Internal fluttering/racing

[herdysheep]

I'm down to 4.5 pred and have been getting extreme fluttering when sitting or lying down. Very difficult to describe and not sure where it is coming from. Bit like when you have had a big shock, so I thought it may be adrenals being silly beggars. Does this ring a bell with anyone? It is a bit disconcerting but doesn't appear to be heart. Couple of months now and more pronounced rather than receding.

[SnazzyD]

I certainly remember feeling trembly (a feeling not visible) when my adrenal glands weren’t producing enough cortisol. If I did anything extra, had a fright or had some stress to deal with, it was worse.

[herdysheep in reply to SnazzyD]

Thanks for your quick response. Did you find anything eased it? Seems to be lasting a long time and very aware of it when in bed.

[SnazzyD in reply to herdysheep]

Do you mean your heart?

[SnazzyD in reply to herdysheep]

How long has it been happening for and does it come and go?

[herdysheep]

I don't think it is heart. Pulse rate on oximeter at the time seems ok. Don't get it when standing up usually. To be very technical, seems to be in the tubes!

[SnazzyD in reply to herdysheep]

How is your Bp? Is the feeling there every day, all the time or does it come and go? When did it start?

[herdysheep]

Every day especially nights. Started couple of months ago. Comes and goes depending on what I am doing. I am not short of breath but almost feels as though I could be! Really hard to describe

[DorsetLady PMRGCAuk volunteer in reply to herdysheep]

What are you doing when it does come on?

[herdysheep in reply to DorsetLady]

Not a lot. It's when I sit down or lie down, not necessarily after anything strenuous. Haven't really noticed when active

[PMRpro Ambassador in reply to herdysheep]

Have you actually checked with a pulse oximeter during an episode and looking at the pattern of the pulse wave?

[herdysheep]

Not checked BP for a few weeks but was ok for me.

[herdysheep]

I have checked with oximeter when it is all kicking off but it is very basic and doesn't give pulse wave (or I haven't found that facility!)

[PMRpro Ambassador in reply to herdysheep]

Mine changes the display by pressing the on/off button, maybe 5 different versions but I think only one actually shows the wave shape

[SRIXON]

I have been having the same thing for same time, don't know if it's heart or what. Hard to pinpoint the exact area, sometimes almost feels like I have a restriction somewhere.

[krillemy]

yes!!!! I will write a little later today.

[Windy183]

exactly the same with me, think I posted about it on here a while back. It’s that almost ‘butterflies’ feeling you get when something either very positive or very negative happens. Just comes on whilst I’m sitting. Very odd, doesn’t appear to get better or worse. Mine’s about maybe 6 hours after I take my Pred if that has anything to do with it

[Karendeena in reply to Windy183]

I get it in the early hours of the morning and it goes when I get up, it's a jittery, fluttery feeling, makes me feel very anxious

[Ridge]

Is it tided in with feeling anxious? Perhaps you sit or lie down - nothing to do so you are aware of feeling anxious?

[Rosekid in reply to Ridge]

Ps I too notice the uneasiness goes away if I do something , anything and comes on at rest . Possibly because I AM at rest . I told my daughters I remember this state from early pregnancy : the slight nausea , change of taste, low mood , inertia . So yes , I remind myself , this is physiological and its good , tho it feels shite .And it will pass . Hopefully Cheers

[herdysheep in reply to Ridge]

Not linked with anxiety as far as I can work out. If it is bothering me I do the deep breathing exercises but they don't seem to make a great deal of difference to the racing

[Rosekid]

I recently started reducing from 5 mgms daily by 2mgms over each month . I get feeling of un ease , a dread almost which might be the same as your experience ? Oura ring says heart rate up on usual during sleep . Ive a low heart rate anyhow ( 50 + at rest ) . I experience a low mood , a feeling of being overwhelmed . Im hoping its due to reduced steroid . I realize now I ve had this at times and it may have been the 5 mgms was too little at intervals . In other words , less steroid resulting in a physiological state showing up as this horrible dread and panicky ness , which sounds like your experience . I agree with the ' butterflies ' description . V unpleasant and hard not to believe its ' all in my head ' . I get strong internal voice that I just need to ' pull myself together ' and ' crack on '

In fact ,I just draw up a plan for the day , break things into small pieces , and try to remind myself it ' ll be good to be off the stetoids over time . Its also why I m reducing very slowly . I wont reduce again now for a few weeks ie once Im ' up and running ' again .

Frustrating , its so invisible and hard to pinpoint and Im a busy person with committments family and community wise .

All the best . Consoling to hear others experiences of final tapering

Thanks

[agingfeminist in reply to Rosekid]

I have also been reducing from 5mg. But it has taken over 6 months to get down to 4mg. Your tapering seems rather more rapid. I have just managed 0.5mg reduction using very slow tapering ...it took 2 months. Now at 3.5. Feel LOUSY but no PMR probs (yet). I hope you do succeed with your taper...but don't worry if you need to take it much more slowly.

[Rosekid in reply to agingfeminist]

Thanks . I agree I need to go slow .Had a lousy month though no signs of PMR back

I realize that could take few more weeks or months to surface

This morning , I woke up so well .

My gut feeling is the PMR / immune prob has settled and Im now dealing with steroid withdrawal .

