POTs? / advice / anyone else similar?

[Jackle88]

Hi all,

(from the UK, male in my early thirties)

I've been suffering for a very long time with dizziness (pre syncope), fast recovery blackouts whilst standing / seated- the blackouts happen very quick and last for seconds - they don't happen often and have only happened when sitting down which is very scary for me.

Lots of other symptoms such as fatigue, brain fog, never refreshed from sleep, intolerance to excercise, especially legs e.g squats (out of breath, light headed). Cannot go walking without a large spike in HR from my base 115~.

I cannot stand being stood up for a while as my legs get heavy full and my heart is pounding.

I have occasional and situational feelings of light headedness when getting up from seated or after kneeling/bending over.

When I feel the wave of lightheadedness come on I sweat, short of breath and then it passes after a few minutes or so.

I've been through the wash several times with Drs and NHS and private consultants. I've had echos, ecgs, 7 day private monitor, blood pressure 24hr, 2 24hr tapes. Nothing shown apart from a "fast heart" as one cardiologist put it, but they never did anything for me or diagnosis.

I got given Ivabradine 2.5mg this year and it has helped only slightly with the tachycardia.

My personal research had lead me to believe POTs for a long time but no one seemed to give that diagnosis and kept saying anxiety when I knew it wasn't.

I've only just after living with this for 13yrs of my life had a Tilt Table Test yesterday and fighting for it.

I asked the people recording the results for the thirty minutes and my HR was consistently above 115bpm, when my resting is usually around 60-75.

I asked saying this is most likely POTs? But I got told I didn't have a high enough "spike" in HR. Which I believe is a load of rubbish and this is a classic 30+ bpm increase, sustained for the whole tilt table test duration.

Anyone have any thoughts on the results?

I'm waiting on a cardiologist to view the results but I feel like there's another battle for the correct diagnosis again, as I feel that if the technician was dismissive, will the cardiologist be as well!!

It's hard to live with not knowing what's causing me to feel faint randomly stood up or not.

I feel I've been poorly looked after and my Drs just aren't acknowledging the fact I am unwell on a daily basis from all of this.

[heatherevans28]

I'm so sorry you are going through this. I would wait and see what the doctor actually says before you panic, as technicians cannot interpret them with your medical history. It might not be pots but hopefully it'll give you an idea of what's going on. Having blackouts when seated is quite unusual with POTs but not impossible. It might be why you're having such a hard time with diagnosis though.

Have you done active stand tests at home with a proper BP monitor or did the doctor do one? Did the results clearly show the sustained spike on standing (not before)? If yes to both, then personally I would work on the basis that you do have at least some form of dysautonomia no matter what comes of the tilt table so that you can focus on getting some quality of life back. I was stuck on waiting lists for a long time so did a series of active stand tests at home, saw clearly what was going on and then focused on managing it.

I appreciate the desire for a formal diagnosis and in the end my consultant gave me the choice of whether I even wanted mine by the time I saw him. I chose to have it so I do get it, but it was a serious consideration. My quality of life had improved to a considerable degree.

Who prescribed your medication? It's one of the ones commonly used for POTS and other dysautonomia which is very useful for many people and so I'm glad it's helping even a bit. After medication it's all about the really challenging lifestyle management. It takes time but you will get there.

All the best xx

[Jackle88 in reply to heatherevans28]

Hey, thank you for your reply!

I've done sitting and standing tests etc only found the HR spikes when standing and suddenly drops down when seated. Only a very slight change in bp that's about it.

The HR is sustained when upright but only reduces when sat down.

The last cardiologist prescribed the medication for me saying it would help to address the tachycardia. it has helped but I wish I could have it completely removed so I can do excercise etc without feeling unwell.

I'm just waiting for the cardiologist to respond now so I'm hoping it gets me a diagnosis.

[heatherevans28 in reply to Jackle88]

I would recommend you follow the active standing guidelines on the POTS UK website. You should go from lying for 10 minutes minutes to immeduqtely standing absolutely still for 10 minutes and then lying again (only taking your BP & HR when it tells you to). There shouldn't be any sitting involved. If you repeat it every day for a week that should tell you what is going on. It's only the heart rate that matters for a pots diagnosis but the BP helps to see if something else is also going on with your blood pressure at the same time.

Fingers crossed with your cardiologist xx

[TracyAdmin Partner STARS]

Hi Jackle88 Thank you for your post, I am sorry to read your recent experiences, if you would like support or advice, please contact our Patient Services Team at [e-mail] we are here to help.