Mary P

In reading your many many messages and comparing them to myself, I've come to think that I've probably had symptoms of orthostatic hypotension, specifically POTS, on and off since I was a child. I fainted a lot as a child and now and then as an adult. I've had cold hands and haven't been able to sweat my entire life. As a result of the latter I guess my body overheats and I can't tolerate the cold or heat and humidity or exremely warm indoor environments. I've had a number of TIAs which I've learned can be caused by orthostatic intolerance. For many years now I've had problems with light-headedness and loss of balance, but tests showed that I've had had no inner ear problems. Things seem strange now as I think of my past but things have also begun to make sense as well. I'm wondering if this sort of thing happened with anyone else? I've also begun to realize that, although no one knew it at the time, my dad surely must surely have had POTS. He died 42 years ago and had what we would today know to be Parkinson-like symptoms. My doctor told me that I could develop this but I didn't think about my dad at that time, and haven't wanted to think about it even now. However, I feel that I have a new family within this forum and feel that I can share this with all of you. I won't relate everything but I remember how, when he could no longer walk, my mom would stand behind him, put her hands around his waist, and put the toe of each of her feet right behind the heel of each of his feet. Then by gently pushing one foot at a time, she would take him to wherever he needed to be. I remember the last time she did this was to take him and get him into bed. He died quietly of a stroke that night. An Irish-style wake with fiddle music and singing was held for him at home. Are any of you old enough to remember a wake being held at the deceased person's home? My know my mind is wandering, but since I've made the connection with my dad and POTS it has been led in many directions. My mom was rewarded I guess, because after operations, she was kept at home through terminal cancer and was able to die there as well. Wouldn't it be so wonderful if each of us could be cared for and die so gently! I guess I think more of this because, at age 70, I know that I'm much older than any of you, and full blown POTS happened to me much later that with all of you. I have so much admiration for all of you young people who ar dealing with Potts while raising children and working and goodness knows what else you are doing. Take good care.

Your good news also brought a tear to my eye and I will continue to pray for all of you. Miracles of every sort do happen. I know that even some surgeons pray for good outcomes.

Hi kansasgirl, A cardiologist told me not to worry about a racing heart, that eventually the beat would return to normal. I guess doctors will have to experience what we do in order to understand the scary situations we have. Twice, in the hospital I was given a med to return things to normal. Another time, after about 35 minutes, things did return to normal on their own. When the emergency room doctor returned for the third time and saw this, he said, "****", and walked out. I didn't get the chance to ask why he said and did this.

My doctor has never liked when I suggested something I read or saw about what pertained to me. However, after reading your response, I''m taking some materials to my doctor tomorrow. She should be okay this time because she has my diagnosis fron the neurologist and she accepts that, like most doctors, she knows nothing about Disautonomia.

I'm sure that one of you kind people 'out there' responded to my message, 'On my own', by suggesting that I might want to see a 'Neurophysiologist'. I just can't find this again, nothing unusual here...can't remember or find. ha. Anyhow, was I correct or was I reading a response to someone else's message? What I'd like to know is, "Has anyone seen a Neurophysiologist for some sort of automatic disorder and was did this doctor help?" Continuing on my own, through the www I found one such doctor in a Toronto Hospital and will call tomorrow. Wish me luck and thanks.

Hi Meg, Thanks for your encouragement. There's no doctor on the list on this site who can help me. However, I did find a neurologists at 3 different hospitals in Toronto and will pass these names to my doctor and see what she does. I think that I'll phone first just to see what's what with taking on a new patient. I've done everything else myself so why jusy hand her a list of neurologists when she told me she didn't have any idea where to begin to look for one.

Hi Deb, Thanks for your kind words. The stress of negative family attitudes are as hard on me as the condition itself. Now, a dear male friend who can't cope with what's happening to me has 'coped out' as well. This has been devastating as well. I think that once I do find a doctor who will help me, I'll probably have a TTT. I've read about this test and am scared to death of it. How did you find it?

Thanks for your response. I actually saw an internist when I was taken by ambulance to our hospital with a 'racing heartbeat'. That was April, 2007. He ordere a ton of heart tests and a kidney test but everything turned out okay. He said that my blood pressure was very low but let it go at that. I remember being so fatigued that I just wanted to go home and go to bed so I didn't ask anything about this abnormal blood oressure when he didn't suggest that anything else be done about it. Have you had any luck withyour health problems by seeing an internist?

Me too.... I'll add your dad and all your family to my prayers. When a loved one suffers, so does the entire family. You'll be anxious for good news and I pray that will come a.s.a.p. I pray that your dad has the best doctors possible...skilled and compassionate. God bless and be with all of you.

