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where should one start?

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Unread 09-26-2012, 06:52 PM   #1
ht7272
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Default where should one start?

I have been having pain for 6 months. Originally thought jaw/ear pain. In the last week, it has become debilitating sharp pain through jaw, cheek, behind eye as well as the ear/jaw constant pain. I have had to leave work with nausea from the pain. MRI was fine and now doctor is on vacation for the next week and 1/2. I am on Tramadol in the meantime, but trying to figure out 1) how to function at work while only partly controlled with this and 2) how to approach doctor about this pain in a way I can be heard. I felt they did not hear how entirely debillitated I am by this (as exhibited by not getting me in before vacation). Any suggestions appreciated. Clearly I have not been diagnosed with TN (or anything at this point) but it is the only thing that seems to even remotely fit....
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Unread 09-27-2012, 04:56 AM   #2
Fizzbw
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I'm sorry, it's horrid isn't it. There are many other causes of facial pain, many easy to solve. Unfortunately, all these conditions are diagnosed on patient testimony, and if you have a useless doctor it's very difficult.

First thing to do is write a pain diary so the doctor can see that. He may want you to try an anticonvulsant or an antidepressant, but make him let you see a specialist if it goes on for more that a few months. Many people get TN attacks that then go into remission and some even don't have any more attacks.

Try not to stress about it as that makes it worse, easy to say I know, but even 10 deep breaths can make a difference.

Don't assume you have TN, I convinced myself I had appendicitis the other day, turned out I had a UTI!!

Best of luck

Niki xxx
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Unread 09-27-2012, 03:38 PM   #3
ht7272
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Thanks for the info. Actually got diagnosed today. Said either TN or ATN. Starting on tegretol. Glad I decided to go and see the docs partner. While I did not want to have this, knowing that we have a plan feels so much better than nothing.
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Unread 09-29-2012, 03:07 AM   #4
Fizzbw
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Ok, now you have a hat to hang your peg on

Firstly I'd buy The Book Striking Back. It's a must read for "us". Secondly, find a good specialist. Third, don't panic, stress and all it's lated conditions make the pain worse, practise relaxation and deep breathing. One good one is five deep breathes, count up then count five more counting backwards. I solved a bad attack last night using this alone, it can be done. Still couldn't do anything else, but at least the pain had gone!!

There is a wealth of information on line, but do treat with some caution unless you can follow the provenance. Also, be aware that there is a preponderance of scary stories on line as those who have TN in all it's variables who get better and are controlled, don't tend to hang around the forums ( I know there is a Latin plural for that... Forii??) those that do are much appreciated. So the denizens of these forums tend to be like me and have the rarer complicated versions....please don't take us as the norm.

Big hugs, keep in touch here, let us know what the doctor does next.

Niki xxx
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Unread 10-06-2012, 02:17 AM   #5
BethO2L
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Amen and Halleluiah!!!!

Great advice. Remember if we like it or not Neuro's deal with medical issues far worse than TN so we don't always go to the top of the line when it comes to appointments even though we should!

Take a good Vit Bcomplex, get rid of the aspartame, MSG and caffeine. Take care of yourself, sleep, eat well and drink water. Learn to meditate even if it's a relaxation and breathing,,,,pick up a cheap CD at a book store and learn,,practice it daily,,,,it can lessen or almost prevent an attack if you can control your breathing,,,sounds silly but it's been helping me for a decade and still helps...

Take internet info and advice cautiously. Unless it's from a really reliable source ,,,just be careful...
Everyone here knows what you're feeling and going through and we each have our own stories but here ,,we all believe you and are here to give you what we have learned,,,,

Stay hopeful,,, there are still MD's out there that are trying to find new ways to help,,,,have hope.

Let us know what you need or just come here to stay connected,,
we know what you're feeling,,,so stay connected with us!!!
Beth
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Unread 11-20-2012, 09:00 AM   #6
Ambika
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Heart How My Doc Stopped TN Pain Immediately!

Hello. I have had CRPS/RSD for 34 years, during which the nerve pain has spread throughout my body. I was finally diagnosed 6 years ago. About a year ago, I developed severe TN following a sinus infection. I went to see a great doctor, a specialist in Physiatry and Pain Management. He gave me a Lidocaine solution (I think it was 3%) and had me fill a prescription for it as well. He also gave me some long cotton swabs and asked me to pick up more at the drugstore. Not every drugstore has them. I found them online They are about 6" long with a cotton swab on one end. My doctor explained how I should use the swabs and lidocaine solution. He told me to dip the swab into the lidocaine solution, lie down flat on my back, and then introduce the swab into the nostril on the painful/TN side of my face at a perpendicular (90 degree) angle to my face (not at all the same as aiming to put the swab UP my nostril. He explained that I should do this gently and that I would feel the swab come to a stop at a place where it will feel like the swab has reached an end point in the canal. However, there is a 'door' in this spot. If one has kept the swab at the all important 90 degree/perpendicular angle to the face (when lying down, the swab should be pointing up to the ceiling), then one can continue pushing the swab forward. The 'door' at the seeming end of the nostril canal opens and the swab slides through. Let the swab stay in that position while it numbs the trigeminal nerve. Now, I don't recommend you trying this on your own, without physician supervision first. What I do recommend is phoning up pain management specialists and/or physiatrists and asking if they are familiar with this technique. It is so simple. So easy. I did it 3 times the first day and had immediate relief. The second day, I did the procedure 3 times again. On the
third day, I did it twice. After that, I stopped. I was completely free of TN. Somehow, anesthetizing the trigeminal nerve, stops the pain signaling and allows the nerve to relax and heal. I hope you and everyone tormented by the pain of TN learns this simple and effective treatment. I doubt a neurologist would know about it. However, a really good pain management specialist and/or physiatrist should know it. Unfortunately for anyone with a medical problem, all doctors are not alike. They are people first - doctors second. Like all people, some are excel at what they do, some are medium good and some are ignorant, incompetent, rude, etc. So, my recommendation to find a good Physiatrist or Pain Management specialist is qualified by another recommendation - to search for a good one and begin by finding out if they are familiar with the procedure I described before wasting your time and money going to a doctor who will either not know or not care or both. By the way, the doctor who gave me this simple and effective treatment served on 16 Olympic teams and directed one of the country's foremost Pain Management Centers at a University Hospital. His credentials are impressive. His colleagues are impressive. He is tops technically, at the forefront of his twin specialties. Most importantly, the simple and easy treatment he gave me for TN is NOT SURGERY.

