Really frightening

[Themidget]

Currently experiencing frightening heart palpitations tapering from 15mg.Diagnosed in Nov18 with PMR, currently on 7mg and the lower this dose goes, the worse the palpitations get, mainly when prone in bed. This seems to start any time between 3am and 5am.Mentioned to GP but not interested, so really need some suggestions.

[Dovelady]

Hello TheMidget, I'm surprised your GP is not interested in your palpitations. I was diagnosed with Atrial Fibrillation three years ago, three years after PMR/GCA, after having so called palpitations for a few years. I would persevere with the GP, I was lucky and was able to record my own ecg on a home Kardia device, this was shown to a cardiologist and I am now on the appropriate medication. The most important being anti coagulants. However if you just want to manage your palpitations there are some things you can do to help. A lot of people find sleeping on your right side of benefit, I certainly do. Also sleeping with an extra pillow. Even now if on my left it sets off an episode of AF. Taking drinks of ice cold water can help, as can coughing, I also used to thump my chest. Alcohol can also induce palpitations. But by far it is better to insist that you get it checked, there is a long wait to get a 24 HR or 14 day wearable device on the NHS though. This is why I bought a Kardia recorder. Good luck and I hope some of this might help.

[Themidget in reply to Dovelady]

I will try again next week with the GP. He is generally good, but I think makes the assumption that Pred has side-effects inc increased BP and sometimes AF/Palpitations and it must be one of these nasties. Problem is that it might not be and it needs investigation.

It's harder work that it needs to be to get to the bottom of potentially serious issues and more and more you are left with you own research, you own equipment and DIY Health Care.

Writing our own scripts next-wait for it!!

I am sure you can all relate in parts to this sentiment.

Thanks again.

[Themidget in reply to Dovelady]

Took the advice and attended A&E during an episode. Waited 5mins,much to my surprise and then had a battery of tests(3hrs) which all indicated a healthy heart which was reassuring. Guess it's back to the drawing board to try and identify a cause.

Thanks again to all.

[Hidden in reply to Themidget]

That is reassuring. Glad you went. Pred, chronic illness and a range of daytime worries can manifest as night time anxiety and panic. The witching hours are the ones that i used to wake up in a heart pounding panic. It may not be that for you but it is possible when one is living with uncertainty.🌻

[Themidget in reply to Hidden]

Yea-Since all my checks during an incident proved negative, I may well have to look at the "mind" and what life in general throws at you. I did think that Tapering etc was going too well and was maybe waiting for a bilp!!I've had 2 nights of "perfect " sleep since my latest incident, so just maybe the "mind" has a part to play in this??

[Hidden in reply to Themidget]

Its a powerful thing. I hope your good sleeps continue 🌻

[Dovelady in reply to Themidget]

Unfortunately with Paroxsysmal Atrial Fibrillation when you are not in AF everything does look normal. Were you still having palpitations in A&E?

It's interesting that Edinburgh Royal Infirmary and one other hospital is trialling issuing on loan , Kardia devices to patients presenting with palpitations. In order to see exactly what is going on.

But I'm so glad that your mind had been put at rest though, I hope you have a peaceful Easter now.

[PMRpro Ambassador in reply to Dovelady]

How very sensible.

[Themidget in reply to Dovelady]

Yea was feeling hellish. However when the results came thru, I noticed a marked improvement as the body relaxed. I then had 2 nights of "good" sleep which was great. I am however always conscious that it's a "long race" and thanks you all for your concern and real quality advice.

[PMRpro Ambassador in reply to Themidget]

Was it still going on when you got there? Did you go on your own or call an ambo? As Dovelady says, when it isn't happening everything does look normal and getting a paroxysmal AF diagnosis can be a problem. A few months ago I had something to be seen at home when the ambo arrived but by the time I got to A&E it had settled and looked normal. I have my diagnosis so it was accepted that it was probably the AF and it had "reset" as usual. It is a pest - my episodes last an hour or so usually and it is only when I feel worse than usual or it goes on for longer I even think about A&E but you don't know in advance whether this will be long or short!!!!

