Is this reaction normal? Was very frightening.

[Fifegran]

Have had PMR since May 2018. All symptoms seem to have gone and am now trying to taper off the prednisalone, have been on 1mg since December’23. Two weeks ago I reduced to .75mg , am very cautious, thought I would try this instead of going for .5mg straight away.

All was going well until two days ago, when I stood up I was extremely dizzy, suddenly felt nauseous, even felt dizzy sitting down, I had to lie down on sittee, there was no way I could manage through to the bedroom. I felt dreadful, had no idea what was happening to me. Actually wondered if I had the flu! All sorts were going through my mind when I suddenly thought, can this be adrenal insufficiency.For the past 2 months have been supporting my friend through the death of her husband, the arrangements and all that comes with a bereavement. Have also been diagnosed with carpal tunnel, which is quite painful and means I don’t get a decent night’s sleep, have to wait over a month for appointment with orthopaedics. I just wonder if it was a mistake to taper when I did? Since that episode have gone back to 1mg. Have also felt very tired for the past few months, going to bed a lot earlier than I used to. In my head I’m not at all old, (76) but my body is telling me a different story!Have read the pinned posts re adrenal insufficiency, I don’t drink enough fluids, my appetite has been poor lately, I seem to tick a lot of the boxes! Could this be adrenals?

[PMRpro Ambassador]

Oh yes, I think that could be very likely. And that you came quite close to being very unwell with an adrenal crisis. Had you been doing something stressful that afternoon? It is a bit surprising that such a small change in dose had such a dramatic effect but actually I'm on a lot more pred than you and I can feel quite unwell after a difficult day even on 6mg. It may be coincidence that it happened soon after reducing the dose.

[Fifegran in reply to PMRpro]

Many thanks for your prompt reply. I do tend to always ‘fly about’ doing stuff. I find it difficult to relax, although I enjoy reading. That day I had hurried round the town doing a big shop in freezing cold & heavy rain. Will slow down for a bit I think. Happy Easter from Fife.

[PMRpro Ambassador in reply to Fifegran]

Have I asked - where in Fife? My daughter has just bought a house in Carnock.

[Fifegran in reply to PMRpro]

Sorry, missed your post, been a busy weekend. We live in Markinch, but many years ago lived in Culross which is nearer to Carnock. Hope your daughter enjoys her new house, we have a lot of good memories of west Fife!

[PMRpro Ambassador in reply to Fifegran]

She would have liked Culross! They go all over for walking the dog instead of around Rosyth.

[Fifegran in reply to PMRpro]

It was over 25 yrs ago, Culross has changed a lot, more touristy. There used to be a small shop that sold ‘everything’. They used a paraffin heater, the biscuits used to smell of paraffin! The Red Lion pub was very popular, sometimes they had ‘lock-ins’ after closing time. These were the days! Balbirnie Park here in Markinch very popular with dog walkers, it’s a large estate with good hotel and lots of forest walks.

[SnazzyD]

Could well be and it can happen in minutes from being ok to being very not ok. All of a sudden one has nothing left to do anything. If it is really bad, one feels very doom laden and empty. Low blood pressure on standing is a classic sign. When you get to low doses and are prone to this, you really have to watch your step and be mindful of small things that add up to empty your cortisol pot.

[Fifegran in reply to SnazzyD]

Thankyou for your reply, after 6 years I tend to think I’m back to ‘normal’, a lesson learned this week, it was really scary. “Doom laden”, a good description, yes, have been feeling like that too.

[HeronNS]

May be worth adrenal investigation, or it may not be adrenals at all. Either way worth finding out. I had something very similar happen to me this morning. I lay down for a few minutes and have been fine since, but in my case assuming it's my heart which has been labelled "tired." Have been off pred for a couple of months, and on hardly any for a couple of months before that, and when event occurred I was just quietly doing some gentle morning tasks, so no stress involved.

[Fifegran in reply to HeronNS]

I’m sorry you had a similar episode today, hope you are feeling much better. I did eventually get through to bed, just wanted to lie down quietly, that’s when I got to thinking it might be adrenal related. Will mention it to doctor when I get a chance. I believe stress can catch up with you. Keep well !

[HeronNS in reply to Fifegran]

Yes, I think is something to mention to the doctor. Hopefully you'll find it's something easily sorted, fortunately these things usually are, although one never knows. Reassurance is nice My "spells" have been occurring off and on for quite a long time, today's was one of the worst, and would rather like my cardiologist referral to materialise soon - it was made nearly two years ago!

