Finally got a diagnosis

After years of looking for what was wrong with me I found the right doctor. My hospital visit for what I thought were stomach issues were indeed dysautonomia. I’m so thankful to the ER doctor working that day had worked along side this doctor and knew exactly where to refer me. An autonomic specialist who would be hard to get into see, the wait was worth it. A doctor who is board certified in Autonomic disorders. A member of the American Autonomic Society. 1 in fewer than 50 doctors certified to diagnose and treat autonomic disorders.

I have Orthostatic Intolerance manifested by Orthostatic Hypertension. We are also working on heds and mcas as I have textbook symptoms of each. I’m currently on Klonopin .5 mg twice a day to help regulate my nervous system and treat adrenal dumps. I’ve started a supplement Liposomal Luteolin for the mcas. I am to start Desmopressin to help retain fluid within my blood vessels.

Next up will be blood testing my electrolytes and see if the new medication is in fact, helping me retain fluid in my blood vessels. Then I have follow up on a month and will talk about more treatment options and likely referrals for heds and mcas. I never worked with a medical team that functions quickly and are all ready to dig into my issues. They are all very kind and supportive.

I’m extremely emotional. My first pass out was when I was 18 and I as told it was anxiety. All these years (I’m 43 this year) I could managed many symptoms and had a better quality of life. I’m grateful I am in the best of hands now and have a plan in place. 🥂 to good news.