[KathleenMona]

Hi all, I have been experiencing horrible pain in my left ear and lower jaw for almost two years now. I was told in May09 that I have TN. I started on medications, Lyrica,nortriptlyne,carbatrol,neurontin and nothing has helped me. I went to a few different Drs and two say I have Classic Tn and on says ATN. I was going to have cyberknife done and now they say i am not a good candidate. I am so frustrated. I know I can' be the only one that is going through this. I hate not knowing what the next steps to take are...Please help!

[Burntmarshmallow]

Hi Kathleen .
I think it would good if you can ask your doctors what options you have at this point. Have you seen a neruo ? Or a pain management doctor ? They should be able to offer other options and methods to help you cope with T.N. pain. I would very much see either of those types of docotrs and see what they have to offer.


Please read the stickies at the top of this forum
here is a bit of info one of the memebers posted
BobS ...


1. topical ointments, patches, and nasal sprays (Capsaisin, lidocaine, &c)

2. vitamin supplements (B-vitamins especially B12, D, H, potassium)

3. herbal remedies (often contain small amounts of same substances)

4. diet, avoid:
- Salt & foods high in salt like prepared foods.
- Saturated fats, mostly from animal sources like meat, eggs and some vegetable oils.
- Sugars and foods high in sugar like candy, cakes, cookies, etc.
- Stimulants including coffee, carbonated beverages, caffeine, alcohol & cigarettes.

5. musculo-skeletal treatments (chiropractic, myotherapy, osteopathy) - works some for atypical neuralgias, but not classic TN

6. nerve stimulation/blocking (accupuncture, laser stim, TENS)

7. coping skills (self-hypnosis, counseling, stress management, pain management, support groups, &c)

8. Outlets for expression (give you back some kind of a life).

Degree, frequency, quality of pain, tolerance to pain, tolerance to medication, response to alternatives, and surgical probability for success are just some of the factors determining the right answer for you. Whether surgery, medication, alternate treatment or pain management, or a combination, the choice will be entirely personal. What ever helps you manage your pain to your tolerance level is worth pursuing.

Avoid high doses of medication that become as much a problem as the pain they control. Try supplementing medication with alternatives to reduce the amount of medication you have to take.

Attitude and outlook are just as more important as treatment. Don't forget to work on your attitude. Avoid feeling despondent or isolated; and, if you feel yourself slipping, don't be afraid to ask for help.

------------- -------------------- ------------------

there is much info within the stickies up above and it is very helpful to sift threw it. Visit the T.N.A. site also the book Striking Back is a God send too. if you havent read it yet.

I am sorry your are dealing wiht this and hope things get better. I AM glad you found your way here Neurotalk is a great place to find info support and connect with others who are going threw it .
If I can help let me know.
Low pain and I hope you find some solutions to help you soon. Please let us know how things are going for you. Your NOT ALONE.
PEACE
BMW

[Bassetcase]

Hi Kathleen, I too have the pain in my ear. I have not yet experienced the lightning strikes of typical TN. My pain started about 10 years ago and everybody insisted I had an inner ear infection. I knew this was not the case because it was so sporadic. I finally agreed to see an ENT specialist who did all sorts of test and MRI scans on my head. The tests turned up nothing so it was determined that I had TN. I did not believe it and went to 3 different doctors hoping one would diagnose me with something else - no such luck, they are all in agreement. GN (geniculate?) I think is more like what I have, but they all still refer to it as atypical TN.

My pain is centered right in my right ear and the immediate area surrounding it. Hot, and painful to the touch. Hurts to talk, eat, smile or turn my head. The pain is constant - like a large hot drill bit slowly boring into my ear canal with the added effect of intermittent icepick jabs. My episodes usually last about 4 hrs, but sometimes they just disappear on their own within 30 minutes or so.