I agree .. If I push too hard ,too fast , I ll end up where I started

So snails pace

3 yrs if all goes well

[PMRpro Ambassador in reply to Rosekid]

Below 5mg you should be tapering by no more than 1mg per month at least - 10% of the current dose is the recommendation and at 5mg that is 1/2mg. Your adrenal glands must start to wake up and produce cortisol at this stage to top up the pred dose which is now lower than the physiological amount required for the body to function. That doesn't happen at the flick of a switch, it can take months. Low adrenal function would account for many of the feeling experienced at low doses of pred.

[krillemy]

I know exactly what you mean, and some also described it as the same butterfly feeling that you get like a small rush of joy/suporice or fright. It is not the hart or the breathing or the blood pressure (I had a Holter on for 5 days), and it comes unrelated to any "anxious thoughts" ect.

For me it's a rush coming from inside the body and then outwards in my arms and down my thighs - like a wave in the "nerves" maybe?

It has been there since before i started pred. and it gets worse if I am on too low a dose or having a flair or have been doing too much (also mentally)

I usually feel it in the evening in bed. My clear feeling is that it is the adrenals some how, but that does not really fit with it being there before I was on pred.

[marionofnorwich]

I have something similar to this but it is in my midriff under my breastbone where i would expect my adrenal glands to be. It started when i was 55 and under a lot of stress and maybe menopause too but HRT certainly sorted it out. I stopped HRT several years ago but can still make that feeling stop if i take one or two HRT tablets. Goes away for a bit. I can feel it most at around 4am to 6am sometimes during the day and as though something is being released into my body from that point. Not painful but not pleasant either. I think it is either cortisol or adrenalin. I don't actually know. Predates my PMR by 7 or 8 years

[Karendeena in reply to marionofnorwich]

Exactly where I get it and how I would explain it, it's not pleasant and once I feel it , I take deep breaths but that doesn't really help. It's an awful feeling of unrest

[herdysheep]

Thanks for all the responses. Looks like it is another visitor that has a mind of it's own but perhaps is also a bit of an adrenal warning and that we need to go canny

[BiteyDelano]

Hi, when I was on a similar Pred dose some months ago I experienced something similar.I was very concerned it was a heart issue so I took myself to A&E.

After 9+ hours of ECGs, blood tests, BP etc (and a lot of waiting), I was told that nothing untoward was found ...

The symptoms passed after a couple of days and I continued tapering - currently on 3.5mg and feeling OK.

Good luck

[herdysheep in reply to BiteyDelano]

Decided not to follow it up medically unless I could describe it sensibly! Been going on with no other ill effects, so fingers crossed. Definitely doesn't seem like palpitations

[nuigini]

I think I've had something similar, but not sure. Rapid, pounding and/or irregular heart beats. What I call palpitations. Heart tests last summer didn't reveal any major heart issues, however the episodes increased for some period early this year. Things have improved after stopping BP meds, but that's another story.

You may want to consider a portable heart monitor. Both my GP and Cardiologist highly recommend these devices.

Portable Six-Lead Heart Monitor | KardiaMobile 6L | Kardia

[BiteyDelano in reply to nuigini]

I bought my wife one of these, they work well and have the convenient facility for forwarding results to your heart doc.

[LouTed]

Hello,

I have been on the site for a while and read many of the posts daily to gain insight into PMR and GCA.

I do not have PMR or GCA but, joined and troll the site for my Mom and Auntie who are 84 and 76 respectively. Both have PMR and GCA.

After reading your post I felt compelled to answer as I to have experienced what I call “TheFlutter”. For some reason it seems to happen mostly at night when I am quiet and sometimes wakes me from sleep. It is sometimes accompanied by a warm flushing through my body and a buzzing feeling. Very unsettling and scary as I thought it was my heart at first.

I am 64 and am on low dose high blood pressure meds but, this nighttime fluttering started well before the meds. I have been tested for every possible medical condition that could be causing this including multiple heart tests a CAT scan and an MRI. It was not until I had a nerve test that the possible culprit of my fluttering was pinpointed. They also wanted to rule out PD.

I have had scoliosis for years which has progressed with age. It seems that my Peripheral nerves sometimes get pinched/trapped or interrupted from receiving messages from the many smaller nerves located in skin, internal organs and bones. The fluttery/buzzy feeling usually starts in my chest and radiates to my arms and legs.

My Neurologist also pointed out that this is not an unusual occurrence and that he sees many more females (of a certain age) than males, with this complaint, which leads him to believe that hormones also play a part in this fluttering/buzzing feeling. This did not start with me until at least five years post menopause.

I have since started going to a Kinesiologist who has helped with some of my muscle and fascia problems which seems to have lessened the episodes. I do notice that when I have have had a more rigorous day be it shopping or gardening or lifting heavy things that contributes to the nightly flutter.

If you have had your heart tested you may want to make sure that your spine/bones are not impeding some of your spinal nerves and may be wise to go for an EMG/NCS test of your nerves

I hope this helps, if not only to assure you that if you have checked most of the other health boxes that this unusual feeling may just be a benign event in your wiring.

[Singr]

I did have this on higher levels of pred. Now on 7mg. Not happened for a long time now. It was exactly like you describe. A fluttering. They tried a heart monitor but it showed nothing. It woke me up once and it got a fright. Hope it leaves you.

[Nagswoman]

I get erratic heart beats at times. Consultant said to get a KardiaMobile. Shows up oddness nicely.

[Karendeena]

Hi there, I get this every morning quite early when I wake. Like you I can't put my finger on where it comes from. As I have afib I thought it was my heart but when I check my pulse it's steady. I am convinced it's the prednisolone (I am down to 2mg daily). No one seems to have the answer but it is very weird..