The (for a Change?) Genuine Side: The Dizzy 'Lows' - Uncle MB's PMR / Pred Paradox no. 86. All Contributions welcomed...

[markbenjamin57]

Greetings All

First (Important!): This Post is NOT a Wind-up, Fake Nooz, Scam or yet another outrageous story that I've become famous (er, infamous?) for here. 'Cross my Heart and..', er, Risk the Wrath of the PMRGCA Aunties / Site Moderators etc if I should. Ohhh.. 'The Boy cried Wolf etc..'? This might just come back to Haunt me..

Rarely, this a 'Big Ask' for your thoughts, ideas and experiences which, believe it or not, I value greatly. Yes, I DO have a Sensible Head too - and I always try to read and listen to your responses. But that's enough of my Plea to be taken Seriously. One can go too far in such things

Here's my current PMR / Pred Dilemma:

Recent Context (6-ish months): Steady-does-it (again) at a cautious 3mgpd Pred after a typical (?) Snakes & Ladders Tapering Journey from 30 mgpd 3-ish years ago. A Brief and ambitious Flirtation with Pred Club Zero a few months back (& feeling Great for a month), but familiar PMR Symptoms (Pain, Stiffness etc) creeping back after a strenuous few weeks moving home. Ok, fair enough: and so, a return to The Pred Club in June. Even I'm not too proud to know when to Change the Plan - either way.

The last 2-3 weeks: diligently sticking at the current, cautious 3mgpd Pred despite an almost total absence of Pain and Stiffness and only a couple of minor, short episodes of DF (Deathly Fatigue) which have quickly resolved. Normal 'MB' Lifestyle / Activity levels of getting out-and-about, Doing Stuff generally, winding-up You Lot here, valeting the Limo, brawling with Tedski etc (ok, so the last bit was made-up. Sorry, I couldn't resist). No infections, injuries, undue Stress or over-imbibing in the Red Stuff. In other words, 'Steady State' in terms of all the possible Variables in the PMR / Pred management process.

So, 'Here's The Thing' (i.e. Paradox):

During the past few days (still at 3 mgpd Pred), continuing absence of PMR Pain & Stiffness and feeling very good Physical and Mental energy-wise - HOORAH!

BUT.. fleeting / occasional DIZZINESS, slight Nausea and 'Wooziness'. The Pattern: in the mornings when 'rising' (no smutty jokes please Aunties), standing from a seated position, and things like that. But apart from that, actually feeling Great - and back to 'Normal' - whatever 'Normal' means after 3+ years of PMR. Ohhhhh....!

And, here's my 64-Dollar Question for You Lot:

In view of this further, contradictory PMR / Pred-balance experience, might (and, I stress, MIGHT?) I once-again be experiencing unpleasant Side Effects (e.g. Dizziness etc) from an un-necessarily HIGH-a-level of Preds in terms of my current (and fortunately) continuing Pain / Stiffness / Fatigue-free context? The term Deja Vu comes to mind..

I only ask because, whilst understanding the reliable Wisdom that (sic) 'we should always take an appropriate level of Pred to control PMR (and especially GCA) symptoms and taper gradually', I'm also aware that the magic Preds can also bring, for better or worse, a Host of Side Effects including (you guessed it..?) the Woozy / Dizzy symptoms I'm currently experiencing. And, yes, I HAVE read the instructions on the packet

Or.. is this possibly about the complex HPA Axis sorting-out and slowly re-calibrating itself - with some glitches (i.e. the Dizziness etc) along the way?

If you've read this far in yet another long and convoluted (but this time Serious) MB Post, you deserve a Medal. On the other hand, it might just resonate with a few of You Lot who've experienced the PMR / Pred Dilemma no. 86 too?

Answers / Thoughts on a Postcard (or i-phone / tablet / drone or carrier pigeon) please? Whatever way suits You...

That might keep you busy in between working-out the difference between Fact and Fiction in my usually silly Ramblings here?

Best wishes and sincere Thanks, as always. You are a great and very generous Lot through thick and thin - Honest!

'Uncle' MB

[PMRpro Ambassador]

Have you got a sphygomanometer? If not - spend a few quidlets on one and check your BP on occasions and especially when you have these episodes (it is simpler than trogging along to the GP/pharmacy.) What you describe could be POTS (no, not pottiness though with you it could be that too) - Postural Orthostatic Tachycardia Syndrome - and the simple answer is: stand up more slowly!!! Typical is a fall in BP when changing position from sitting to standing - which you can check if you are reasonably dexterous...

[markbenjamin57 in reply to PMRpro]

Thanks PMRpro. I had a hunch that it might be (low) blood-pressure related - although contradictory to the idea that the Pred often increases BP? My BP has always been normal, Mmm... but I'm sure you've hit the nail on the head.