Thank God, my episodes are still sporadic, but have become much more frequent over the last year. I usually have them about once a week now. Sometimes have 2-3 within a week and then go about 3 weeks with no pain. I take carbatrol only when I have an attack. It seems to help some but the only thing that really helps is my heating pad. I use one of those aromatherapy bags that you heat in the microwave - this always helps. Of course, this is not very feasible to do at work, so I usually have to suffer until I get home - but again, the carbatrol does seem to dull it somewhat so that I can get through the day.

I don't think I have answered your question very well, but thought it might help to compare your symptoms. I went to Vanderbilt medical center here in Nashville to get my 2nd opinion and right off the bat they were referring me to a neuro sugeon - but I did not go. I felt that they were rushing things a bit because at this point my pain is not that frequent.

Good Luck, I hope you can get some relief for your pain. Take care and God Bless.

Rhonda

[KathleenMona]

Originally Posted by Burntmarshmallow

Hi Kathleen .
I think it would good if you can ask your doctors what options you have at this point. Have you seen a neruo ? Or a pain management doctor ? They should be able to offer other options and methods to help you cope with T.N. pain. I would very much see either of those types of docotrs and see what they have to offer.


Please read the stickies at the top of this forum
here is a bit of info one of the memebers posted
BobS ...


1. topical ointments, patches, and nasal sprays (Capsaisin, lidocaine, &c)

2. vitamin supplements (B-vitamins especially B12, D, H, potassium)

3. herbal remedies (often contain small amounts of same substances)

4. diet, avoid:
- Salt & foods high in salt like prepared foods.
- Saturated fats, mostly from animal sources like meat, eggs and some vegetable oils.
- Sugars and foods high in sugar like candy, cakes, cookies, etc.
- Stimulants including coffee, carbonated beverages, caffeine, alcohol & cigarettes.

5. musculo-skeletal treatments (chiropractic, myotherapy, osteopathy) - works some for atypical neuralgias, but not classic TN

6. nerve stimulation/blocking (accupuncture, laser stim, TENS)

7. coping skills (self-hypnosis, counseling, stress management, pain management, support groups, &c)

8. Outlets for expression (give you back some kind of a life).

Degree, frequency, quality of pain, tolerance to pain, tolerance to medication, response to alternatives, and surgical probability for success are just some of the factors determining the right answer for you. Whether surgery, medication, alternate treatment or pain management, or a combination, the choice will be entirely personal. What ever helps you manage your pain to your tolerance level is worth pursuing.

Avoid high doses of medication that become as much a problem as the pain they control. Try supplementing medication with alternatives to reduce the amount of medication you have to take.

Attitude and outlook are just as more important as treatment. Don't forget to work on your attitude. Avoid feeling despondent or isolated; and, if you feel yourself slipping, don't be afraid to ask for help.

------------- -------------------- ------------------

there is much info within the stickies up above and it is very helpful to sift threw it. Visit the T.N.A. site also the book Striking Back is a God send too. if you havent read it yet.

I am sorry your are dealing wiht this and hope things get better. I AM glad you found your way here Neurotalk is a great place to find info support and connect with others who are going threw it .
If I can help let me know.
Low pain and I hope you find some solutions to help you soon. Please let us know how things are going for you. Your NOT ALONE.
PEACE
BMW

Hi BMW!
I thank you for your response. I will look into some of the suggetions you supplied. I have been going to Neurologists (2) and Neurosurgeons and I have been on numerous medications. So far nothing has helped. I don't want to take any more mediation, all they did is make me sick and never helped the pain.

Again Thanks
Kathleen

[adimaria]

Have you checked with a holistic dentist to see if you might have a caviation on that side of you jawbone? Just a thought since I've been heading down that path since being diagnosed with ATN recently. Some holistic dentists can see it with a panoramic x-ray. Or the CAVITAT screen.

Originally Posted by KathleenMona

Hi BMW!
I thank you for your response. I will look into some of the suggetions you supplied. I have been going to Neurologists (2) and Neurosurgeons and I have been on numerous medications. So far nothing has helped. I don't want to take any more mediation, all they did is make me sick and never helped the pain.

Again Thanks
Kathleen