It’s been 2 months since my last blog post and my whole life has been turned upside down. I did finally get the medical insurance i needed. I found a primary doctor right away who reffered me to a neurologist close by. He is a wonderful Dr. Very caring and listens patiently to all my symptoms and complaints. He’s since given me ooooh about 5 different prescriptions ( making the total amount of meds i’ve tried 9) The one i am currently taking is Gabapentin, or Neurontin. I havent noticed a change in the pain at all. In fact its only getting worse. I’d say it increases about every two to three weeks. The “shocks” are becoming well quite SHOCKING. They are to the point to where they just about knock me on my ass! My quality of life is about a 2 now. Since my last post, i moved out of the home i shared with my partner and children to live with my dad, step mom and siblings. That didnt work very well. I was hospitalized on a “5150” hold from May 14-17th because i was suicidal. They told me i was going to be transfered to a med/phsych facility that would help me with the pain and the suicidal thoughts. That didnt happen, they could not find a bed for me and ended up releasing me on just a promise that i’d seek proffesional/medical help if i ever got to that point again. I also took the advice of a few friends and obtained a medical marijuana prescription. I’ve tried several edibles, they DO help with the pain, but leave me with that “high” that makes me sleepy and hungry. I am currently smoking marijuana about 4-5 times a day in small amounts and it helps a little bit. HOWEVER: I, in no way, CONDONE or ENCOURAGE marijuana use by people who are not in immediate medical need of it. Due to stress/pain issues I now live 50 miles from my children, partner and all friends. I’m living with my mother, step dad and brother in Norco, CA. I stay in my room all day and dont go out much or even get dressed or take showers. The pain level has increased which is depressing in and of itself because i thought it couldnt get any worse. It now gets to a point to where i feel “parylized” as the pains shoot through my jaw, my face and jaw actually kinda lock up and i cant open my mouth. When this all started i kept reading about TN patients who had trigger spots, or had intense bouts of pain when someone touched their face even lightly. I’d hoped i would never experience that, but indeed thats what its come to. I learned of it when i went in for a CT scan and the tech went to grab my face/head to postion it correctly. His touch sent excruciating pains through my face. And i’ve also discovered at least 3 trigger points on my face that set off agonizing pains… Oooooh life is just fabulous. What do i have to do to just get scheduled for surgery. I’ve read so many medical cases/studies/journals and they all seem to say the same thing. Patients are prescribed the meds but they are only effective for so long until the side affects are unbearable… So why put TN patients through all of the toxicity and life altering side affects of the meds when most likely a surgery could fix the problem? WHY? Its taken me an unusally long time to write this blog because i’ve had to stop 4 times to wait for my pain to subside… Not too much more to add other than HELP!
Hi Brenda, I am so sorry for what you are going through! The pain is so awful - and I know there isn’t always a simple fix. Our son has been pain free since June 1 except for one day. He had pain only in his ear, no triggers, since January. He lived at a 10+. He is 10 yrs. old. Tegretol did reduce the pain about 20%. We had read “What Time Tuesday?” by James Tomasi, which details that Upper Cervical Chiropractic cured him of 12 years of TN pain. He was ready to take his own life. It sounds like you know what that feels like! We took our son to Dr. Flory, at Atlas Spinal Care in Upland, CA. We know this is what has taken his pain away. THe one day that he had pain return, it came back behind his eyes, at a lower level and then disappeared after one full day. We believe that if we had not been seeing Dr. Flory, that day is when the ear (TN) pain would have started again. It is worth a shot. The cost for a full 8 months of treatment is the same as our portion of the cost of a visit to ER and one night in pediatrics. I so hope that you will find relief soon! Laurin
Brenda, There are days when we read a members' story and our shoulders sag, our eyes tear up and we can't find the words to express our compassion, our empathy our care. Maybe it will help to get out of your room for a while even if it's to sit in a chair in the sun or shade. I don't know where Norco is. (I'll look it up I live in San Francisco) Maybe it's too hot.to be outside. Read through the forums/discussion and facial pain info. There is info there that will help to learn about the surgeries available. Meanwhile, please know whichever spiritual path each one of us walks , we walk it with you.
Hi SF Bill, funny you should suggest that. Because after 9 days of doing nothing but sitting in my room, not showering, hardly eating and just being blah, i got out today. I put on the “happy face” , the one i hate because its so fake and i sucked up the wind, sun and noise of the outside world and i went horseback riding with my mother. I did ok for the first half, but was soon overcome by pain from the wind/sun and could not wait to get back home and into bed. Thank you for your concern, i wish my friends and family understood things as well as TN patients do…