Tests for POTS?

[Downsouthupnorth]

Diagnosis of ME alongside other long term chronic illness. Long term difficulties with breathing, chest can feel painful as if there is a weight on it, get very breathless with heart pounding with activity also same doing no activity even if just lying down it comes on out of nowhere the same symptoms. I feel I cannot get a full breath of air in me. Get very dizzy if moving upwards from bending down to standing sometimes I black out briefly but blacked out and fell a few days ago when moving from crouching to standing. Gp referred me to cardiology query pots as he said I had orthostatic intolerance (bp 102/78 hr 102 standing, bp 114/84 hr 89 sitting -sorry I don’t know what these figures mean) Finally saw cardiologist, felt he really minimised what I was saying and was v dismissive of me in attitude. Said I have low blood pressure so this is causing it, not that he took my blood pressure. He did an echocardiogram that said mild sinus tachycardia and discharged me. Feel still none the wiser, another bad day with symptoms today can’t stand for long and feel I’ve got a concrete block on my chest. Been reading up said it is a tilt test to diagnose pots which I wasn’t offered, not sure to pursue private which is v expensive, or accept it’s prob another symptom of ME. Looking for advice. Thankyou for reading, sorry for the long message, this feels like as short as I could get it with everything that’s happened. Grateful for any advice

Honestly there's not much they can do for POTs other than check it's not a heart problem. I've had it for 15 years, diagnosed by cardiology. I just make sure I stand up slowly. Make sure i get salt in my body.

A tilt test is simplu they do your BP laying down then do it again standing. Not worth paying for.

Agree with pp.
my Dd also takes beta blockers, wears compression socks, has a shower chair etc all to help with the symptoms. She did have a tilt test with a consultant cardiologist and it was useful as it confirmed the diagnosis and the consultant wrote a useful report which details the symptoms and how to manage them. This was essential for her to be awarded extra time in her a level exams and at university. We paid for a private appointment- cardiac mri and consultation as the waiting time on NHS was about a year. She had various tests on the NHS, eg holter monitor and then exercise/stress tests but Dd was only 17 when symptoms started and we just wanted some answers. she had gone from a super healthy teenager who worked as a lifeguard in the holidays and sprinted for a running club to a teenager who could not shower standing up.

I've got ME and PoTS. The PoTS was diagnosed by a cardiologist entirely from the results of an at home "poor man's tilt test" I had done the previous day - (google will tell you how to do it) and print out showing my heart rate for a whole day with huge spikes every time I stood up.

I disagree that there is nothing that can be done for PoTs, I'm on fludrocortisone to increase my blood volume and a slow release beta blocker to reduce the tachycardia. There are other drugs such as Ivabradine and Mestinon that people report have massively helped them, unfortunately I can't take either for various reasons.

Interventions you can do without a prescription include compression (socks, tights or abdominal), electrolytes, lots of salt and raising the head of your bed.

Nearly everyone with ME has some level of orthostatic intolerance, so even without an official PoTS diagnosis treating the symptoms of the OI may help you feel a bit better.

The heart rate and blood pressure readings from your GP are pretty meaningless to diagnose PoTS unless they were taken after a ten minute rest while reclining and then after ten minutes standing up, so I would ignore them.

If you haven't already done so, have a look at the ME Association and PoTS UK, they both have lots of useful info.

That’s how I feel, that I want some answers. I used to be super active and now am pretty much house bound. Took long time to get ME diagnosis about 7 years. I have been reading about dysautonomia and how it links to ME/CFS/POTs

Thanks @AlannaOfTrebond that’s really helpful. Sorry you have ME also

Cardiologist told me POTS is generally diagnosed when your heart rate increases by 30bpm or more on standing and your blood pressure remains static or goes up, not down, so the figures quoted in your op @Downsouthupnorth don't really support that. Doesn't mean you don't have some other kind of orthostatic intolerance though.

When I got my diagnosis I had a 24hour then 7 day ECG and a tilt table test. I first twigged there was something going on when I subscribed to the Visible app which has a heart rate tracker. I mean I knew I felt a bit off just being sat up, and like you I could keep over/black out on standing, but until I had the app I didn't know it was all related to my heart rate. I brought it up with the long covid clinic who referred me on to cardiology.

Compression tights, plenty of fluids and electrolytes help me. I also have inappropriate sinus tachycardia so am on beta blockers. Can still get POTS symptoms but they're not as horrific as starting from a lower baseline.

