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New- awaiting neurologist's diagnosis

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Unread 10-21-2012, 11:35 AM   #1
Camchrismy
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Join Date: Oct 2012
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Default New- awaiting neurologist's diagnosis

Hi all-

I feel lucky to have found someone who recognized signs of TN early. I had what I thought was a tooth problem for about 2 weeks. Was popping OTC pain relievers like candy with little to no relief. Finally went to the dentist who was baffled when my X-rays showed no fractures, cavities, etc. dentist decided that the pain had to be gum related and put me on antibiotics. That night I had the worst pain ever. Next day was no better and I ended in the ER. ER doc is the one who said it probably was TN. I am scheduled to see the neurologist this Wed. I was put on Tegretol 200mg twice a day by the ER doc. It gives me some relief but the pain is not gone. My symptoms are a chronic ache on the right side of my face from just in front of my ear down along my lower jaw. Periodically ( like when the wind blows or I drink something) I get a shooting pain along the same line but it is extremely intense and it feels like someone is stabbing me inside my jaw and in each individual tooth in both the lower and upper jaw. The pain can last a few seconds or several minutes. Does this sound like TN? I am very scared as I have three young children and am the primary breadwinner in our family. What can I do to take care of myself from a lifestyle perspective???

Thanks!!!
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Unread 10-21-2012, 02:21 PM   #2
Sam
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Welcome to the forum. I don't know much about TN, but I do know that fear and uncertainty ramp up the pain scale. Do you have a good support system at home? Three kids can be a handfull even when you are well. The fact that the ER Dr. recognized TN as a possibility will be helpful if indeed that is the problem. You won't have had to wait for months while trying to find someone to help.

As far as lifestyle, a good diet is always helpful even if it doesn't directly address the problem. Vit.C is a good thing to take daily. Its not stored away like some of the vitamins, so its harder to get too much of it.

Warm compresses will sometimes help with pain, especially wet. I'm guessing that cold makes it worse?

If you can get someone to watch the kids while you get a couple hours to just rest without having to worry about who is doing what.

Hopefully someone who has been through what you are going through will see your post. Try not to expect the worst. It may not be TN, but if it is, medicine is advancing quickly and there may be more treatment options available than you think.

Sam
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Unread 10-21-2012, 07:45 PM   #3
kingb
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Join Date: Oct 2012
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Default Hi

Hi, I too am new to this. I thought I had dental issues as well but was diagnosed with tn a few weeks ago. I am on topomax and it is helping some. I heard Tegretol is the best to treat it. I get like stabs, shocks, and spasms on left side of face only. It's the worse thing I ever felt. I have also been trying deep breathing and lots of b vitamins and water. I also got prescribed lidocaine cream to put on area and gums and it works for a bit. I have an appt w neurologist soon. There is a lot of info out there and support online. Know that you are not alone. Good luck

Quote:
I feel lucky to have found someone who recognized signs of TN early. I had what I thought was a tooth problem for about 2 weeks. Was popping OTC pain relievers like candy with little to no relief. Finally went to the dentist who was baffled when my X-rays showed no fractures, cavities, etc. dentist decided that the pain had to be gum related and put me on antibiotics. That night I had the worst pain ever. Next day was no better and I ended in the ER. ER doc is the one who said it probably was TN. I am scheduled to see the neurologist this Wed. I was put on Tegretol 200mg twice a day by the ER doc. It gives me some relief but the pain is not gone. My symptoms are a chronic ache on the right side of my face from just in front of my ear down along my lower jaw. Periodically ( like when the wind blows or I drink something) I get a shooting pain along the same line but it is extremely intense and it feels like someone is stabbing me inside my jaw and in each individual tooth in both the lower and upper jaw. The pain can last a few seconds or several minutes. Does this sound like TN? I am very scared as I have three young children and am the primary breadwinner in our family. What can I do to take care of myself from a lifestyle perspective???

Thanks!!!
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Unread 01-06-2013, 01:15 PM   #4
shug56
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Join Date: Jan 2013
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Default tn

I am new to this my husband found this site for me after i was told i had tn at first i was told i had tmj I have to have a mri tommorrow follow up with doctor thursday. I am getting nervous that i may have to have surgery none of the meds they have given me so far are not working i am afraid of surgery. i also have copd so surgery scares me .After reading i feel i have a mild case so i pray it stays that way. Can anyone tell me if they have had surgery what the recop time is. Sorry not good at spelling thank you
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Unread 01-07-2013, 09:56 AM   #5
jjlsongbird
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Location: Pennsylvania
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Of course we are all different and our symptoms and experiences can differ, but i will tell you my experience. I was diagnosed in 92, I think. I was able to get by on medications for quite a few years though the meds had bad side effects. When the side effects got too bad and the pain was not contained by the meds, I tried various outpatient surgeries. Radio frequency Rhizotomy worked fine for almost 4 years but my face was very numb and it threw my bite off. When the pain came back, I used meds again till the pain escalated again. Then I tried a balloon procedure that only worked for a few weeks. Finally I had the big surgery - Microvascular Decompression. I would probably have been better off if I'd done that years ago. It took all the pain away, allowed me to get off all meds. I think recovery took maybe a week. I had some bad headaches after it and took some pain meds for the pain from the surgery, but it was well worth it.

I think for most people the pain gets worse over time. But I know some people whose pain went away. It makes sense to me to try meds but if the side effects are bad or they don't help enough, surgery can be a lot better. I guess COPD could make surgery a more difficult choice. A neurologist can help you make the decision.

Good luck and I hope you find what is best for you!
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