Hello. I am 27 and was recently diagnosed with Chiari 1 malformation. I have always experienced really bad headaches all my life. Didn't really think anything of it. My doctors just always said I suffered from migraines and they wanted me to keep those stupid headache journals. I was given pills for migraines years ago, but I didn't really stick with them. So I just learned to take some Tylenol, go to sleep, and keep it moving.
About a year ago when I was still at my parents I noticed I started getting weird head pains. They didn't really feel like my normal migraines. It kind of felt like someone was stabbing me repeatedly on the left side of my head and my ear was throbbing as well. It was unbearable. I could not function. It was like electric shock treatment. But once again all I did was take some narcotic, go to sleep, wake up, and hope that my head wasn't hurting anymore. This type of pain would happen once every two months. Once I moved out of my parents house I noticed that the left side of my head started to bother me a lot more. I always thought I had either a sinus infections or ear infection. The new doctor I started seeing put me on Amoxicillin I don't know how many times!! I think I'm immune to that stuff now. He also claimed I was hurting because I had wax in my ears. So I bought over the counter stuff to help drain the wax. Well got rid of the wax, but what do you know still in pain.
Finally I went to the ENT. I was just so tired of that Amoxicillin. He checked me and couldn't find anything wrong with my ears or sinuses. He thought I might have TMJ. So off to the third doctor I go. I went to the dentist for an evaluation. They stated that I had TMJ because they could tell that I grind my teeth at night. They recommended I wear a night guard. So dished out almost $400 for the night guard. I wore the night guard for a couple of months in hopes that it would help. Well that freaking night guard started to tear. Are you KIDDING ME!! And I was still having neck pain. All the dentist did was order me a new night guard. The new night guard was a joke. I still experience pain in the neck, ear, and head. Oh and I was always TIRED. No matter how much I sleep, I'm always tried.
The past 3 weeks I think I just lost it. I had decided to go to my new primary care doctor with my complaints. Of course what does she give me. My friend Amoxicillin lol. Oh I could have screamed. She told me I had a ear infection. I said okay. I left and took myself to the hospital instead of getting that prescription filled. Got a CT & MRI and found out I had the Chiari 1 Malformation. ER doctor also told me they didn't see any obstructions to the jaw line..so he doubted I had TMJ and that my sinuses looked excellent. I have been in and out of work for the past 3 weeks. This current week I haven't even been in at all because somehow on top of my head and neck pain, I may have picked up a virus, which caused me to have a fever that won't go away.
I know it is a long post, but this was just built up anger and frustration. I am still a little confused about what is going on with my body. I hope to gain support and knowledge from others who have had similar experiences.