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1

After reading a bit, I have determined that everyone’s story is just a bit different. So here is mine:

During the last week of September, 2010 I had all of my teeth removed. Being an older male with dental problems is not uncommon and the dentist though it would be best. On November 19 I started to develop what I thought was some kind of tooth ache (sharp shooting pain from jaw to eye). I was able to control the pain (my threshold is very high and I can mental block it for a period of time) but it just kept getting more frequent. On Monday the 22nd I was working and I was losing the battle to control the pain. I had a hearing test on Tuesday morning and went to the test and was able to control it through the test, but by noon I had lost the battle, the pain could no longer be controlled. I had a dental appointment for the next day, but I could not wait any longer. I went to my dentist, he did X-Ray’s of the side where the pain was and found nothing. He thought that maybe I had a sinues infection, so he treated me for that and gave me some Loratab for the pain. I never took any drugs for pain, so you would expect the loratab to work well. I took one, 40 minutes later took another, and 30 minutes later took a third. It was having no effect on the pain at all. When I started to reach for a fourth one, my wife stopped me and took me to the ER. I do not know what they gave me but they were able to stop the pain. They did a CT scan, looking for a sinus infection (since I had already been to the dentist, that cause was already ruled out). The CT scan came back clear. So the ER doctor told me to continue with the medication the dentist gave me and gave me scrip for Oxycodone with instructions to return to the ER if that was not able to control the pain should it return. My wife indicated that the Doctor told her that I could have TN but that he wanted us to see my family doctor. The next day I was still out of it so stayed home that day. Thursday was turkey day but the wife had me an appointment to see our doctor Friday as soon as he got to the office. He looked at everything and said that he though he knew what was wrong but he wanted full blood work up, an MRI and a Carotid Artery Ultrasound. He also gave me scrip for more Oxycodone. That was all done the next week and he had me back in his office the next Friday and told us that from everything he could see, I had TN. He stated that he would start with the prednisone for 5 days, and see the effect. I have finished my second five day dose after an attack that was set off by shaving.

So that is the story, I had the major attack and some minor ones since (the ER one being a 10 the others have ranged from 2 to 6). If I have to take the Oxycodone, then I cannot work as my mind must be free to make clear and well supported decisions. So far my employer has been very supportive, but I do not know how long that will last.

Questions will follow. Thank you all for listening.

2

Hi Jerry. I am so sorry you are suffering this way, but am glad you have found this site. I would suggest asking your doctor to see a Neurologist. Most of us seem to take anti-seizure medication and they tend to know the ins and outs of these medications. Plus there are other options out there and may be able to recommend something else. I know there are some posts on here with suggestions for helping acute attacks, but everyone is different. The biggest thing I have found lately is wrapping a small blanket around my head at night. My face tends to get cold when I am sleeping so this keeps it warmer and allows me to go to sleep. Good luck with finding the right medication.

Hugs,

Debbie

3

Hi Jerry,

My family has a history of dental problems. So, unlike you, I decided to root canal and crown my teeth. I have 21 crowns done and 3 to go. I have bilateral TN, so have done both sides in an effort to control the pain.

Unfortunately, that didn't work to stop the pain.

I have been diagnosed since 2001 and currently take gabapentin, generic dilantin, amitryptilline and topamax, along with xanax to sleep at night.

Meds like tegretol and trileptol are often helpful for a lot of people. I am apparently allergic to both of them.

I still have acute attacks on both sides and have already had surgical intervention on the left side.

When I was first diagnosed, I brought in the definition and expected treatment and side effects from meds to my employer as we "walked the journey" of TN together. It seemed to help them understand my need for time off and good medical care.

Please ask all the questions you need. I'm sure someone here has some experience with it.

Jackie

4

Hey Jerry!!!

Hi im rodney...I was misdiagnosed for 2 months and went through a lot of PAIN. I found that when i took norco and Cyclobenzaprine together then my pain subsided. I also took 600 mg of ibupropehn to relieve the inflamation of the nerves. Whenever i feel it about to hit me i take that cocktail of meds and it goes away. The doc says that the muscles are spasing and cuasing me more pain. That is why i take the muscle relaxer. It breaks through the pain.!!!!

5

WOW Jerry! You are right… our stories do all have their own little twists to them, but you and I have alarming similarities… probably because we both have TN… but seriously, I can really feel your pain. I had 4 teeth removed before being correctly diagnosed. I take NO narcotics, only Tegretol, have you tried that yet for your treatment? My neurologist suggested it and it works fantastic for me… others like neurotin… Prednisone is only a temporary relief… a nice one, but very temporary AND doesn’t always work it somethings sets it off! You can read my story, and I will email you one I sent another member with more detail! Thanks for sharing and I hope you can find some relief soon. :slight_smile: