight from dragging down on the trigeminal nerve junction when it's inflamed. Looks funny, so I only do it at home, but it makes life more bearable until the situation stabilizes.
  11. Nanie46

    Nanie46 Moderator


    My daughter has trigeminal neuralgia.

    The inflammation of her trigeminal nerve was caused by a chronic infection. She has a chronic borrelia burgdorferi infection (lyme).