[Themidget in reply to PMRpro]

I went to A&E as an episode started so that I could show them the "worst". It was interesting to see that the traces showed No signs of any irregularities. they waited a bit, then repeated the dose-again the same results. Bloods were OK, so conclusion was yet again a wee mystery?

[Dovelady in reply to Themidget]

You might find this of some interest.

It's an extract from an ITV.com news report from last month.

A smartphone device which can be used to detect serious heart conditions should be rolled out to A&E departments across the country, researchers say.

The technology was found to be five times more effective at diagnosing heart rhythm problems in patients than standard tests, according to a study part-funded by the British Heart Foundation (BHF).

The device, which can record a patient’s heartbeat at home, was also quicker at detecting the cause of palpitations and cut the cost of diagnosis.

The researchers, from the University of Edinburgh and NHS Lothian, said it could help save lives.

“We’ve shown that this device is an easy, cheap way to diagnose heart rhythm problems which usually see people attending emergency departments several times before they’re diagnosed,” lead author Dr Matthew Reed, from Edinburgh Royal Infirmary, said.

“For those with harmless palpitations this device can quickly give reassurance, whilst for those with serious underlying heart conditions it can act as a lifesaver.

“We are now calling for this technology to be rolled out in emergency departments across the country.”

Palpitations are often not serious but are sometimes caused by underlying heart rhythm disorders such as atrial fibrillation, which can lead to a stroke

An electrocardiogram (ECG) is used by doctors to detect heart rhythms and help diagnose patients.

However, by the time someone reaches A&E their symptoms have often subsided and their ECG is normal

The study involved around 240 people who turned up at 15 A&E departments in the UK with palpitations or who felt lightheaded.

The AliveCor KardiaMobile device was given to 124 of these patients to take home. They were told to activate it when they experienced a palpitation, with the ECG result sent to a doctor.

Meanwhile, 116 patients were given standard tests and, if undiagnosed, told to return to A&E or visit their GP if they experienced more symptoms.

After 90 days, the smartphone device helped doctors diagnose 56% of patients, in an average time of 9.5 days.

However only 10% of patients given standard care were diagnosed, in an average time of 43 days.

The technology also cut the cost of diagnosis from £1,395 to £474, the researchers said.

Professor Jeremy Pearson, BHF associate medical director, said: “By taking advantage of the tech that we carry around in our pockets every day, this cutting-edge device makes sure that it’s easy for people experiencing palpitations to directly record their heartbeat.

“They can then relay the information rapidly to a doctor and improve their diagnosis.

“This device could spare people from further anxiety, save the NHS money and, more importantly, save lives.”

The research, funded by the BHF and Chest Heart and Stroke Scotland, was published in EClinical Medicine.

Dr Matt Kearney, national clinical director for cardiovascular disease prevention at NHS England, said: “Untreated heart conditions like atrial fibrillation put people at high risk of stroke but can often be difficult to diagnose.

“New technologies such as AliveCor( Kardia) can make diagnosis easier, and that’s why in the last year, NHS England has already made thousands of these devices available to GP practices across the country as part of the Long Term Plan commitment to prevent 15,000 heart attacks, strokes and cases of dementia.”

[maria40 in reply to Dovelady]

Thank you for this. I have SVT and I shall ask my GP about this. My palpitations did get worse as I got lower than 8mg pred and did show clearly on my last ECG whereas before the episodes were not clear so it's always worth getting checked.

[Sandradsn in reply to Themidget]

Could you feel the palpitations or thumping while you were there?

Mine are definitely worse when I'm worrying and anxious .

[Themidget in reply to Sandradsn]

Yes I did. I was convinced that the tests would show some irregularity, but No all was calm and "normal"!. This was an odd outcome, but none the less somewhat reassuring, albeit it was my first foray into this zone and hopefully my last. Time will tell eh!. Thanks again for your concern and advice.

[Hidden]

I think i would be calling an ambulance had mine lasted 2 hours. I had a similar lack of interest from.gp until they decided my pulse was fast (second time) and to hosp for ecg and holter test. Did have a couple of flutters but no issues. A 2 hour session needs to be investigated.

