Any help greatly accepted

[CavalierKC3]

I am now down to 7mg of Prednisolone from 50 last august. One of my main problems is fluttering in chest, heart seems to be beating irregularly & it frightens me so much. Had ecg recently all ok doctors say. When I get this I have the overwhelming urge to cry. All my life doctors put my troubles down to anxiety “nerves”. I am getting it bad this morning while I write this, last evening I felt extremely tired but I do not sleep well. What are your views on this, as it really affects my life, crying at moment & worried that something is wrong & I will die suddenly

[DorsetLady PMRGCAuk volunteer]

See you asked similar question a couple of months ago, and it seems you got medical advice then and all okay.

I did link something about dealing with stress in previous post, did that help? I think you need help re your anxiety - Maybe have a look at this -

nhs.uk/mental-health/talkin...

It wasn’t mentioned then as you were on a slightly higher dose of Pred , but I could be related to your adrenals stuttering - see this link has a few posts about them -

healthunlocked.com/pmrgcauk...

But you have reduce quickly, which may not be helping either.

[PMRpro Ambassador]

Did you just have a short ECG? Did you have the symptoms while the ECG was being taken? An ECG is only a picture - and only shows what is happening at the time as I explained 2 months ago. If it didn't happen at the time - it will show nothing.

For a start you need to discuss the mental health aspect with your GP. If you don't have one, do you have any younger members of the family who have a Fitbit or a smartwatch they would lend you so you can get an ECG recording of your own that shows what is going on?

How long do the episodes last? It is difficult when they are just a few minutes, but if they usually last longer, calling 999 is not unreasonable, they do try to respond to cardiac related calls quickly and that may allow them to get an ECG tracing while it is happening.

It is unfortunate when you have a history of anxiety - doctors often fail to identify any other cause because they blame that.

[CavalierKC3 in reply to PMRpro]

Just a short ECG. I know it only records what’s happening at the time, but doctors not interested. Once diagnosed with anxiety, nerves etc I think that goes against you for the rest of your life. Blood pressure readings were fine so that’s that. Years ago I was given medication for anxiety etc & it caused liver failure ended up in Royal Free hospital for 3 months. Thankfully I recovered. Now got GCA & possibly PMR ( rheumatologist won’t agree) so it’s all very hard to deal with

[PMRpro Ambassador in reply to CavalierKC3]

So have you got a useful family member or friend? There is a thread you will find useful if you are at all technically able or have someone around who is:

healthunlocked.com/pmrgcauk...

If you have the evidence they can't dismiss it as anxiety. They shouldn't anyway but it is what it is.

PMR symptoms are part of GCA for some people - the rheumy doesn't have to agree if he is that unaware!

[PMR_sufferer1]

Yes it could be AF but that only shows on an esg during an episode.Go back to your Dr AF is serious and put a plan together to be checked at the right moment.

. It could be stess but AF needs to be discounted in my view.

[PMRpro Ambassador in reply to PMR_sufferer1]

Or any other sort of paroxysmal arrythmia! Doesn't matter WHY the heart beats erratically - but erractic heart beats of certain sorts put you at risk of stroke or heart attack,

[Mack100]

I have had a few episodes of arrhythmia in the past couple of years, I attended my local ED for the first one and the results were somewhat inconclusive, one doctor said it was AF and another said it was SVT and on that basis I was prescribed Apixaban. Neither doctors were cardiologists. However an ECG trace is not available for that episode.A second event a year later at a different hospital produced an ECG trace which showed SVT but no AF. In both episodes I feel entirely well. Because of this inability to produce a diagnosis l consulted a cardiologist who advised getting a device called a KardiaMobile which was briefly mentioned in the link supplied above.

It's a small device which I attach to my keyring and it supplies a single lead trace in the event of arrhythmia and importantly it will inform you of an episode of atrial fibrillation. The device requires a mobile phone and records a copy of any trace for future reference.

I bought mine from the British Heart Foundation at a cost of £99. There is also an option to join a subscription service at £10 per month that will provide you with a cardiologist assessment of an episode but I don't bother with that.

[CavalierKC3 in reply to Mack100]

If it’s on a KEYRING how does it record what’s happening in your body. Can it pick up what happens overnight

[Mack100 in reply to CavalierKC3]

In the event of an episode you open the KardiaMobile app on the phone and place fingers on the device, after a pause the app will show the trace and will advise if it is atrial fibrillation, bradycardia or tachycardia. Another device is also available at a cost of £149 which will give a 6 lead trace.

[CavalierKC3 in reply to Mack100]

So you have to experience something for a little while. What I get is normally very quick & would be over before I got the thing set up I think. Maybe mine are just palpitations or extra beats does it tell you about them. What is better about the £149 one

[PMRpro Ambassador in reply to CavalierKC3]

You carry it as a keyring. You hold the device in your fingers for the 1-lead version or hold it and lay it on your ankle for the 6 lead version.

