Hi... Newbie Here!

[comet555]

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

[corina]

hi comet555, welcome to the forum! you'll find lots of experienced people here who are able and willing to help you find answers to your questions. and thank you for sharing your story, i'm sure there will be people recognize themselves reading it!

corina

[potsgirl]

Hola Comet555,

Welcome to the forum! You'll find others on here that have similar problems and I'm sure you've helped some others with your story. You said your BP dropped when you stood up; but did your heart rate go up by at least 30 points? That's a main criteria for POTS. It your BP is dropping a lot, you may also have orthostatic hypotension/intolerance (OI).)

I started out with heart problems, too, before I was diagnosed with OI/POTS. I was incredibly fatigued, and the area doctors couldn't figure it out, so I went to Mayo Clinic in Scottsdale, AZ. I live within 4 hours of it...They found that I had dilated cardiomyopathy, bradycardia (very low HR), and congestive heart failure. I ended up getting a pace maker and went on Coumadin for atrial fib. Don't be worried, but make sure you keep on top of checking out your heart by a good cardiologist every year or so - especially since it's in your family. Also, if you're not happy with your medical help, many of us on the forum have finally ended up going to one of the Mayo Clinics, Cleveland Clinic, etc. There are lists of doctors and other info on the front page.

Again, welcome. Looking forward to hearing more from you!

Cheers,

Jana/Potsgirl

[Allene]

Hi! I'm new too. It's nice to meet you (: I've found this forum so helpful to me, and I hope you'll find it helpful as well!

[comet555]

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