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  1. The husband of one of my friends had it. Also my cousin’s wife had it. Both had it so bad they were virtually immobilized. Both eventually had the gamma knife, which only helped for a short while. Then finally they had the full-on surgery – which ended it forever. They say the pain is just unbearable. Sorry you are having this off and on.

  2. Brenda I hope that the medicine helps your pain soon.

    My husband has had it since his 20’s. Luckily it wasn’t a constant pain but horrible jaw pain that would last a few minutes and then go away. Just last year he thought about when he was at our doctor’s office and the doctor said it was trigeminal neuralgia. Thank goodness his is not the type that is continuous. It is good to know that there is a medicine that can help it if it gets worse for him.

  3. I don’t know if I had that, but several years ago, I started have severe pain in my left ear. First thought it was an ear infection so went to doc but he said no, nothing there. It kept up… was so painful behind my ear and below my ear toward my job. Now I wonder if that TM is what it was! The ONLY thing that helped it was putting a very strong magnet below my ear lobe and taping it on. Then I progressed to using smaller magnets (though very strong) taped behind my ear in two places and one below my lobe and one in front of the ear. I wore those magnets for a full year.. anytime I took them off (other than to shower) the pain came back! After a couple of years, it gradually went away, and I would only have to wear the magnets now and then when the pain started up. I went to two other doctors and they didn’t know what it was.. never did go to a neurologist though. For 5 years or so, I haven’t had it, but a few weeks ago, noticed that pain again, so on went the magnets! In 2 days, it was gone (the pain) and so far hasn’t come back. Nikken magnets were what a used.. very strong compared to ones you buy through catalogs, etc. I swear by those magnets for various types of pain!

    1. I meant “toward my jaw”. I did go to a cranial osteopath who would do cranial work on my head and that did help, but not totally. Marilyn

  4. Hello Brenda, I have been reading your blog for years but I don’t think I have commented before.
    My mother suffered for years and even had a couple of operations to try and ‘fix’ the problem. One involved wrapping a teflon coating around the nerve to try and stop the pressure. Another involved cutting the nerve on the side of her face just below the ear. The side effect meant her face was numb and she couldn’t feel anything on that side. This meant she ‘lost’ food out of the side of her mouth. Although the pain eased she was often dribbling.
    The pain in the rest of her head remained until she started suffering from dementia. Suddenly the pain disappeared.
    I hope you don’t suffer too many episodes. The pain is debilitating.

  5. Melanie Riley says:

    I’m so sorry you’re going through this. Sorry, but I don’t know of anyone else who has experienced this. I’m glad you’re not planning on going anywhere when you’re on the Gabapentin; I’ve heard that medication can cause drowsiness (among other things). Hope you’re feeling better soon.

  6. I don’t have this but I have Burning Mouth Syndrome . It has several different syndromes caused by a problem with the nerves. Mine has been a constant sore throat . It’s always red and swollen. I take the medicine you mentioned. It helps. I’ve had this for a solid year. Many doctors and lots of tests.

  7. Carole Prisk says:

    I had sudden pain under my jaw the other night. It was very sore and I could feel a lump. I could not angle a mirror to see it and asked my husband to look. A large tick was burrowed half way in and it really hurt. I had been raking leaves in the garden. He extracted it with tweezers, but I still feel a small lump. I never knew they hurt like that!

  8. Nerve pain is agonizing! Sure hope it goes away soon!

  9. carol harrison says:

    My daughter has had debilitating migraine headaches since she was 12 years old; she’s now in her 50’s. She went from Dr to Dr for years trying several combos of meds to get relief. Traditional migraine meds were tried, new combos of them and pain drugs. Nothing gave her relief until about 5 years ago she had a tooth that needed attention and then the pain was so bad she ended up in ER. The gave her drugs for the pain and told her to see a neurologist. After the tooth was taken care of she did just that. Even though she had been to one before, she heard of a different one and decided to try him. Wonder of wonders after a conversation with him he announced to her that she had Trigeminal Neuralgia. He started her on Gabapentin and Propranolol. It has now been years since she had a migraine. Thank God for these drugs. They have saved her from years of painful headaches about once a month or more sometimes. I have taken Gabapentin myself for my back pain but I can’t tolerate it so I stopped taking it. Now I rely on Tylenol Arthritis strength for my back pain. I’m allergic to several other pain meds too.

    1. I take the same Tylenol for neck and pain pain. I only take Gabapentin when this flares up, which is about twice per year.

      1. They couldn’t figure out what was wrong till a neurologist did a full neurological work up, so I know what you all went through!

  10. Sorry you are dealing with this. Can they give you some kind of temporary nerve block to take when this flares up.
    Kris

    1. The Gabapentin works in just a day or so. It’s already better now.

      1. Glad to hear you are starting to feel better.

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