Yep, I'll get a sphygo, mer, er,thingymebob and do some home-based research - and quicker / easier than trying to get through to my GP by phone

As for standing-up more slowly - I'll have to work on that in the meantime. But I also have a hunch that I could / should safely be doing MORE physically now the PMR symptoms have subsided - and that could be part of the low BP equation too? You tell me...

Many thanks for your invaluable wisdom - as always -)

MB

[Hindags in reply to markbenjamin57]

As usual, PMRpro has given you excellent advice. I have a question. Do these spells only occur in the morning or do they occur when rising from a horizontal or even seated position at other times of the day.

Please DO SIT up on the side of your bed before getting up slowly. I've been hearing too many sad tales lately of people falling and the consequences they suffer.

[markbenjamin57 in reply to Hindags]

Thanks Hindags :-).

Ok, Yep. For a few days recently: this happened on getting out of / sitting on the edge of my bed after sleeping peacefully overnight. And then, a couple of times, when getting-up from a chair and briefly ascending a low (2) step-ladder, as was the case today. Whooo-hooo-steady now!!!

I know what you mean about possibly of fainting and falling etc. I was Very conscious of the risks and nearly didn't dare to drive the Limo as a result.

On the other hand: I'm feeling much more stable tonight and just Hope this was a 'Blip' due to the HPA Axis / Pred balance / PMR Process etc gradually sorting themselves out. Who knows?

But, as usual, I'll keep you all posted on Progress either way.

Best wishes and Thanks

MB

[PMRpro Ambassador in reply to markbenjamin57]

You may call it a sphyg - for obvious reasons But I though if I just wrote that people might not be familiar with the term and I was darned if I was writing out a description of the device!!!

But it does sound like a dose of hypotension - your BP is at its lowest overnight/first thing in the morning and if it is a bit low anyway asking it to adjust quickly is a bit unfair. The hot weather won't help - vasodilation lowers BP. It is if it happens while sitting or if it gets worse you should get some medical advice. I imagine you aren't on any BP medication? If you are, lowering the pred dose may contribute to the dose you are on being too much and sending the BP too low.

[markbenjamin57 in reply to PMRpro]

Ha ha! No, Never been on any BP meds. Historically my BP has always been normal, tho whilst on the Preds it has usually been a bit raised. Question is: might the low BP (if indeed so) be due to taking a HIGHER Pred dose than necessary (3mgpd), given that the PMR pain and stiffness have dramatically subsided / PMR is possibly burning out in fits and starts? You might remember I had the same experience last year (woozy, dizzy etc) at 7.5 mgpd and so adventurously dropped to 5 mgpd to test my hunch around the same thing (i.e. side effects of Pred worse than PMR symptoms). Result: felt miraculously better at the lower dose for a couple of months. Then, a similar experience again recently at Zero for some weeks... Yours sincerely, Confused.com

[PMRpro Ambassador in reply to markbenjamin57]

More likely to be adrenal function messing about a bit still. Given the weather - are you sure you aren't dehydrated? Low adrenal function is what causes low BP.

[markbenjamin57 in reply to PMRpro]

Ahh, I see - thanks Don't think I'm dehydrated and the weather's much cooler here now, so as you say it might be the adrenals jumping around a bit. We'll see.. Main thing is, very little pain and stiffness for a couple of weeks now. Quite a novelty.. )

[Blearyeyed in reply to markbenjamin57]

Do you also feel slight palpation during this dizziness and nausea?

Are you also experiencing it when you lie down at night to sleep for awhile.

The way I describe the laying down dizziness is similar to the whoosy, head swim that you used to feel on going to bed after a few too many vinos ? ( a memory you will have to get from your distant past , I am sure, 😀 )

If so, it definitely sounds like POTs, it can happen without changes to meds or stress, as has been said , it is, in simplest terms, your body blood pressure circulation being sluggish and racing to catch up with the change in activity.

General advice for POTs, is to drink plenty of water, a tip is to have a good , quick drink, like half a cup before making change in position after a while.

Take a moments pause to adjust , between lying and sitting, sitting and standing, standing still and moving , if you have been still for a while , after the water to stop it happening.

You also need to make sure you don't bend up and down to quickly , and remember no sudden up and down head movements ( looking chin down then jerking up will also do it)

You need to exercise gently regularly to help boost the system ( when you do remember sudden changes in position, like standing after swimming a few laps , may make you dizzy, tread water for a bit before standing up)

Be careful in the shower , the closing of eyes and hair washing can bring it on and often can make you feel nauseous and cause your arms and legs to tingle or go red , or cause the sweats after you finish. Without your head under the water, spend alittle time standing eyes open in the warm shower to adjust from activity then allowing cooler water on your body so your body can slowly adjust to temperature , movement changes. It is better to sit to dry off, then wait before standing to dress.

With all the fluids you do need to check your salt intake, but you have to consider your kidney health on meds too, so if you are no salt , adding like a quarter teaspoon a day could be beneficial.

