Terrier

I'm assuming this is kind of the flipside of the standing tachycardia but I've not seen it mentioned anywhere so figured I'd ask if it's normal with POTS? It's always particularly noticeable if I just stand up for a second to do something then go straight back to sitting. When I get dizzy it quite often seems to be from sitting rather than standing too, like if I've been on my feet for a while and I get home and relax it's quite often then that my head starts to spin a bit. Anyone else?

A lot of healthy people get motion sickness and whatnot from first-person games, especially ones as fast-paced as Call of Duty. I know some have luck with changing the FoV (field of view) in the settings if that's available there.. Often if it isn't it's possible to adjust it in other ways on the PC at least (editing .ini files etc.) I play a fair amount of Battlefield and I don't really have any dizziness or anything with it but sometimes it's a bit too intense, especially if I've not slept much or I'm having a bit of an anxious time!

Yeah, this was one of those things I searched for on being diagnosed with POTS on the off chance it was related and I found a few other people who'd had similar issues. My teeth had always been perfect (my father is in his 60s and has never even had a filling and my sister who's 38 is the same so my genes are pretty good this way!) but over the past few years so much enamel has disappeared, leaving them looking quite yellow because of the dentine being more exposed. I've had to have quite a few fillings too. The dentists I saw were baffled as to the reason.. The best I could come up with was being on amitriptyline for a while as that gives you a very dry mouth but I guess now it seems more likely that it's down to POTS causing the same.

I've actually noticed this once or twice myself recently. This summer where I live in the North of England we had a few heavy, sudden storms come in on otherwise very nice days and I'd feel very 'off' as the weather was changing, sort of an 'on edge', anxious kind of feeling with a bit of lightheadedness thrown in. Difficult to describe but very noticeable! I did a search on here after my preliminary diagnosis and was glad to see it wasn't just me being weird

My own experience of Prednisone definitely seems in contrast to many here! After being ill for a while at the start of the year, eventually to be diagnosed with Crohn's, I was put on 40mg tapering down over a couple of months. I know Prednisone can temporarily make people feel energised and motivated but for me that couple of months (and a fair while afterwards) was like one continuous and very intense panic attack. I've got a fair bit of experience with anxiety (to say the least) but this was on a whole new level, it was as though my body had a bountiful, never-ending supply of adrenaline constantly being pumped into it. After my preliminary POTS diagnosis last month I figured the problems I had on it seemed fairly logical, I would've thought medications that can bump your heart rate up and mess with your BP would be problematic with POTS (especially since it seems to make people more sensitive to medications as well) so I'm surprised to see some do well with it, as great as that is! The Prednisone did at least clear up the Crohn's flare and now I'm on Azathioprine for the foreseeable future.. I've had no ill effects from it so far (barring the expected ones that come with a suppressed immune system) but I don't feel better in a general way on it either so I'll have to assume it's not interacting with the POTS-y side of things at all thus far.

Funny this topic should have been made so recently - I just searched the forum to see if anyone else had dental issues and if they might be POTS-related! My father is 61 and he's never had a filling nor anything done to his teeth whatsoever.. Dentists think he's some sort of freak. My sister is 38 and she's the same. I was too until I started feeling generally unwell and since that time my teeth have degenerated very quickly indeed to the point where the last dentist I saw said after doing several fillings that I won't have any enamel left at all in twenty years if they keep going at the same rate. My teeth are very yellow because of the lack of enamel which isn't great for the old confidence. My best guess is that it's from the constant dry mouth.. For the last few years I've drunk around two litres of fluids a day but I'm still always thirsty. Not sure what more I can do really.

Thanks Chaos, sounds very up in the air as I guess a lot of stuff is with more obscure conditions like this. I'm getting the impression that having finally got a diagnosis the next thing is to try and determine your sub-type of POTS if at all possible (I guess it's probably very difficult in most cases) to give you a better idea of what treatments might be more worthwhile? Not sure how you go about that or who exactly you're supposed to see, I'll search around and see if there happens to be anyone who really specialises in this area somewhere relatively close by I guess.

