Terrier

Thanks again Pistol , you're probably being very wise here! My problem is always two-fold I suppose, the eternal POTS trouble of trying to hit the 'just enough physical activity' bullseye through what generally feels like pure guesswork, drunk and with a blindfold on, plus being impatient enough that I get one better day and instead of thinking 'This is probably just the first step towards feeling a bit better' going straight to 'This might be the one day this week I can get a gym session in so I'm going to go all-out while I have the chance'. I brought the heating way down closer to where I'd generally have it last night but tried sleeping with some socks on which I can't say I've ever really done before, it actually seemed like a better combination. Something to experiment with I suppose and hopefully I'll turn the corner soon..

Thanks pistol, you're probably right that I'm overdoing it in some ways, as much as I'm basically sat down physically doing very little 80% of the time! I have a lot of trouble balancing trying to stay relatively fit with everything else I have going on since I get very frustrated when I can't exercise (which causes its own problems) and if I only exercised when I felt 'OK'.. I'd never exercise at all! So I sort of suck up the fact that I'll have to write the rest of that day and the next day off completely as a price worth paying but maybe at times doing that a couple of times a week is too much. I still find it really hard to judge all this however much practice I get.. Especially since if I have excess adrenaline flying around exercise seems to be one of the few things that can do a lot to get rid of it. I appreciate I'm fortunate compared to many to be able to exercise at all though. The beginning of this run pretty much coincided with the death of a schoolfriend so I suppose it's possible the stress of that set a flare going, though as may be obvious I have a hard time knowing what a flare actually looks like for me. I think I'm going to go back to basics and get my bedroom environment back to the way I'd usually have it at this time of year even if only to get my bearings a bit. I'll also take your advice of course and try to give myself a bit of an easier time both mentally and physically. Maybe I'll get back into the yoga which I'd dialled down on in favour of spending that energy walking outside.

Hi all, hope everyone is keeping safe and well in these scary times. I haven't posted in a while as I suppose I'd reached a point of things being 'settled' with my POTS, not that I was better (I was still a long way off being able to work etc.) but I just about knew where I stood with it and the midodrine helped somewhat. However for the last few months I've been having an especially tough time with my sleep, which has been my most troublesome issue for many years, and I'm not sure I even know how to try approaching it anymore. I'm feeling a bit desperate, even moreso with current events since I'm already in a bit of a risk group (asthmatic) and being physically even more burned out than usual with this thing going around isn't a nice thought. All my life I've needed cold air in the bedroom to be able to sleep (even as a child you'd sometimes be able to see your breath in my room!) but after struggling to sleep for a while I've ended up turning the radiators on through the winter, which I've never had to do. But I still felt mostly shivery with that, even under thick duvets. At odd other times (sometimes during the same night) I'll feel too hot. This morning I thought to take the temperature under my covers (starting to over-analyse here) and it was 27c/80f which seems crazy hot by my standards yet there I was shivering and not sleeping. So now I'm completely lost not knowing if I need to be warmer or colder and, as is no doubt common among those with our issues, I can't really trust what my body is telling me. I'm feeling cold throughout the day as well even though the house is probably warmer than average, if anything. It's almost like having a fever - feeling warm internally but the skin is cold and you're sat trembling. The flipside is when I feel well enough to do some decent exercise I'll feel like I'm overheating all day and it's basically a guarantee that I won't sleep but that's been the case for years now regardless of how early in the day I do it, having a cool shower afterwards etc. I still feel that 'cold skin' thing with it though, somehow both hot and cold at the same time. Does anybody have any ideas for things I could try? Perhaps something in the diet or certain kinds of exercise? I go for a walk every day and do resistance stuff as mentioned when I can but perhaps more intense cardio might help? Obviously I'm wary of making things worse by overdoing it though. Any thoughts or suggestions more than welcome 🙂

Yeah, I get the big, slow thuds immediately on standing then it steadily starts to rise. Generally get big thuds when sitting down too (and often a PVC to go with it when I'm having bouts of those!)

Thanks both.. Varying replies but at least it sounds like it can improve. Guess I'll stick with it - though the UK winter drawing in isn't likely to help!

Hi all, over the past few months I've been trying MIdodrine - first at 2.5mg then at 5mg and I've just been advised to go up to 7.5mg. They think I might end up on 10mg due to being over 6ft tall and likely having EDS. For the past few months I've often been feeling absolutely chilled to the bone with freezing hands and constant goosebumps.. It tends to come on mid-late afternoon then last more or less for the rest of the day. Stupidly I never thought it might be the Midodrine but finally today had a search on here and saw that it seems to be associated with it a bit. Knowing what it is will probably help stop it nagging at me mentally but I guess my question to anyone who's had similar is, does it tend to improve over time as your body adapts to it? Cheers

Interesting stuff, thanks everyone. I'd assumed that with POTS the HR increase would generally stay around or above a certain level but it seems like that's not necessarily the case.

