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404715 tn?1233829631

Trigeminal neuralgia

Hoping someone can give me an answer as I am desperate.  About two months ago I got what felt like a bolt of lighteneing on the right side of my face that came out of nowhere and have had nothing but excruciating pain since.The pain started on the right side of my face and within two weeks  stopped as quick as it came and moved to the left  side but only lasted a week and for the ramainder of the two months it has been on the right side.I was taking advil, percocet,motrin sinutab, and when they failed to give me any relief I went to the emerg and had an xray done to rule out sinuses and TMJ and was told it was not TMJ or my sinuses. The doctor handed me a script for demerol and said that will end your pain but it didn't help at all.I also went to my dentist thinking it could be a dental problem and that too was ruled out after he took xrays. I should mention that I also saw an ENT who said it was dental, it is not.

Not having any doctors here to help me I went out of town to an emergency where they then put me on tegretol and told me I most likley have trigeminal neuralgia and set up an appointment with a neurologist.I  was on tegretol for two weeks  and waiting  to go to my neurologist appointment but the pain was still unbearable so I went to the emergency in my city where  they changed my meds and put me on neurotin which took a week to work and most of the pain is gone. I was sent for an MRI and it came back negative, he said there is no artery  or blood vessel putting pressure on the nerve so  the pain must be caused by my TMJ even though I explained  the doctor found nothing wrong with it.He also said it is not  TN because it is never bilateral unless you have MS which I know I don't have. I also tried to explain to him that the pain was never on both sides at the same time. I  am sure it is nerve pain because  I get burst of pain that feel like I am being shocked, the pain is around my eye, nose, cheek,lips, teeth and gums. If I touch certain areas on my face  it brings on a sudden burst of  excruciating pain. The wind and cold also bring it on as does washing my face and brushing my teeth.I can't let my pillow touch my face at all. The bursts of pain only last a minute or so but there is one right after the  sometimes it goes on from morning till night and then I could have a day where I get only a few, maybe 30 or 40 attacks. The only time I don't feel the pain is when I am asleep  but soon upon waking and walking around it starts all over again. Driving in a car also brings it on  because of the vibration. I'm not sure how long I can stay on this med because some of the side effects are terrible. I need help and am desperate because I can not go on with this pain and if I have to come off this med I know  the pain will return and then what?

  In July I was bitten by a tic and had a bullseye rash on my calf and my family doctor said it was a classic bullseye from a tic bite and I was wondering if this could have anything to do with what is happening now. He sent me for a lymes test which came back negative and he put me on antibiotics for two weeks and said that would take care of it.  A few weeks after the bite I felt sick, nausea and had severe diahrea that lasted over a month. Could it be linked to my facial problems???

TIA

Tracy


4 Responses
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397460 tn?1268533736
Hi. I have suffered in the past with T.N. and you have my sympathy.  Did the Tegretal not work at all? Can you not take a pain killer with it? One thing I found out was never let the pain start, take your medicines  at the same time every day. I always carried a scarf with me to protect from any breeze, it set it off.
About the side effects of the meds. I think your body will get better able to deal with them as time goes by.I am on steroids 3mths now and still struggling but it is getting a bit better. Try looking at  the Neurolgy Community page here,in the top right hand corner,where it says,"search Med-help" and type in Lymes disease. I have seen alot of post about it and it might be able to help you. Good luck! cath278
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397460 tn?1268533736
Hi there. Trying to get in touch,my fault! Will you go to my profile please?cath278
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Avatar universal
I have TN as well and am surprised your neuro said that you couldn't have it because of imaging studies.  I don't know about having it on both sides, I only have it on one side.  I don't take any regular meds because mine seems to come in waves, with weeks in between.  But I thought I read that Neurotin helps w/this and maybe that's an easier drug to tolerate.  I don't know about having neuro symptoms in association w/a neg Lyme's test.  When you saw the neuro, did you suggest you had TN?  Sometimes doc's get weird about that.
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Avatar universal
Lyme can cause TN...sometimes false negatives happen with Lyme tests...do the Western Blot test...it seems to be more accurate.
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