Ernie

Hi Katherine, Happy Diniet anniversary. Wish you many more good years. Ernie

Hi Tearose and Emily, I got the appointment for my next Sleep Study: March 6-7 and I will get the result on ???????????? May 4th at 3:45 p.m.. I am not happy with our Health System in Quebec but there is nothing I can do about it. Since I have been diagnosed by Dr Goldstein I have better treatment from the medical community, that is, they treat me as someone who is physically sick as compared to someone who is pretending to be sick. I have had to change all my doctors because the others had such big egos that they were denying the organic proof of my disorder even after the proper diagnosis. The new doctors are nice to me and they believe me when I tell them I will faint if they make me do this or that. The sleep doctor that I got took me seriously and he was very interested in my case but he is changing department at the end of the month. He is the first in Canada to want to test me. Usually doctors just tell me I have nothing, I am healthy or I need a psychiatrist. So I don't know how the other one will be! I will have to wait more than 6 months to try the CCAP machine. I am taken a sleeping pill to help me go to sleep and I need to sleep 10 hours per night. My gut feeling is that the CCAP machine will help me. They don't want to prescribe it before I do another Sleep Study because they still have many unsanswered questions. Ernie

Hi Morgan, I am sorry for the loss of your friend. I will sending you positive thoughts. Ernie

Hi Melach, Yes, orthostatic syncope is the kind of syncope that we have. This is why I gave a list of the symptoms because dysautonomia and this sleep disorder overlap. Ernie

Hi, I have been doing a little research and found some of the symptoms related to this disorder: The functional somatic syndromes (9-11) include chronic fatigue syndrome, (12) fibromyalgia, (13) irritable bowel syndrome (IBS), (14,15) migraine/ tension headaches, (16) and temporomandibular joint syndrome. (7,17,18) In addition to a common symptom of excessive sleepiness/fatigue, these syndromes feature the following symptoms/signs: sleep-onset and maintenance insomnia, unrefreshing sleep, EEG evidence of sleep fragmentation, bruxism, muscle pain and tenderness, heartburn, abdominal pain/ urgency, diarrhea, headaches, depression, and orthostatic syncope. I'll keep you posted if I find anything relatied to dysautonomia. Ernie

Hi Tearose, I hope you are feeling better today. I can only tell you what to do but don't do what I do because I am exactly like you. Everybody keeps telling be to slow down and it is just instinctive that I have to do. I don't know if it is my personality or the adrenaline problem but I am often above my limit and have to pay for it. I wonder what we could do to learn! Ernie

Hi, Welcome to this board. Have you been checked for subclavicular obstruction? This causes a fainting episode when we move an arm? Have you tried medication for fainting since you had a positive TTT? That's the easy way out for doctors to tell us that we are psychogenic. This way they don't have to admit that they don't know. Ernie

Hi Morgan, I am so sorry that your friend is severely sick. I will pray that his last moments will be peaceful. Ernie

Hi Geneva, I have to wait 2-3 months before the next sleep study because here it is Canada. There is a long waiting list. Then I will have to wait a month to have the result. We have to wait a year to see a specialist. Ernie

Thanks Nina for helping me with the search. The articles you found me were very interesting. I found out that this disorder officially exists since 1993. At least there is a name for what I have! and it did not take 30 years to figure this one out! ah! ah! ah! The treatment is CCAP machine. So I will know after I redo the study if they will prescribe the CCAP machine. Good night Ernie

Hi, I have that feeling also that I am not doing enough for the group or that I am not doing my share. Intellectually I know that I am doing my best. I am no doctor and many of the posts are about medical questions so I don't have a clue about what to say. Another problem is that I live in another country so I don't have the same jurisdiction. So most of the time I answer questions about TTTs or to encourage others (I hope that's the result people get!!!). This group is like my family and I cannot go a day without checking in. But I don't always have the energy to answer or the knowledge to do so. I tell myself that we cannot always be giving and receiving equally (ie 50/50). We have our bad days and good days and we do our best with it. We have such a nice support system here, where when one feels bad the others are there for support, and eventually we get each our turn to help or to receive. We cannot each one individually always be there 100% of the time for the group but the group is there 100% for each one of us. That's my philisophy! Ernie

