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smish

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About smish

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  1. Yep I do. Red blotches which feel hot to touch like sunburn does. They don't itch but they do feel very warm especially if I have clothing over them. I tend to get them more if I have a cold or at that time of the month. I always have them after a bath or shower though.
  2. Just wondering if anyone else gets this. Every few weeks I seem to get a few days where I feel worse and part of it is this feeling in my chest. I don't know if this is just me but for as long as I can remember (way before POTS) if I went out in cold weather for a walk or run, I'd get a funny feeling in my chest/lungs/general breathing area (!) afterwards, and now after getting POTS it seems that I get this feeling on and off even after not doing exercise/being out in the cold. The annoying thing is that I can't even describe the feeling - I just know it feels like I've been out in the cold. It's not really a pain, just a discomfort. Anyone else?
  3. I'm on Bisoprolol now so it's a lot lower (usually around 90-110 standing). Without Bisoprolol, it would probably average 120 standing and I'd start to notice it if it went over 130. Think when you live with POTS for a long time (especially without knowing about it) you do just get used to having a fast heart rate all the time. On my tilt test it went up to 160.
  4. Hey guys I joined the forum at the start of the year, asking for help trying to get a diagnosis. My old GP had refused to believe there was anything wrong with me aside from "not eating enough" which was complete rubbish. I got a new GP who was lovely, showed her the POTS UK factsheet and she referred me to a Cardiologist. I had a few visits to the consultant there, who has been pretty helpful. Today I finally had my tilt test. I came off my Bisoprolol on Sunday in preparation so I was feeling pretty bad already, so combined with nerves my heart rate was fast even lying down. I was worried that there wouldn't be a big enough difference between lying down and standing because it was already so fast. I managed the full 30 mins (longest of my life!) but did feel pretty bad throughout. I asked the nurse afterwards what it had shown, and she said my heart rate had just continued to go up and up until it was doing 160. So from 110 to 160, I think I got the jump I needed for diagnosis. Is it normal for your heart rate to keep going up and up throughout the test? I'm just so happy that someone will actually believe me now! At the start of the year I really didn't think I'd ever get a tilt test, so anyone who's still hanging on looking for a diagnosis - keep going!
  5. Thanks for your replies everyone! I've just got home from my second cardiology appointment. Both 24 hour urine tests were fine so that's good. He was a bit stumped and said "you're a bit of a mystery" so I took out the POTS information I had printed. He seemed to have heard of it but didn't know very much about it and seemed to suggest that the only way to treat it was with beta blockers (I'm already on Propranolol). He has suggested trying Bisoprolol. Anyone had any experience with that?
  6. Hi Chaos, Yes - I have my second Cardiology appointment in a couple of weeks. I'm in the UK. I went back to my GP numerous times and had lots of blood tests and a 24 hour ECG and eventually got referred to Cardiology. At my last appointment they did another ECG and then we just talked about how it all started and they sent me away to have some 24 hour urine tests to rule out Carcinoid Syndrome and Pheochromocytoma. It really didn't seem like they had much of an idea what was up with me though, and POTS was never mentioned even though I said it feels like it's much worse when I'm standing, as well as the fact all my symptoms match POTS, so I'm guessing they haven't heard of it. Just going to have to mention it at the next appointment or I might never get anywhere. I feel like a hypochondriac telling doctors what I think is wrong with me though, haha!
  7. Hey everyone Just curious as to how you were diagnosed - did you have to pretty much diagnose yourself or was it a doctor who spotted what was wrong?
  8. I'd agree with feeling bad standing up after crouching - those shops where they stack all the jeans on low shelves in piles are the worst! Haha. But if I'm just hanging round for a while waiting for something, I'd prefer to be crouched rather than standing still. I used to do yoga classes before I got really ill and I always loved it when we moved on to crouching or sitting positions after being stood up so long. Always thought I was finding it way harder than everyone else and now I know why! I do really wish people knew more about it - I have similar problems with my partner thinking I'm a bit lazy, or not understanding why I'm so puffed out from reaching up for a few seconds to open a high window. People don't see the effect it has 24/7 and most of the time I don't even bother to mention it to them now. Thank god for internet shopping hey!
