Ernie

That's good news that they finally found what you have. Good luck with the medication. Ernie

Hi Nina, I am happy I did this TTT because I feel that they are on to something. When they injected one of the products I was paralysed within 30 seconds. It reproduced the exact symptoms that I have when I faint. So when I go back I will ask my specialist if he could find the link between my symptoms and the reaction I had to that product. Also, I will ask him for a medication to help me out. I have heard from a woman over there that when they get interested in your case they really try hard to help you out. So it seems that I have finally found a Canadian doctor who will push the testing further than the basic TTT. I have 2 weeks to wait to go back for the results and let me tell you that I am restless. Thanks for the suggestions at Niagara Falls. Mary and Corina I feel better today than during the week-end but I think it will take me a few more days before I get back to baseline. Mary The doctor did not want to give me the result right away because I am a challenging case and he did not have enough experience. My specialist was suppose to be there but he had to leave the country suddenly. I only found out after I had finished the tests. If I would have known I would have rescheduled the TTT. On the other hand, I have time to think about the whole test and come up with "intelligent" questions. To everyone Please pray for me so that doctors find medication to help me with muscle weakness, paralysis and fainting. Ernie

Hi Mary, I'll tell the short story. It was on Friday the 13th and I was the nurse's first syncope case of her career. So she wanted to get my height and weight and I passed out on the scale after 45 seconds. Then they wanted to cancel the TTT because of the fainting and I said no. So I fainted after 7 minutes on the TTT. Then they injected different medication to test my autonomic system and passed out again getting up from the TTT. So they tried to put me on the gurney and I passed out 2x again. They decided to keep me under observation for the day. They took good care of me and sent me home when I was able to eat and stand for 1 minute. They gave me a 1L of saline. The nurse told me that I am the only patient who had such good care and also the only one who was sent for observation after a TTT. The 2 doctors and the nurse even wheeled me to my car! The doctor told me that I am a very challenging case. Really!!!!!!!!!!!!! I have to go back in 3 weeks to get the results. Another 20 hours of driving. This time we will spend a day in Niagara Falls to visit. Ernie

Hi, I would travel in the reclining position and I would leave a day earlier and once I got there I would rest the whole day. Then I would insist to take the car up to the front door of the wedding place. It might cost more money but at least you will have energy left. Ernie

Hi Susan, I have about the same limitations as you. I have 2 strategies. a) I live on a day to day basis with the limits I have and; I hope deep inside that one day researchers will find a "cure" for us. I am still in the "shopping" stage of finding a Canadian specialist. I try to accept the little I can do and I am slowly reorganising my life to find pleasure in the little things. It is sometime difficult because I was superactive all my life before the turnaround. Hope this encourages you. Ernie

Hi MCH, I forgot to answer your question: Why another TTT? I was diagnosed in the States and Canadian specialists are still skeptical because I am a rare bird. So I want a "second" opinion by a Canadian specialist. I will ask them how many minutes I have to "perform" without the isuprel and if I think that it is too short I will refuse the medication. Jersey Girl: Why do they say it is contraindicated? Well I just started my periods this morning so I think that the TTT will go fast! Wish me luck! I am leaving tomorrow morning. Ernie

Until you get a real TTT you could always ask your PCP to give you a poor man's tilt. Ernie

Thank you everyone for your support. It means so much to me. I called my niece, my sister's daughter. My niece is a nurse. She was not surprised at all that her mother did nothing because never help others. So I have decided not to invite her again because she is a burden. I learned a lot from myself last week. Futurehope: Your right, it is not just that we are tired but that our body cannot function. I think that this is what I will say from now on. I talked with my nieces and they agree to send the kids alone next year. So the kids will come when my husband is on vacation and this way we will be able to visit around the city. Ernie

Thank you Corina and Mary for your suggestions, I will ask to get an IV saline after the test and if I am too out of it I will spend the night there. I need to have enough courage to refuse the isuprel. It is still difficult for me to say no to doctors. Ernie

I usually don't talk about my family issues but this time I will make an exception. I invited my sister and her 2 grandsons for a week at my place. I went to pick them up at their home wich is 5 hours round trip from my house. The arrangement was that my sister would help me prepare meals because I can't even prepare it for my husband and I. She had agreed. She never helped me throughout the week. It took me 3 hours to prepare meals and we ate at about 7:00 p.m. every night. I have a walker to sit down when I wash the dishes and she was sitting on it playing with the puzzle while I was standing in the kitchen. At one point I asked her if I could get my walker and she gave it to me. But what really did it is when the kids asked to go to the park (they are both 11 years old). I played with them a bit but I was very careful not to trigger anything. The temperature was about 70F and I had eaten properly and had taken all my meds. So, after about 90 minutes of being in the playing ground a got up to get back to the car and fainted right there. My nephews thought I was joking. My sister was there but she did not help since the kids were saying that I was joking. So one of my nephew was trying to lift me up while I was barely conscious. After about 5 minutes I was able to talk and I told my nephew to go to my car and get the wheelchair. Then my sister realised that I was not joking. The only person who helped me was my 11 years old nephew. My sister did not even take charge of the situation. I felt stuck with 3 kids. Luckily I was only 4 blocks away from home. I would be less disappointed with my sister if she was a "normal" person but she has NCS and POTS also and she is a fainter. I don't understand how an adult can see her own sister whom she knows faints all the time and believe that I am joking. I had sand everywhere, in my clothes, hair and ears. I told my nephew later on that night that it is rare that adults pretend to faint. But my own sister - is she stupid or what! She could have least come and asked me if I was fealing OK. Otherwise I am happy of my week. The kids reminded me of when I was 10 years old. I will invite them again next year but I will not invite my sister. I need an adult who will be able to take charge of the situation when a crisis happens. Ernie

