Alisa

Dear Friends, I have autonomic dysfunction with a list of symptoms including seizures for 12 years. I am now 39 years old. Most of my treatment has been what appears to be the normal treatment for POTS. It is soooo reassuring to hear all of you discuss similar symptoms, to know that you are not alone, and most of all, to help me know that I am not CRAZY. I have caring doctors who want to help but just don't feel like they are educated in this particular area. I may be going to Vanderbilt now, not for a study, but just for evaluation. I have upcoming appointment with my doctors. They feel like they understands the "process" of this order, but don't feel the seizures are related. They want Vanderbilt to shed some light in the subject. Vanderbilt states all they plan to do is ortho static BP's and a tilt table( which I have already had one that reproduced a seizure on the table) I'm not sure it would be worth the trip. I am asking for your help. I have read several letters from you that say you also have hypoxic type seizures. I'm not asking for YOUR name, but if several of us had our doctor's contact each other with this info, then maybe we could earn some credibility in numbers. If any one would like to help, please let me know and perhaps we can contact through regular email or phone. I am desperate for help. My last "episode" had the doctors telling me I can't drive or work as a nursery/labor nurse. I have 3 teen age kids, love what I do as a nurse, and we are not surviving on my husbands salary as a police officer. I am trying to find work that I can do from home, hopefully related to nursing. Not being able to drive limits my choices for a job! Please help if you can and seek strength in your faith. He has a plan for all of us! Some days it is just much harder to figure out than others. Alisa

Thanks for responding. I guess Im looking for a workup. I have had alot of different diagnosis and alot of "bandaids" but have not been able to stick to one doctor. They all want to send me to another "Specialist". I just need clarification of what I have and how to treat it. It sounds like you are all very supportive of each other and I am glad to have found you. I don't have any answers to give my family, friends, or myself. Vanderbilt got my hopes up and we made plane reservations, hotel reservations, and car rental reservations so I can have a two day clinic visit. I went into the hospital on Monday this week and am still here. Vanderbilt called to see how I was doing and I advised them I was in the hospital for treatment (IV therapy). Once they new I was here, they backed away from my appointment and advised me that I was too much of a risk at this time. I am upset, disappointed, and discouraged. It seems that when I am at my lowest (medically) I would be a prime patient. They want me off my meds for five days but expect me to stay in my home town under my doctors care and wont allow me to be in their presence while weening off my medications. I don't know where to go from here. Now I have spent a thousand dollors to get there and have no appointment. Help.

I have been searching for information for years regarding POTS and found your site today. I was accepted by Vanderbilt five years ago, but unfortunately I did not go at the time because of financial reasons. I recently applied again, but am told I do not fit the "criteria". My symptoms are the same type of symptoms, just worse now. I don't get a clear answer from them. I have had symptoms for 12 years including- syncope seizures, increase pulse rate, fatigue, bladder and bowel issues, numbness in my hands and feets,headaches,etc. Other than Vanderbilt, has anyone found specialist to deal with autonomic dysfunction?