Thank you both for the replies! That does sound familiar, Katybug. I think the first time this happened it was about a week I had where I felt like it was steady progress, finally getting somewhere then WHAM. No sleep and crazy anxiety. Similar to you there tends to be a delay on it too, I'll feel well enough while I'm pushing myself but then later it hits me in one form or another. Maybe it's a bit like if you're working and you've got an infection or something, you force yourself through the week OK then put your feet up at the weekend at suddenly the full blown illness hits you. I guess it's the temporary lack of standing tachycardia I'm most curious about as I can't remember reading anyone having that in my time occasionally popping in to lurk on here. I still felt pretty awful by 'normal' standards but if I'd had a tilt table done on those days they'd have sent me home POTS-free. Of course when the POTS is acting as it usually does there are better and worse days within that too, but that's only to be expected.

Hi all, I've put off asking about this for a long time as I have an annoying tendency to feel I have to figure everything out on my own, as counter-productive as this often is! I wondered if anyone has similar experiences or any input as to what might be going on. I'll give two examples: A few months back I had a period of about a week where I was doing a litte better than normal in terms of sleep, anxiety etc. Out of curiosity I took my pulse after having been stood for over an hour playing guitar (I try to do this every day in the hope that it might gradually re-train my nervous system and also because playing seated actually feels worse for me in some ways). It was 68. My normal resting heart rate during the day is usually 60s or at times low 70s so this was obviously a bit of a surprise. Same thing the next day. I can't say I really felt different, but yeah, technically no POTS. Since I was sleeping better and doing better anxiety-wise I pushed myself a fair bit one day, went out socialising and felt comfortable enough doing it by my usual standards. However that night I didn't sleep all night and was instantly an absolute quivering wreck the next day with symptoms out the wazoo. Like my nervous system had just gone haywire. POTS 'numbers' were definitely back and I was in the midsts of one of my regular heavy bouts of PVCs (which run on a weirdly tight schedule of their own, something else I've never figured out. Once in this sort of state it tends to be quite a long and difficult road out. Fast forward to this week and again, I was on a slight upswing so out of curiosity took my pulse after standing for an hour or so - 72. And again, after a slightly busier day (though not all that much different to the week or so before) a little bit of a meltdown came. A flurry of PVCs last night, a poor night's sleep and suddenly all my nerves are jangling and I'm full of anxiety. Really shivery and can't get warm despite being blasted by the central heating. I don't know if these are POTS crashes exactly as I've never really figured out what that means to me, the descriptions I've read by others didn't quite fit. I used to wonder if my week-long bouts of PVCs every 4-6 weeks were POTS crashes. Occasionally they'd be precipitated by feeling generally 'urgh' and like I couldn't even muster the energy to get off the couch so I suppose it's possible? It kind of feels like my body will go so far towards improvement then at some arbitrary point yanks it back and says 'No, you must be unwell!' It's incredibly frustrating and makes it so hard to keep your spirits up. I sort of go backwards and forwards between it being an anxiety thing or a POTS thing but really I have no idea so thought I'd put it out there. I have EDS too, in case that sheds any more light on it. Any thoughts most welcome and thanks for reading!

Hi everyone, sorry if this seems like a silly question. Since being diagnosed with POTS a couple of years back and doing a fair bit of reading about the possible causes I've had the suspicion that I've got some EDS kicking around as well. A quick self-test suggested I was at least borderline and today having finally mentioned it to my GP (along with doing a couple of party tricks), she seemed to come to the same sort of 'Hmm, maybe' conclusion and has referred me to see a rheumatologist. Now I'm wondering if I might've been better off continuing to live in ignorance and trying to manage the POTS symptoms as best I can since, as far as I know (and please do correct me if I'm wrong!), there is nothing that can really be done about EDS either way and there's also the danger that having another label flying around in my head might contribute to more anxiety and worry in the long run. On the one hand I have the desire to know but there's another part of me thinking there doesn't really look to be an upside to knowing.. If that makes sense! So is there something I'm missing here? Should I be happy that I'll either find out or rule it out? Any thoughts most welcome

90/60 is pretty normal for me 'at rest' (ie supine, it rises a fair bit to a more 'normal' level on standing and activity) so I've been pretty doubtful so far when two different cardiologists have mentioned beta blockers as the thing to try for POTS. I'm sort of at the point where I wonder if I'll just have to bite the bullet and see how it goes before they'll start being a bit more open to exploring other avenues.