I'm so glad to have read your posting. I take it from your inquiries about a cool suit that you can't tolerate the heat and humidity that is to come. I've never been able to tolerate H&H but it became a milliuon times worse last summer and I only went out for about 10 minutes in the cool of the evenings. Now I know that I can at least try to find some cool clothing. Wow! Won't this be great! I've so much to learn.

I'm truly sorry to hear that you have to suffer this much. I can't imagine what you're going through but you're in my thoughts. Do you find that the main source of your weakness begins in your legs? Mornings are worst for me as well, but I'm not as nearly as poorly as you in this regard. One of my earlier symptoms that told me that something was seriously wrong was leg weakness, heaviness and aching. I'd go for a walk and when I felt I'd fall, I'd slide gently down onto someone's lawn for perhaps 1/2 hour before I could move on home. No one saw this because everyone was either at work or school. I didn't walk all winter but have had a few very short walks recently. I used to have a much 'rougher' time even when taking those first few steps out of bed. I'd feel as though I would fall and sometimes had to slide to the floor and crawl the short distance to the bathroom. I'd be weak, light-headed and nauseated and my heart was racing. I'd take a gravol with a full glass of water and return to bed for 2 hours and would then find it easier to get up and proceed slowly into my day. Then, research led me to do leg exercises before I got out of bed, and things have been some better since then. I lie on my nack and push my legs, one at a time, up and down along the mattress. Then I lift them, one at a time, up and down. Then I shake them in the air. Finally, I sit up ever so slowly and move them up and down, as if I were marching. Then I put my legs back onto the mattress and put on thigh-length support hose before finally getting up. All of this takes about 5-6 minutes but it has helped me. The waist-high hose suck the life out of me. I hope you don't mind that I've told you what has been helpful for me. I'm new to this site and have never been part of any forum until now so don't really know what's proper. I don't want to come across as a 'know-it-all'. I know that we are all different but should you decide to try this, I hope it helps you as well. I'm so thankful that I've discovered this site and am so grateful to know that I'm not alone and that there are others who understand and care. I have also had the head of my bed raised 5" to make it easier to get out of bed. I have used reputable sites for my research so, with no help from any doctor, I have to believe that what I've been doing has helped me. I leave my breakfast set out at night so there's less effort to getting this ready and eaten in the a.m. This saves strength and energy when things are worst for me. I do notice that if I don't drink at least 8-10 glasses of water/fluid a day, I'm not as well as I could be...whatever well has to mean for us. Two of these glasses include gatorade, one is fruit juiceand one is coffee. I'd never get down just water. I also keep 2 glasses of water on a night stand because 8 hours is a long time to go without fluid.

Thanks for your reply, Meg. The neurologist was most helpful and caring. However, it's my own doctor who isn't, and with this condition I'm sure I'll have to see her a lot once I get the initial help from someone else. I did find the name of a doctor in Hamilton who I'm going to call. I'll ask him if he knows of another doctor who lives closer to me. I'll let you know.

Hi kansasgirl, Thank you for your reply. I guess I have to feel lucky when I read that you're only 27. I didn't begin to have health problems until I was 69. When I speak of family I mean my 4 sisters, two of whom are nurses. From my research I've learned that medical people in one's own family are the ones who are least likely to believe. One nurse sister said in a letter, "I just don't understand you". Another said "I deal with sickies at work. I can't deal with sickies in my family". I think that this latter sisterone is actually afraid for me and doesn't want to talk about things. I don't live close to any family so this makes things difficult for me. No one has seen me to see how I am on bad days. However, I'm grateful to have wonderful friends and church family. A nurse friend confirmed how my nurse sisters reacted by saying that a nurse in one's family will offer all manner of support to all except family. I do have a son who offers 'man' support but there's no emotional support there. Your husband sounds like a great man. If my husband were alive he'd be the same for me.

I'm wondering if anyone 'out there' has had to fend for themselves as I've had to? It takes months to get an appointment with my doctor, so in April, 2007, I knew I had to learn for myself. Eventually I diagnosed myself as having orthostatic hypotension but wasn't believed by my doctor or family. Has anyone else had this problem of not being believed? Then, on seeing a neurologist, he confirmed what I was right, but added the term Pure Automotive Failure' With his report I was believed, but my own doctor knew nothing of my condition and knew of no one else who might help me. I really don't blame her for thisI'm grateful to have just now come upon this forum and am anxious to communicate with others 'in the know'. I would be most grateful if someone could advise me of a doctor in the Toronto area who treats people with my condition.