Referred To See Cardiologist - Bit Anxious

[Terrier]

Hi there, apologies in advance for the long post!

I'm a 31 year-old male in the UK who's been suffering from myriad 'mystery symptoms' (waaaaaay too many to list) for the past 12 years, generally attributed to anxiety. I've always felt strongly that it was something causing the anxiety rather than the other way around but then I guess everybody with anxiety does to some extent!

I came across POTS a couple of years ago during one of those Google marathons you tend to do when you're feeling particularly bad and thought 'that really sounds like me' but didn't particularly pursue it. But recently I noticed the blood pooling in my hands and feet when standing (leading to a pink/white mottled pattern) getting more pronounced and, after demonstrating it to my GP who was quite impressed, I've been referred to see a cardiologist and advised to stop doing the bits and pieces of weight training that I try to struggle through for the time being until I've been seen. I mentioned the changes in BP and HR I tend to have in different positions too and she seemed convinced enough from having a check herself.

I know no-one on here can make a diagnosis or anything so I won't go into listing everything but just felt like I needed a bit of support really, whatever it turns out to be I've a feeling many of you will be able to relate to the situation. I've not been having a great time anxiety-wise lately anyway, having quite a lot of panic attacks, I was making progress but now I feel knocked sideways again with all this.. It's hard to put the symptoms to the back of your mind until the time comes when you feel them all the time, every time you get up or whatever. And living alone you tend to think about things too much and go around in circles which doesn't help!

Anyway, thanks for reading

[Akgirl]

Hi there, I am also 31 and have extreme blood pooling. I was diagnosed with pots among other things. as it sounds like you possibly have as well. But the most important thing to remember is you are NOT alone. I have found a lot of support and encouragement as well as information on this site. Anxiety is hard to deal with! But just remember wether you stress about your potential diagnosis or not it does not change the out come a bit! When testing for pots it's a very black and white test ether you have it or you don't. So stop stressing and enjoy life

[spinner]

I understand your concern. What causes more anxiety, the disease or itself we have here or the mental stress from fear?

I dont want to say "dont worry" and yet youre a younger guy and a cardio referral is a baseline beginning point for many physicians with these kinds of symptoms.

For many with ANS problems they "mimic" other problems just like food allergies "mimic" every other disease.

And the docs have to "rule out" heart problems as a sort of first step procedure. Theyre probably looking to rule out any potential arrythmia/congenital defect.

If youre an extreme weightlifting then your seriously stressing your body/vascular system/various neurological sysstems/ etc.

I personally swim, walk, bike. I gave up tennis 2.5 years ago. Tennis is nothing but a series of explosive sprints followed by rest.

Maybe cut back/eliminate caffeine, MSG, aspartame while youre waiting for these tests. Have you researched the effects of these? Theyre staggering for anyone with even borderline problems.

And MSG is basically in almost everything processed. Caffeine speeds up your heartbeat. Aspartame is a poison that can be digested.

Im sure you'll be ok as they continue seeking out answers. But i'll bet 80 percent of us here have been down the cardiac referral path.

[Terrier]

Thanks for the replies! Anxiety, stress and worry are such useless things but it often doesn't seem to matter how much your rational mind knows that, does it? Funny thing is people always used to comment on how laid back I was but years of struggling with symptoms and trying to figure out what's going have made me a very different person.. It doesn't take much to get the adrenaline going these days unfortunately.

I'm not an extreme weightlifter by any means spinner, it's a pretty casual thing as my main form of exercise (I have trouble keeping weight on so I find it better not to burn extra calories with cardio, though I do a fair bit of walking generally anyway). I'd probably be laughed out of a gym with the amount I do! It's uncomfortable doing even that (and the walking, to be honest) but I do try to push myself.. If I only did what I'm physically comfortable with I don't think I'd do anything much, which obviously wouldn't be good. I'm sure she's right in that I shouldn't push it too hard for a little while though. My diet is pretty good I think, I gave up caffeine a couple of years back due to sleeping problems, it didn't make much difference but not a bad thing to have given up regardless.

