Does anyone get heart palpitations? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Does anyone get heart palpitations?

AMDP profile image
AMDP
22 Replies

Does anyone get heart palpitations? I get them just after I fall asleep and they wake me up.

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AMDP profile image
AMDP
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22 Replies

Yep

AMDP profile image
AMDP in reply to

😢😱

EOLHPC profile image
EOLHPC

Yes, when i lie down for my daily nap too, and during syncope flares (these happen more frequently daily when my autoimmune diseases are flaring)

AMDP profile image
AMDP in reply toEOLHPC

😱😢

Yes, often when I lie down for the night. I'm not sure if I feel them more then, or if there are more.

I think there is more to be learned about the scleroderma heart!

AMDP profile image
AMDP in reply to

😢😱

Wengc profile image
Wengc

I've started to get them over the last month. . Not lying down, sometimes when I'm sitting....i'm also a bit breathless. Haven't had them before now and unsure about it 😕

AMDP profile image
AMDP

Yes they are a worry aren't they. I shall talk to my Drs

Wengc profile image
Wengc

Yes, me too....hope it goes well for you....

dordle profile image
dordle

Had the same with some breathlessness when walking up slopes/stairs. Referred to cardiac Dr who diagnosed Atria Fibrillation, not associated with Scleroderma. Often causes irregular/fast heartbeat.

dordle profile image
dordle

Atrial sorry!

fairy56 profile image
fairy56

Hello, yep, I also get them after I have woken up!!! and I get shaky too! As for breathlessness I get that just by having a shower, oh what a multitude of symptoms we get, never ceases to amaze me, actually what we are all doing is working our way through the medical dictionary, haha, take care xx

AMDP profile image
AMDP in reply tofairy56

Yes indeed. it is all very confusing.

frillyhilly profile image
frillyhilly

Yes. I've had them at night for a long time bu have always considered them to be caused by the Amitryptiline. However, more recently I've been getting them when I "nod off" during the day - I am tired at the moment - don't seem to be able to get a good nights sleep - so I've been wondering if it's the palpatations are being made worse by the hot weather and/or by being tired. I have primary raynaud's.

AMDP profile image
AMDP in reply tofrillyhilly

It’s such a worry isn’t it.

frillyhilly profile image
frillyhilly in reply toAMDP

Yes. If I am already deeply asleep when it happens, I also feel light-headed, sometimes sick, and just feel "out of myself". This helps me:

1) I tell myself it's just (I say "just???") palpitations. Also, that there is no intruder that has set my heart racing.

2) I just move a little - like settling down. I find moving my head is particularly helpful.

3) I then take some slow breaths, not deep but controlled, and try to see myself somewhere peaceful - in my mind I have a forest walk leading to a waterfall and pool.

4) Usually I will quickly relax and fall back asleep.

If I do not fall asleep but instead still feel from "out of sorts" to "very worried", then I may have to get up (sitting up may be enough, but I cannot sit in bed). It seems to be all about change so that the mind can normalise the body. This is what I do:

1) I move properly in the bed - changing positions fully. I usually move into a position from which I can get out of bed.

2) Again control my breathing if possible and calm my mind.

3) If it is still not working, I get up and move slowly about with a walking aid

4) If this is still not enough to settle myself, then I get a hot drink (oh for the simple days of a glass of tap water).

It's a bit like recovering from a bad nightmare.

I hope this helps you too.

I have a reason for my palpatations (my medication - I checked with my GP). However, I remind the GP periodically just in case they want to change their mind about them. xx

AMDP profile image
AMDP in reply tofrillyhilly

Thank you so much for taking the time to explain all that to me, it is very kind and I really do appreciate it.

Of course my worry is that it is Sclerodema doing its thing. I am seeing my specialist in a few weeks so will mention it to him.

Thanks again Axx

frillyhilly profile image
frillyhilly in reply toAMDP

Glad to help.

Wishing you a good appointment , N xx

Ncoff profile image
Ncoff

Yes I do I’ve been referred to cardiologist for further tests after being told I gave a leaking valve but need to check for further blockages in arteries

AMDP profile image
AMDP in reply toNcoff

Thanks Ncoff. I hope you are ok. AX

Lupiknits profile image
Lupiknits

Yes I do, especially after eating. I know there isn't anything to be concerned about in my case though. I've recently been rushed to hospital by my GP a few times as a result of very low potassium levels in my blood. Each time they've done an ecg because of the possibility of heart failure. All fine

AMDP profile image
AMDP in reply toLupiknits

Thanks for your reply. I wish you well. Ax

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