Have you been to a teaching hospital? I don't know the names of any specific doctors in NC specializing in Dysautonomia, but teaching hospitals are usually helpful for diagnosis and treatment. What kinds of symptoms are you dealing with? Which treatments have you tried so far? I hope you will soon find a doctor that is able to help you manage your Dysautonomia.
I have been to the Dysautonomic Center in the early 80's in Birmingham, Alabama. This was before they knew very much about the disease. I'm on a waiting list to go to UNC to see a Dr. Caroline Klein. The list is two years long! That *****.
I know I have dysautonomia and have dealt with it since my twenties. Recently I got a killer virus that attacked my autonomic nervous system. I could NOT work for 2 months. I'm coming around now. They thought I had a stroke but I really don't have any confidence in the doctors here because they haven't a CLUE what this disorder is.
I take a Beta-Blocker for the tachycardia. It works pretty well. I take Klonopin for the autonomic seizures and passing out. I take Zoloft to keep from jumping off tall buildings. I, also, found bio-identical hormones to be very effective for menopause. I have every single symptom of the disorder. I deal with them one at a time. I am a personal trainer so my diet is impecable. I exercise like a robot. Exercises like swimming and ballet. All good for balance. I stopped sugar and caffeine years ago. I never smoked or drank to begin with.
Here's the good news. The severe symptoms you have now will abate with age. You, however, will get a whole new round of irritating but NOT debilitating symptoms. I'm getting bettter. But I couldn't work for two months. You can live with this. And the medications I take are a lifesaver. I, also, get acupuncture to help the nerves stablize during peak times of flare ups. I hope this helped.
Well, it's not close to you, but the Syncope Clinic at Cleveland Clinic is fabulous and the wait isn't two years. Might be worth the trip. Their info is in the Health pages at the upper right of this forum. Have you done any reading on peripheral/small fiber neuropathy? There are a lot of things that can destroy these autonomic nerves, and it's possible you have a treatable underlying cause like autoimmune in addition to the virus you just had.
Well, for now I'm just gonna have to grin and bare the flare up because we just lost our health insurance! Today was a pretty good day. Back to the pool with balance exercises. The water has saved my life. Despite the doctors here trying to kill me!
I love this site. I am so grateful to have found it and the posters here! You've all been incredibly helpful with your sharing information! Thanks to you all.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.