I don't think there's anything wrong with my heart per se as I recently had an EKG done, as well as an X-ray, and they said they looked fine. I'm guessing it's more whatever controls all that stuff, which is obviously what lead me back here. Hopefully they'll be able to shed some light on it either way.

I think it's just that I'm struggling to keep my mind off it in the meantime since the symptoms are so constant and in your face. I'd previously managed to semi-ignore some of them (to a degree, at least) but when you see a concerned doctor it tends to rub off, I find

[PackersFan]

Hey Terrier,

We're both new here. I'm 31 and male as well. I also try and lift a couple times a week to put on some size. I'm interested in the symptoms that you're having. I've been dealing with the 'mystery symptoms' for years and was just recently diagnosed with 'dysautonomia'. These symptoms such and are such a pain. Today I'm dealing with the unexplained feeling of collapsing but my BP and heart rate are fine. So I took some anxiety meds because the frustration of feeling crappy makes me wanna punch something.

So if you don't mind- I'd be interested in hearing your list of symptoms.

Thanks

[corina]

Hi Terrier, welcome to the forum! Hope that knowing that you're not alone will lift some weight off of you!

[spinner]

Thanks for the replies! Anxiety, stress and worry are such useless things but it often doesn't seem to matter how much your rational mind knows that, does it? Funny thing is people always used to comment on how laid back I was but years of struggling with symptoms and trying to figure out what's going have made me a very different person.. It doesn't take much to get the adrenaline going these days unfortunately.

I'm not an extreme weightlifter by any means spinner, it's a pretty casual thing as my main form of exercise (I have trouble keeping weight on so I find it better not to burn extra calories with cardio, though I do a fair bit of walking generally anyway). I'd probably be laughed out of a gym with the amount I do! It's uncomfortable doing even that (and the walking, to be honest) but I do try to push myself.. If I only did what I'm physically comfortable with I don't think I'd do anything much, which obviously wouldn't be good. I'm sure she's right in that I shouldn't push it too hard for a little while though. My diet is pretty good I think, I gave up caffeine a couple of years back due to sleeping problems, it didn't make much difference but not a bad thing to have given up regardless.

I don't think there's anything wrong with my heart per se as I recently had an EKG done, as well as an X-ray, and they said they looked fine. I'm guessing it's more whatever controls all that stuff, which is obviously what lead me back here. Hopefully they'll be able to shed some light on it either way.

I think it's just that I'm struggling to keep my mind off it in the meantime since the symptoms are so constant and in your face. I'd previously managed to semi-ignore some of them (to a degree, at least) but when you see a concerned doctor it tends to rub off, I find

Sounds smart, if you do anything I think mainly aerobic would be best. Im not sure the goal of gaining weight is going to be all that helpful. You simply want to be toned, and eat a smart diet--your body will find its own weight---why mess with it? Swimming by the way it almost a MIRACULOUS activity related to ANS disorder. THe anti gravity alongside the rythmic breathing and the core body temp cooling are completely unbeatable. You might want to take a week and swim at a moderate pace building up to 45 minutes if you can and see if you dont feel the best you do all day every day in that pool. I do.

Edited July 24, 2013 by corina
medical advice

[Terrier]

Thanks for the welcome everyone

Yeah, I'm not particularly looking to put on more weight. It's just that a couple of years back I realised I was coming up to 30 and still weighed 135lbs standing at 6'2" so I felt I had to put some on really. I'm up around 155lbs now but if I don't eat to the point of discomfort every day it just drops straight off.. In fact sometimes it drops off even doing that! I was diagnosed with Crohn's earlier in the year too (though without the typical symptoms) so it'd be best if I didn't lose any weight really. Obviously it's better to keep it on as muscle rather than fat, hence the weights, though I wouldn't say I look very toned despite the effort.. I haven't got the energy to put into it for it to see dramatic changes that way.

