Bendopnea, positional ortho statis (POTS) and dead leg kind of feeling

[Jonathan_C]

Hi - recently I posted about feeling vertigo when I rise from bending down. Thanks for the comments. The descriptions of bendopnea and POTS fit my symptoms - AS WELL AS the advice given on how to better manage it (rise slowly and breath).

Yesterday I bent down to pick up my (now late) ailing dog to move her from the sun to the shade. She weighed about 35kg and was not cooperative (she was in a lot of pain). I carried her about 3 metres at most, but it was enough to cause me to completely lose my breath - AND give me this dead leg feeling (very similar to when you sit on a chair and the blood flow is restricted and the leg feels like its, well, dead).

It lasted about 30 seconds - and I had to shake it (my leg) off like Tay-Tay before I could walk normally.

I have randomly experienced (or what seems like its random) that dead leg feeling recently - but this is the first time I could link it directly to an event.

I am 49, in persistent a-fib - fit enough to pick up a 35kg dog to move it, but not fit enough to run around the garden with her on my shoulders.

Can anyone relate?

I can believe there is a low blood pressure / high heart rate triggered by the exertion explanation to this.

[CDreamer]

Yep, had PoTS most of my life - you learn tricks. I suggest you read and follow the advice from these websites and ask to have a Tilt Table test.

potsuk.org

heartrhythmalliance.org/sta...

I had a period of time when I was very bad as I couldn’t even lift my head from a pillow without syncope. There are tricks you learn such as crouching and straining as if you are on the toilet, ensure you are well hydrated - all of the time and take enough salt in your diet. There is very little research on the root cause but I seem to remember that there was a Prof in Canada doing some a few years ago and there is Dr Boon Lim in London.

drboonlim.co.uk

Look at the Living with Series produced by AA - I remember seeing a few videos by Dr Boon Lin.

Hope that helps.

[Jonathan_C in reply to CDreamer]

Thanks FYI - my browser stopped me from opening the potsuk.org link due to security's concerns

I will discuss this tilt table test with my EP when I next see him

[CDreamer in reply to Jonathan_C]

It will be because you attempting access outside of the UK. The AA site is an international one so you should have better luck with that one. Maybe search and see if there is a Canadian organisation?

[CDreamer]

PS - it is an Autonomic Nervous System in appropriate response.

[Buffafly]

Please get the ‘dead leg’ feeling checked out as it could be unrelated to your other problems, as in a trapped nerve or temporary circulation blockage - only going on personal experience.

[Jonathan_C in reply to Buffafly]

a nerve trapped in a muscle knot is definitely a plausible explanation

many thanks

[mjames1]

Hi Jonathan,

re: Bendopnea -- have they ruled out heart failure?

POTS is a possibility but it can be rabbit hole diagnosis. What about your persistent afib and your meds, causing these symptons. Have you tried rhythm control with anti-arrythmics? What about ablation?

FWIW I doubt if 1 in 100 people -- afib or no afib -- could "run around the garden with (35kg dog) on my shoulders". You may have a very high bar

JIm

[Jonathan_C in reply to mjames1]

James I am South African, that is the bar we set for ourselves to qualify for a place in front of the TV for the RWC quarter finals.

Thanks for these comments - I have had 5 cardioversions, 2 ablations and tried a few different anti-arrhythmics and they haven't worked. The only meds I am are on anti-coagulants.

[mjames1 in reply to Jonathan_C]

LOL. Yes, I have friends in SA and the fitness standards are from a different planet.

Sounds like you've tried a lot and I assume since you're not on rate drugs, your afib is with a normal heart rate. So not sure how much of a burden that is to you -- but if inclined, a surgical ablation like MInimaze has proved successful when meds and catheter ablations have failed.

You didn't mention any cardiac tests. Have you had a recent echo to rule out SOB from cardiac issues.

Jim

[Jonathan_C in reply to mjames1]

Both of my ablations were surgical and I had a loop recorder implanted at the beginning of August, so am permanently keeping track of how I am doing

These comments are helpful thanks.

[Blearyeyed]

I have P.O.T.S and Chronic Dysautonomia but although I can relate to the dead leg feeling this isn't a symptom I get because of these.It sounds like it could be related to poor circulation and your blood pressure not responding well to pump the blood to and from your lower limbs when you expert yourself or stand up.

This can make things like P.O.T.S feel worse.

But there could be various reasons for it and you should go to discuss it with your GP and have a proper examination.

[PICCASO]

Sounds like syncope like I had , but I'm not a cardiology expert, you need an ECG by the sounds of it , seek help

[Weeloula in reply to PICCASO]

Do you still have syncope? How do you deal with it?