Apple86

Good morning Potsies, I hope everyone is having a (relatively) good week thus far. I've received a letter, from the cardiologist at the hospital, revealing my cardiac test results. The problem is I'm not seeing my specialist for another six weeks and part of the letter has made me anxious. Is it normal for PoTS patients to have calcification of the heart (aortic valve in my case)? I'm only 32 and I read that this normally only happens with older people or due to lifestyle factors; I've exercised rigorously all my life and I eat a healthy diet (albeit I used to have anorexia). Do my results look "normal" for PoTS patients? Thank you.

I’m new to PoTS but have found the fatigue really crippling. Today has been a sleeping day: I’ve only been awake for about 6 hours all day! I’m a student so it’s OK for me to do this from time to time. But I’ve also been worried that the fatigue is something other than PoTS. I’ve been quite anxious that I’ve got something life threatening which hasn’t been detected as sometimes my whole body and mind hurt from the tiredness. I think, however, this may be my anxiety talking!

Hey Winter. How long were you on the treadmill for? My heart was 120 before I even started walking so I didn’t have much to go until I reached my max HR of 189. It’s since taken me two hours plus a beta blocker to get my HR back to normal when lying down.

Hi everyone, I’ve searched the forum and can’t find anything on this topic. I was wondering what experiences people have had doing a treadmill stress test? I’ve just come back from the hospital having done one. I lasted about 12 minutes on the treadmill and had just broken into a jog before they had to stop my test as my HR was at it’s max. As soon as they slowed the treadmill down I fainted! Apparently it was because my BP dropped as I slowed down. Otherwise BP and heart rhythm were fine. How far did you guys get to on he treadmill? Did you faint? Thanks, P

Hi Amy, I also have anxiety/panic disorder and I'm going through the process of being diagnosed with PoTS. I've been on the SSRI Citalopram since March - my doctor prescribed it because they thought my PoTS was just more anxiety. At the same time, and for the same reason, I was prescribed Propranolol (beta blocker). I was told that the two medicines would balance out my BP as Propranolol would bring it down (slightly) but the SSRI would RAISE it. I've just had a 24-hour monitor and my BP is on the lower side of NORMAL with the two medications, so I believe they're working really well. Which SSRI did you try? Different ones can affect people differently, so it may be that you could try a different one? I know Sertraline is another SSRI that some of my friends have been on for anxiety and they said it's worked well. Also, how long were you on the SSRI for? I felt SO much worse for the first 5 weeks before they started to kick in and I haven't had a panic attack since. Some people come off them too early because of the initial side effects. I wish you all the best x

I’ve had bouts of BPPV twice. The first time it lasted 4 weeks and the second time was just 24-hours. But I know someone who has it longer-term so it could be this. Do you get the vertigo feeling when you’re standing up and you move your head upwards or downwards? This is very common. I also got it when lying down and putting my head on the left side. I’d have to grab hold of something as I felt like I was on a boat - it was really scary. You can be sure it’s BPPV if you try to remain in the same position for up to a minute when the vertigo starts - if it’s BPPV the vertigo will subside within a minute or so. It’s caused by tiny crystals in your ear canals coming lose and moving around. The doctors can perform a manoeuvre to ease it. I found that by sleeping on the opposite side to the one which was causing the vertigo made my BPPV bouts subside. I assume this is because the ear crystals moved back into the place they are meant to be. Anyway, if it is BPPV I wish you all the luck as vertigo is just horrid.

StayAtHomeMom, I was wondering what you class as "way high" HR? I'm trying to figure out when I need to stop what I'm doing and lie down or when it's OK/safe to push on through. I tend to get worried and change what I'm doing if my HR exceeds 100 sitting and 110 standing (bearing in mind I take beta blockers daily). It's been hitting these levels quite a lot recently due to the hot weather. Thanks xx

Thanks everyone for your informative responses. I'm going to go and buy a measuring tape so that I can purchase the correct sized tights. I haven't been told what type of PoTS I have: is it still OK for me to try the tights? I don't have any other medical conditions and I'm not actually sure what my blood pressure does when I'm standing. I've bought a pulse oximeter too. These medical supply companies must love us PoTSies! xx

