comet555

I'm definitely not in the medical field. Have probably had pots since I was a teenager (about 15 years ago) and have not been in any medical related field since then. I went to university for teaching and then worked as a teacher for a couple of years before staying home with the kids.

Like many of you I also feel tired all the time so it doesn't seem to matter whether I'm walking up a flight of stairs or skating. So I figure I might as well play sports as I need to do something to try and keep in shape (or rather loose the weight I've packed on). Running has always been a no go for me though! I've often wondered why I have a hard time exercising and when I compare it to hockey I can only come up with one or two differences. I still find hockey exhausting and barely manage it to be honest, but the difference is if I don't keep working as hard as I can then I play like crap and let my team mates down. There's just more motivation to play hard for the sake of your team and also to try and win the game. When I try to exercise there's nothing that keeps me going and pushing through the fact that I feel terrible. So when I feel like crap on the cross trainer at the gym I'm more likely to stop when I've had enough, rather than keep pushing beyond what my limits should be. I used to think I was just lazy because I dreaded going to the gym, it just seemed like so much effort. I could never understand why on earth anyone would love going to the gym! With sports it was different as I had a set time to play and people who were counting on me to be there. Plus, I actually do have fun for some of the game too.

Thanks everyone, your comments have been very helpful. It's nice knowing that it's normal (for us anyway) to be able to have difficulty with the little things and still be able to do more strenuous stuff as well. I've only really found out what was wrong with me but I think for the last 15 years I've just adapted to the way I felt. I very rarely dried my hair, basically just for weddings. Most of the time I just have a quick shower and throw on a baseball hat because it's easy. I do have two little kids too so I'm still in the mom mode I guess! It just never made sense to me how I had so much difficulty holding my arms up to do my hair, or getting breathing on stairs, and yet I could still play sports. I couldn't do cross country or any sort of endurance sport. Just sports that had a short bursts with rest or volleyball which isn't as bad as running for some reason. Stairs are a killer for me though, basically anything that requires lifting my legs much. At the gym I can't run on the treadmill but find the cross trainer a bit easier (elliptical). The bike has always been ok too. Anyway, will see how I can get this across to my doctor when I see him. I actually saw him this week but he didn't have the letter from the cardiologist that was supposed to be there even though it's two months since my appointment (grr). So I had worked myself up to talk about everything and then he didn't really want to discuss it yet without the diagnosis, which is understandable but really annoying as I had hoped to try some sort of medication. Just increasing salt and fluids is not doing the trick. Oh, and as for the reflux that someone mentioned. I've had that for about 8 years now but only found out it was reflux last year. I never had heartburn so the doctors kept telling me it was post nasal drip. I tried all the various sprays with no help and eventually I just gave up complaining about it. Then after 7 years I got pushy and with my new doctor insisted on checking into it further. They eventually did a scope down my throat and could see damage from the reflux so started me on Nexium. Since I don't have heartburn I have no idea which foods, if any, would be causing a problem. I did have allergy tests done when I was about 19 and wasn't allergic to anything but I suppose I could still be intolerant to something. I just don't think I'd be able to figure it out on my own.

I'm going to have my first meeting with my family doctor since my diagnosis from the cardiologist. I'm trying to figure out how I can explain to him how I can still play competitive sports (hockey) and yet still have constant fatigue, palpitations and episodes of pre-syncope. So, does anyone else have pots and can still manage to play sports? I know my symptoms are mild compared to a lot of you on here but I do still see the impact on my daily life. Oddly though I've always been able to play sports, although admittedly I do feel like total crap while I'm doing it. I think I've been able to play hockey because each shift is only about 45 seconds long and then you get to rest for another 45 seconds to 2 minutes in between. This allows me to recover just enough to go out again. The whole time I'm playing though it's like I can feel the blood pooling in my legs and they're so heavy it's an effort to skate. That plus and the awful shortness of breath. There were some nights I would drive home and cry because it was just so hard I wanted to quit. I couldn't bring myself to quit though because at that point the doctors had told me I was fine for years so I figured it was just all in my head and that everyone probably felt that way when exercising. The only reason I kept playing for the last 10 years is because I needed the exercise and I had no reason to quit (medically anyway). The thing is my doctor knows that I play competitive hockey so I think I might have a hard time explaining to him how I can do that and yet get out of breath when I walk up the stairs or why I never dry my hair because my arms get too tired? Even to me I would find it hard to explain to people. I think my other problem is I'm just not pushy enough to make the doctors take me seriously.

I know this is an old post... but I was also wondering if anyone has seen this doctor? I live in Ontario and am hoping to be able to go see him eventually. I haven't seen any other specialists listed in Ontario so I'm hoping he's good!

