Greyhound

Don't know why the text went larger halfway through my post lol

Womble, I'm so sorry - I didn't see your post until yesterday (and I was too exhausted to post yesterday). I enormously appreciate the time and effort you put into it and it would have been of comfort had I seen it before. I just wanted to post that I had a second tilt test yesterday (private, not NHS). Too tired to say much other than I finally have a confirmed diagnosis of PoTS. My HR was 93 supine, 150 after tilting, and it then remained around 140 for the rest of the test. That's all for now - exhausted! Big thanks to everyone who helped and advised.

Hello all, I had a second tilt test yesterday. To tired to say much other than I finally have a confirmed diagnosis of PoTS. My HR was 93 supine, 150 after tilting, and it then remained around 140 for the rest of the test. Just a quick thanks to everyone. That's all for now - exhausted!

Thanks. It showed up in the morning but then went away again. Argh! Maybe tomorrow. I wish such waste in the NHS could be dealt with - so sad because it affects so many people

Panic over today as I'm back in tachy mode (never thought I'd be pleased about that lol) Yeah I'm very grateful for it existing (much rather this that the US system) but it's not what it used to be I'd be happy to pay more NI if it meant bringing the system back to how it used it be.

I hope so, thanks.

I couldn't wait any longer on the NHS (I love the NHS but it's now so underfunded) so I booked to go private (although not a PoTS specialist as it turned out he was too expensive). I booked the consultation on Monday and saw the consultant this morning. He said he thinks my tilt test was interpreted wrongly and he thinks I have PoTS but he wanted me to have a 7-day ECG. So now I have this little recording device stuck to my chest and it's costing me £400 so I'm desperate for it to record my tachycardia...but yesterday and today, after a fortnight of particularly crippling PoTS, guess what...my body decides it's time to have one of its rare non-PoTSy phases. I could cry.

Note how in the table I've posted a picture of above it says '(if ?POTS)' next to the 10 minute reading as if that's the only reading in the whole of the upright part of the tilt test that tells you if you have POTS.

Thanks for your replies. They seemed to say it's normal, yes. They said: 'She has longstanding symptoms of chronic fatigue but there was concern about the posibility of postural orthostatic tachycardia syndrome. [...] This [the tilt test] demonstrated a normal haemodynamic response to tilting and no diagnostic features of POTS. [...] Unfortunately we have not demonstrated a cardiac contribution to her symptoms. [...] I am discharging her back to your [the GP's] care.' No further consultations, no recommendations of further tests, no questioning the blood pressure, no mention of the heart rate being very high. Nothing.

I'm naturally a really active person and have had to give so much up over the years. I'd love to go back to doing taekwondo, hillwalking, cycling, etc. Couldnt even ride my motorbike much when I had it because just walking to and from the bike in heavy gear and carrying the chain lock made me feel dizzy, sick, exhausted, etc.

Yeah

An example of when I feel really bad: This evening I had been standing doing washing up (either I stand and feel bad or use my arms above chest level and feel bad so it's easier just to stand), putting away clothes, etc. and was feeling gradually worse as usual but then felt suddenly very bad as I often do - pounding chest, dizzy, nauseous, faint, heavy, etc. Normally I'd rush to sit or lie down but I grabbed the HR monitor. It gave a reading of 100/81, 138bpm. I then lay down and it gave a reading of 120/71, 64bpm. That's over TWICE the heart rate, just doing light household chores. That's surely not normal?

Yeah, they kept me talking and moving almost right up until I was tilted. How is that supposed to give an accurate reading? I know what you mean - I wish they could see how I struggle I have to use a wheelchair otherwise I get so fatigued I need to stay in bed. How can this be normal? I don't think it's CFS though because I can go out for hours - even round the park - if I'm sitting down (I can still overdo it but I won't be half as fatigued as from simply standing).

Hello all again. They've sent me the data from the TTT. Here it is. 109 is NOT my normal resting heart rate - it's normally between 65 and 85. I'm so angry this wasn't done properly. I think I've lost my job now because I can't wait another 8 months for another test. I'm so angry and upset. Also, could anyone please tell me if they have had blood pressure readings like this in a TTT? Because I don't really know anything about blood pressure.

Hello all again. They've sent me the data from the TTT. Here it is. 109 is NOT my normal resting heart rate - it's normally between 65 and 85. I'm so angry this wasn't done properly. I think I've lost my job now because I can't wait another 8 months for another test. I'm so angry and upset.

I'm in the UK. Had my TTT which I know has to have been positive (too tired to explain how I know right now, just trust me!) but received a letter saying it found 'no diagnostic features' of PoTS. I'm desperately trying to get them to send me the data so I can question this.

Thanks x

Thanks for your message. I have no idea whether they can give the raw data. I hope they can. I try to move as much as I can without fatiguing myself too much. It's why I got a lightweight rigid manual chair. When I was using my mobility scooter more, I found that not moving enough would make me tired so my manual chair helps me balance activity and sitting down. If I stand or walk places, I just can't function.

I wouldn't even be certain the cardiologist you see will know about PoTS. The first one I saw didn't seem to know about it but he did order a TTT anyway and the one who interpreted my TTT results (after the test) has just sent me a letter saying I don't have PoTS even though my pulse started racing as soon as the table was raised and I know from doing my own tests that it raised more than 30BPM

I'm going to try but can't speak to anyone until Monday at the earliest. And then trying to get hold of someone who's allowed to discuss the results with you...I just don't see that happening. I'm convinced they're going to either fob me off or tell me I need to wait months more for another appointment just to discuss the results (I waited 7 months for the TTT and it's taken another half a month just to receive the results letter).

The thing is, although I do get lightheaded, especially if I do anything with my arms at or above chest height, my worst symptom is the fatigue, yet I don't think it's CFS because I can do a lot more sitting down than I can standing and in fact my fatigue seems more linked to standing than activity level. So I was completely wiped out after the TTT, yet I can go for a wheel in the park for an hour and not be too bad (although I do get some fatigue from exercise - it's just not half as bad as the fatigue from simply standing). I'm thinking that the consultant just thought 'she didn't faint, therefore no PoTS' but surely the HR was clearly not right?

Nope, they won't prescribe anything because as far as they're concerned nothing's wrong with me.

Thanks so much for your reply. That's what I thought about the pelvic floor exercises. I was like what the heck?! I've been waiting over seven months now and I'm desperate to get back to work. I'm so frustrated that I won't be able to talk to the doctor until Monday at the earliest. If they still insist it's not PoTS I'll be at my wit's end. Re your last sentence, try what, sorry?

'No diagnostic features of PoTS' - what 'diagnostic features'? There's ONE criterion!!!

This is SO RIDICULOUS. I'm literally using a WHEELCHAIR because my heart rate goes too high when I stand up and I feel so exhausted etc. I was literally in bed the two days after the TTT because I was so exhausted. I can sometimes barely lift my arms to arrange things on a TABLE without pain and exhaustion and lightheadedness (yet I can propel my wheelchair because my arms are below my chest (the wheelchair is a lightweight, rigid one)). There's ONE criterion for PoTS (the 30BPM rise) and I CANNOT see how my racing heart during the test was not 30BPM+ more than when lying down - I could even tell them when it was 8 mins into the test, I was so familiar with the pattern of tachycardia from my own tests. But apparently, the tachycardia, chest pain, etc. is normal. WHAT??? WHAT THE HECK am I supposed to do now? These symptoms are NOT NORMAL. So angry and frustrated I can't cope. Picture of letter attached.