Quote:
Originally Posted by ht7272 View Post
I have been having pain for 6 months. Originally thought jaw/ear pain. In the last week, it has become debilitating sharp pain through jaw, cheek, behind eye as well as the ear/jaw constant pain. I have had to leave work with nausea from the pain. MRI was fine and now doctor is on vacation for the next week and 1/2. I am on Tramadol in the meantime, but trying to figure out 1) how to function at work while only partly controlled with this and 2) how to approach doctor about this pain in a way I can be heard. I felt they did not hear how entirely debillitated I am by this (as exhibited by not getting me in before vacation). Any suggestions appreciated. Clearly I have not been diagnosed with TN (or anything at this point) but it is the only thing that seems to even remotely fit....
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Unread 12-08-2012, 10:48 AM   #7
Ambika
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Default To HT7222b- I think I know what you have and what to do!

Quote:
Originally Posted by Ambika View Post
Hello. I have had CRPS/RSD for 34 years, during which the nerve pain has spread throughout my body. I was finally diagnosed 6 years ago. About a year ago, I developed severe TN following a sinus infection. I went to see a great doctor, a specialist in Physiatry and Pain Management. He gave me a Lidocaine solution (I think it was 3%) and had me fill a prescription for it as well. He also gave me some long cotton swabs and asked me to pick up more at the drugstore. Not every drugstore has them. I found them online They are about 6" long with a cotton swab on one end. My doctor explained how I should use the swabs and lidocaine solution. He told me to dip the swab into the lidocaine solution, lie down flat on my back, and then introduce the swab into the nostril on the painful/TN side of my face at a perpendicular (90 degree) angle to my face (not at all the same as aiming to put the swab UP my nostril. He explained that I should do this gently and that I would feel the swab come to a stop at a place where it will feel like the swab has reached an end point in the canal. However, there is a 'door' in this spot. If one has kept the swab at the all important 90 degree/perpendicular angle to the face (when lying down, the swab should be pointing up to the ceiling), then one can continue pushing the swab forward. The 'door' at the seeming end of the nostril canal opens and the swab slides through. Let the swab stay in that position while it numbs the trigeminal nerve. Now, I don't recommend you trying this on your own, without physician supervision first. What I do recommend is phoning up pain management specialists and/or physiatrists and asking if they are familiar with this technique. It is so simple. So easy. I did it 3 times the first day and had immediate relief. The second day, I did the procedure 3 times again. On the
third day, I did it twice. After that, I stopped. I was completely free of TN. Somehow, anesthetizing the trigeminal nerve, stops the pain signaling and allows the nerve to relax and heal. I hope you and everyone tormented by the pain of TN learns this simple and effective treatment. I doubt a neurologist would know about it. However, a really good pain management specialist and/or physiatrist should know it. Unfortunately for anyone with a medical problem, all doctors are not alike. They are people first - doctors second. Like all people, some are excel at what they do, some are medium good and some are ignorant, incompetent, rude, etc. So, my recommendation to find a good Physiatrist or Pain Management specialist is qualified by another recommendation - to search for a good one and begin by finding out if they are familiar with the procedure I described before wasting your time and money going to a doctor who will either not know or not care or both. By the way, the doctor who gave me this simple and effective treatment served on 16 Olympic teams and directed one of the country's foremost Pain Management Centers at a University Hospital. His credentials are impressive. His colleagues are impressive. He is tops technically, at the forefront of his twin specialties. Most importantly, the simple and easy treatment he gave me for TN is NOT SURGERY.

I'm sorry for the pain you are having! It sounds very much like something that happened to me last year following a sinus infection. Please not that I am not making a diagnosis, as I am not a doctor. I'm just one who has lived a long time with CRPS and experienced many different types of nerve pain. Please see a doctor - a good pain management specialist if possible. Since I already had a great combination physiatrist and pain management specialist 'on tap,' I obtained relief simply and quickly. My doctor told me that I had Trigeminal Neuralgia. You may wish to look this up to see if the symptoms are like yours. My doctor gave me a lidocaine solution and instructed me in using a very long swab introduced at a special angle (I'll leave this part for your doctor, into the nose and through a 'gate' to a place where the trigeminal nerve can be anesthetized with the swab-introduced lidocaine solution. I did this 3 times on the first day and second day. Once on the third. Each time gave me immediate, complete relief for a long time and a complete cure in three days. Good luck healing! ambika
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