Racing heart ❤️

[Toobusyforthis]

Morning all it’s 5.30 am Sunday morning, I can’t sleep for another night, I’ve had a terrible migraine since Friday and my heart is Racing / Banging so loud it’s keeping me awake! I can’t stand another night with no sleep! Help please any suggestions? Xx

[Ringo4]

Hi there - so sorry to hear that. It may help to separate out the issues. Do you normally get Migraine? Are you able to still do things or do you have to lie down? What has helped in the past with it - do the same now. You are going to really struggle to tackle anything else if you are in extreme pain so start with that...

I am going to reply separately to you on heart pounding, more to come...

[Toobusyforthis in reply to Ringo4]

I haven’t had a migraine fir months , probably before Xmas , to be honest it started last week with a dull headache then progressed ...Thankyou for your answers x

[Ringo4]

As promised, some thoughts on heart pounding. I think it helps to make your brain stop listening to it, but how? Things I have used include a nifty (cheap) noise cancelling machine that I came across in a hotel in America years ago. You plug it in to a socket, it has a few choices of programs such as the noise of gentle rain, white noise etc and volume control. Your hear that instead of your heart and eventually go to sleep. I got the cheapest one possible off Amazon and it’s lasted years. YouTube (and I guess other sites), also has a variety of free programmes that you can try out, some are really fascinating as to what works for people. I also try not to lie on my left side too much as that makes it worse. And every so often, when I think I can’t go on without some sleep, I take Valium (low dose) which works for me in terms of switching off some of the annoying panic signals that a fast beating heart will create! So you may want to try your GP service to discuss it (also to make sure that there is nothing else causing it). Be gentle with yourself today, I feel for you.

[Toobusyforthis in reply to Ringo4]

Thankyou I tried laying on each side I tried not to listen to it but it was 90 bpm resting ..driving me mad x

[Ringo4 in reply to Toobusyforthis]

Yup, it is really scary. At first, I thought the root cause for me was PMR/GCA related but I think I’ve narrowed it down to mostly the painkillers. So I took myself off them which has been interesting and feel a lot better! The pain can be ghastly but better than my heart pounding out of my chest! Wishing you well

[Rose54]

Hi If I was you I would call 111 and discus with them .

I dont wish to worry you but racing heart was the only symptom I had when I had Heart Attack.

It may not be anything but its better to be safe then sorry .

Let us know how you get on

[Toobusyforthis in reply to Rose54]

Thanks Rosie will do xx

[Ringo4]

Hi again, a word of caution with the use of 111. The phone is answered by a call handler who will take you through a list of pre-prescribed questions and will not deviate. It can often be quicker to look up signs/symptoms of heart attack if you are concerned that may be the root cause and not drug side-effects or things like migraines. All the best

[PMRpro Ambassador in reply to Ringo4]

I don't think speed in identifying the symptoms is the point - it is accessing OOH care. And while they do use an algorithm, it is possible to request a call back from a clinician who is able to deviate from the questions. Cardiac symptoms do often trigger a 999 response via 111 - even if really not appropriate.

[Fran_Benson Partner in reply to Ringo4]

We would always recommend that if you suspect you are having cardiac symptoms you contact 111 or 999 depending on severity. It's not really the appropriate time to be googling.

[Ringo4 in reply to Fran_Benson]

I’ve been misunderstood. The point is it is quicker to quickly check yourself and go to A&E...anyway, over and out!

[Toobusyforthis in reply to Ringo4]

On my way x

[Ringo4 in reply to Toobusyforthis]

Well done, good luck . Probably a long day ahead for you...my fingers are crossed x

[HeronNS]

These are similar to the symptoms I had many years ago when it turned out I had an extremely low haemoglobin count, needing blood transfusion.

[Toobusyforthis in reply to HeronNS]

Ok Thankyou , I thought it may be the prednisone...I think I’ll get it checked out, typical it’s a Sunday with the doctors closed 😞

[Kendrew]

Hi Toobusyforthis. So sorry you're having such a stressful time at the moment. Looking at your notes, you're on 7.5mg pred. Other's more informed will be along, but briefly, you're at the approximate dose where your adrenals need to start firing up again and producing the shortfall in cortisol you may not now be getting from the steroids. (Our body apparently needs somewhere around 7.5mg daily) Whilst the steroids have been providing the cortisol you've needed, your adrenals have technically 'gone to sleep'. When they are required to 'wake up' again and provide the shortfall, it can be a bit tricky and needs careful management as you can feel quite unwell for a time and this may be the cause of your current issues. It's also important to consider that insomnia and disturbed sleep patterns are incredibly common side effects of taking steroids anyway....on top of what you're experiencing. A racing or pounding heart can also be a side effect of taking steroids and I personally developed constant palpitations at 7.5mg and above. I saw a cardiologist and had lots of tests that revealed ectopic beats.....harmless but nevertheless extremely troublesome. I now take a small daily dose of a beta blocker called propanolol and the problem is sorted.