Thanks for the reply Yes these have a different sort of sensation to my 'normal' standing tachycardia. So far I haven't been standing when I've had them either, but that could obviously be entirely coincidental at this point! It's sort of like a PVC followed by a jolt of adrenaline then the tachycardia which peaks quickly then comes down pretty quickly too. The PVC part isn't quite the same feeling as the ones I usually get, but it's about the closest comparison I've got. The guy who came didn't seem too concerned given that I'm reasonably young at 32 and when I first had the POTS diagnosis a year or so back I had an ultrasound done on my heart which was all good. I had a 48 hour monitor done back then too but wasn't gettting the PVCs or anything at the time. Those things are quite strange in themselves, I'll have a week where I'm having them all the time then a month or so off, then a week on again. That cycle's been going for a while now! Got to say I do have my fingers crossed that the cardiologist appointment comes through soon-ish.

Thanks Corina, maybe just 'Sudden heart spikes - SVTs?' Yes, no doubt you're right there - stress makes everything worse! But having spent years trying to figure out if my many and varied issues (most of which began at the same time 13 years ago) have a physical or mental root cause I've finally come to regard the latter as a good probability, having really been incredulous at the possiblity for most of that time given how physical the manifestations are. I guess this is probably a whole other topic though!

Quick update, had a bit of a strange week after this. The day afterwards my heart was skipping all over, anxiety got (very) involved and, being in the house alone at the point it peaked I had to call 999. The guy came who was exactly the right person to turn up really, he'd had heart issues himself and did his degree on the heart so was pretty knowledgeable. He caught a couple of different types of PVCs on the monitor and eventually it did calm down, though I was still a bit of a mess! He thought the spikes the previous day were SVTs and that they'd ideally like to catch one when they happen but I guess they'd have to become more regular before they strap a monitor on for any period. I felt kind of ill all week after this, as if I had a bad cold or something - totally wiped out and anxious, but without anymore noticeable skips or anything. By yesterday I was feeling a lot better, went to bed thinking 'I should be able get back to a more normal day tomorrow' then BANG, another (apparent) SVT. Didn't sleep all that well after being jolted back to alertness by that. Had another one this morning too. I had my TTT to confirm POTS a couple of weeks back (the first cardio I saw did a sort of poor man's version) so presumably I should be getting an appointment to see my cardio at some point, obviously I'll mention these to him. What seems weird is that they've come right when I've been on a little bit of an upswing. And also as I've been looking into long-standing mental issues as a possible cause of my years of symptoms, though I know that's probably a controversial subject on here! I recently noticed that there's a pattern of new things cropping up whenever I start to poke at my subconscious or look too deeply into my past. As I realised this and started looking into it all again I was thinking 'OK, I wonder if it'll throw something new at me this time..' And it seems like I might've got my answer, unfortunately! By the way, I did want to put SVTs in the thread title in case anyone had any insight/reassurance but it doesn't look like you can edit them on here, is that right?

Thanks Katybug, yeah I think maybe just the fact I was rowing full tilt with my HR right up when the PVC came might have jolted more adrenaline in than otherwise would have happened, even though I didn't consciously think a lot of the skip as it occurred. As I say, usually when I'm having an extended bout of PVCs I do still row and it doesn't seem to cause problems, as hard as it can be to ignore. Had a bit of a rough day afterwards with another spike or two but obviously after the first one knocks you anxiety tends to enter the mix and when I think back I do remember a couple of instances where my HR spiked in a disproportionate way to the anxiety I was feeling so perhaps it's not entirely new. Frustrating though, when I woke up feeling alright for me! I will try to get in touch with my cardiologist on Monday but that's always easier said than done with specialists in the UK..

Hi everyone, just looking for a bit of reassurance on this one. I imagine it's probably a POTS 'thing' but it's not one I generally get so a little bit disconcerting and there's still a bit of adrenaline flying around my system after it! Woke up this morning feeling alright (by my standards) and went on the rowing machine as I do pretty much every other day. Was just coming up to my 'warming down' period having done about 40 minutes when I felt a little skip in my chest. I often have bouts of these (though I've not been in the midsts of one at the moment), they've been checked out and apparently there's nothing wrong with my heart so I try to carry on as normal when I get them, as I did here. As I continued rowing I noticed that my heart rate was climbing, very very quickly. Normally the max I can maintain on the rower is about 150 but within maybe 20 seconds of noticing the spike I was up at 180, which basically never happens for me. At this point I panicked a little, stopped, got on the sofa, put my feet up and thankfully it did drop back down. After a couple of minutes I got back on the machine and warmed down as usual, though a bit warily. I can only really think that this has happened once before, where my heart rate climbed to a crazy level for me and it didn't seem to be anxiety-related (though anxiety did come into the mix once it had started!) That time I ended up in the ER and eventually it did drop back down, this was pre-POTS diagnosis though so I didn't go supine and stay that way - perhaps that would've fixed it quicker. Anyone got any ideas what's going on there? As a total layman's guess I wondered if maybe the skip/PVC coming out of the blue might've caused the heart to think it had to compensate for something and go into overtime.

