Not always alone

So since Aug 18, 2013 I've been suffering probably the worst I've ever suffered with TN. Mon, Aug 19th was my first ever ER visit because I couldn't handle the pain. Pretty much gave me a shot of Morphine, Tordol & Ativan, and sent me on my way home. Said follow up with my PCP. Well, at this stage in my TN journey, I've seen a Neurologist, tried all the meds, saw 2 different neurosurgeons to see what my options are, tried chiropractic, accupuncture, laser therapy, and lots and lots of prayer. Each time, seems like my TN goes into remission, for sometimes, months at a time, with only occasional twinges or jolts, reminding me "I'm still here, and in control, beware." Anyway, this time I just didn't know what to do. I did some morphine & xanax from my PCP, who might I add, is wonderful, just not knowledgeable enough to actually be able to fix me. Again, since I go into remission most times, I just wait it out. Eventually it will go away, and then I'll go on living life again and wait for the next bout. This time this is the longest it has lasted, and not gotten much better. I mean, its probably like 50% better, but not like WAY better. Most of the time it will suck for a week and go away for months. Anyway, I've never missed this much work or slept this much during a bout of TN. Its probably the meds, but seriously, ridiculous how much I could sleep. I heard about a dr by his mom, who lives in my town. Dr. Casey Weerheim. He is an Upper Cervical Healthcare doctor and he see's people with stuff like TN. So I thought we'd give him a try. Made an appt, and now I've seen him 4 times, I think. Feeling confident! Again, my pain is about 50% better than 2 weeks ago at this time, but to me that is great. When I went to the ER that night, my pain was a 9-10/10 pretty much continually. Now I'm down to a 5-6/10 about 50% of the time. Although I still cannot eat, or talk as those are my biggest triggers right now. That and brushing my teeth/washing my face. So, I'm going to continue with Dr. Casey, and see how it goes over the next few weeks. I've been too afraid to do any sort of invasive procedure because I've heard too many horror stories about them. One of the neurosurgeons I saw was like, "Let's do the MVD!" I was like, Dude, I only have this like 3 months out of the year, and you want to cut into my brain? No thanks. The other neurosurgeon wanted to do a glycerol injection, because he thought it would give me the most instant relief. I declined that as well. I did the laser therapy for several weeks and that seemed to help, however, that doctor moved, and I really didn't want to go down that road again. At one point I was tempted to purchase my own laser machine, (they are like $5000+ for a cheap one). The ones at the chiro office are 5 times that much. Anyway, this upper cervical thing is helping me so for. Dr Casey did 6 xrays of my head/neck. He did scans of my neck, to see where all the pressure is being placed. He doesn't just wrench on my neck one way then another like most chiropractors do. In fact, he barely touches me. It is working tho. I just don't want to do all the mediications. I've been down that road, and they all made me feel foggy, listless, forgetful, sleepy & honestly, made me gain about 75 lbs. It pretty much sucks. The ONLY things I consistantly take that I believe help my TN is a super B Complex, and Jarrows Methyl B12 5000mcg daily. I also take my multivit, prozac, zyrtec, and a few other otc things, but nothing like gabapentin, oxcarbazepine, topamax, etc, I've tried all that....didn't work. Maybe I didn't give it a chance to work, but seriously, I want a life too, I don't want to be in a daze, and not able to take care of my kids, home, and work. I'm writing this for me, to help me journal what dates I have what issues, and when I do what. In case the day comes where I pack up and go to Mayo Clinic and try to be seen. (Which I actually did once, and that didn't work at all). So, if you are reading this, that's great, I appreciate you taking the time. But know this is for me & my records. Love all my TN friends, praying for you all, one hour at a time. The Lord Holds all our tears in His hands. Remember to go to God in every moment, even in the ones that hurt the worst. Blessings.

Wow Robbie, It is a journey with TN isnt it. I hate to make a joke about it but sometimes you have to. I live everyday of my life in the worst horrible pain:( It is brave of you to put your journal on here and I am new to this too and I find it freeing to let it out too. Lots of support from lots of people who experience it just like we do. Stay strong. It sounds like you have a very good head on your shoulders and I wish you good luck on your journey.

Take Care,


All the best to you, hang in there.