I think it goes without saying that the anxiety around what you feel regarding your racing heart will most definitely be compounding the issue, and until you receive some reassurance as to the cause, this is going to be difficult to manage.

I would suggest you firstly find some reassurance regarding the cause of your racing heart.....this will reduce anxiety levels which will hopefully lead to more restful nights and even an easing of the headaches if anxiety and stress are contributing to them.

Headaches again can be a side effect of taking steroids and at around the 10mg dose I always develop unpleasant head pains up back of my head and over top of scalp. (Investigations to rule out GCA resulted in that conclusion.)

In the meantime, it's already been suggested that dampening the 'obviousness' of the heart pounding might help.....there is some really good relaxing 'sleep' music /noise, on BBC Sounds and this might help divert your thoughts elsewhere.

I'm sure others will be along with alternative suggestions too and hopefully something will resonate and help you navigate your way through this.

We all get periods when it feels like everything is mounting up at once, but in the 2yrs I've been diagnosed I've come to realise that these times do pass and we do eventually find some kind of resolution to the problems.

I hope you get this resolved quickly.

[Toobusyforthis in reply to Kendrew]

Thankyou for your response , I’m waiting for the doctors to call back, I’ve not been monitored since starting the prednisone a month ago , as I went to a private specialist and are waiting to now hear from my GP . Thanks again illl lol keep you posted x

[Kendrew in reply to Toobusyforthis]

Just been reading your previous posts and noticed you said in a post only 25dys ago that you'd started on 12.5mg for 4wks then 10mg for 4wks etc, but in a post 10dys ago you said you were on 7.5mg! To go from 12.5mg to 7.5mg in 15dys is incredibly fast and definitely not to be advised! This could be the reason you're experiencing the problems you are . Tapers must be VERY slow. Maybe I've misunderstood something?

[Toobusyforthis in reply to Kendrew]

Yes your correct ..I was supposed to start on 12.5mg but started on 10mg then have now reduced to 5mg ..in 4 weeks , up to now I’ve been feeling good no aches or pains so thought I was doing well but maybe this is why I have had the headache and palpitations? X

[Kendrew in reply to Toobusyforthis]

That's way too fast! I'll leave it to the more informed members to explain why though. Steroids really have to be respected and jumping down too quickly or in too large a dose can have unpleasant consequences. Please be careful.

[Toobusyforthis in reply to Kendrew]

I thought as I’d only been on then a short while my body wouldn’t be that dependent on them , and it would be ok ? I feel like a naughty child 😥

[Kendrew in reply to Toobusyforthis]

Sorry....I didn't mean to sound like I was chastising you. Just concerned about you. As I mentioned...others should be along to advise you further.

[Toobusyforthis in reply to Kendrew]

I do feel like I’ve been naughty but I was so frightened about taking steroids I just couldn’t wait to reduce them, what with all the side effects . Thankyou for your concern xxx

[Kendrew in reply to Toobusyforthis]

I know completely that feeling. I went from being a person who wouldn't even take a paracetamol unless absolutely essential to someone taking steroids and biphosphonates...2 of my worst nightmare drugs. However over the 2yrs I've been on them I've learnt that steroids particularly can be your worst enemy but also your best friend when it comes to alleviating PMR issues. I've made it my business to learn as much as I can about both my condition and steroids so I can make informed decisions and not cause further harm to my health and well-being. Initially I tapered from 40mg down to 2.5mg in 14mths! I felt quite smug and pleased with myself until I had a flare! I'd reduced too quickly and by too much and I'm now still on10mg tapering to 9mg. I learnt the hard way! Now I do a very slow taper taking 8wks + to just taper 1mg! I'm as eager as the next person to get off steroids but I know if I rush things it will never happen. Yoyoing up and down doses makes it harder to taper each time. You'll get there. Just try and be a little more patient. Not easy I know!🙂

[PMRpro Ambassador in reply to Kendrew]

It isn't that bad - I started on 15mg first time round - and 4 weeks later was at 5mg without any problems because that was the taper to get off pred (not a PMR diagnosis at the time). I was fine for 2 weeks at 5mg, it was missing the first 5mg dose that tipped my back into full-blown symptoms.