31, symptoms started around 15/16 I guess but the real trouble started at 19. I do remember having a bad virus around the time of my first vague symptoms.. It stuck in my mind because I couldn't get out of bed so I read The Bell Jar by Sylvia Plath cover to cover - I think that's the only time I've ever done that with a novel and it was instantly a favourite of mine! I don't know if that was mono though, I can't remember missing more than a day or two of school with it.

You've reminded me there Joann, although I think I look kind of ill people generally seem to think I look much younger than I am. I'm 31 and still get asked for ID to buy alcohol most of the time which I guess is probably pretty unusual for a guy. It's funny when I feel like such an old man! I once read Junky by William Burroughs and there's a section in that that I always remembered, he had this theory that addicts back then looked much younger than their years because their bodies were constantly under stress, going through crashes and recoveries, and that actually had some sort of regenerative effect on them. Sounds counterintuitive but maybe there's a grain of truth in there somewhere.

I look sick to me and maybe to people who've known me a really long time. I've got paler and paler over the years and my skin is a real mess up close, this with someone who got through their teenage years basically trouble-free that way! I guess a stranger maybe wouldn't pick me out on the street as an 'ill-looking person' but they definitely wouldn't pick me out as an especially healthy-looking one either.

Ha, don't apologise Chaos! Thanks for the response. Just trying to get all this as straight as I can in my own mind really, I was curious as to whether anyone here might've had similar issues. The cardiologist was aware of my probable Crohn's diagnosis but he didn't mention a possible relationship there, I guess I'll have to remember that question for him next time. Hypothetically, if it was autoimmune POTS might the stuff I'm on (Azathioprine/Imuran) actually help?

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.

Hi there, having just been told by a cardiologist that he thinks I have POTS it made me wonder about a diagnosis of Crohn's disease that I had earlier in the year. My symptoms were quite unusual (general flu-y feeling, VERY high fever and a sickly feeling deep in the stomach but no bowel issues whatsoever) which meant it took a while for them to diagnose me and even then they didn't seem 100% about it. They said with the amount of inflammation and ulceration they could see in there I should've had much more 'classic' symptoms. I had a hellish course of steroids which cleared it and am now on immunosuppressants long-term (they weren't sure whether or not to put me on them and basically left it up to me). Only thing now is that I'm wondering if POTS could've somehow been the culprit? I imagine it probably accounts for the long-term IBS I've had. It's very possible that it could be Crohn's as my father has had bouts of it and there are autoimmune issues on my mother's side too but obviously this has put a further potential doubt in my mind and made me wonder if I'm on the right track taking such strong medication for it. I'll mention it to my GI when I next see him in a couple of months anyway but I can't imagine he'll be too up on POTS since it seems relatively obscure. If anyone has any input it would be greatly appreciated.

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.

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!

I haven't been diagnosed with POTS or anything beyond anxiety thus far but this has been something I've struggled with over the years so I thought I'd chime in. I used to be able to drink a lot (I'm in the UK and we have a strong tendency towards doing this!) I had a pretty high tolerance while drinking and didn't really suffer much the next day either. I'm not sure I ever really had a proper hangover the way other people describe them, no headaches or extreme fuzziness or anything like that. Then a couple of years into having health problems I suddenly found that while the actual drinking part wasn't much different I seemed to be having trouble afterwards, still not what I would understand as a hangover but if I drunk a fair bit it would really flatten me for a couple of days. It actually felt more like a drug 'comedown' than anything else. Over time it got to the point where if I drunk a decent amount I could still feel the effects of it even a week later, almost as if I just couldn't get it out of my system properly or something. I'd really feel like the living dead (moreso than usual!) and could easily spend hours sunk into the sofa just staring at the wall or whatever. Pure, horrible flatness. Needless to say I don't drink anymore!

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.

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): 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.

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

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