Hi , I just got back from my sleep specialist. My diagnosis: Upper airway resistance syndrome. Do any of you know what that is? Of the 6 hours that I was connected I slept 2 hours and did not have any REM sleep. I have to go back for 2 other sleep studies because this one was not conclusive for sleep apnea since I had no REM sleep. One of the study will be the regular night study and the other will be done during the sleep. The doct asked me if I could sleep during the day. I told him that I could give it a try. So I think I will have it in about 2-3 months. Ernie

Thanks Etoly and Katherine for sharing this article. It is encouraging to see that reporters are starting to be interested in our disorder. Nice initiative Rita to write to the reporter. Ernie

Hi Nina, I am sorry about the new diagnosis. You kind of a feel for it! I am glad that your doctor is reading up on dysautonomia to be able to care for you better. I hope that your treatment goes well and that you recover promptly. Ernie

Hi Angela, I know how emotional this move is. Try to focus that it is only temporary. I'll be thinking of you. Ernie

Sorry for taking so long to answer. I had written the answer and then I hit a button and lost everything. I was so frustrated and needed to calm down before rewriting. I feel much better today because “the day” is over and because you helped me see other things in life. Hi Gayle, You are right on the dot. Yes, yes, yes, I would be further along in recovery. As a matter of fact I would like to be cured but my reality is different. Katherine, It is very hard to admit openly that I am disabled and I have decided that if I want to have an active life I have to do so. In a way I feel like an inposter because when I am at home I don’t use the wheelchair because I can lay on the floor or I can take all the time I need to recuperate when I faint. It’s funny how we think sometimes! Rita, Thanks for telling me a have a wonderful spirit. It’s nice to see how other people perceive us. Steph, I did find some nice clothes! I bought a coat with a fur lining. You know how cold it gets here in the winter –35 F. I am cant of eager to see if the coat will help me out but I can wait a few more weeks before the temperature gets low enough. I hope that with this coat I will be more cold tolerant. My husband got a suit. Yeah, I am getting a “character”. Beverly, When I started to get acutely sick 4 years ago I though I would be cured in 2 weeks, then 6 months, then I did not know anymore. Thanks for making me realise that I made another step. You are very insightful. Corina, You are right. I could have never done that without the wheelchair. My husband what happy that we were able to go out together and not have any “incident”. I will try it again! Geneva, I remember when I got the POTS diagnosis and the doctor telling me that it was not a fatal disorder. I looked at him meaning: “Do you think that I feel better because I have a normal life expectancy?” There are things like that that we will never forget! Tearose, I like the idea about celebrating our member anniversary day. This is something I had to learn, to reach out to the others to ask for help. I had always been the caregiver! Martha, I usually meet nice people, at least when I go to doctors’ place. Maybe the woman was stressed out because of the x-mas shopping or other personal issues! Dawn, I don’t have social phobia but I am afraid to hurt myself or get mugged if I faint in public. I avoid as much as possible crossing streets alone. Many of my therapists have told me that they don’t want to treat me anymore because of all the syncopes so I am kind of stuck with cancelling at the last minute because I am too sick (and risk being fired) or going and fainting (and risk being fired). In any way I feel I am loosing out because people don’t understand. A month ago I was going to an acupuncturist and I cancelled my appointment 1 hour before the time because I had just fainted at home. He insisted that I find someone to go later during the day. I kept telling him that I had diarrhea and my periods but he was so upset that I was cancelling. I had 2 floors to walk to get to his office and I kept telling him that I would not be able to go up. The following week I was OK but when he did the treatment he triggered an adrenaline rush. I told him that I was not able to walk to my car but he insisted that I leave his house. So I fainted down the street. He told me that it was because I got up too fast! So when I went to see him the week after he asked me to cancel 24 hours ahead of time. Yeah, sure, as if I am going to know 24 hours ahead of time when I am going to faint. So I stopped going to see him. Merrill, Thanks for the nice poem. You just made me realise that I kept some cloth because of the emotional souvenir. For example, one dress I keep because this is the one I used to wear when I went to ballroom dancing. Guess what, I was able to throw away a full garbage bag of cloth after reading your poem. Ayelet, I really like the example you gave me about your friend. I think I will use this line whenever someone says that I can stand. The other day at the store a few people looked at me when they say me stand. Nobody said anything but I could see their surprise in their eyes. Like you said we don’t have to be crippled to be disabled! Stacey, When I left the house Saturday morning I thought it would be an easy job since I was in the wheelchair. I was surprised that I had to lay down in my wheelchair and that when I came home I was so exhausted. But I am proud of myself to have succeeded. I got some new clothes! Good night Ernie