[Pixix in reply to HeronNS]

Obviously, I’m not diagnosing you at all…but you may like to read postural hypotension up. I have been diagnosed recently, & now have dizziness, nausea & my BP drops like a stone every time I sit from laying down, or bend down & straighten etc. Laying down equalises it all, but then I can only get up very slowly. It’s life affecting for sure, & I haven’t come to grips with it yet! I also suffer from BPPV, which doesn’t help! Not saying that what you and Fifegran have is not adrenal problems, I had those 18 months ago & many symptoms are alike. PMR Pro & DorsetLady know far more about adrenals than I will ever, ever know. S x

[HeronNS in reply to Pixix]

Thank you. I know that - have basically had a version of that all my life - standing up too quickly and leaving your blood in your feet! This is definitely different. I got a pain in my stomach followed by a slight feeling of nausea accompanying the weird sensation in my head and knew I had to stop what I was doing (playing the piano and singing quietly to myself) and lie down. I recovered quickly. These are possible symptoms of heart problems, if not a full-blown attack. In my case I don't think it's adrenals. Any one of those symptoms on its own, even the strange head sensation which was not really dizziness, would likely not be too concerning, but all three together? I really do want to see a specialist in case there is something I can do to help myself keep on ticking for a few more years. Just want to live long enough for my grandchildren who are all very young to have some memory of me. Btw when a (milder) episode occurred not long after I got a BP machine I did measure it as soon as I could, and it seemed normal at that time. Couldn't have managed to do anything like that yesterday, not in the moment.

[PMRpro Ambassador in reply to HeronNS]

One option is to borrow a smartwatch which is track your ECG very efficiently, Bcol wrote a couple of articles about it.

[Avadip12 in reply to PMRpro]

Can a smart watch trace your ECG . Wow .

[PMRpro Ambassador in reply to Avadip12]

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Some hospitals are even using some of the commercially available options to screen which patients need the proper multi-day monitors for diagnosis. Some of the Fitbits can detect episodes of arythmia so you can go to the doctors and insist on closer investigation.

[Avadip12 in reply to PMRpro]

That is amazing , thanks

[PMRpro Ambassador in reply to Avadip12]

Thank Bcol - he did the research!

[Bcol in reply to Avadip12]

As well as doing many other things my smart watch (Samsung Galaxy) gives me/family peace of mind. BP, ECG, fall monitor etc.

[HeronNS in reply to PMRpro]

That's a thought. Thanks.

[Pixix in reply to PMRpro]

Thanks for that, sounds very promising! S x

[Pixix in reply to HeronNS]

You may want to have a look at Vaso Vagal Syncope. My father had it, & coincidence only it did happen when he was playing the piano!! That’s not at all connected, though. He used to lie down for ten minutes, then all would be OK again. In his case, though, he needed to do it quickly, so he would (not often!!) lie down on a shop floor, or once in the street, to prevent problems!! It’s not something that gappened often, though. I think I’m going to read up about smart watches…I get bored of taking & monitoring my BP!! I’m started to become just like him (& yes, I played the piano since I was 7), must see if vaso vagal is in the genes! It’s a shame you can’t pay to see a specialist. Just once & it would give you a good idea of what is happening. I realise you have problems with your healthcare system, as we have. I’ve waited over a year to see a rheumy (not about PMR!!) Take care!

[PMRpro Ambassador in reply to Pixix]

It gives you concrete evidence to brandish at a GP - or to call an ambulance if you have evidence of a long pause in heart rate. Though whether that helps given the figures being quoted this morning ...

[Pixix in reply to PMRpro]

I quite agree…though my Dr is well concerned by it, we discussed 17 points in our hour+ together last Tuesday, & he can’t give me a half day appointment (yet)! He asks me to do the BP checks, in the main, as I can do them when relaxed. He asked me to do a whole week of specific ones…waiting until really relaxed, watching tv on settee, take it while sitting, & note it. Then take it immediately I stand up. Those readings resulted in him diagnosing severe orthostatic hypotension.,,it was crystal clear! My low pulse (@47 this morning), I think, is due to the 16 Propanalol pills I’m taking to control the hand & arms tremor! But from next week I’m trialling a time release 2 a day version that may not give the problem, & will check if that IS the problem. My disease collecting needs to stop now, though, too much time on medical stuff & 37 pills a day!! Hope your heart is behaving better? S x PS whole lot in Junk again today, will contact HU later!

[PMRpro Ambassador in reply to Pixix]

No hurry - doubt there is anyone there today ... But do do it!

[Pixix in reply to PMRpro]

I planned Wednesday…Monday closed, Tuesday just back to work, big in box! Wednesday more available. All commments & messages now coming into junk box as well as daily update! S x

[PMRpro Ambassador in reply to Pixix]

Well at least you know where to look!!!

[Pixix in reply to PMRpro]

Absolutely!!!!!

[HeronNS in reply to Pixix]

I do have a diagnosis of aortic regurgitation, although my GP clarified when I talked to him about it that the echocardiogram had shown all parts my heart were "tired" - his way of describing that it was not a single issue which had been discovered without having to go into deeper details during our brief telephone conversation.

