- CASE FILE
30 year old female suffering from severe, constant headaches and intermittent abdominal pain/bloating for years. I'm at my wits end.
ABOUT THIS CASE FILE
I've been diagnosed with Ehlers Danlos Syndrome hypermobility type and fibromyalgia. I started getting chronic daily headaches after a horse riding accident where I hit my head and threw out my back. I was initially diagnosed with post concussive syndrome by neurologist number 1. I've was tried on several medicines including amitryptaline and others for the pain, but nothing helped. At around 20 I saw neurologist number 2 for the headaches and intermittent numbness in by legs and arms. He did an MRI, but it showed nothing and he didn't know what to do with me. Both of these were before my EDS diagnosis. In my mid 20s I saw neurologist number 3 after my EDS diagnosis and hearing about craniocervical instability. She completely blew me and my concerns off and insisted on migraines. I've tried every migraine medicine on the market short of botox with no help. My headaches also don't present as migraines. She also did MRIs which she said was normal. She sent me into Boston, where I saw neurologist number 4. He said migraines or my birth control pills were to blame even though I told him that I still had the headaches when I was off the pill for over a month. He also did bloodwork (not sure what for), but it came back normal.
I feel like my head is too heavy for my neck, it's hard to hold up. I have pain at the base of my skull where my skull and neck meet, I get dizzy, my neck hurts, my facial sinuses hurt, intermittent ringing in my ears, intermittent trouble swallowing - I'll even choke on my own saliva, and my balance is terrible. My headaches are made worse by crying, coughing, and straining and it's worse the longer I'm upright. The only thing I've found that helps is traction, which I tried at PT, but my insurance won't cover the machine and I've also heard it's contraindicated in people with EDS. I've tried trigger point injections in my head, but they didn't help at all. I've tried physical therapy for my head and neck and got no help. I also suffer from intermittent abdominal pain, bloating, and chronic constipation. I've had the constipation all of my life and it's probably related to my EDS, but the bloating and pain are newer and seemingly unrelated. I've never had pain from the constipation before so I don't think that's the issue. I have a history of gastritis and I also have severe acid reflux. I had an endoscopy last summer that was negative for celiac, h. pylori, ulcers, and everything else besides a small hiatal hernia. I've tried a low FODMAP diet, but that made my pain and bloating worse. I had an ultrasound on my abdomen including my gallbladder, pancreas, and liver and I believe my stomach as well. All were normal. I'm tired of going to doctors and getting no answers or being blown off. What else should I be looking at and how do I get my doctor's to listen to me?