  9. I think it's very hard for people to understand unless they have read enough about it. I'm still waiting to get a diagnosis of POTS (next cardiology appointment is in September) but from doing my own tests I'm pretty certain it explains everything. This morning my heart rate laying down in bed was 67 - up to 92 on sitting up - and 118 standing. That's on a day where I feel pretty "normal", although I think I've just got used to having a racing heart all the time so unless it's 140+ I don't really notice it. I feel that when I tell people restaurants are difficult for me, they don't really get it. I think my family and boyfriend still kinda think it's just anxiety because they don't understand how sitting can make you feel so bad. While we were on vacation this year and going out for meals every night it was very uncomfortable. One of those nights I just excused myself and went to sit in the car with my feet up because everything felt way too loud and uncomfortable for me. I've always found that I naturally want to sit with my feet up beside me, and that crouching down feels much more comfortable than standing. Anyone else get that?
  10. I find going out to restaurants and the cinema particularly hard and I think it's because they're pretty much the only places I have to sit very upright with legs down for a long period of time. I also find hard chairs in restaurants seem to make things worse. I used to think I was feeling panicky in restaurants but now I think it's just because my heart races and I start to find everything overwhelming.
  11. Hi again, I had the appointment yesterday and although it wasn't terrible, it didn't really help me in any way. I had another ECG, they took my height and weight and then I saw the consultant. He was very nice but doesn't appear to have many ideas about what it could be. He said he would try and get to the bottom of it but that some people just have a high heart rate and have to take beta blockers for the rest of their life. I said I feel like it's worse when I'm standing, worse in hot weather - nothing. His response was "everyone has a reaction to standing up". He's ordered some tests to check adrenaline levels (24 hour urine test) and I'm going back in 3 months when I will take some POTS info with me and ask if it's a possibility. It's like banging your head against a brick wall! Never get anywhere!
  12. Yes, I have a lot of dizziness particularly when shopping, my memory is awful and often the words all come out wrong. I also find restaurants hard work as I feel like I want to slouch down or put my legs up but obviously that's not possible when you're out for a meal! One of my main problems is heat intolerance - I just got back from 2 weeks in Florida and I've always struggled with heat. The GP put me on Propranolol to deal with my tachycardia but nobody knows WHY I'm getting tachycardia. The Propranolol did help with the heat though - without it I was getting a heart rate of 150 standing. I've always found having a shower in the morning an impossible task as they make me feel so ill so when I found out about POTS it was like everything fitted. I've always been sort of "sickly" ever since I was about 12, but everyone just kind of accepted it and I guess I did too. Then in 2011 I got a weird thing where I did a particularly strenuous yoga (of all things!) session, and the next day started feeling terrible and felt totally wiped out - didn't leave the sofa for 2 weeks. After that the face flushing and red blotches started, as well as random bouts of nausea, all sorts of stomach problems and exercise intolerance. Thank you - I've no idea which cardiologist I'm seeing and whether they know anything about POTS. I have done a few tests on myself laying down and then standing and my heart rate is all over the place and definitely affected by standing. Some times it's a definite increase, even increases by about 50bpm, other times just by 20 or so. I'm hoping they catch me on a bad day or they'll think I'm making it up!
  13. Hey guys, I'm in the UK and have been referred by my GP to the cardiology department for "further investigation". Got my first appointment this evening. Anyone know what to expect? The GP doesn't really know what's up with me but POTS seems to fit very well. No fainting, but high heart rate which gets better when I lie down as well as numerous digestive issues, facial flushing and warm red blotches on my skin, tremors etc. Already had an ECG and 24 hour ECG so not sure what to expect from today. Thanks for any advice in advance
  14. Hey everyone I'm awaiting a diagnosis of POTS but would appreciate some help on here since my doctor at the moment is pretty useless but has referred me to the Cardiology dept. (not had the appointment come through yet) I've been taking Propranolol as needed for a few years for tachycardia. I generally just take it when I feel bad, or if I'm on holiday in a hot place to deal with my heart racing in the heat. It's brilliant when I'm on it and I can tolerate exercise much better and generally feel so much calmer (the tachycardia makes me feel anxious). Problem is that I've started to notice that if I take it for a couple of days in a row, I wake up the next day feeling really depressed. I've read a few things which say Atenolol is less likely to make you depressed, but is it gonna be any good for POTS? My GP has never heard of POTS, so I don't think she's gonna be much help! Thanks
  15. Hey everyone. I used to think that feeling ill in restaurants or even just at the pub was an anxiety thing but now I'm starting to think maybe it's all down to POTS (or at least exacerbated by it). I think the fact that you are generally sat very upright in restaurants for a longish period of time might be causing it. Does anyone else experience this? It's hard to explain the feeling, but when I was in the pub last week I found that after an hour or so, I found all the noise uncomfortable and generally felt overwhelmed by everything. My boyfriend and I were messing round with a heart rate app and mine was 108 after an hour of sitting which is fairly high for me.
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