You asked for it, PackersFan .. I'll keep it to the ones that seem relevant based on what little I've read of this stuff (the Wikipedia article on POTS mainly):

Resting HR goes from around 70 supine to over 100 when stood (generally not much over, but over)

Resting BP has been as low as 80/55 before but is always much higher (though 'normal') when taken by doctors etc.

Hands going pink with mottled white spots when standing, feet not looking amazing either

Constant fatigue, aching muscles, exercise intolerance (improving physical fitness doesn't seem to make much difference to it)

I've gradually got much much paler over the years

General feeling of lightheadedness and being 'out of it', with occasional periods where I get very dizzy especially after exercise

Always thirsty even though I religiously drink at least two litres a day (probably twice that with our current weather over here!)

Very sensitive to temperature (always either colder or hotter than everyone else), sweat a lot when I never used to and often get cold and/or tingling extremeties

Constant, intrusive tinnitus as well as seemingly progressive high-frequency hearing loss (may not be related to all this)

Tension headaches

Problems sleeping

Tenderness in the skin (it's been suggested that I might have fibromyalgia by more than one doctor, though the tender points aren't quite the same)

Visual issues (whole vision seems to be covered with floaters all the time, what I've seen called 'visual snow' elsewhere)

Gastro symptoms (mainly bloating)

Sudden intolerance to alcohol started a few years ago, seems to take up to a week for me to recover if I drink much (I don't at all anymore)

On the mental side:

Anxiety/panic attacks

Depersonalisation/derealisation

Brain fog/poor concentration etc.

Maybe a bit of depression (not surprising given this long list!)

I think that's probably about it! I'd been feeling fatigued for a while in my teens despite being incredibly fit (I used to play football/soccer for hours every day) then suddenly a lot of the above hit me like a truck all at once. Some of the other symptoms came on over time or became more apparent.

[looneymom]

Welcome to the forum. You are not alone with your symptoms. My son has pooling in his legs and sometimes his hands. It sounds like, you also do some exercise. Try to keep this up if you can, exercise can help with POTS symptoms. Just be sure to listen to your body and not over do it. Many POTS patients are exercise intolerant. If you can exercise 3-4 times a week, you really are helping your body to stay in a more functional state.

[dpeeps]

When I was referred to the cardiologist last year he reviewed my medical history and saw that I had gone to the urgent care about 9 months prior with blood pooling in my feet (for some reason it only happens to my feet, not my hands). He saw that over the course of a month, I had been referred to many docs including a rheumatologist who ruled out a lot of stuff and sent me for a Reynaud's test, which was negative. Anyway, my cardiologist saw that and after a LOT more questions, he said "I think you may have POTS". I had never heard of POTS before, but I was back to his office a week later for a TTT which was off the charts positive.

[Guest Hanice]

Welcome! My blood pools in my abdomen! I would love to hear all your symptoms! Even the ones you havent mentioned here!

[Terrier]

I think that's probably about it to be honest Hanice, it's enough for me anyway! There are some other smaller, more anecdotal things but I imagine they're related to the ones I've listed. For example when I go to have blood taken for testing (as I've had to regularly since starting the Crohn's medication a couple of months ago) if I go straight in to have it done after having walked up to the hospital I quite often go faint afterwards. If there are people in front of me when I get there and I sit down to wait, giving my body time to 'settle' then I'm always fine. Just stuff like that that you'd sound silly bringing up to a doctor but that suggests to you that something's out of whack somewhere.

It sounds silly but on the one hand I'm worried now that a doctor has seen there's an issue of some kind but at the same time I'm relieved that this pooling and stuff I've just been trying to ignore and put down to my imagination has been recognised in some way. I just hope the cardiologist knows his stuff and can give me an answer of some sort.. The worst thing is when you get the 'it's just one of those things' treatment.

