Mary P

I have a lot of nausea because of Orthostatic Hypotension. Gravol works great for me. I think that gravol (in Canada) is another name for dramamine (in USA). Mary P

A cardiologist, an internist and my MD all assured me that my heart pounding wasn't harmful. I wanted to say that it surely did harm my sleep, keeping me awake for ages as I tried to find a way of laying in bed that would minimize the sound and feel of the thump thump..... . A couple of days ago I had the best walk I've had in ages and there has been no pounding since then. Or perhaps I went to sleep so quickly that I never noticed any pounding. On the flip side, that long walk caused so much exhaustion that I was in bed for the next 1 1/2 days. Still, I thoroughly enjoyed the good sleeps and am going for a good walk right now, but not quite so long.

I've had prominent hand veins for countless years now. At first I thought they were some sort of varicose vein. I notice them in other slim people as well, but I never had them when I was younger and slim. I think age and slimness both play a part as time goes by. Perhaps there are other factors as well like thinning skin. They become much more prominent in hot humid weather. I've never had any tight feeling in my hands and I don't think they present a health problem.

Hi to all, I heard an interview on CBC Radio (Canada) with a woman who had had a breast removed because of cancer. I won't say anything else in order to let you discover for yourselves what this woman did after her surgery. Quite clever, I think!! Mary P titbits.ca Guess which word got bleeped out every time it was spoken?

Hi Summer, It's good to read about your diagnosis. I'm wondering what hyperadrenergic means? I'm going to make an appt with the clinic at the Health Sciences Centre in Hamilton. That is supposed to be a top notch clinic, just as it is in Montreal. Hamilton is much closer to me. I see where one of the doctors there has PAF, like me, so I figure that is a plus. Mary P

When I was first referred to a Neurologist and didn't want the long wait, a son phoned to almost beg for an earlier appt and have my name put on the cancellation list. The nurse/receptionist was astounded and empathetic at the neglect I'd experienced up until then.I had never been taken seriousy by my MD and spent most of my days in bed. A week later I phoned to make sure my name was on the cancellation list., and was prepared to keep calling once a week after that. The receptionist said that a cancellation can be made the day before or even the very day of an appointment and that I should be prepared to have very little notice. That was great for me. However, I have to say that the N was only an hour's drive away. Still I would have done whatever was necessary to keep an earlier appt. Within 2 days I had an appt for only one month away, not the orininal 6 months. I would never have insisted as my son did, never described my symptoms in as much detail, but was grateful for what he did for me. I wouldn't have had the energy to do/explain, etc. as he did. So, if you have a family member who can call for you, this may be as helpful as it was for me.

Hi Laura, I'm so sorry to know of all you're going through. Reading your message brought tears to my eyes. This emotional stress adds to your physical problems, and is surely very draining. This simply isn't fair. When you speak of your studies I realize you must be very young. Every day I give thanks that I did not experience a serious health problem until just the past 2 years, and I turned 70 this past April. I admire all of you who study, care for children, hold down a job, etc. I really don't know how you all do what you do. Youre in my thoughts and prayers. Mary P

Hi Ernie, Good for you!! You mentioned blood pooling in the legs. Does this mean that the use of a stationary bike causes blood to pool in the legs? I read on an www site that if we can't use a treadmill, and I can't because it throws me off balance, then a stationary bike could be an alternative way to exercise the legs. I don't need any more pooling because I already have too much of this: 1) Autonomic Failure and 2) Varicose Veins. I can walk, very slowly, for only 10 minutes, so I'm not getting enough exercise. Have you used a stationary bike in the past? I had really hoped to look into getting one. I know that I could never go out on the road with a 'vehicle' such as you have. I know that it too would throw me off balance. Thanks for any advice you may offer. Mary P I

Me too! I try really hard, when anyone is around, to hide as best as possible, the light-headedness and the ensuing loss of balance. I will sit down if at all possible. I will lean against a wall, a car. Once I even grabbed the arm of a man at church. His wife knows about my condition but I've never asked if he knows. One dear friend, on seeing these things happen said, "You're really feeling poorly, aren't you"? I hadn't said a word about myself, but that gave me the opportunity to say that I was having a lousy day. He said, "I'm beginning to understand, and I feel pain for what you're going through". Score one for someone who is 'getting it'. We went to look for plants/flowers, etc. for his spring planting. The smells, sights and colours of the hundreds of plants there, and the milling about of so many other people, was overwhelming. Again, I tried to hide things but he noticed how, when I couldn't hang on to his arm, I was swaying and grabbing for anything to keep me from falling. We came home immediately and he suggested that my senses of smell and sight must be compromised, that I just couldn't process so much at the same time, and I had to agree. There goes one more thing that I won't be able to do anymore. I know that noises and a lot of chatter bothers me. Have any of you noticed this? Now, if I knew how to use the icons, I'd have used a few appropriate ones along the way. Ha Take care, everyone. Mary P

