Ernie

Hi Emily, Thanks for keeping us posted. I hope that the Day will come by fast. I am sure that the fact that you have POTS makes the waiting worst for you. You will make it. Julia, How can a doctor be so stupid as to believe that you want neck surgery for attention! Maybe they should put themselves through neck surgery just for the fun of it and see how much attention they get. Ernie

Hi, Thanks again everyone for you encouragement. Tearose, you made me see things from another perspective. I really appreciate that. Katherine, When my niece had her TTT she did not know she was pregnant (2 weeks). It was not difficult to diagnose her because POTS and NCS runs in my family and my niece went to my specialist. She has had symptoms all her life so she was easy to diagnose. It was more like, ..... my aunt has POTS and NCS, I have so and so symptoms can you confirm the diagnosis? It's not like for me who has been looking around for a diagnosis for 30 years before getting it. I am the first in my family to be diagnosed so I am opening to doors to the other members. Miriam, Just in case "you are the man" means you think I am a man ..... I am a woman! Don't worry about it. I know it's very confusing in English. In French, Ernie is short of Ernestine. Yes, mine is genetic. It's funny that you talk about informing doctors because this is something that interests me. Do you have any idea how I could go about it? ie Do I have to call the hospital administration or cardiology. I would even be willing to give conferences to doctors and ambulance personnel. I live in a university city and we have many teaching hospitals. I prefer to inform doctors while I am still coherent compared to waiting until I get rushed to the ER. I would like to be proactive. Could you also explain "my gift"? I am sorry if I am asking you so many questions but you got me interested in doing more for dysautonomia and you seem to have know how that could help me. So if you don't mind helping me out! Good luck at Mayo. Thanks Ernie

Hi, I increase my Proamatine, drink and eat during the flight, never stand (use the wheelchair all the way), tell the flight attendent about my disorder. Ernie

Hi, I avoided salt all my life until I got diagnosed. Funny how things changed. Ernie

Hi, Thanks for sharing your letter. That's very generous of you. I am glad that he does not have a death sentence. How horrible it would be. Poor him, I hope that they will be able to control his pain. Ernie

Thanks everyone for sharing my joy and excitement. My niece got a little boy, 7 lbs, 2oz. He has long hair and is very strong. My niece did not need a c-section but she ripped off from one end to the other. She did not feel that pain and was just so proud to finally have her baby. The anesthesiologist respected what I told her about aggravating medication so she changed her plan of action. My niece pushed for 40 minutes and the baby came out in one shot liike a bomb. The obstetrician just had time to catch him because he would have fallen on the floor. My niece started to have symptoms when she was a child but nobody paid attention to it because more than half of my family are fainters and we thought that everyone fainted regularly. So after I came back from NIH last year I told my niece about our having a family disorder. She was already pregnant but wanted to find out. So she got the result 4 days before giving birth. Tearose, I had so much personal satisfaction after the anesthesiologist figured out the medication strategy when I explained to her which medication are aggravating and why and which medication we can handle and why and she believed me! The anesthesiologist later told me that she found our case very interesting. I thanked her for taking the time to do research for my niece and to take good care of her. Ernie

EM, I have to remember that one. Good thinking. Ernie

Hi everyone, I have been resting since Saturday and now I feel up to sharing my experience. I went to give support to my niece who was giving birth on Saturday. She also has POTS and NCS and she just found out last Tuesday. Since she did not know much about the disorder she told her doctor to ask me the questions. So, I ended up talking to the obtetrician and anesthesist about the etiology of our disorder and discussing plan of treatment in case of C-section. The anesthesist did some research and came back in the room with the document. So we discussed again the "case" and agreed on a plan of action. I think I spend about 30 minutes with both doctors. I had to stand up for my niece because they wanted to give her a medication, which made me crash 4 years ago. I did not want my niece to become disabled so I really had to insist on not giving her that medication. I am really glad that I have learned enough during the past 2 years to be able to talk medical treatment with doctors, otherwise my niece would have crashed. I am also glad that the doctors believed my niece and me and did not think that we were psychogenic or just wanted some attention. That's a very different experience for me because as many of you know I went from being diagnosed as Munchaussen, Psychogenic syncope, conversion disorder and finally to POTS and NCS. Now I am starting to be the medical advisor to the doctors for my family. What an ego boost!!!!!!!!!!!! I think there is still hope for all of us. Ernie

Hi Dawn, I hope you had a safe trip and that you are doing OK. Ernie

Hi, At first glance it looks like you had a positive TT but it would useful to have the BP and HR numbers supine and standing when you are symptomatic. I would go to a specialist to interpret the test result properly and to get proper treatment. Ernie

Hi Emily, Congradulation for standing up for yourself. Try to relax as much as possible to keep your energy for the surgery. Good luck Ernie

Hi Mary, Sorry you are feeling so horrible. Do you have any volunteer association in your area who could provide you with support? Ernie

Congradulation Julia. Keep up the good work. Ernie

Thanks for the update Kristen, I am so sorry for Dr Grubb suffering. I hope he takes his time to go back to work. He is such a nice person and I want the best for him. Ernie

Hi, Befofe my doctors were telling me to exercise and I kept telling them that it made me worst. Now I have a new cardiologist and he put the exercise on hold until we can find why I have muscle weakness. Ernie

Hi, It's nice that you can try it at the hospital because I would not dare do it alone at home. It would be a good idea if they could give you ones with less side effect. Ernie

I am glad you found a great doctor who fully understands your situation. Goog luck with the TTT. Ernie

Hi, Wow, what a wonderful news. I have been wondering all week of he was managing. I guess things are going very well. Ernie

Hi, Maybe you could check with your doctor to see if you can stop the cybalta for a few days and see if you still have the same problem. If you do I would try to see a sleep specialist or a neurologist. Ernie

Hi Dawn, Good luck at Mayo. Maybe you could ask the driver to keep an eye on you. Have a safe trip. Ernie

Hi, Congradulation for standing up for yourself and to finally get a diagnosis. What an adventure! I would like to be a little bird and see how the GI doctor reacts when he finds out about the diagnosis. Have a good rest. Ernie

Hi Morgan, I wanted to answer you before but it took me a few days to think it over. Thanks for explaining where you are coming from. I can totally relate to you. I am sorry that you have so much health problems and mostly few or no solutions. I don't want to loose you or have anything bad happen to you but I am powerless to do so. The only thing I can offer you is my support and empathy. I admire you for many of your qualities: courage, maturity, insightfulness, generosity, altruism, perseverance, etc.. I am sure you will one day talk with God. If ever I get to him first I will do the same for you. I will always remember you. Love and hugs Ernie

Hi, I don't know if I have muscle wasting but I have muscle weakness and my specialists believe that it is linked to the hyperadrenergic state. I also hope that doctors will find a solution soon because if it was not for that muscle weakness I would be able to do a lot more. Ernie

I have never been able to tolerate alcohol or coffee. Ernie

Thanks Briarose for this research. I will print it out and bring it to my doctor. It is very extensive and appropriate. Ernie