I've had visual snow for 13 years, it came on when all my other symptoms started (including depersonalisation/derealisation which has also been mentioned). It doesn't really vary, it's always there and pretty much the same. It was only a few years ago I found out there were other people with it, before that it was a (fairly unnerving) mystery to me. I also get migraines (with aura, atypical ones etc.) but not as often as my father and sister which seems weird considering they're both very well and I seem to have a variety of issues.

Hi everyone, as increasing exercise (which I've always done a fair amount of anyway, uncomfortable as it is) hasn't affected my symptoms to any noticeable degree I'm starting on the quest to narrow down my subtype so I can figure out how best to approach potential medications and whatnot. Intuitively hyperPOTS has always sounded the most likely to me so that's what I'm looking into first. Google suggests that a rise in blood pressure is one signifier of hyperPOTS so I've tested it out a couple of times. At rest mine has always been pretty low, generally somewhere around 95/65 but often lower than that too. On testing twice (different days) mine has gone from around 90/60 to 120/70 both times within ten minutes, along with the tachycardia of course. Seems a fair jump to me? I think this has long been the case as prior to the POTS diagnosis I always noticed that if I had my BP taken by a nurse or doctor somewhere it was a fair bit higher than if I took it at home, at rest. But then since it was within the normal range and they had nothing to compare it to, nothing was said about it. Once or twice I commented that 120/80 was high by my standards but they never seemed to think much of it. Does this sound like a solid enough justification to ask my GP for some tests? If so, does anyone have any experience of this under the NHS? I'm not even sure if it's something they'll really do. I'm not under a specialist, the cardiologist who diagnosed POTS pretty much just said 'try more exercise, eat more salt (vague, LOL), take a beta-blocker (which, having asthma, I didn't do but I gather this isn't always good with hyperPOTS anyway?)' then he discharged me. I was glad he knew enough to diagnose the POTS but I guess that was probably as far as his knowledge of it went. Thanks

Yes, you'd think it would be. If I had to guess I'd say that my POTS is probably the hyperadrenergic type (I'd love to know how to find out for sure) which would mean something like Prednisolone is unlikely to go down very well. I was told straight off that it pumped adrenaline into you and stood a good chance of causing anxiety but there didn't seem to be a better alternative at the time, unfortunately.

Yeah, my heart rate went fully into constant overdrive and I started getting very dizzy with even the slightest activity (although I've probably had POTS for a long time this was the first time I'd experienced such strong and consistent dizziness). A year on and I'm still not sure I've quite got back on an even keel from it (the dizziness is improved but seems here to stay, at least to some degree), though at least it makes a bit more sense with the hindsight of the POTS diagnosis since we seem to be more sensitive to medications than most.

That's interesting regarding the sweating, prior to what I now know as POTS people used to notice that I didn't really sweat at all, even when playing sports for hours in the summer. Now I sweat and overheat doing very little when it's warm.. And in the winter I can't ever get warm enough! It's fun this thing, isn't it.

Hi everyone, just curious about this one. I've been having a bout of PVCs over the past few days in the warm weather we're having here and trying not to get too anxious about them! It did make me think back to the previous time I had them when I didn't know what they were and ended up rushing to hospital, that was about a year ago and in a short period of warm weather if I recall correctly. They always seem to get more frequent as the day goes on too, reaching a peak in the evening. I always drink loads so I doubt I'm dehydrated but just wondered if there might be some sort of reason for this or if it's just pure coincidence? I guess POTS in general seems to be worse in warm weather so maybe it's just one manifestation of that? Weird that I've probably had POTS well over a decade yet only really had these for the first time last year.

I hadn't seen this before, it sounds very encouraging and would fit in with my general situation since I've got various immune-related issues myself and others still in my immediate family. I'm pretty ignorant on biological matters but would the potential treatments be the same as they are for other autoimmune issues? I take Azathioprine (Imuran) and it hasn't had any effect on my POTS symptoms that I've noticed. I was on Prednisone for a few weeks at one stage (pre-POTS diagnosis) and it actually made my symptoms much worse - it's known for causing tachycardia in itself.

I don't have a problem with storms and stuff from an anxiety point of view but I will say that they seem to make me more symptomatic - POTS-wise - which can then trigger some anxiety. It sounds a bit crazy but I tend to know when a downpour's coming well before it arrives, I'll start feeling a bit 'off' and then the heavens open.

Could be worth getting some ketone testing strips from the pharmacy and seeing what they say. I've been told mine have been elevated once or twice without it really being followed up on or monitored over a period of time, guess they weren't overly concerned about it! I eat low-ish carb but probably not low enough to be in ketosis all the time yet I get a sweet taste in my mouth a lot, especially during and after exercise. It'd be interesting to know how this ties into POTS, if all all.