I have a TTT this coming Friday and I am a bit nervous about it. I have 20 hours of round trip to get to the hospital. The other time I was hospitalised when I had my TTT and just being rolled on the gurney to my room made me feel terribly sick. After the TTT I fainted 5 times going to the washroom because I was so weak. I am worried because this time I have to come back to Montreal right after the TTT. I won't be driving (I know you had guessed) but just being a passenger will be hard to deal with. The last time I went to see this cardiologist I fainted 3 times on my way back and I had just stood 2 minutes with medication (poor man's TTT). I don't know how I will manage. Do you have any advice to help me deal with the trip? and the TTT? P.S.: They want to inject me with isoproterenol after some minutes if I don't faint fast enough. I am also scared of getting worse with this product. How can I avoid being injected anything? Thanks for your help Ernie

I have a medica alert bracelet and it says: fainter - keep flat, hyperadrenergic. I can't say that it helps all the time because more than half the time the pramedic don't even look at it. But I know that on a few occasions it has saved me a few useless trips to the ER. It gives me more credibility. Ernie

Hi Kim, Sorry you have this disorder and welcome to our little world. The etiology and treatment of dysautonomia is still in its infancy. Mine is genetic. We have been fainting in my family for at least 100 years so we have about 6 generations. Others have sudden onset because of a virus of some sort. There are only 2 genetic type that have been officialy discovered and mine is not one of them. I hope that one day researchers will find what is wrong with my DNA. We are medicated on a trial and error basis. Each one of us is different and we have to experiment. Maybe you could suggest your doctor to prescribe you a tilt table test. This way you could run the chance of getting the proper diagnosis. Ernie

Hi Morgan, I though about you some more tonight. I don't know if you have private insurance but if you do I would try to get in Vanderbilt that way. They are less restricting than when you want to be a research participant. Ernie

Hi, I don't know all the meds but I know propranolol works. Ernie

Hi Morgan, I am so sorry you were not accepted at Vanderbilt. I understand exactly what you are going through, believe me. If you would like I could email you personally about it. My email is: homeopathiehn@hotmail.com Ernie

Hi I would suggest asking your doctor for a tilt table test. This way you would know if you have POTS and/or NCS. Ernie

Hi Danelle, I think you should keep on applying because the lawyer is not the one who will make the decision. When I applied all the doctors were telling me I was too young and would be rejected automatically. Guess what! I applied and was accepted the first round. I think what helped is that as my PCP was taking my BP to write it in the medical report I passed out after standing 2 minutes. It was the full seizure syncope and I was not able to stand for an hour. After an hour he helped me get up and I passed out a second time. I ended up staying 3 hours in his office and he walked me back to my car. He wrote everything in the medical report. I could not have been more synchronised!!!! As for finances, it took 3 years before I got my first check and we had to cut all expenses. We almost lost everything and financial pressure was making me sicker. Now things are settling down. Good luck. Ernie

I was on Lopressor for 3 months and I was fainting more than without medication. My specialist wanted me to continue but I stopped by my own decision and changed specialist. I am now on Propranolol which is helping me with the symptoms but not with the syncopes. Ernie

Thanks everyone for sharing your experience and opinions. I will consider it before making my decision. Ernie

Hi Julia, I am so glad you had a "nice" visit. You sound very satisfied with him. I understand why you would want to wait for a surgery. I would do the same thing. Thanks for sharing your visit. You could have been a doctor! You were right on the dot. You have another health issue. Hope you recuperate from your trip fast. Say hi to Ron from me. Ernie

Hi, Welcome to this Forum. It takes a while (years) to get used to living with a chronic disorder. We learn tricks to compensate and to go about doing our ordinary chores. We also have to deal with losing our previous life. Everything takes time but we make it through. We have good days and bad days and we help each other out. We share our experience and knowledge and "wisdom". It also takes time to get the proper medication. Sometimes we have to change doctors to find a competent and understanding one. Good luck Ernie

Congradulation I understand how exciting and relieved you are. Finally financial security! Wow, let's celebrate! Ernie

Good luck with your move Jessica, See you when you are "connected". Ernie

Welcome to this forum. Have you talked to your doctor about having medication? The sugar could be making you gain weight. Ernie