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Hi my name is melissa I am a 35 yr old woman who has been diagnosed with autonomic dysfunction and vegus nerve disorder about a year and a half ago. When it first happened I was home during the evening my husband asked me to go into the kitchen as I walked in there my body had this weird feeling my eyes started to get all fuzzy hard to see and it felt like I was going to pass out I immediately went back to my couch opened my window my hard was racing my hands and feet felt numb I put my head out the window cause it felt like I was suffocating but the cool breeze did not help at all I was rushed to the hospital but by time I got there everything was back to normal so I was sent home then two days later I was home alone I called my parents and asked them to bring me back to the hospital cause I just didn’t feel well at all so when I get there they take my vitals and bring me straight back and ask me how I was feeling I told the nurse that my body gets like this weird feeling then it goes away and comes back my left shoulder hurt I had a bad headache and also my neck hurt they then told me that they were going to hook me up to a twelve lead because my heart rate would drop and go back up that is the weird body feeling I was feeling and they also told me my blood pressure was low so I sat there all evening before I was admitted so instead of being wheeled to my room I opted to walk but by time I got to my room I was about ready to faint they ran blood test after blood test and did not find anything a wrong with me so I was about ready to be sent home when a nurse was taking my blood pressure told me to stand a when I did my blood pressure dropped and my heart rate shot up so they decided to keep me one more night however that same night while laying in bed not doing nothing my heart shot up to 130 just lying in bed so I was sent out to another hospital where a cardiologist could evaluate me but the only test he did was a echo and told me that I had what I mentioned above I asked to go home so they released me but I had to wear a king of heart monitor but the doctor couldn’t find nothing a wrong with my heart. I seen the cardio doctor regularly for awhile but then after a few months I was on my own he didn’t give me no meds he just told me to wear compression socks and drink lots of water and take vitamin D with calcium. I was seeing one doctor but she left so I am with a different doctor who doesn’t seem to know anything about what I have he basically told me since you can handle it then I don’t need to see you but maybe once a year. My symptoms I have are low blood pressure, high blood pressure when standing, brain fog,head pressure, constipation, ankle swelling, sometimes my legs look purple, I really can not function with out my compression socks on, heat intolerance, feeling like I am going to faint in heat, high heart rate when up right,bradycardia, extreme thirst,tingling in hands,feet mouth and tounge, chest pain pressure,also I can’t lift anything heavy, body weakness, fatigue, the doctor told me to stop smoking but never gave me a complete explanation why,constant body pain I take Tylenol but it makes me sleep then I have like this pain where my heart is if I do to much in one day but the doctor told me it was nothing to worry about, weight gain, my body trembles if I do to much in the heat or just over do it in one day, just being a little over active sets me back like two days I have to rest my body for days before I feel well,as well as nausea,with out having no guidance with my illness I manage the best I can and try to read a lot on the internet about what I feel because people tell me I don’t look sick but I tell them its invisible only I van feel it you would have to have it to know what I go through on a daily basis just wish I could get some help or find a doctor who can help me
Hi Melissa.
Do you live near Dr. Driscoll? She could probably get to the bottom of some of your problems. If not, is there an autonomic specialist in your area? A cardiologist doesn’t always know a lot about dysautonomia.Start with viewing the videos that are on this website. There is also a brochure on potscare.com that you can download for free that gives you good information to start with. Last but not least, Dr. Driscoll has written a book “The Driscoll Theory” that has an enormous amount of information on how to help yourself. I highly suggest you purchase it if you can. You need to get to the root cause of your autonomic dysfunction. There is hope. I wish you the best.
Terri
Thank you, Terri, for your kind help for Melissa! We know that coming to POTS Care is not an option for everyone, and we hope those other helpers are significant for you! If you can’t afford the book, please let me know, and I will send you a free copy. Gentle hugs…
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