[Guest Hanice]

I can tell you what I did, I called every electrophysiologist in my surrounding area (google maps) until I found one that actually HAD diagnosed someone with pots. I found it better just to call first and ask because if not it would just be a waste of my time!

[Terrier]

Sounds like a good plan . I'm in the UK so we get who we're given unfortunately, but I'm very grateful to have an NHS at all so I won't complain about that.

Quick update, I ended up in my local A&E yesterday as I'd been having constant skipped heatbeats all day which is something I can't say I've ever experienced before. When they hooked me up my heartbeat was irregular to say the least. They did some tests and they think my heart itself is in good shape so advised me to try and ignore it (easier said than done!) until my cardiology appointment comes through and hopefully we'll be able to shed some light on the whole thing.

Really hope it's not too much of a wait as it was tough keeping the anxiety side of things in check without that adding to things!

[Terrier]

Hi everyone, just had my cardiology appointment and it seems like I got 'lucky'.. If being told you have a condition after 12+ years of being told 'it's all in your head' can be seen as being lucky!

The guy said he was pretty sure just based on my GP's letter that I had POTS but seeing me, my age and my tall, skinny build pretty much confirmed it before measuring my heart rate and whatnot. So yeah, it's good to finally have an answer of sorts and it's nice to feel that you've seen someone who actually gets it all.

Head's spinning a little at the moment (I hadn't been sleeping much in nervous anticipation of the appointment) so I'm just gonna let it sink in a little bit before doing more reading up and seeing where I go from there.

He's recommended upping my salt intake and going on beta blockers but having asthma is a bit of a complication with that that they have to think about first.. It doesn't affect me much at all so it may well be that I'll get the go-ahead with those but we'll wait and see.

[Chaos]

"Congratulations" always seems odd to say when someone gets a diagnosis of POTS and yet, it always seems somehow appropriate when you have been feeling bad for all these years and now FINALLY have an answer as to why. So congrats on getting a diagnosis, although I'm sorry you have it as it's not a fun one to have.

Nice seeing a doc who understands and knows what to do hopefully. Really hope they can find a good treatment plan for you that gives you some relief.

Crohn's and POTS both doesn't sound like fun. Did your doc say anything about if you might have an auto-immune form of POTS? Once you have one auto-immune disease, it seems you are more likely to have others.

[Chaos]

Double post, not sure why....

Edited September 10, 2013 by Chaos

[Terrier]

Thanks Chaos, I know what you mean . I came out of there with a weird mixture of feelings but there's definitely some relief and vindication in there, as much as you don't exactly want a condition like this. A little bit of anger and bitterness towards some of the more condescending doctors I've seen over the past decade-plus but I imagine that's normal too!

I don't know how much he knew about POTS exactly but I was pleased he knew of it at least. I had a lot of questions but obviously they have other patients to see so you're in and out fairly quickly. He did seem pretty set that beta blockers are the main thing for this but reading around it seems like there are a lot of possible options so I don't know if that's exactly true. Having asthma maybe I'll be better trying some of the other options first? I'll talk to my GP about that I guess, I imagine she'll have a read about the whole thing herself as she's very good like that.

Yes, it's been an especially tough year with the Crohn's diagnosis too and it now makes sense why I had such a hard time on the steroids for that. I do wonder if the two things might be in some way linked though as you probably saw from my other topic.. Just because it seems to have been quite a strange case of Crohn's that I had.

[Chaos]

Yes, when I got my POTS diagnosis I wanted to go back to all the condescending arrogant docs who dismissed me as "depressed" or "anxious" and shove it in their faces. Unfortunately over here in the US I'd have to pay them again to see them and it wasn't worth the cost. lol

I think "strange cases" are what we are all about, isn't it? In fact, when I saw an immunologist in January he said I was "fairly typical" for what he sees in his practice and I nearly fell out of my chair. Haven't EVER had a doctor tell me that before....even the POTS docs have said I was somewhat atypical. When you're "odd" for an "odd" disease...you start to get a complex after awhile.