Diagnosis: Unspecified Migrane
I've suffered from migraines for two years now. Three MRIS, CT scans, Lumbar punctures and medications with over 20 side effects that add up to about four thousand dollars for what? An Unspecified Migraine Diagnosis, says the joint efforts of my primary physician and neurologist.
I can spend up to seven days in the dark, praying it will stop wondering sometimes, what's my quality of life? I told this to my neurologist and he didn't seem as phased you should think. He did tell me with my prolonged sessions he can prescribe prednisone to 'kick it in the ass'. At least there's that. I was put on Topamax in hopes of deadening the nerve endings, and told he was no longer going to be seeing me.
Is that really it? Am I stuck taking medication with side effects for the rest of my life that SOMETIMES help? I've been thrown into a scary world where for the first time Drs. can't help me.
I've met other migraine suffers, who have experienced nerve damage due to some 20+ years of migranes. She too was told, you just get headaches some times, and she dealt with it for over twenty years. Now she just goes blind sometimes. She's considered 100% disabled because she never knows when she's going to get a migraine and go blind. Is this just an extreme case or can I look forward to damage due to my Unspecified Migraines?
I am glad I've found this site. I need you All.
Hi UhLayUh,
Welcome - we're happy you've found us too! Thanks so much for writing in. Let me see what information I can give you that may help.
Migraine is a genetic neurological disorder that cannot be diagnosed at the moment with a blood test, MRI, scan or Xray. It's a diagnosis of exclusion ascertained after our doctor gives us a complete neurological exam, goes over our symptoms and discuss our medical history and our family's medical history. Getting an accurate diagnosis is very important as we can then get the correct treatment and learn all we can about our particular type of migraine and/or headache disorder. When you get a chance take a look at this information; https://migraine.com/blog/migraine-management-essential-diagnosis-and-doctors/.
I would strongly encourage you to seek out the expertise of a true migraine/headache expert who treats one condition - ours - migraine and headache disorders, all day every day. These doctors (migraine/headache disorder specialists) are board certified in headache medicine which is different than being certified in neurology. Neurologists may be fine doctors but have a hard time being experts in one area because they treat so many different conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and others. Let me share this information with you on how these doctors are so specialists and how to find one: https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/looking-for-a-migraine-specialist/.
Hope this helps,
Nancy
