Good evening I am new to this site. I have had facial pain for over 2 years. I had breast cancer and am in remission and have been told I have burning mouth syndrome because of stress but the pain started before this time. Then a scan revealed I had blocked sinuses and I had surgery. I woke up from surgery and after an enormous dose of morphine that didn't work I was given gabapentin which stopped the pain. On returning to ENT specialist he said I had got TMJ and recommended physical therapy. I had massage and Acupuncture.
I have been in horrendous pain since and read about TN. Can anyone advise me where I should go next Im so tired of doctors treating me like I have a pyscological problem Thank you
Hi Patsy
I’m sorry u r going through this. It sounds like u have been through a lot. U need to see a neurologist and have an MRI. There are medications to try but if gabapentin was working maybe u just need a higher dose? What dose r u on?
Even a lot of neurologists don’t 't know a lot about Tn. Depending on where u r located u could look for a specialist.
I also have symptoms of bms. Is the pain in your mouth on one side or both?
Jane
Hi Jane thanks for your reply, its very lonely having all this pain and family are supportive but don't really understand. My pain is on my left side. I have pain in my upper gums towards the back amd facial pain, headaches and throbbing in my temple and pain behind my eye. The gum pain (Its not teeth as have all removed at the site) is always there sometimes it doesn't bother me too much but Im aware of it. I can go for weeks like this and then suddenly the pain starts and is unrelenting for weeks and then it all goes back to just feeling uncomfortable. The gabapentin dose 300 mg twice daily and take amytiptalin 20 mg at night. The ENT has referred me to facial surgeon but feel I should be going to a neurologist. To muddy the water I have fibromyalgia, RTA where I my cheek slammed on road and had whiplash injuries. Cheers its been good to talk to someone even though I have moaned. I had been told that BMS is due to stress, so you have it as well as TN have you ant tips for helping with the pain other than meds. Take care
I have bilateral atn but my left side is my worst. I also have pain in the locations that you do and have flare ups that can last days, weeks or months. I have seen a neurosurgeon and he didn't offer me any help as my symptoms are considered to be "atypical". He did refer me to a facial pain neurologist though so I am glad that I met him. You probably should see a neurologist but more importantly you need to find someone that knows about facial pain and has other patients with it.
I have read that myofacial facial pain can be connected to fibro and your injury certainly could have caused damage to your trigeminal nerve. I talk with a lot of tners that also have problems with their neck and cervical spine. I have neck problems and do believe that it is connected. I have also read that BMS is caused by stress. Everything to do with neuropathy can be worsened by stress. For me I have a whole handful of different sensations that my nerves cause me other the straight up pain and that includes a burning or scalding feeling on my skin, both in my mouth and on my face. It comes and goes with attacks. I do think that for me the symptoms I have of BMS are due to the neuropathy.
I was on Amitriptyline and am now on Nortriptyline. Both of those meds gave me oral thrush a few times because of the dry mouth. Make sure you don't have that because it can cause burning and a whole lot of discomfort in your mouth. I always pay attention to whether the symptom is just on one side split down the middle--then I know it is the nerve.
As for pain relief nothing will get rid of the pain but I have little things that I do that help. First you need to pay attention to triggers--could be cold, wind, stress, lack of sleep, your cycle, touch, eating, drinking, talking, etc and try to avoid the triggers when possible or at least become aware of why things are flaring. For me I do have some triggers but tn will freak out regardless of what I do or don't do most of the time. Heat is my best friend--hot compresses, heating pad, hot water bottle, hot baths. Also Voltaren Emugel will help a bit with the deep ache on my cheek and temple. Winter is especially bad for me. Sleep always helps and can reset things sometimes.
I am sorry you have not found a solution to your pain, its the pits don't know what the answer lots of people have unresolved pain. It was a bit crazy having face massage and acupuncture. Ive been back on gabapentin there is still underlying pain but at least its not making me cry now. I will try the volterol I use it on my neck. I too have spine problems having a scoliosis and arthritis on curves, neck and lower spine. I have my check up for my breasts next week so maybe Im in stress well you would wouldn't you. I have to try and keep a sense of humour I said breasts but in reality Ive only it one. Im okish about that it saved my life. It is very cold here in uk and bitter wind maybe should try wrapping a scarf round my face when I go out. Where do you live sounds like its cold from what you say. So keep warm and get the hot water bottle out. Thanks for your time. I have joined a UK group yesterday on Face Book lots of info and tips, there are members from all over the world, its a closed group I will tell you info if your interested. Take care and most of all keep warm Sue x ps have upped my dose of Gabipentin pharmacist said the dose isn't enough for me... good advice you gave me