I found this site after spending the last few days trawling the internet trying to find information regarding the pain I have been experiencing. It started a few weeks ago when I began getting pain in my lower jaw on the right hand side of my face, It went on for a week, all of my teeth hurt at the back and I assumed it was dental as I was diagnosed with peridontal disease and bone loss last year. I went to the dentist and after xrays was told there was nothing they could see that would cause my jaw pain but I was given antibiotics in case of an infection. Skipping forward a week to last Monday around 11pm, I had just gone to bed and still in pain with my jaw, I noticed my bottom lip, right side had gone numb and hurt more than I thought it should have if I even touched it. My jaw pain was getting worse so I took Neurofen painkillers and tried to sleep. Around midnight I was hit by a severely intense pain in my jaw that lasted no more than a minute or two but was soooo painful it kind of shocked me! Relieved it went so quick, I tried to go back to sleep but 20 mins later it hit me again. This then happened every 20 minutes throughout the whole night, lasting for no more than a minute or two. Each time, I experienced the most unbelieveable pain I have ever known in my life, always in my jaw, a lot of the time in my cheek bone and sometimes my temple too. I'd feel it coming and within seconds I would be literally running around the house in sheer panic, gripping my face, screaming in agony. I thought I was going to die, infact, after a few hours and feeling totally exhausted, I actually wanted to. By 7am my husband insisted I go to the Accident and Emergancy Dept where I was told by the receptionist to go and see the dentist :( In panic, I screamed it wasn't dental, that my face was going to explode and they finally agreed to see me. I was given oral morphine which did nothing and told it was TN. I was given Carbamazapine 200mg and told to take one three times a day and also Tramadol. I took these tablets and went back home where I zonked out at long last. I don't remember the next two days much as I slept so much due to the drugs but by Wednesday night the pain had gone into a dull ache so I chose not to take any more. Since then, I am still feeling a constant ache in my jaw, teeth and cheek bone, the odd sharp stab in my temple and cheek and odd sensations of numbness and tingling in my bottom lip and cheek. I've not taken anymore drugs as the pains are bearable. I'm just so, so scared that awful intense pain is going to come back. Just the thought of it happening again scares the life out of me! What I need to know is will it definately come back or could that have been a one off? I read awful stories of people getting it over and over again for the rest of their lives and don't think I could deal with it :( Can a person have it just the once never to return? Or am I now just waiting for it to hit me again?
Sorry for such a long first post and thanks for any answers you can give me. I'd never heard of TN before this and am trying to find out as much as I can,
If it is TN unfortunately it will come back. I would make an appointment to see a neurologist as soon as possible to get a diagnosis.They will have you describe your symptoms and more then likely send you for an MRI.TN pain can come and go but usually progresses and gets worse. If you responded well to those medications then that is an indication that you may very well have TN.Those medications that you were given are not pain medications but anti convulsive meds which work to relieve TN pain . Good luck and keep us posted we all know that fear that you are going through thats why it is important to get a good diagnosis and treatment. .
Definitely agree a Neurologist is the next step, asap. I hope for you it is not TN, but the symptoms sound like it could be (although I am no Dr). There is help out there and it if TN important to find a Neuro who is familiar with it. Sometimes takes going to a few or trying to do homework ahead of time about Dr's. TN is not the easiest to live with, but there is life with TN. But important to know and to have a plan ready with meds etc. Of course it is scary, especially in the beginning,we all know that fear and understand. It is important to be armed with knowledge, but don't let yourself get overwhelmed with it. I have had TN many, many years, went few years undiagnosed and looking back not sure how I got through that. On Gabapentin now and have had to increase dose over the years, have good and bad days, learn to appreciate the good and keep on the best I can each and everyday. The fear of an attack is hard to learn to live with, but can be done, I have not had the best few days and that fear is there, but when I have remission times the fear of it greatly diminshes. And this group is a huge blessing for support, knowledge and sometimes just to vent to others that understand. Let us know. We care.
Thank you all so much for your replies. I went to see my doctor today who after listening to my symptoms said in her opinion it was TN. She said I didn't need to see a neurologist. That I should continue with the carbamazapine tablets and see how it progresses. She wants me to have blood tests for vitimin deficiancies and diabetes, she said sometimes this can cause trigeminal neuralgia symptoms - is that true? I've not read it elsewhere. She made me follow her finger to see if I could see one or two fingers for some reason and sent me on my way with a leaflet about TN. I felt like it was quite a waste of time to be honest as she spoke over me, made me feel rushed and like she wasn't interested in what I had to say, she spoke to me like I was a deaf, elderly woman, I'm only 41..lol. I won't be going back to see her again. I will carry on with my tablets and see what happens although I now feel quite down about it. It's like '..Yep, you have TN, take your pills and get on with it, done'. :(
Since my last post, I'm still experiencing pains in my cheek bone and jaw bone but nothing close to the unbelievable pain I felt the other night so I'm going to try and put it to the back of my thoughts and just get on with my days.
Thanks again for your replies, they really helped :)
Hi Dee...I would you this site to educate yourself on TN as much as possible and then seek out a neurologist. I cant agree with her opinion that seeing a neuroligist is not necessary. They will probably do an MRI, to confirm diagnosis, although many times compression of the nerve doesnt show on MRI. Neurologist will also do a thorough neurological evaluation. Everyone has different opinions but I would not leave this in the hands of a general doctor. Good luck and keep us posted.