Hi everyone. I’m currently going through the diagnosis stages of PoTS. I’m waiting to see my specialist consultant (NHS England), Dr Gall, but the waiting list is until next March! I’ve seen a cardiologist registrar who is sending me for lots of tests beforehand. However, I forgot to ask him advice on compression stockings. I’m pretty sure I need these as my legs go very purple when I’m vertical and static (see picture). What size/pressure stockings are recommended? I have very thin legs! Kindest regards, P

Hi Haenir, I've had severe health anxiety all of my life and so when my PoTS symptoms started (aged 31) I had a massive mental health breakdown and couldn't leave the house because I was fearful of everything and everyone, and I was convinced death was close. I was definitely existing in a non-reality - it was beyond scary. Now, six months later, I'm back to more positive mental health due to an SSRI called Citalopram. It doesn't work for everyone and it does take a while to feel the full effects, but if it does work then it's a life changer. I started noticing the real effects about five weeks after starting it. I started at 10mg and then went up to 20mg after the first two weeks (if I had started on 20mg I would have felt the positive effects sooner). If you can, go and speak to your doctor about it. Sertraline is another SSRI, which works in a similar way to Citalopram. I'm currently awaiting my TTT (knowing that I have PoTS) but my anxiety around it is so diminished by the SSRI. Without it, I would probably still be living in terror everyday. xx

Thanks jklass. I seem to be OK when my HR goes low. It often goes to 50 when I'm sitting down due to the beta blocker. But before my PoTS started I always had a low resting HR of around 58 as I was so physically active. I've got a BP monitor and a pulse oximeter. I've had severe health anxiety for most of my life so I've got all the gadgets! Even with daily health anxiety it still came as a shock when I realised there was actually something wrong with me. It's basically my lifelong worst nightmare - being told I've probably got a chronic disease that people don't know much about. But at the moment I'm quite high functioning as, with the beta blockers, I'm still able to get around and do some gentle exercise. I'm just hoping I'm not progressive (my new worst nightmare!).

Oh wow, I didn't even realise all these types of beta blockers existed! I've clearly got a long way to go! I have no idea what my BP is doing when I stand up but I know it's in the healthy zone when I'm seated. I haven't fainted in my life so I assume my BP is OK even when I'm on Propranolol and my heart is forced into going slower. I do wonder why, if my heart needs to go faster to maintain blood flow to my head and heart, I'm not fainting or having a stroke/heart attack when my heart is forced to go slower with betas? Surely this would mean not enough blood is getting to my head and heart? I have so many questions to ask and waiting to see a cardiologist is torture and everyday I'm convinced I'm going to die.

Thanks for your comments. It's interesting to hear that Propranolol should be taken multiple times per day. When my doctor prescribed it for anxiety she recommended 2x 40mg tablets per day. But that was making my heart very slow when sitting (as obviously it wasn't anxiety). So I decreased to 2x 20mg, which seemed to work best. But then I read a journal article suggesting that Propranolol tends to be most effective for PoTS at a lower dose: 10mg-20mg per day. So I reduced to 20mg in the morning only. I'm worried to go back to 2x 20mg as I know I'll soon have to wean off them for my tilt table test. But I know this dose is best for me. Does that sound like a high dose? I can't really ask my doctor for advice as she doesn't know much about PoTS at all and seems to want to pass the buck on to the cardiologist. So I've got another 3 weeks of worry ahead!

Hi everyone. I'm yet to be officially diagnosed with PoTS, although multiple stand tests suggest it is PoTS. I'm currently waiting for my first cardiology appointment, which is in 3 weeks: the NHS is England is slow! In the meantime I'm taking Propranolol to control my heart rate. My doctor prescribed this for anxiety before she realised that I probably have PoTS! I've been taking it for 4 months now and have tried various doses. At the moment I'm on 20mg per day, which keeps my standing heart rate below 100 for most of the day but wears off into the evening and my heart rate can then go above 100 but below 120. As I'm not being guided, I'm not sure whether to increase my dose to help me over the next 3 weeks? What dose of Propranolol or other beta blockers do you guys take? Best wishes.