[Marilyn1959]

Rather than worrying yourself silly and guessing at the cause, though your taper seems very quick to me, I would go to A&E. You really can't mess about with these symptoms. Something is going on and needs to be investigated and fixed. A&E visit should fast track investigations.

[Themidget in reply to Marilyn1959]

Taper pre getting involved with forum was; 15(6wks),10(4wks) and them 1mg monthly. Hit 7 in March 19 and had to increase to 8 for 2wks.Now back on 7 and feels like chaos with blood flow, depth of heart beat and increased BP 140/82-My baseline is 115/65.

Any further insight would be appreciated

Thanks again Marilyn.

[Marilyn1959 in reply to Themidget]

Hi again. Just wondering how you are and what you decided to do? Warm regards Marilyn.

[Sandradsn]

I mentioned my palpitations to my Gp and she said"oh yes I get them too".

[Themidget in reply to Sandradsn]

Response in that zone from my GP Sandradsn. Think this is a DIY job with home monitor and maybe a call to the paramedic during an episode.

[Grants148]

Hi Themidget ,l often have palpitations and a very rapid heart rate ,this is usually during the night.l also sometimes have missed beats which are really scary.l have had heart monitors and ecg’s but nothing happens during those times.l would go straight to A@E if you can when this is happening,or call paramedics to come and check it out,as waiting for cardiology appointments and ecg’s have not worked well for me.l shall try and do that myself next time l experience any problems.ATB,and l wish you a lovely Easter.

[Themidget in reply to Grants148]

Many thanks Grants. I guess this is a well informed DIY job with a home monitor to see what turns-up on a trace over time. I think your advice re a paramedic during an episode, is also worth a shot. Thanks again.

[PMRpro Ambassador]

When they happen do seriously consider dialing 999 - a paramedic will take an ECG and see what is going on.

Your GP needs a clip round the ear. No doubt he blamed pred? Which I might have some sympathy with if they had started at a higher dose and improved as you went down. but it sounds as if you are experiencing what I do - lower doses mean more atrial fibrillation for me.

I had a similar experience to Dovelady. Originally I had mild episodes of palpitations which had started about the same time as the other PMR symptoms. They didn't last long and the GP was similarly disinterested - though he did say I should call 999 when it happened. I never did. It wasn't pred - I wasn't on it! Then I was in hospital for a really severe flare of the PMR and back problems and they used an infusion of diazepam - which triggered a really severe episode of atrial fibrillation. They sorted it out and put me on medication before I could go home. And subsequently I realised that the palpitations were gone. The cardiologist thinks it was due to damage to the electrical cells in the heart caused by the autoimmune part of PMR.

Last summer I was on 7mg pred when the a/f broke through the usual medication. I discovered that at 8mg it was much improved and at 9mg gone altogether. That was fine all summer until in early October I had a real PMR flare with bursitis and stiffness that needed 15mg to get under control. It also controlled the a/f - but it returned when I tried to reduce to 14mg for more than a few day at a time. The same has happened every time I have tried to go to 14mg. The cardiologist agrees that the a/f is associated with the vasculitis which currently needs 15mg to manage.

So your GP is wrong, he needs to arrange at least a 24hr Holter monitor to identify what is causing the palpitations - a/f, another arrythmia, whatever. There are longer monitors available if the 24 hour version doesn't catch an episode, which obviously is important. And why if they last long enough, getting a paramedic along is a good move.

[Themidget in reply to PMRpro]

Many thanks. Looks like I am in the "danger zone" with the taper schedule. Tempted to simply work back up and see if any effect. Paramedic will get the call next time. Between the rock eh!!

[PMRpro Ambassador in reply to Themidget]

Tell me about it!! I experimented several times, keeping notes, so I was sure about the dose effect. And then discussed it at length with my cardiologist - who I do know pretty well even though I don't see her very often. Then told my rheumy - didn't ask.

[Suet3942]

I have had palpitations as well when at a dose of around 9mgs. As you say, the lower you go the worse they get. I have been on amitrypteline for 5 years and recently stopped taking it because I had read that it could cause AF. Gradually the Palps have eased. Still get the odd beat but no where as bad. If anyone is on this drug it could be causing an irregular heart beat.