- CASE FILE
For 6 years I have been dealing with occipital neuralgia, neck pain and now nausea when looking down. Possible Ehlers-Danlos too.
ABOUT THIS CASE FILE
I landed a very successful career in film/TV and about 3 years later began having neck pain and then intense scalp and hair pain. I was diagnosed with occipital neuralgia and I cannot wear pontytails or hats or even look down for long periods of time without triggering intense nerve pain. I received so many nerve-blocks and steroid injections that I am now living with Adrenal Insufficiency and have to be on hormone replacement to stay alive. More recently I experience nausea when looking down or sustaining positions for too long (I.E sitting behind a computer or studying) I now fear at 26 I will have to drop out of college and go on disability. I was once living my dream and am now living a nightmare. I may have Ehlers-Danlos and have a genetic consult coming up. A problem that can occur with Ehlers-Danlos is Craniocervical Instability where a C0-C2 fusion is required, but there are few doctors who understand the condition and perform the surgery. It is MAJOR neurosurgery, but I can no longer get nerveblocks to ease my symptoms and long for a longer-term cure or treatment option. Many specialists are not looking at big picture stuff. They may say I have migraines, but ignore that the nausea comes from head position or only focus on the neck. I want the entire case looked at because all of the symptoms feel like one in the same. I hate waking up at night to wash my hair because my hair moving on the pillow hurts. I can't do schoolwork without major effort and fear.