Thankyou @MassiveOvaryaction I’ve had a look at the visible app it looks good. Has it helped you? I might get this for ME

Visible is great, yep! I thought I was pacing well until I had it. It beeps/notifies you via your phone if your heart rate is too high which is really helpful, warning to sit/lie down sort of thing and rest for a bit. There's an evening tick box questionnaire to record your symptoms with a note section that I use as a diary. And in the morning you tell it how you've slept and with that data plus what you recorded the night before gives you a score for the day, tells you if you need to prioritise rest or are ok to get on with stuff. It records a chart of your heart rate throughout the day and you can 'tag' things so you can work out any problem areas/tasks.

There's a free version of the app which you can use to record symptoms etc and uses your phone camera to detect heart rate/variability but I much prefer the subscription with the minute by minute heart rate.

Message me on here if you decide to go ahead because I can send you a referral code (works out as 1 month free I think). Or if what I've said is clear as mud and you want a better explanation! The Facebook group is really helpful too.

I would be pursuing the POTS investigation, see another cardiologist if you have to (Dr Sanjay Gupta - York Cardiology is amazing, he won't insist on a tilt test if he diagnoses POTS/dysautonomia based on a clinical assessment).

I have hEDS, POTS, MCAS (suspected) and ME/CFS. I went through all sorts of medications before settling on Slow Sodium, Pyridostigmine, Ketotifen and Low Dose Naltroxone. These then allowed me to start (and eventually complete) the Levine Protocol. I've gone from being virtually housebound to being able to work 0.5FTE. My life is still very restricted and I have to pace very carefully to avoid PEM (and I do still have bad crashes) but I finally have my life back. I'm hoping to improve further but I'm constantly reminding myself how lucky I am to have made as much of a recovery as I have.

I would strongly recommend reading up on Low Dose Naltrexone. You can get it prescribed by Dicksons Pharmacy (Google). In the meantime, you can also increase your sodium intake (slow sodium is available to buy over the counter, look online), try class two compression (waist high is best), drink half a litre of water with electrolytes (Normalyte) before getting out of bed in the morning and I agree with the recommendation to use Visible to help you pace.

There's a lot you can do for POTS - don't lose hope!

Hi @CubanTody thankyou for the response and all of the guidance! I have started on low dose naltrexone a while ago and I’m a lot better than I was, the flare ups when things are particularly bad last for days rather than months now so I’ll be unable to get up out of bed for a few days rather than weeks or months which is how I was but I still struggle to maintain any continuity I need to get better at pacing. I’ve looked at visible I think I will go for this, just a bit foggy at the moment so I need to reread to understand how it works properly so I know what I’m doing with it. I still feel ill a lot of the time day to day - virus like, terrible brain fog which I know is ME, headaches and pain , I’m overdoing it even just pottering around the house doing jobs. The pots like symptoms are very disabling. It’s all very depressing to live with. I’ve looked up dr gupta he has great reviews I will arrange to see him online

@CubanTodyare you in the uk? How did you get the mestinon prescribed?

@Downsouthupnorth You're welcome and good luck! Feel free to message me if there's anything I can do to help. Dr Gupta is a fantastic doctor, he'll look after you.

@BreezyBlock - Yes, I'm in the UK. My cardiologist, Dr Sanjay Gupta (York Cardiology) initially prescribed it privately but my NHS surgery refused to give it me on the NHS so I had to pay for it initially. When I eventually made it to the top of Dr Gupta's NHS waiting list (17 months!) they all of a sudden found that, actually, they could prescribe it after all. So now the only medication I have to pay for is the LDN.

Interesting thanks for letting me know. I’m only taking LDN - I can’t get anything else prescribed but I often wondered if that would help.

@BreezyBlock I would strongly recommend making an appointment with Dr Gupta (York Cardiology). I know I sound like a shill but he has genuinely changed my life. His appointments are phone appointments so you don't need to travel to York.

@CubanTodyI took heart at your message! Would any of this advice apply to a 16 year old. We are due to see some specialists now but I’m trying to educate myself so I can help as much as possible to support my DC. We’ve seen a sudden decline in recent months.

@Lelivre I would definitely recommend you make her an appointment with Dr Gupta. I can't comment specifically as I'm not medical but he definitely treats under 18s. Good luck, there is definitely hope with POTS!

Also would recommend paying privately to see a pots specialist. I was at risk of losing my job I had been off sick for so long when I saw one. Diagnosed pots from measuring my heart rate sitting down and then at 2 min intervals for 10 minutes when standing. Had a rise of around 70bpm. Prescribed me ivabradine and my life turned around. Went back to work 4 months later and doing great now. Will probably always have mild pots (am also very hypermobile) but needed that medication to get me over the massive flare up that Covid caused. I took it for 18 months and then came off of it.