Palpitations: Does anyone else get... - Vasculitis UK

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Palpitations

yorkshiregirl44 profile image
15 Replies

Does anyone else get palpitations,i find them really scary. I also take Levo for thyroid disease and reduced my meds and they almost stopped. Now they are back again and was wondering if there could be another reason for them,not related to thyroid.

Thanks

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yorkshiregirl44 profile image
yorkshiregirl44
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15 Replies
PMRpro profile image
PMRpro

I had palpitations - which my GP was totally uninterested in, told me to call 999 if I was worried! In fairness they can't tell much unless they "see" them happening and the fastest way to get an ECG is from a paramedic! Once or twice though I really did feel quite ill for 10 or 15 minutes - but by then I was taking pred and I (like the doctor) put it down to pred.

However, a couple of years ago, after another complicated problem, I was diagnosed as having atrial fibrillation and put onto medication to control it as it was very bad at the time. I've never had any feeling of palpitations since - must have been occasional attacks of atrial fibrillation!

It is fairly common in middle-aged and older women anyway. Some autoimmune illnesses can cause it/make it worse and the doctors here think it was the autoimmune part of my large vessel vasculitis that probably caused the damage and it was getting worse.

But I think the main thing I learned then was that pred gets blamed for a lot of things it isn't guilty of! No doubt we make a lot of assumptions about what causes things - have you asked your GP what they think?

yorkshiregirl44 profile image
yorkshiregirl44 in reply to PMRpro

Thanks...i had an ecg which showed i had some irregular heartbeats,itwas for 24 hours. Now the doctor is arranging an ecg for 3 days.

I thought it was the levo for thyroid because when i lowered my dose they seemed to go...but back again.

I panic when they happen and feel very hot,i get the fluttering every so often as well.

PMRpro profile image
PMRpro in reply to yorkshiregirl44

Yup, sounds very like me - and you have an on the ball doc! One friend of mine was admitted to A&E with a heart rate of over 200, a/f was diagnosed and she was sent home with low dose aspirin! That isn't quite enough! The on-call consultant wasn't cardio trained.

I was about to leave hospital after something else - all dressed and ready to go and they wouldn't let leave. I had to stay until they decided why and how best to treat it and the anticoagulant therapy was right - this is in Italy though.

yorkshiregirl44 profile image
yorkshiregirl44 in reply to PMRpro

Its good you have it sorted. Its so distressing when it happens. Maybe my next ecg will show more of the palps and i maybe will get some treatment.

tracey65 profile image
tracey65 in reply to PMRpro

yes i had palpitations and was addmitted to hospital once because my oxygen level was so low i could hardly breath.they had to restart the hear with a drug which is not nice feeling and if that didnt work then i was going to have to have heart shocked thank god after 2 doses of this drug it worked.i finaly ended up with surgery for a heart aplation it has done the trick.i was told this had nothing to do with my vasculitis.it is a scary experience hope you get it sorted

yorkshiregirl44 profile image
yorkshiregirl44 in reply to tracey65

I hope i do to.....dont know the cause of mine yet but hope endo will take me seriously.

yorkshiregirl44 profile image
yorkshiregirl44 in reply to yorkshiregirl44

I meant to say rheumy...but i do see endo with thyroid problems.

ShortSarah profile image
ShortSarah

Hello - I suffer the same thing and I also get 'surges' - it feels like a wave goes through me - but at first I wasn't listened to either and was told it was prob a side effect of other meds.

Recently, I have moved my care over to Addenbrookes - I told them about it and I have since had ECGs, echoes and a 24hr trace and it turns out I have a "stretched heart valve" which has been caused by inflammation (from Vas) which in turn causes all the palpitations and everything. Now my cardiologist (Dr Rusk who is ace) has ordered an MRI and has decided to put me on betablockers to ensure no further damage is done. I am just waiting for correct dosage and then I will start taking them - and I really hope they get rid of the palpitations coz I find them kinda scary too!

My advice: keep bugging your dr and I hope they help you soon. Also, panic doesn't help (as it causes your heart to race) so perhaps try meditation or yoga to calm yourself down (it helps me sometimes but I am a hippy at heart!)

Hope this helps x

PMRpro profile image
PMRpro in reply to ShortSarah

"Surges" - that's an interesting description. Have they offered an explanation for them? All along I have had a sensation like being punched in the solar plexus and followed by a hot flush shortly afterwards. I also occasionally get a feeling as if electric shocks are running down my legs - most peculiar!

I'm on a betablocker, an angiotensin II inhibitor and an antiarrytthmic which seems to keep everything in order. The first choice cardiac drug brought me out in a mega rash that itched like mad and spread slowly down my arms - no sleep! After 5 days a different doc believed me how horrendous it was and I was switched to the second line option given by the chief cardiologist in the main hospital. All gone rash!

I really do get annoyed when things are dismissed as "side effects" - even if it is a side effect it needs investigating! Two years ago I had "side effects" from 4 different drugs. One could have killed me, after the second time my husband took less than 5 mins to discover via google that tachycardia was a known if uncommon effect of the iv valium I was being given for another problem - I declined further goes!

yorkshiregirl44 profile image
yorkshiregirl44 in reply to ShortSarah

Thanks.... its good to know there are some doctors who will try and find a solution. Im seeing endo in next few weeks so hope i get some answers.

cruznlcsw profile image
cruznlcsw

I also have palpitations, and I am seeing a cardiologist. He told me that he can help me, and I will be okay. Some of the vasculitis diseases I have read can cause heart palpitations. So check with your doctor today. Hope this helps.

pinktiger53 profile image
pinktiger53

I have no idea if your conditions are relevant. I do know some meds can be cause tho your info leaflets should make that clear. I have episodes of palpitations - have done for years - can be caused by stress - ( suprise!! Lol!) . I notice I get them a lot more if I have been holding back from crying quite a bit. I even had 24 hr heart monitor etc. all clear. They are unpleasant and even frightening - especially if I have a very long episode or repeated episodes. Can go on for weeks. Hormone changes especially during menopause can also trigger. Now after reading these replies I am wondering if something less obvious is behind mine. I have had a host of symptoms during the time I have had the suspect maybe vasculitis symptoms - maybe all connected after all - if it isn't med side effects being blamed for everything it is stress!

rrahman profile image
rrahman

I used to but thyey seemed to have fizzled out. But I did know for sure that when I did I knew something was wrong im not sure what but I knew my body was reacting to soemthing making me feel unwell.

I hope it gets better but do keep a diary of all these niggly bits it does help to buikd a bigger picture and pattern to things we cant make sense of but know how our body feels.

X

optimist-ok profile image
optimist-ok

I don't know if this will help, but some yrs ago I, too, had quite bad palpitations & they stopped after I had only decaff tea & coffee. This was the solution from my GP & it worked!

BronteM profile image
BronteM

Went to see my GP the other day with a similar problem. I'm already keeping to de-caff coffe at her suggestion, but this time it turned out to be one of my drugs. I've halved my dose of amlodipine and they are much better. Perhaps one of your drugs is interacting with another? She has also booked me for a blood test to check my thyroid levels...I am also taking levothyroxine, and that can give the same problem.

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