[SnazzyD in reply to Toobusyforthis]

Don’t feel naughty, you’re not the first. The idea is that you should feel better but that isn’t a signal to assume it’s because the PMR has gone, it just means the dose is holding the inflammation. The idea to reduce slowly is a) to carefully find the exact dose that is currently enough to hold it. If you gallop down the dose ladder and zip past your ideal dose you don’t know whether it was 11mg, 10mg or 10.5mg for example and b) to avoid withdrawal symptoms which can cloud the issue and make it difficult to know whether you are flaring or are ill. Yes, I know they say if you’ve only been on Pred for about 3 weeks it’s ok to just stop but I have noticed in people (not here) that some are affected much more readily and feel pretty ropey. If you are one of those, your adrenal glands may have already gone to sleep and have stopped producing cortisol. If you suddenly present your body with a dose below 10mg the cortisol producing system might not respond and an adrenal crisis occurs. I know some people here get cardiac symptoms when their PMR inflammation is not being controlled and perhaps you are one of those.

Was there a reason why you decided to start on 10mg? We’re you pain free then?

Again, bottom line is that although we can all theorise about it here, this is a new symptom and is continuing and you need to be checked for other causes too. Sadly, it seems with the private sector in all fields of care that monitoring and easy access to out of hours advice is poor.

[YuliK in reply to Toobusyforthis]

Good morning Toobusyft

Are you drinking enough water ? Drinking water will help relieve your migraine a little.

Do you have any anxieties which you are worrying about. That can cause your rapid heart beat.

If you have a blood pressure measuring apparatus you should measure your blood pressure.

At the moment I can only advise you not to drink tea or coffee until you have seen your doctor or taken medical advise.

Please read this article, it will make you feel calmer.

healthline.com/health/heart...

Feel better soon.

YuliK 😷

[Toobusyforthis in reply to YuliK]

Thankyou x

[Toobusyforthis in reply to YuliK]

Water is not my favourite tbh, I’m trying to drink more but hate it , Thankyou I will try xx

[YuliK in reply to Toobusyforthis]

Water will dilute your blood which is circulating your brain and body. Because of the lack of fluids your blood becomes much thicker and has a harder job circulating. Hence headaches ...

Put a little fresh lemon juice in the water, it’s pretty tasty.

Don’t put off seeking professional medical help. 🙏

[SnazzyD]

You really should call for advice because your headache has been going for 10 days and the banging with a raised resting pulse is not right. Things need to be ruled out now. Just a long shot and out of interest, I found eating high cocoa chocolate near to maximum Pred effect time was a terrible combination and made my heart beat so hard I could feel it on my ribs and race for a few hours.

[Toobusyforthis in reply to SnazzyD]

Thankyou x

[PMRpro Ambassador]

Is your current dose of 7.5mg managing your PMR symptoms? The speed of reduction at this early stage is not too much of a problem - UNLESS you end up at a dose that is inadequate for its primary purpose: managing the PMR symptoms.

Did you have any palpitation-type problems at the higher doses of pred? I had had a few years of occasional episodes of palpitations and they had started soon after other relatively mild symptoms of PMR appeared, Eventually something happened that resulted in a diagnosis of atrial fibrillation - and the cardiologist was confident that it was due to the autoimmune part of PMR causing damage to the electrical cells in the heart. If I have a flare or get to a dose of pred that is slightly too low for my PMR, I have increasing episodes of tachycardia and a/fib. Being on the right dose also keeps the cardiac symptoms under better control.

And the fundamental question is: is it really a migraine? Are there any signs that it could be GCA coming out to play? Where is the headache sited? Have you any other problems/symptoms?

Beyond that, have you got a BP cuff and/or a oxygen saturation monitor? The sats monitor is the cheaper and simpler way to check your heart rate during these episodes - that is more important than whether you are aware of it. If your heart rate is significantly raised over a long period it is appropriate to call 999 and ask for help. That will fit into the 111 algorithm as well and you should at least get a call back from an OOH (out of hours) clinician.

[YuliK in reply to PMRpro]

Good advice. 👍

[Toobusyforthis in reply to PMRpro]

Yes the lower dose seems to be ok regarding the PMR the palpitations are a new thing , all last night , I’m waiting for a call back atm , Thankyou x

[PMRpro Ambassador in reply to Toobusyforthis]

Good!

[YuliK in reply to Toobusyforthis]

Please let us know how you are getting on. 👍