It's back

I hate this time of year. I always have the worst of my pain. This week I could feel it coming on. Monday I had a lot of pressure in my jaw and ear. Tuesday the zaps and jolts started in. I’ve babied myself all weekend to try and prevent it. But today, hit me like a tornado. The big one. A horrible flare. Lasted 54 minutes. I’m just coming out of it now. I feel so disappointed. I’ve been in “remission” basically since the first of the year with only a little set back in May. I honest don’t know what to do. I’ve been dealing only with my PCP because all the neurologists say the same thing and don’t help me. The neurosurgeons tell me they don’t see a compression. So I’ve been taking oxcarbazepine three times a day for over a year. Today I took an extra one. I have been to Mayo Clinic twice. The first time they told me I didn’t have TN as they didn’t see any compressions. I went back a week later and a different NS told be I certainly did have TN and he would do an exploratory MVD. But he said I only had 30-40% that it would even help. That was in the fall 2013. Last fall 2014 I went to the Univ of Iowa and they did a procedure similar to the alcohol injection but used lidocaine and it failed after 45 minutes. They said if I wanted to come back they could possibly do a nerve brain stimulator but it probably would not be covered by my insurance. That was something I decided to wait on. Then of course I went back into remission! So here I go again. My family is so wonderful and supportive. I just can’t afford to miss work anymore. We still have medical bills from a year ago. At one point a year ago my pain was so bad and wouldn’t break I went to my local ER and they admitted me for pain control. Still paying that off. I just hate this lifestyle. Now of course, I have no Neurosurgeon, no neurologist and my PCP is retiring. Of course by the time you can get into see anyone the pain usually is lessened. I just want to be able to work. I have to work! I tried applying for disability last year and because TN isn’t recognized as a disease they denied me. Which is ok cuz I went into remission and have been fine to work most days. I do see an upper cervical chiropractor and he seems to have helped keep my head on straight and everything in check. Having TN is so hard on the individual but also their families. I know my parents have been so great, dropping everything to take me on dr visits. Emotionally I have learned a lot about myself. Turns out because of this disease I’m also Major Depressive and Generalized Anxiety Disorder and boarder line personality disorder. So mental health disorders and diseases are very much a part of my TN and it plain sucks! I have seen a psychiatrist and psychologist for the past 18 months and they have been wonderful. Although now my psychologist is retired and I have not established a new psychologist. I feel like the meds I’m in now for my mental health are extremely helpful. I basically keep this blog for my own personal records of pain. I’m hoping if someone out there reads this and has suggestions for me I’m open to hear them. What I would really like is to see Dr Casey in Michigan or Dr Linskey in California. I know Dr Linskey is the master TN NS in the United States. However since I live in Iowa, it’s not easy to travel there. I do not have the funds to make this trip possible. If anyone would like to help me get there, please let me know. I used to have a Fundrazr site which helped so much while I was going back and forth to Mayo Clinic. Thank you to whoever donated and also to whoever is reading this and caring enough about me. Please I covet your prayers of pain relief and peace. God Bless. I know the Lord is with me now I can feel the prayers.