Diagnosis

I have been trying really hard to put the past year and all the health drama behind me but it just keeps nipping at my heels. I am coming up on a year of when the chronic migraines started and I guess I feel the need to process the hell I went through so I can see it for what it is and not be afraid the other shoe is going to drop at any moment. My blog is therapeutic for me in that way, a dumping ground of my thoughts, so here goes, don't judge my purging, join in, it's grand. 

January 21st I got a migraine unlike any I had ever had before. Jeremy was at work of course. And my parents happened to be at our house for the day. The migraine started with an aura like it usually does. An aura is a change in my vision that looks like an arc or blurriness. The pain usually starts about 30 mins after the migraine. But this time within 5 minutes I was slammed with the most intense pain behind my right eye. It brought me to my knees and I immediately went to the bathroom and started retching.  My parents were afraid to leave me so they stayed. I tried a full dose of excedrine migraine which I have never taken that much usually just a half. But the medicine didn't even touch the pain. My dad went and got and got me my new migraine prescription immitrex at the pharmacy. I took it when the pharmacist said and being the drug sensitive fool that I am, I had an immediate reaction to it.  At this point I had tunnel vision, lost all side  vision, vertigo, dizziness, falling to one side, black spots when I stood, numbness in my hands and feet, and extreme nausea, and extreme anxiety brought on by the drug. So I called my doc and went in. They immediately sent me to the emergency room where they did a migraine cocktail and an MRI of my brain.  I had a reaction to the cocktail of drugs so they gave me some other drug that knocked me out. But the migraine never broke...it was another 23 days of the same symptoms before I started to feel some lessening of symptoms. 

So now nearly a year later I have found some possible answers and gotten an entire education in chronic migraines and such.  I have seen over 35 specialists, had too many tests to count, had hundreds of vials of blood drawn, too many scans to count and I largely have remained a mystery to the medical community. 

Until right before Christmas I had an appointment with a doctor I had been waiting 6 months to see. Dr Jill Schofield. I finally found someone who knew what was going on and WHY it was happening. 

Most doctors I have seen have had limited knowledge of what it is and have treated me with many drugs that have not worked. Since the heart procedure in June I have been on a combination of 5 medications. She could explain why those 5 drugs were holding some symptoms at bay but not treating the underlying cause.  She also could explain why I was having break through symptoms and so on. 

She diagnosed me with: 

Postural orthostatic tachycardia syndrome -- chronic 

Antiphospolipid protein syndrome --an autoimmune disease that's life long

Joint hyper-mobility syndrome -- chronic 

And she gave me hope that with the right treatment plan, a very specific diet, and a very rigid exercise plan I can get to a place where I can function and have more good days than bad. 

Ps it sounds lovely but it's been super hard and changing anything. Even just a little change in my diet or meds can aggravate symptoms and it's back to the dark ages of feeling like a

Zombie.