Well, here goes nothing. In December 2012 I was working as a cashier at a grocery store to make some extra money. Who doesn't need it these days, right? Well, while I was working there, I started getting these horrible headaches. Worse than anything I ever had before. It was like somebody was taking an ice pick and shoving in the side of my head on the right side only. It was horrible and dropped me to my knees several times. I still continued to work, but as I did, I began having problems with my left shoulder. I was losing strength with it, and kept dropping things. I couldn't reach above my head, which became a problem at work, because I also stocked shelves. After a couple of weeks, I just couldn't take the pain of either of them anymore. So, I started with the dentist, thinking, ok, just a tooth problem. Well, it turned out I had to have a tooth pulled. It was in the very back, on the top. Think a molar or something. My dentist was normally good with a needle, so we pulled it. He gave me some antibiotics and something for pain. Problem solved, right? Nope. Still had the problems a month later. Not to mention, my shoulder and arm were giving me fits. Well, I went back to the dentist to make sure another tooth wasn't doing it. He X-rayed my mouth and said everything looked fine. But when I told him what was going on with my headaches and the pain, he said it sounded like Trigeminal Neuralgia. He proceeded to explain to me what that was and that I needed to see a Neurologist. Great... I live in a rural area and sometimes good doctors are hard to find, let alone a neurologist.
Well, I did some searching and with our insurance at the time, finally found one about an hour away. Made an appointment with him and was rather scared at the time. I explained everything going on (even about the shoulder) and he said the same thing. Sounds like Trigeminal Neuralgia. He instantly put me on Tegretol. He was concerned about the shoulder and neck areas, so he ordered MRI's of the brain, neck, and back. When my results came back, he dropped another bombshell on me. I may have several things going on. For starters, we found a Chiari malformation, herniated discs at c5-c6, and a torn rotator cuff, amongst other small things like tendonitis, bursitis, and arthritis. I then had to go see an orthopedic doctor for my shoulder because he said we couldn't address the Trigeminal until we ruled everything else out. So, I go to the orthopedic doctor ( which I really liked) and he walks in, shakes my hand, and says "I'm the guy that's going to be operating on your neck". Are you kidding me??? I had bad headaches, how did I end up here? Anyway, he wanted to try the safe approach first. Let's try physical therapy. Well, that lasted a week before another round of severe head pain made it impossible. So, I go back to him and explain what happened, and he said we were going to have to do surgery. Unfortunately at that time, my husband got laid off and was put on unemployment. So, I had to put off my medical treatment temporarily.
Flash forward several months when I had to go back to the neurologist. At this point, we're having to pay out of pocket for everything and all the bills started coming in. I went, because I was still hurting bad. The neurologist said we could manage with the Tegretol as long as we could, until the insurance issue was resolved. But, he told me I had to leave my job because of the neck issues and the Trigeminal. He said I would run the risk of becoming paralyzed if I wasn't careful with the neck and the movements. Well, that terrified me, so I did leave my job.
My husband got called back to work and we got our insurance back, but it took 1 1/2 years. I've had to do any and all home remedies because finances were so bad. Unfortunately, its reared it's ugly head again. Once again, I was back in the dentist's office. The dentist says you've got an infection that is destroying your teeth, so we need to get dentures for the top. So for over 6 months of dental work done and fear of that pain again, my teeth should be all fixed. No more pains, right? Wrong again. So I'm back at a new neurologist this time. He's run blood work, and I just got an MRI of the brain. No tumors, infections, nothing like that. Just the Chiari malformation, which is minimal 4 cm. But yet, in the past year I've had at least 3 bad cases of Vertigo. Never experienced anything like that before...hopefully never again! My eyesight has gone downhill, the pain in my jaw is worse than it was before and my right eye is drooping. The right side of my face sometimes does the same. The constant burning won't go away, the ringing won't go away and I'm getting phantom tooth pain. The teeth got pulled where I'm getting pain, so that don't make sense to me. I'm now getting headaches in the back of my head, which throb all the time. My jaw is affecting me the most. It is constantly swollen anymore, with mini shocks throughout the day. I'm having trouble finding words, which really scares me, and when the pains come, they make me do some really weird things. Such as when I'm talking, it causes me to twitch, or yelp out in pain. Or my favorite--when I'm holding something, it's so intense, I end up dropping whatever I'm holding. My husband says it almost reminds him of Tourette's.
Pulling my hair out at this point because I don't know what is going on. I know the last dentist visit was not pretty. I know he hit something and so did he. I about came off the chair when he did. So, I'm thinking he might have started a flare up. But some of the other problems I'm having are starting to scare me. I have to wait for another two weeks to see the neurologist, and boy do I have a lot to talk to him about. The first one I seen had said on one of the last visits was sending me to St. Louis to do a Gamma Knife. Well, after I did some research, I thought no way was that happening. So I'm curious what this guy is going to do. I think with my ear infection now that I'm going to be referred to an ENT. Does this roller coaster ride with doctors ever end?
I know this is long, but I'm at my wits end. I have a 15 year old son with Down's Syndrome and Autism who needs my full attention and I just can't give 100 percent anymore. I'm hoping you kind people will have plenty of tips & tricks that I can use. Thanks for listening
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