Just as I was sending my last post to my own topic on ' finding othere who live in Canada", an e-mail message came through and it was just about this. Margaret and Laura, there are a few people close to me whom I'll contact, but I' still look forward to asking quetions of you. Thanks again. Perhaps there are more of you who will find the 'Meet Others' program to be of benefit. I'm excited to know I can write directly to someone in the Toronto area others know what up with us Dysautonomic survivors, perhaps know a good doctor, etc. My spirits suddenly feel so lifted by this wonderful news. Mary

Thanks to all of you, Mighty Mouse, Margaret and Laura for responding to my 'wondering'. There are days when I feel so down, so unworthy, because the response from my doctor is still, "a) I have never heard of IT... Dysautonomia, Autonomic Failure, Midodrine, necessay testing, etc, etc, and I don't know anything about it". However, the Neurologist who diagnosed Orthostastic Hypotension said there may be someone in Kingston, Ontario, who might help. Three weeks ago I asked my doctor to try to make an appointment for me in Kingston, but I still haven't heard anything. This is unusual because I've always heard about other specialist appointment within the week. I'm wondering if she forgot to contact Kingston or if no one there knows anything so haven't responded to her. It seems that I'm always waiting and then being let down again. No matter what the emergency, I can see my doctor only once every 2 months. I won't see her again until June 18th. I sometimesa think that someday I could die because of this. She knows nothing about my situation and has 't tried to learn. Neither does anyone at a clinic or the hospital here. I've phoned 3 clinics which are part of renowned hospitals in Toronto and no one there has heard of my condition. Once when I begged for an appointment I was told, "We have 5 doctors here and 10,000 patients. If I could get a good day, I'd go and see the woman who's in charge of making the appointment and see what's going on. The days when I feel well enough to get out are few and far between. Margaret, and Laura, thank you so much for your kind offers of help. You have both said that I can contact you at any time. How do I do this? Shortly after I joined this forum on April 15, 2008, I signed on to the 'Meet Others' programn, but I haven't heard anything from anyone yet. Perhaps I just need to wait longer because I just have to believe that there's someone in the Toronto area that has this condition. Margaret, I'm so glad that you mentioned Dr. Schondorf. In my own www research I learned about him and also the clinic in Hamilton. I'll mention Dr. Schondorf to my doctor during my next visit. I hesitated to mention him to her bere now because it will be at least a 7 hour car journey and that will be hard for me. By the time I arrived I'd be having a really bad 'potsy' day. I've learned the word 'potsy' on this forum. A good friend would take me. I think it might take 6 hours by VIA but I just can't imagine ever being able to make it through the Montreal Station and down to the street to gat a cab. I know the Toronto Station well, and also know that I'd never survive a walk from where we get off, down to the street. My legs just wouldn't get me that far and besides the crowds would throw me completely off balance and I'd fall. Margaret and Laura, you have said that I can contact you if I have any questions. How do I do this. Shortly after I joined the Dinet family, Isigned up for the Meet Others program but I haven't heard anything back from anyone. Some questions I can ask you now, Margaret, are: 1) What sort of tests did Dr. Schorndof give you? 2) How long were you at the clinic in Montreal? 3) Did you have to have any blood work done before you saw him?" 4) Did he send recommendations to your doctor? (As I've said, my doctor knows nothing".) I'm willing to stay for as long as it takes in Montreal, but am wondering how long this will be. Thank you again. I think I finally see some hope ahead for me. Mary

I've had insomnia for years and have taken Restoril off an on for all thoise years. I take only 1/4 to 1/3 every now and hen because Restoril has a half-life of 24 hours, leaving me very groggy..as if I need anything to add to the everpresent tiredness that shadows me. I'm glad to hear about these other meds and will ask the doctor about Ambien or Klonopin. Sometimes when I need something for nausea I take 1/2 a Gravol or 25 mg (over the counter...mostly for motion sickness), and for the most part this puts me to sleep in the daytime when I don't want to sleep. Perhaps I should try this at bedtime. Thanks for all the sharing and good ideas. Mary P

I would very much like to know if anyone in this forum family is from Canada? I'm hoping so, and if so, have you had any luck in finding a doctor or doctors who have been able to test and then help you. Thanks for this. Mary

Deucykub, I absolutely love this response and will surely use it from now on. It's funny, to-the-point and easily understood, without any further explanation needed. Good for you! Mary

I can't tolerate the heat and humidity either. This has definitely got much worse since I was diagnosed with orthostatic hypotension last year. I feel as you do, weakened, nauseous, feeling faint, lousy all over, etc. I know that my BP took a dive after being out in this type of weather for about 10 minutes. I don't remember how my heart rate changed. This year I just won't go out in the H/H because it causes too many problems. It's still really cold where I live in Canada.

