I am so very sorry you are going through a similar situation. I am going to try a Cefaly device as a last ditch option. My neurologist wrote a script for me and I can order the device through Costco.us
I am like you - I can handle the pain through 6ish level but then after that I am gone. Would you qualify for a Sphenopalatine Ganglion Block? Most of my pain is V1 level and the temple area so I do not know if this block would help me, but it could possibly help you. Is this a possible option?
The Cefaly device is similar to a tens device for migraines. http://www.cefaly.us/en/how-it-works However, it is not recommended for TN or ATN, but I am going to try it anyway. I started out with migraine headaches and believe I still have a mixture of migraine/ATN headaches, so perhaps the device will work.
Hi Everyone, I am writing in general discussion with hopes that many visit and read what has happened to me. After two years of suffering with facial pain, last May of 2016 it was so bad that I had to go to emergency rooms 4 times in a month. I could not hold down any food to take pain meds and or anti seizure meds. I was vomiting and had to take off of work. I had visited a Cyber Knife in Tulsa, and decided to see a neurosurgeon. I went to see Dr. John Main located in Tulsa 918 764 9999. He interned in the UK. I finally got a date set for July 12th, had to fight and plead with my insurance company because the hospital did not except my HMO plan. It was a pleasant experience at the HiIlcrest Hospital. The main plan was to have Micro Vascular Decompression (MVD). But when I came too I was told by the doctor that I had a tumor on the 5th cranial nerve about a centimeter and the doc took it off and reattached everything the way it should be. Dr Main said “I can not believe that with the MRIs that were taken prior to seeing him the doctors did not catch that.”. So now I am on the mend. It will be about 12 to 18 months. The tumor was a schwannoma which some people tend to get them. My Trigeminal nerve has been damaged from a 2009 cyber knife treatment of the same kind of tumor resting on my acoustic and facial nerve. So my TN is trying to mend itself. However, I still have to keep taking my meds because I still have been having 1 or 2 little strikes in my eye now and then and have a headache that Tylenol helps. So the only advise I can give is do not waste your time being told you have TN and go see a neurosurgeon, one that is experienced with this disease and wants to help you…Best to all!!
How long did you have TN before you go to the point of having the surgery?? My TN hasn’t been diagnosed that long but after two meds and working on my third, I don’t know if it will help either. Neurologist said that he would refer me to a surgeon as I am allergic to all the other meds.
My MVD was performed on 10/18/2016… So I dono about this MVD being a breeze. I spent over 24 hrs in Icu then less than that in a normal room. I think I coulda used another day in hospital but I’m very stubborn. I’m feeling pretty miserable recovering. The shocks came back the first night in icu after staff gave me a cold pack to use. Bam. And the tears started rolling thinking the nightmare returned. I’ve had a few more episodes of TN pain since but was told could be residual from all of the manipulation and inflammation. I also am getting dull but pretty constant throbbing and was told it’s bone pain from where it was cut.
I’m so grateful and actually cried tears of joy just for waking up from the surgery lol. This recovery although has been pretty terrible. I have such crazy pressure pain and heart beat shwooshing in my ear right only I f I exert myself in the slightest bit. Hearing is extremely diminished as well. I’d say I have about 10% hearing in that ear right now. NP told me this is from the inflammation. The swelling in my neck was intense! But is settling down. And still can’t turn my head. I was sleeping a lot on and off. And just trying to keep on top of the pain. Now taking the shortest cat naps which are driving me mad. I was really hoping the recovery would be easier than this (and I am NO stranger to pain!). I feel I’ve read a lot of false advertising. But then again I do have underlying inflammation issues. Feeling hopeful but very crummy still… Am I sounding like a baby? PS One thing everyone was right about. One cool looking scar!
Took me 8 wks to recover. It takes time. Now I have a csf leak 4 mos later and surgery Nov 7 to go back in and seal with bone wax. Hoping it helps the fluid in my ear, pulsitile tinitis and horrid taste. Anyone know how long I should expect to be out of work for this?
Hi! I have had TN for approximately 5 years. The pain until 6 months ago was control with Tegretol. I have tried quite a few other drugs, but I could not live with the side-effects. I am considering surgery. I want to go to a center of excellence for treatment and surgery of TN. I am considering the University of Pittsburg Medical Center. Does anyone have knowledge of experience with them or any other center of excellence for TN? Thanks Nancy
@April csf leak is one of my biggest worries since I dont have help everyday and have strained myself a few more times than I should have. The pulse tinnitus is HORRIBLE worse when sitting or standing. After while of laying down seems to go away. Which today has been a day I’m just laying down to escape the stress of it! I can’t believe you have to have another surgery! I am so sorry to hear that… That scares me so much too. I guess it’s great I don’t think I taste anything. But these ear symptoms holy crap. It even feels deep down something isn’t right but I will give it the time to heal and trust the surgeon. I do not want to go through this again! And I’m so sorry you have to! Please feel better soon and I hope to see an update from you ️
PS One thing everyone was right about. One cool looking scar!
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