Ernie

Hi Laura, I think that it might be Stemetil. I looked it and it is an anti=nausea and anti-migraine medication. It says that it lowers blood pressure. I had the feeling that it did something to BP because I felt different beside having a clean mind. Ernie

Hi, I went to the ER yesterday and the doctor gave me Stenit or Stenitil. Do any of you have experience with that medication.? It did wonders for me. I am wondering what kind of medication it is and what are the side effects. Thanks Ernie

Hi, I had a similar experience at Vanderbilt and I know of other people who got rejected because they are "too sick" and they were told by Vanderbilt that they skrew the data (that is what I was personally told!). I would be happy to further discuss this experience with you on a personal email. Ernie

Hi, Welcome to the board. I am sorry in a way that you were not accepted at Vanderbilt but in another way I know that you might not miss much. I went there 2 years ago and never got any report or anything new from them. I sent them a 30 page medical report with all my charts and all the previous diagnosis and they did not give me more than what I came in with. They did not even change my meds! So I am sorry that I went because I lost money and 2 weeks of my life for absolutely nothing. It took me more than a month to recuperate from all the testing. I felt that I was treated like a lab rat or even less than that. I don't ever want to go back there. If you can financially afford to go elsewhere that's what I would do. It's very important to get a report from the doctor who tests you because this is the way you will get medical treatment at home. We have been discussing Cleveland Clinic a lot lately so you could look into that. There is also Mayo. Take care Ernie

I am gad you gave us the clarification because I was sure that there were studying another disoder like PD instead of POSTS. I can only imagine how diificult a choice it is to make when having so many patients and so few ressources. We will have to clone Dr Golstein and his team also! Ernie

I just heard that he had a few patients last week and that he still looks sick. I also have an appointment with him coming soon but I have not heard from them yet. Ernie

I have this symptom and the doctors don't know what causes it. I was tested a few years back for epilepsy and the test was negative. Personally I think it is an adrenaline rush-attack. Ernie

Thanks for the explanation. I am sorry that both of you cannot go there for the time being. Makes me wonder what they are studying right now. I have not heard of anyone going there for the past year. Ernie

Could someone explain "the difficulty evaluatngpatients under this protocol"? Thanks Ernie

Hi Morgan, I read somewhere this week that the new tendency for doctors is to write normal when we are abnormal because then they don't have to order more tests. I had an abnormal EMG a few months ago and I heard the neurologist tell the resident that even if had an abnormal test he was writting normal because it was not enough abnormal. Makes me wonder how reliable are the diagnosis. Also, the more I learn about doctors and their habits the more I realise that we have to be able to interpret the result and see if there is a problem with our body. This freaks me out! Ernie

Hi Dawn, I am sorry that Dr Low does not want to get involved in the pension process. I can understand your disappointment. I would be too! Do you have another specialist who could back you up? I wonder by his comment about the tachycardia on standing and the fatigue if he is even AWARE of how disabled we are with this disorder! The tachycardia and the fatigue are only part of the problem but dysautonomia is multifaceted. Also, how can he state that your hyperadrenergic state is related to anxiety and what does he really mean? Makes me wonder about his reputation. We just don't get an anxiety attack by standing up, do we? Unless we are Martians and are afraid to walk on planet Earth. I just can't wait for research to be more advanced so that we will have decent medical care and get the pension that we deserve. Hope you get your pension soon! Ernie

Thanks Runnergirl, I can't remember if you are repeating yourself but I appreciate that you answered me. I don't know if pheo was ruled out because if ever I did this test it was at Vanderbilt and they never gave me any result of some sort on anything. So, to be on the safe side I will do the test. I thought that if they measured the catecholamines in the blood it would give the same answer as in the urine. Wow, it's very complicated to get tested. Ernie

Hi, My doctor ordered a 24-hour urine catecholamine and metanephrine test. What is this test used for? What can they learn more than with the blood catecholamine test? I already know that I have too much blood adrenaline and for this test I have to stop my meds for 3 days. I don't know if it's worth my getting sick. Any advice? Ernie

Hi Danelle, I am so sorry for your son's diagnosis. I don't really know what to tell you to make you feel better. One thing I focus for my family is that I tell myself that the next generation will have better care than us because doctors are researching. Try not to feel guilty about it. You cannot control genes. Hugs Ernie

Hi Mary, this is wonderful news. I am so happy for you that I am jumping in my living room. Have a nice day. Ernie

Hi Katherine, Would you mind emailing me the whole document? Thanks Ernie

I just realised while I was reading this article that I was part of this research! Kind of weird. Ernie

Thanks Katherine and Tearose for posting this article. I will print it and bring it to my doctors. Ernie

I am glad Julia that you found a good attorney to represent you. I will be praying for you. Ernie

My worst job was being a lifeguard standing in the sun beside the swimming pool. The most difficult would be an National Guard standing motionless for hours in the sun in Ottawa (100F) dressed with the bear fur hat and wool outfit. The most dangerous would be a airplain pilot. How about being caugh in a bank robbery and having to stand motionless with your hands above your head!!!!! The most perilous: being kidnapped and attached to a post so that you don't run away! Or skydiver: you pass out as you jump off the plane and don't wake up to open your parachute! Like living dangerously! Ernie

Hi Morgan, I am sorry you got rejected from NIH. Don't give up hope with them. They will have other protocols later on and you can apply again. I am glad that they at least told you why you did not qualify. Ernie

BuddyLeesWife, I am sorry that your husband and his brother were rejected from the study. I was by Dr Robertson that he is looking for families with dysautonomia. I wonder why he is rejecting so many cases lately? I only know of 2 cases involving twins. Ernie

Hi Danelle, I went to Vandderbilt 1,5 years ago and I am still waiting for my report. I was EXTREMELY disappointed with the treatment I got there. I asked them for my report very often and they don't even return phone calls or emails. I heard of other people having the same problem with them also. Before I went there I sent them my 30 page medical file and I came back with nothing different not even one medication different or tweeted. A complete loss of money and time on my part. I won't go back for sure. Ernie

Hi Dawn, Welcome to this forum. I was functioning pretty well with alternative treatment until I completely crashed 4 years ago. Now I need regular medication. I am sorry you had to give up your job and career. I can understand your loss. I tried Mestinon for a few days and I had terrible diarrhea, GI cramps and more syncopes. I am not sure it helps hyperadrenergic POTS. Have you tried salt pills? I used to drink salted water but salt pills are much more efficient for me. Do you wear compression hose? Take care Ernie

Oh Julia, I am so sorry for that "&*()/" decision. I just don't know how these doctors can sleep at night. Continue the fight and we will be there for you. Ernie