[Pixix in reply to HeronNS]

‘Tired’. I guess all hearts get tired as we age…I think it’s the performance most of us concentrate on!! Sounds like you need to ask some questions. I guess he wasn’t a specialist, though, as you are waiting for an appointment from your referral. Hope you get an appointment soon! S x

[HeronNS in reply to Pixix]

He started to tell me all the parts which were affected, thought better of it given that this was via phone and he couldn't point to a helpful diagram, and summed up by saying all parts of the heart were tired. It was all I needed to hear from him, but I await the cardiologist to confirm the inevitable that this is just the way it is and there's really nothing to be done, except maybe a med to keep the heart beating effectively for a bit longer. 🤷

[PMRpro Ambassador in reply to HeronNS]

There was a programme on German TV a few years ago about a guy who was on the list for a transplant because of heart failure. He got an electric bike so he could go out with the family - and after about 18 months his cardiac function was so much better they took him off the list!!

[HeronNS in reply to PMRpro]

Well if there is something more I could do I'm all ears, but I'm not exactly sedentary! Wonder how old the German patient was? Btw I'd never agree to serious surgery even if it were proposed. Save that for people with significant potential lifespan ahead.

[PMRpro Ambassador in reply to HeronNS]

50s I think. But they were amazed how effective the cycling on an electrobike was in strengthening the heart.

[HeronNS in reply to PMRpro]

When I (unsuccessfully) tried to find his story, Google did present me with a whole lot of info about the merits of e-biking!

[Pixix in reply to PMRpro]

Brilliant, good for him! S x

[Pixix in reply to PMRpro]

I’m getting mine out of the shed!! Maybe not today, though, I have a dog who needs two walks!! S xx

[Pixix in reply to HeronNS]

I’m sure, if it’s urgent, he wouldn5 have left it like that, & you would have seen somebody quickly. My husband has an enlarged heart, & atrial fibrillation, & is on 3…hm, or 4 heart meds. I have problems with high blood pressure & take a blood lowering pill a day…but I’m trialling blood pressure pills for a bad hand & arm tremor atm…I take 16 beta blockers a day. Takes some swallowing. Sadly, about 6 months ago, I developed orthostatic hypotension, it seems my heart isn’t sure what it’s doing!! The latest being that my pulse is only 48 - 52, healthy in a young athlete, but making me breathless, & stairs are tough. My Dr is sorting it out as we go along…next up us to try 2 time release pills to replace the 16 a day, not so much swallowing…may help the low pulse, we hope!! Hope your tired heart issue isn’t too problematic & you get a good solution. Oh, & a feee eBike (I must get mine out of the shed after reading the comments this morning!) S x

[HeronNS in reply to Pixix]

I guess we all have our problems, don't we? Hope yours get sorted soon. I'm sure mine wasn't urgent 22 months ago. My d-i-l urged me to call the dr and tell him what happened so it's on the record and maybe he can call the specialist to get me bumped up the list a bit. There's such a shortage of doctors including the specialists that it is very hard to see anyone. Have a phone visit scheduled for this afternoon so we'll see.

Enjoy your bike!🚲

[Pixix in reply to HeronNS]

Yes, we do. I waited 4 years to see a Neurologist (saw him last October), & 2 years to see a rheumy, saw him last April. Now I’m queuing for a different specialist, 1 year so far. I get an email every 3 months asking me if I still want to stay in the queue, but no appointment. I was surprised to hear it’s similar in NS. I’m sure you’ve heard plenty about the NHS here being unable to cope. The staff are great, in the main, just not enough personal or facilities. The wait for a ‘normal’ doctors appointment is 3 - 5 weeks in our surgery, but if it’s severe or urgent it’s same day.

[HeronNS in reply to Pixix]

The population of Nova Scotia is somewhat over 1 million. There are currently over 150,000 people on a waiting list for a primary care provider, which could be either a physician or a nurse practitioner. The number has grown a lot over the past few months. Apparently the whole country is experiencing the shortage. Meanwhile I recall the time back in the 80s when the then premier said we had plenty of doctors and cut the places available at our medical school. My first thought was this didn't bode well for the baby boom generation whose doctors would be retiring in droves just as we reached an age needing more care. It's much worse than I could ever have imagined.

[HeronNS in reply to Pixix]

Talked to my GP yesterday and he's called me in for an in person appointment tomorrow. He seemed surprised that I'd never heard anything from the cardiologist. It's absurd really. They tell us that the primary care doctor shortage is caused in part by students opting to go into specialties, but the specialist shortage is crazy.

[Pixix in reply to HeronNS]

Sad that Govt seem to fall short of knowing the needs of a medical service. I can’t believe it cut those medical school places. Good to know you have an appointment today, though, that’s excellent.

[PMRpro Ambassador in reply to Pixix]

Many countries fell into the trap of forgetting that having lots of doctors because of the boomer generation NOW doesn't mean that you will still have lots of doctors when said boomers get to retirement age - and become consumers instead of providers!! Also the lack of understanding that a medical service can't run on high capacity and JIT, it must always have stocks above immediate need and a buffer of bed capacity.

[Pixix in reply to PMRpro]

Yes, but sad, as people are in the positions needed to know these things & act upon them (but clearly don’t)! S x

[Pixix]

Please see my report to Heron NS…I don’t think it applies to your situation, but it may be something to be aware of! S x