Hi Porque, Welcome to this board. After reading your story it sure sound clear that you have a health problem. I can't tell you which test you need to get diagnosed but I can tell you that it took me 30 years of telling doctors about my symptoms and to finally get diagnosed. You have to perservere and find "the doctor" that will know what you have. When I went to NIH I was told that I was the first in the world to be diagnosed with this specific type of POTS. Here in Canada they did not have the equipment to test me properly so when they tilted me I did not fit the standing response of syncope and they told me I was psychogenic or had Munchaussen syndrome. Now I have some medication and better quality of life. Good luck with your search. Ernie

Hi Corina, I agree that you could ask them to lay down. Maybe you could lay down to write the exam or write part of it, take a break and continue. You can also ask to eat and drink while you write the exam. I hope that this test brings you positive news. Good luck tomorrow. Ernie

Hi Butterfly, What a nice boardname! Welcome to the forum. I have POTS and NCS and it is confirmed that I don't have IST. Take care Ernie

Hi Opus, Congradulation on getting back in your house. What a challenge you have had. Be careful not to overdo it. Ernie

Hi Morgan, I was actually thinking about you yesterday and wondering how you were doing. I had hoped that you were better not worse! I am sorry that you are loosing part of your hearing. Can you be adjusted with an hearing aid? I hope and pray that you don't loose the second ear. Ernie

Thanks Gayle and Steph for bringing this up. I never had one done but I will surely ask to be sitting down. Like someone else said, I would not want to be "traped" in the machine while I faint! What an experience. The poor lady also got severe injuries. Maybe she had some kind of NCS or the pain triggered the faint. Ernie

Hi Steph, I agree with what Beverly has just explained about lab results. Also the range is built so that 95% (sometimes it 90% or up to 99%) of the populations falls within the inside of the curve. But if you are the exception and you are the 1% which has a seemingly normal result but for your body it's abnormal it will not be considered. The tests are based on averages, not on exceptions. Also it might be biased by the person doing the test. For example, when I went to Vanderbilt last year I was suppose to stand for 10 minutes for the catecholamine test. After 1 minute the nurse realised that I was starting to faint so she layed me in bed for afew minutes and then made me sit for the following minutes. Then she made me stand for the last 30 seconds of the 10 minutes. She told me that if I could not stand for 10 minutes I would be disqualified from the protocol so I agreed to do it her way. So when I got the adrenaline and norepinephrine result, the doctor said that it was not that high. I was about x3 the norm but it was normal for someone about to faint. The sad part was that she wrote on the report that I stood for 10 minutes while I stood for 1 minutes, laid for 8, sat for 30 seconds and stood again for 30 seconds. When I told the doctor about it he did not believe me. He believed what the nurse had written on the report. So for me and research this result is nowhere showing what my real problem is. When I did the same test at NIH, I stood until I fainted (it took only a few minutes and they took my blood while I was unconscious), and I was x20 times above the norm for adrenaline. I did not make it to 10 minutes but for them the important part was to know how high I get when I faint. I think it is normal also to be angry and frustrated at the medical system because we pay for them and they (government, insurance companies, pharmaceutical companies) don't invest very much in dysautonomia research. We and our doctors get to feel helpless. Anger can also protect us from depression. (I am not implying that anyone is depressed). It gives us a motivation to move ahead and try to find solution. Also, it might not always be anger but determination and assertiveness! Well, I hope I didn't say too much! Ernie

Hi, I just came home after visiting the only friend I have left. She is the one that drives me to all my doctors visit. I am glad I did not stay alone at home because I wanted to have my mind off this anniversary. I am amazed at what everyone of you wrote me. You are all so very generous and understanding. I read every answer and I will answer each one of you personaly (in this post) tomorrow when I feel better. I want to thank you before going to bed. Ernie

Hi Nina, Congradulation on you comp and trip. I hope you have a lot of fun and have time to relax. Ernie