Well, I'm at the beginning of my quest so not really sure where I'm going at this point! First off the family doctor with hopes of getting more info and some medications to try, also looking to go to the nearest specialist which is about 5 hours away. We'll see what happens!

Thanks for the welcome guys, I'm happy to be here! My heart rate does shoot up when I stand, which is what prompted my doctor to order the holter monitor initially. I don't know what it is normally, never checked, but when I'm laying in bed in the morning it's about 60 and within about 10 seconds of standing it's at 120 bpm. So it goes up significantly enough then, although I don't think it's quite that dramatic during the day. I live in Canada so I don't think the Mayo clinics will be much help. There is a a specialist in my province about 5 hours away so I'm hoping to get to see them eventually. I'm still early on in the process so I'm not too sure how much help my local doctor is yet. My cardiologist seemed done with me though as when I went to see him and he gave me his diagnosis he just suggested increasing my salt intake. He said several times that my heart was fine and when I asked if I needed to be seeing him for treatment he said no, you're heart's fine. So I pretty much got the impression that he wanted me to see my family doctor. So will give that a try. Oh, and this is the place I'm hoping to go to: Carlos A. Morillo, MD, FRCPC, FACC & Juan C. Guzman, MD Autonomic Disorders Laboratory – Syncope Unit Arrhythmia Service, Cardiology Division - Department of Medicine, Faculty of Health Sciences, McMaster University Health Sciences Centre – Room 3E25-D 1200 Main St. W. Hamilton, Ontario, Canada, L8N3Z5 905-521-2100 Ext: 75616

Just wanted to say hi to everyone and that I think this forum is fantastic! I'm so happy to have found somewhere full of people like me I've been fascinated reading everyone's stories so I will add my own. I'll apologize in advance for the length and the rambling I'm sure to do! Since I was about 15 or 16 I have felt pretty crappy. Not so bad that I can't function, but tired all the time with an often racing heart rate and palpitations and pre syncope episodes. I can remember walking up the stairs in high school and getting out of breath. I always thought it was odd given that I played lots of sports in high school but my endurance for anything was terrible. I used to hate warm ups for volleyball because we would run around the school and I could barely do it. I could do sprints, or field events or volleyball as there wasn't lots of running (long distance was definitely out though!). I complained about the breathing problems too my doctor and was told I had asthma and was given an inhaler. I never really thought that helped so he gave the doctor gave me a different when. When that didn't help he sent me for an exercise test. They checked my breathing (and pulse) at rest and then had me ride a bike and see what happened. After about 2 minutes they made me stop because my pulse was already at 80% of max (now I know why!). I told my doctor I had barely got started riding the bike when they made me quit. He just said to keep using the inhaler and that was it. In my last year of high school I fainted in the library. I was reading on the floor and got up and started walking and then fainted. I could feel it coming but I'd never fainted before so didn't know that's what was happening. I fainted again about 6 months later while taking a shower. Then I went to see the doctor. His advice was that some people just faint and not to take hot showers any more. I was annoyed at him but though what do I know, I'm like 18-19 and he's a doctor so I took his word for it. My next bad phase was in university, I think I was about 19 or 20 and just about flunked out of school that semester. I was getting dizzy all the time and kept feeling like I was going to faint. I was tired and just felt crappy. At the time I found out my grandfather had a heart condition (hypertrophic cardiomyopathy) that was genetic so I went to see the doctor. The symptoms for his condition overlapped quite a bit with my own so it was a good excuse to go get checked out. They checked out my heart (ECG and echo) and said I was fine but never mentioned any further testing. They did check my thyroid too and said it was just barely within range but it was still normal. So that was it for that. Over the years I tried again talking to the doctors about the constant fatigue I felt and loss of energy when trying to do little things (like stairs). They pretty much always brushed it off and would once a year run a blood test (which is about how often I complained). I can't say I totally blame the doctors though as I was usually there for something else entirely and I would sort of throw in the old "I'm tired all the time" problem at the end of the visit. Stupidly I would also add my own excuses as to why that was (like I've got a new baby so that's probably why!). Stupid on my part but I guess I just didn't want to be labelled as a hypochondriac by always complained about stuff but turning out to be fine with blood tests. The other problem would be that we've moved a few times so have had a bunch of different family doctors over the years too. So no one really got to see a pattern. Oh, and some of my doctors had a one problem per visit policy which made me feel like I couldn't complain about everything all at once! I gave up on trying to figure out why I'm tired about 7 years ago or so as I just assumed this was normal somehow. I can remember thinking that it would be nice if all my symptoms could be explained by one thing. It's not like I wanted something wrong but I just wanted something, anything to explain why I felt different somehow. People do tend to think you're crazy if you tell that somehow exercise is harder for you even though the doctors tell you you're normal! Over the years I did try googling my symptoms but with such a wide range of issues from the breathing, heart racing, stomach problems, gastro issues there was just too many possibilities! I also have reflex which the doctors had misdiagnosed for about 8 years as post nasal drip. I finally pushed and pushed for something to be done and it turns out after they did an endoscopy that I have bad reflex. I never had heartburn just the feeling of lumps in my throat and constant spitting to clear it (sorry to much info!). My latest doctor picked up on my real problem (pots) on our first visit. I had complained about having pains in my neck, which didn't seem to concern him, but he was interested when I told him my pulse always shot up quickly when I was on the cross trainer and stayed that way. I then took the opportunity to mention the almost fainting episodes and my previous fainting years ago. He checked out my heart and my murmur (not a surprise) and then did the pulse and blood pressure. Then he did what no one else had done before and that was check by bp when I stood up. I am so thankful he did that! He had me wear one of those finger things and lay down for a couple minutes and then sit, and then stand. He was surprised at what it did and though we should do more tests. So he did the holter monitor, which picked up the inappropriate sinus tachycardia and palpitations and it matched all of the symptoms I had jotted down in the log. I can't tell you how relieved I was to finally see proof of how I'd been feeling for the past decade or so! He also did a ECG and Echo and told me he was pretty sure they'd be normal. Then he sent me to the cardiologist to see what was up. This is where I was told I had pots. No tilt table, he just looked at the tests and checked my blood pressure sitting and standing and said there'd been a drop in the blood pressure and that I had pots. He said there was medication but that it was best to try increasing the salt intake first. I've tried adding as much salt as possible to my diet but haven't really noticed any changed. If anything I still seem worse than a few months ago so I think I'm ready to try something else. I'm going to try and get in to my family doctor next week and see where we go from here. I suspect he knows at least something about pots if he was able to pick up on the change in heart rate when standing and he's at least listening to me so we'll see how he handles me now! That's it for my story. Hope it helps some one out there. I've been lurking on this board for the past month or so getting a feel for it and I think it's a great place