This is a fairly independent article about i

healthline.com/health/kardi...

Some users say once they have the 1 lead version they are continually pushed to upgrade or buy the company's monitoring programme.

It is FDA and NICE approved - not sure if that is a recommendation or not!

[PMR_sufferer1 in reply to Mack100]

They are advertised on the TV in the UK. Not sure about keyring but you have a small flat devise with two sensors to put a finger on from each hand.Then ot shows a trace on your smartphone through an app i assune.

I was hoping to get obe free beong on the Cambridge AF trial time will tell on thay one 😀

[Mack100]

It's very interesting that your episodes are over so quickly, mine will last for a few hours. The 6 lead device supplies more information.

[Missus835]

I have PMR. Also Generalized Anxiety Disorder. The anxieties that come with this particular disease are over the top. Maybe your flutters are trapped gas, but the anxiety will lead you down the "heart attack" rabbit trail. Always best to get it checked out. I've been on anxiety meds (not depression) for over 20 years. Not ashamed of it. Talk to someone about this as well. If it's affecting your quality of life, then it must be discussed, for it's an illness like any other.

[CavalierKC3 in reply to Missus835]

What do you take for anxiety. What symptoms of PMR do you have

[Missus835 in reply to CavalierKC3]

All symptoms are alleviated with Prednisone. I do have 2 vertebral fractures and so my back muscles are extremely sore. Not PMR. For anxiety I take .5 milligrams of clonazepam in the morning. That would be up to your doctor though. Small dose keeps me level.

[Pusph]

I have SVT Supraventricular tachycardia and suffer from palpitations, ectopic beats, what I call 'dropped/skipped beats' and flutters. Sometimes my heart just seems to 'sigh'! The pred seems to make it worse. I'm not doing anything in particular, I can be out walking, pottering around the house, sitting in a chair or even asleep! Mine can last anything from 30 secs to an hour and the longer they go on the more worried and stressed I get which obviously doesn't help! A referral to a cardiologist would help put your mind at rest and maybe a 7 day heart monitor would pick up the flutters, immediately you feel them you just press the central button and it records. I know how worrying it is and hope you can get a referral.

[PMRpro Ambassador in reply to Pusph]

There are better monitors that trigger themselves to send a recording. I don't always recognise I am having an episode.

[Karenjaninaz]

CavalierKC3, this has been my experience: in the last few months, I started to feel racing in the heart skip beats at times. Every time I see the doctor I tell him, i’m concerned about atrial fibrillation, because I feel an irregularity at times. Every cardiogram I have shows a normal pattern. Unfortunately, these episodes became more and more frequent to the point where my heart would start racing. The beats went up to 150 minute as measured on my pulse oximeter. Sometimes this was over quickly, but it started to last longer and longer. I became quite alarmed and would call the ambulance because that pulse is to rapid for someone who’s 81. As soon as the ambulance came the pulse regulates, but then I would go to the emergency room. Stay for a few hours, be monitored, and everything would be fine A week later the same thing happened. What helped was, last year, contacted a cardiologist before any of this happened because of my age for an evaluation. On one of these emergency room visits I was prescribed diltiazem and which is anti-arrhythmic and Eliquis a blood thinner. After the second emergency room visit my cardiologist applied a continuous monitor to my chest called Zio monitor. This makes a continuous recording of my heart rhythm over one or two weeks. The device is sent to a special lab, then gets back to my cardiologist with the report. While wearing the monitor, I had an episode of extremely fast pulse and feeling unwell. Atrial flutter and atrial fibrillation both showed up and I was given additional medication. It was a third visit to the emergency room where the episode lasted two hours. It seems like every time I had an episode it got worse and worse. Now I might be mixed up with when I got the each medication. Right now I’m stabilized and rarely have a palpitation.

These episodes make one anxious not the other way around. I really don’t believe anxiety makes atrial flutter and fibrillation though it can speed the heart.

I suggesting a proper cardiologist. I don’t think one can make a proper diagnosis with something you can buy at the store. The Apple Watch has an app which can elicit atrial fibrillation by the pulse but it’s not 100% accurate. It does not show atrial flutter or other abnormalities. I bought one after all this.

Don’t let anyone blow you off by calling it nerves.

Current practice, in the US, prescribing sedatives like clonazepam, Xanax or Valium. have no place in treatment of the elderly. They can cause depression, habituation, ca falls, dizziness and memory issues.

This has been my professional training.

My sister-in-law who has many heart issues was wrongly, prescribed Valium. I could hardly understand her on the phone; later that evening, she fell into the bathtub as she went to the toilet, banging her head.

(Retired nurse anesthetist here).