Please, would someone answer my post? I've tried several sites and no one ever does? Is autonomic nervous condition too rare a disease? Does anyone have it on this website?
I have several questions. One is about steroid use. The neurologist prescribed some for me but I'm having so many side effects, I tapered myself off. I don't see where that gives any improvement? Has this happened to you? If you are suffering from this condition and you are taking a steroid, can you explain to me what it is for and how you are coping on it?
I was recently dxed with this after several years of having all of these crazy symptoms: Supra tachycardia, blood pressure very high dropping very low, nerves in my intestines dying or not working and I am having constant diarrhea, bloating, etc. I have had fainting spells and several mini strokes. Now I take medicine to make my blood pressure rise, another to lower it and calm my heart rate, three different ones to control my irritable bowel, neurontin and Norco for pain, and so on. I am 64 and my husband is the pastor of a small but busy church. I love doing what we are at this stage of our lives but I find myself so often unable to keep up.
Do people die of this disease? Any advice, suggestions, stories of your experience would be so welcome. I feel like I'm the only person in this world with this strange disease? If I could just have someone or several someones to share with me...it would help me so much. I had the tilt table test several months ago; now I am scheduled to have another one on the twelfth of Dec. This time the neuro is going to be in the room...last time the cardiologist was there and nobody understood my reaction, it looked to be a seizure? He did write me off to the neurologist and said I had passed out. Thankfully, my neurologist did his training at Mayo Clinic and he and his partner do specialize in these issues besides other things. I really like him, and he tries to tell me but he's pulled out of the room, etc. his office is so busy.
He suggested I get on a support group :( So far, not good. I can't find anyone who will respond. I promise I won't overwhelm anyone with mail, etc. I just need some support...and I in return will support and pray for you. Thanks so much!!