u/GlitteringRefuse3773

I’m right at the beginning of my diagnostic journey and I feel so helpless and lost.

I spent 12 hours in A&E yesterday due to feeling surges of adrenaline, intermittent palpitations and yesterday waking up in the morning covered in sweat with a hr of 103. They did a standard ECG (normal) and bloods (normal) and said I should go via my GP to arrange a holter monitor, and that was it, over 12 hours.

Unfortunately, the NHS waitlist for cardiology and even holter monitor is seemingly nearly a year and I don’t have any confidence I will be taken seriously at that point anyway.

Frustratingly because I already take Propranonol for anxiety I think it also masks the fact that I do have high bp and I do have a high hr even at rest, and as much as I was trying to hold off taking my propranonol yesterday (I take 20mg 4x daily) everything was taking so long that I eventually had to take it and ofc it would be 1-1.5 hrs after taking it that they would decide to take my bp again and say “good news your bp and resting hr are fine”.

They obviously didn’t do any active stand testing at A&E but during my active stand testing at home every time my hr still goes up by 30-40bpm and stays there. My systolic bp tends to go up initially (from 120 to 144 after standing for 1 minute) then settles around 110 for minutes 2, 3, 4 etc, and my diastolic doesn’t change much at all. Anaemia, thyroid etc all ruled out.

I don’t have health insurance and I don’t have much money at all.

I am thinking this seems more closely aligned to hyper pots (?) so in particular I’m interested in dr’s that have knowledge in this area where bp is high alongside pots symptoms.

So my questions are:

1. I am not asking for diagnosis but for those of you diagnosed with hyper pots, am I thinking along the right lines in terms of potential hyper pots or am I completely off the mark?

2. If you could afford to have only 1-2 private consultations with any dr in the UK, who would it be and why?

🙏🙏🙏🙏

I started on 18mg and went up super slowly. Started experiencing adrenaline surges and chest “flutters” once I got upto about 65mg, but not so bad, and everything online said it can take a long time to adjust to this medication. Next dose was 85mg which was my “therapeutic dose”. Those symptoms just got worse.

I reached out to my clinician to ask for permission to stop the medication, but she was taking a long time to reply, and everything online said it was safe to quit atomoxetine cold turkey.

So I did.

But, that was two weeks ago, and these surges and flutters are just not going away.

Anyone else experience this even after stopping the medication? If so, did it ever go away? How long did it last?

I started on 18mg and went up super slowly. Started experiencing adrenaline surges and chest “flutters” once I got upto about 65mg, but not so bad, and everything online said it can take a long time to adjust to this medication. Next dose was 85mg which was my “therapeutic dose”. Those symptoms just got worse.

I reached out to my clinician to ask for permission to stop the medication, but she was taking a long time to reply, and everything online said it was safe to quit atomoxetine cold turkey.

So I did.

But, that was two weeks ago, and these surges and flutters are just not going away.

Anyone else experience this even after stopping the medication? If so, did it ever go away? How long did it last?

For those of you who’s blood pressure runs on the higher end, do you still find compression garments and salt loading helpful? I know it’s the most common advice on here but a lot of people with POTS seem to have lower-end BP and I’m just wondering about the experiences of those of you with higher-end BP, what do you find most helpful for your symptoms?

Hey guys! Does anyone have any tracking templates at all? Specifically in terms of what might be helpful to show a doctor. I really struggle with interoception and I also have ADHD so I need to come up with a system that is simple enough that I’m more likely to stick to it and actually input the data without just getting overwhelmed / forgetting / avoiding etc 😩

My lightheadedness and somewhat breathlessness calms down when I lie down and my HR certainly starts dropping, but I still just feel fatigued even while lying down.

What is everyone else’s experience of that?

I am really struggling to figure out if I have PEM or not because I feel like I’ve been constantly exhausted for pretty much as long as I can remember (34 now). It’s so hard to know the cause or where it started because during my lifetime I’ve had various surgeries (emergency appendectomy around 2007, laparoscopic cholecystectomy around 2008 - 2009, and deviated septum surgery Nov 2025), two untreated concussions (around 2016 and 2020), two bouts of COVID (despite being vaccinated), several bouts of norovirus, and more recently I had many stomach bugs while recently travelling in Indonesia and Philippines in 2024/2025 (needed hospital IV’s for two instances).

I am able to do things but I just feel constantly exhausted, and I struggle to think clearly (which is actually in stark contrast to when I was younger as I was a straight A student, very quick witted etc).

All of my bloods are normal (iron, b12, thyroid etc). I think I do have POTS (or atleast my at home tilt table tests have all fitted the criteria). But while lying down makes lightheadedness go away and perhaps breathlessness, lying down or even sleeping doesn’t reduce my feeling of just being exhausted.

I don’t know if I’ve been at a mild level (and maybe in rolling PEM) for my whole life but I really struggle with interoception.

Other symptoms include:
- Cold hands
- Seem to get very cold especially second half of the day and struggle to get warm again
- Occasional pins and needles in hands / feet
- Frequent “flutter” / surge feeling in my chest that leaves me feeling ‘wired’ (as though I’m full of adrenaline) and yet simultaneously exhausted
- Chronic bloating
- Ongoing abdominal issues (In Oct and again in Dec 2025 I had episodes (around 3hr each time) of agonising pain in abdomen, the Dec episode was immediately followed by two back-to-back UTI’s in Dec 2025 and Jan 2026
- Occasional feeling of “dripping” on right side (roughly in line with belly button - I don’t have a gallbladder now but poss where my gallbladder used to be?) 
- Gained significant weight around abdomen in recent years (previously all weight would collect around thighs)

I see a lot of people describing PEM and it sounds absolutely horrendous (like physically can’t get out of bed) 💔 but I know there’s varying levels of severity and I’m just wondering what people’s experiences are for mild vs moderate vs severe PEM?

I’ve not seen anyone speak about this so I’m just curious if anyone else experiences it or has any information about it.

I need to do more thorough testing with myself as it’s only something I’ve started clocking recently but it does seem like, for example, if I am standing still in the kitchen, my HR keeps going up, then while I am stirring the pot or moving between counters, my HR starts going down.

Obviously, if I’m properly walking around or going upstairs etc my HR goes up, but mild movement seems to lower it compared to standing still 🤷🏼‍♀️

Is this observation something anyone else has come across or received any information from specialists about?

I wear a Visible band and I take 2x 40mg Propranonol daily which obviously brings my heart rate down loads, which Visible interprets as me not spending many pace points. But I still feel completely exhausted and it still goes up by 30+bpm on standing, just from a lower baseline.

Do you think beta blockers make it look like you are spending less energy than you actually are? Or am I making no sense? 😂