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Everything posted by Ernie

  1. Hi I understand exactly what you are going through. I just finished my degree after 3 years of hard work and I am permanently disabled. I can barely take care of my "body" so ..... What I have learned in school is very precious. I have studied psychology and I understand more dysautonomia now and doctors cannot tell me anymore that it is in my mind. I am sure that my knowledge will still be useful for others and for myself. I just don't know how yet. I wanted to do my Masters but like you I put it on hold because what is the point in investing so much and not being able to work. I will see in a year or so how my health is progressing. In the meantime I am keeping myself very busy going to doctors and rehabilitation. Good luck. Ernie
  2. Hi Sue, I am really happy that you a feeling a bit better. What a terrible experience. It must have been very frightening not knowing what was going on. I was sick like that for 2 years until they diagnosed NCS and POTS and got some medication. Doctors kept telling me I had nothing and I was inventing my symptoms. They accused me of poisoning myself to get medical attention. I got out of if after I was given Proamatine but if I stop my medication I get back to fainting every time I stand up. My health is not better I am just better medically "controlled". But I can do things that I like which is better than during the 2 years where I was bedridden. I am sure doctors will find some medication to help you out. Keep searching for someone competent. I am sorry Dr G did not call you back. It would have been helpful. Take care Ernie
  3. It is a good idea to have someone with you. I see the difference when I go to appointments with a friend and when alone. Ernie
  4. Hi everyone, I have POTS and NCS and have been diagnosed about 2 years ago. I have been living with this disorder all my life but I became totally non functionnal 3 years ago. Three weeks ago my brother died of the "side effects" of high BP - stroke. He had POTS and NCS also and my family decided to give his tissues for research on dysautonomia. This way we hope to help others and ourselves find a cure for these "unknown" disorders. I have just finished my Bachelor of Psychology yesterday and I have my convocation on June 9th. I have plenty of life readjustments to do in the next few weeks, ie what to do now with all my time. I have been in school for the past 15 years so studying was part of my life. I just feel like someone who is retiring and does not know where she is going or what will be my future. I cannot work full time and the most I can do is 2 x 3 hours per week if I am able to get to work. I have not been working for the last 3 years but I still want to have a useful life. Thank you Ernie
  5. Hi, Sorry you have dysautonomia but I am glad that you found us. Your symptoms are very similar to mine. I went to see Dr Grubb and he is a wonderful doctor. Very busy but he was the first to prescribe a medication that worked. I have not gone to see him again because I have to pay out of pocket money and I can't afford it right now. But he is really competent and has good bedside manners. Getting a diagnosis and proper med is a long route for many of us but our quality of life usually improves over time. There are ups and downs and we learn to cope with it. I am learning to make a new life and I trust that you will be able to also. Take care Ernie
  6. Hi Deanna, Yah, I am the Pink Panther relative. Thanks for the welcome. Ernie
  7. Merrill and Nina, Thank you very much for the encouragement. I will keep you posted of my pogress. Ernie
  8. Hi Kat, I can't tell you if you will get your normal life back but I have experience with going to university and fainting. My disorder is genetic and I have had it since early childhood. I have never smoked and taken drugs and I have always taken good care of myself. I have been acutely sick the past 3 years with POTS and NCS for. I went from fainting 10x per day in December 2000 to once a week now. I faint in school at least once a month, which I find very hard on my ego, and my body. My latest episode was a week ago, coming in the classroom, 10 minutes before an exam. My teacher knew of my condition so she reassured the other students. The security guard carried me out of the room and I laid for 2 hours before being able to walk. I was not able to do my exam, which I had studied for 3 days. The teacher gave me an extra assignment to make up for the exam. I am actually working on it tonight. School is very demanding on me because I have brain fog, concentration and memory problems and presyncope all the time. I have to tape all the classes and listen back to them lying on the couch. It must take me x2 than the usual student. All I do is go to school and doctors. Learning is very important for me and I enjoy studying. I never know what the next minute will be. Last year I fainted 1 hour before an exam and the security guards called the ambulance and I ended up in the ER with gastro-enteritis. So often, I have to reschedule my exams because of the severe syncopes. But my teachers are very comprehensive, and as long as I have a doctor's note things run relatively smoothly. I have 3 more weeks of classes, then 3 weeks of exams and I will be graduating with a Bachelor of Psychology. I am very happy I did it because it thought me a lot of things about human psychology and biology. I had the help of many people, teachers, family and friends and support group. Often I have thought of quitting (came extremelly close to it), especially when I was writting exams (or when I was fainting in class) because I could not remember what I had studied and sometimes I could not understand the question. But the invigilators, seeing me crying would uplift my spirit, by telling me: "Just write what comes up." "Your almost there." I cried almost during every exam for the first 2 years. I had to write my exam lying down on desk because that was the only way I could remember anything. I am just so glad that I had all that support. I have my convocation in June and this will be one of the most important day in my life. I just hope I won't cry and faint when I get my degree. My best friend will be allowed to walk with me on the stage and I think that she deserve this recognition. If you have any questions, I will gladly answer you. Ernie
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