I agree totally with everyone who says, "Just say no". I said 'no' from the very beginning because I can't tolerate the additional exhaustion, weakness, light-headedness, nausea, etc. etc. Everyone except one son accepts that I know what is best for me. I just can't 'get through' to him that he can't visit for at least 4 days. So, he sulks and won't come at all. That's fine with me because I know that I'll be in bed for at least a week after such a stay, perhaps even hospitalized. The thing is he doesn't offer to do anything like get a meal, do a load of laundry, do dishes, etc. It's all I can do to just look after myself. Another son will come for only a short visit and will do anything and everything that needs doing. He doesn't want or expect me to do anything. He shops for me and we go out to eat. Friends will stay for only 1/2 to 1 hour and will leave earlier if they see that I need them to do this. So, all-in-all, I'm very fortunate. The same applies to invitations to another's home. I simply won't stay overnight and won't go at all if I'm not having a really good day because this is as draining as having someone come to my home and talk or stay too long. So, just keep up your courage. You have to look after yourself. You are the one who has to deal with and suffer through poor health. Mary

Hi Ernie, Thankyou for your quick and kind response. When I asked about Dr. Grubb, I had no idea that he was taking a leave from his practice. I joined the Dinet site in mid April, 2008, and now and then I would see his name in someone's post. I was curious as to what he did because a lot of people were anxious for his input and help. You see, since being diagnosed in Dec., 2007, my doctor still hasn't got a clue as to whom she can send me to for help. My only help has been following the advice given on various www sites. One of my sons and myself took it upon ourselves to phone various Hospitals/Clinics in Toronto to see where this would lead us. I had hoped that if anyone at these places has even heard of Disautonomia, Pots, Autonomic failure, etc., then I could give this info to my doctor. No such luck. So, 4 1/2 months later I haven't even had a referral let alone an appointment. People in Canada can wait from 6 - 12 months for an appointment with a specialist. IIf I ever do get a referral, by the time I do get to see a specialist, I'm guesstimating that a year will have gone by since that diagnosis last December. It was just a coincidence that I asked you what Dr. Grubb did in his practice just as he is taking time off. Yes, I understand that anyone at anytime may need time away from the stresses of whatever??? Teachers, priests, nurses, and yes, doctors. I recently met a doctor who had to retire at a young age and will never return to practice again. A receptionist at my doctor's office told me that she has over 2000 patients and that's why, when I need an appt, I have to wait at least 2 months. Last week I was told to go to a clinic or the hospital. The problem is, no one at the places knows anything about my condition either. It's quite scary. Just a week ago I heard on a CBC Radio programme that there are only 250 neurologists for the 11 million people in Ontario, Canada. I don't know what it's like in the other provinces but it's probably just as critical. With this kind of crisis, it's very little wonder that it takes a year to get an appointment, Even more critical is that some of the few neurologists we do have can't take the strain and demands of their work and are retiring or moving to the USA. I wish you a good weekend. I guess your weekend is well underway by now. Mary

I live in Ontario, Canada, and would like to know who is the famous Dr. Grubb that I keep hearing about? Is his only specialty in diagnosing and treating people with POTS? I could never go to the Mayo Clinic but would like to know just what he does. I've gathered from what I've read on this site that POTS sufferers very much appreciate the opportunity to get an appointment with him. Ernie, if the May clinic is indeed cancelled, a lot of people will surely be disappointed. I'm sure one has to wait many months to see Dr. Grubb.

Friends have said, "How are you? and I'll say, "I'm don't feel all that well today." Then they'll say, "But you look great", or ,"You sound great, or, "You'll feel better when the warmer weather comes." I'm not going to put on a sadsack face and voice and walk to show how I really feel. At the same time I know that no one, (at least in my world, even my doctor), has ever heard of POTS or Orthostatic Hypotension, etc, etc. So, now I say respectfully, "Just pretend that I'm a gift. All you see is the pretty wrapping. You have to remove the wrapping and open the box to see what's inside. Think of me as the box. You can't see what's inside, but I promise you, you wouldn't want to have what's inside me, just like you don't like some gifts you receive. There is a respectful silence when I say this, but still the same people will make the same remarks again. I in turn repeat the 'gift' analogy and I'm sure that one day these well-meaning folk will begin to understand. I've also begun to print off info on POTS to give to them because I do feel that they really want to try to understand. I want to show them why I can't do the things I once did with them, e.g., go to a movie or to a rug-hooking or yoga class. At least they're showing concern. Having said all this, I have begun to see some hint of understanding with my closest friends. I hope that they in turn will help me help others understand why my life has taken this 360 degree turn. My family (sisters) still don't want to talk about it and I've stopped being upset about this because the only person this hurt was me.