I would definitely say I'm used to POTS. I was just diagnosed last month although the cardiologist said based on my history I've liked been this way since I was about 16 (so only about 15 years or so!). My case would be more on the mild side as I can still function fairly normal even if I do feel like crap. I have fainted a couple of times over the last 15 years but it is still pretty rare for me, although I do get lots of pre-syncope episodes. I gave up trying to figure out what was wrong with me about 10 years ago. The doctors just kept telling me I was fine and after they checked out my heart (ECG & Echo) I started to believe them. I always felt that how I felt was not normal but when they can't find anything wrong with you it's easy to just push those thoughts to the back of your mind. In some ways it's probably been a good thing that I hadn't known when I was younger as I just pushed through it and kept trying to do everything I always did. I kept playing hockey (ice hockey) and managed to play competitively too despite the fact that I always felt as though I were dying and had zero energy while I played. I love to play but every time I went out on the ice it felt as though it was a tremendous effort. To everyone else I looked fine although they thought my fitness levels were terrible (now I know why!). I can remember crying sometimes on my way home from hockey because it was so hard that I wanted to quit. But then I would tell myself that I was being silly thinking exercise was harder for me somehow so I just stuck with it and kept playing even though it felt awful. Day to day life has been about the same too. I never really mentioned much of this to my husband because I didn't have anything to explain why I felt so crappy. I knew that eventually everyone would get sick of listening to me when the doctors told me I was fine. So I learned to continue doing things when I was tired or my heart was going crazy because as the doctors said "there was nothing wrong with me." I learned when a wave of dizziness would pass, or when it was so bad that I needed to either sit down or faint. Most of the time no one would have known, and so my every day life seemed to be normal at least to everyone else. Anyway, just had to add all that! I was relieved to find this forum and had to answer this topic because the original poster just summed up how I felt.

I voted gained weight, but given that I've likely had pots for 15 years now (since I was 16) it makes it a bit tough to answer. First off I probably gained 30-40 pounds when I started university, which happens to be when I had a really bad time with pots. I couldn't blame it all on that though as eating cafeteria food all the time and stopping all the sports I played in high school didn't help either. Then I grew up, got married, had two kids and packed on a bit more weight. So I would say some of it is pots related as I can't exercise like I used to and have no energy, and the rest would just be lifestyle. Even still I have never managed to lose weight even when I've had times where I've felt better.