This is all so hillarious. Until today, when I was able to laugh at everyone else's diagnoses, I was really annoyed at things my doctor and others have said. The Number 0ne diagnosis for my doctor is "There's nothing wrong with you!" Yet, after three of her proclamations, and with me still feeling miserable, I asked to be referred to a specialist. I was diagnosed as having: a) Seven TIAs or more (MRI), H-Pylori (scope down my throat and into the stomach), and c) Strep throat (a simple swab did the trick here). Only then was I believed. I now consider her second diagnosis, without even hearing what I have to say, to be "What's wrong with you now?" Last Fall when I saw her for the first time to talk about how miserable I had been feeling, she asked in a 'put-down' voice, "What's wrong with you now?" She did it again when I saw her the second time, when things were even worse. The second time, after she said, "You've been 'dizzy' for 18 years", I asked to see the neurologist who had diagnosed the TIAs 5 years earlier. This time I was diagnosed this time with: d)Pure Autonomic Failure. Again, only then did she believe me. That's sad! Except for what I truly consider to be a serious situation, I have seen her only for my annual exam. I can't believe that after 4 specialists have diagnosed 4 serious conditions, she still doesn't take me seriously. Perhaps I have to take some responsibility for what has been happening to me. I don't speak up and ask to be respected and believed. In my town we can't change doctors. There are about 4000 people here without a family doctor and no doctor will take on anyone if he/she wants simply to change. Any new doctor to town interviews only those without any doctor, and makes choices as to who is acceptable as a potential patient and who isn't.

Thanks for this info, Flo. No, I didn't know this but it's something we need to be aware of. This will give me something new to research. I've been researching POTS for a year now, although initially I didn't know that my search for 'heavy, achy, weakened and swollen legs would lead eventually me to POTS. At first the only info I found regarding my symptoms was that they related to varicose veins. As other symptoms manifested themselves, I was eventually led to POTS. I then knew that I had a 'double whammy' as regards blood pooling in my legs since this is true of both V V and POTS.

Hi again DeucyKub, I forgot to say that I got a great morning chuckle from your diagnosis of 'Tall Thin' disease. It might be fun to put it out there for anyone else who might want to share other similar experiences, similar to all who responded to what jobs they have. I'm retired after 35 years of teaching Grades 1/2 and then 5 years of teaching children from Kindergarten through University at church to do the readings, ushering, etc, just as the adults did. I loved every second of my involvement with these beautiful children and miss it terribly. However, as I had to slow down more and more with my church ministry work, I was forced to retire.

Hi Mack's Mom, I'm so happy that you responded. It has allowed me to 'think back' again. No matter what the situation, I'm sure it's good for all of us to realize that others know and share what we're going through. I've never been in a car accident but in 1982 I fell on my back on black ice and immediately did a backwards summersault. I was also immediately light-headed and sick and had a terrrible headache for several days. I saw a doctor and he daignosed a consussion. Later, when things didn't improve, I was sent to an ENT doctor but no problems were found there. Now, when I hear that both you and DeucyKub feel that your Pots symptoms started after a car accident, perhaps the same started for me after that fall. I could even hear the 'crack' as my head hit the ice. Who knows? Mary

Hi Deucykub, It has helped me to read your kind response. The things that you mention happened to me as well and I never fully fainted either. I had to lie down and I still do. Now that you've mentioned 'low blood' I recall that my dad's doctor told him the very same thing. Amazing, isn't it! This is why it's so great to have this sharing and caring with our forum family. My husband was a gentle teaser and sometimes, to give a lighter look at things, he'd give me a big smile and hug and say, "You must have felt a bit dizzier than you normally do". Because of the way he'd say things, this never bothered me, rather I loved it because it meant he cared. Once when he was in a hospital to have a blocked vein replaced with an artificial type, due to cholesterol, his doctor would send him to talk with other patients who were in distress over similar things that were what was happening to them. These people loved and treasured his visits and my husband became lifelong friends with some of them. Mary

I had a young friend type my earlier message as I dictated it to her. I just noticed that POTS was spelled as POTTS. She thought that this medical condition would be spelled differently that the item she heats soup in. Ha