As a say, this can be brought on by many changes, not just medication changes , especially if you have any form of heart, head , circulatory or lung issues,

This has been helping me and is general advice on POTS dysautonomia sites from medical peeps and sufferers.

It sounds like you are doing well so I hope these tips will help you and help prevent any of those nasty flares of pain that would put back all your good work

[markbenjamin57 in reply to Blearyeyed]

Greetings Blearyeyed

Thanks for joining in with this one. Yep, all of the symptoms you describe, except the palpitations. And.. I have been spending a lot of time at the PC recently, maybe not helping my posture and / or contributing to POTS? Not sure about salt intake, but I do avoid sugar / sweet things.

I've always been very fit and active, although I did have a Myocardial Infarction (Heart Attack - what.. ME?!) out-of-the-blue about 15 years ago - later discovered in an Angiogram to be a result of un-diagnosed (at the time) Viral Myocarditis. In my recovery period (fortunately no cardiac damage back to 100% cardiac fitness - I was / am incredibly lucky) I DID have a few similar dizzy episodes, but nothing else until these last few days.

You remind me that, of course, PMR symptoms are due to a form of Vasculitis - and this might also feed in to the Dizzy symptoms equation? Mmmm...

Thanks for the very sensible advice, I'll defo put that into practice.

Best wishes and thanks again

MB

[Blearyeyed in reply to markbenjamin57]

Good luck with it , it is helping me.

Just remember , don't add the salt until you're drinking 8+ glasses a day, or if you have kidney issues from medication.

Drink mineral water rather than tap, it has some trace elements of the salts you could be flushing .

The key is to get in a raised position, especially first thing in morning, and drink half small bottle of water before moving pretty quickly, when then sitting, take your morning meds or just drink another quarter quite quickly, when standing finish the bottle , then off to the loo, with all the added hydrating you might have to!!😂

Drink down some water before laying to sleep too, while sitting in bed it helps , and maybe read a book for a bit before lying down totally.

Just get used to keeping a bottle of water with you all the time and drinking before changes in activity and especially before and during sport, walking etc.

At least you know the odd vino isn't taking its toll!!

[markbenjamin57 in reply to Blearyeyed]

Thanks again B, this is all very useful stuff. I'll keep you all posted..

[Pat9442 in reply to PMRpro]

Exactly what I would have told Uncle MB to do! Not everything can be laid at the Pred door

[markbenjamin57 in reply to Pat9442]

I remain open-minded, as always...

[Omanain in reply to PMRpro]

Would that be what I call my blood pressure machine do you think? I bought it for £15 on the internet and we checked it against the doctors machine to make sure it was accurate. I get similar dizzy spells and if I can check in time my blood pressures can be under a 100 over 50, it soon returns to normal which for me is about 125 over 60. I have learnt to get up slowly as I really do not want a fall.

[PMRpro Ambassador in reply to Omanain]

Even 60 is pretty low! Wonder what is causing it to be so low.

[DorsetLady PMRGCAuk volunteer]

Know where you’re coming from at the moment.

Since my knee op, my BP has been on the low side - fairly normal occurrence apparently- but it’s nearly 5 weeks now, and getting a bit of a pain!

Ironically I’ve been treated for high BP for the last 15years, so it’s a bit strange for me!

As PMRpro says get up more slowly, and when getting out of bed roll on to one side and then gently sit up rather than just sit up!

The nurses in hospital kept telling me I’ve had the BP of an 18 year old....my response “pity I haven’t got the body as well” . Ahh well, can’t have everything!

Might be worth trying GO Hydro tablets made by SIS (available in Waitrose & Sainsbury’s) recommended to my DIL by her GP as she has low BP.

[markbenjamin57 in reply to DorsetLady]

That's interesting DL, thanks too. As for Rolling, I'm normally more of a Springer (like a Spaniel, ha ha?). But maybe time to make some adjustments - for now at least.

Hope the knee is settling in

[ConventCassie in reply to DorsetLady]

I had surgery too! I didn’t get the low BP How does that work?

[DorsetLady PMRGCAuk volunteer in reply to ConventCassie]

Who knows?

[PMRpro Ambassador in reply to ConventCassie]

What sort of anaesthetic?

[ConventCassie in reply to PMRpro]

Was just day surgery. General anesthetic & laparoscopy inguinal hernia repair. For the life of me can’t figure out how with a Prednisone belly & adhesions from 5 c-sections they could see anything.

[PMRpro Ambassador in reply to ConventCassie]

I imagine DL had an epidural anaesthetic - and that has a side effect of lowering BP which isn't usually seen with GA. The effect can persist for some time.

[ConventCassie in reply to PMRpro]

Maybe we should get an occasional one? I’ve had a few; probably saved me till I was older.

[PMRpro Ambassador in reply to DorsetLady]

My German GP told me to try a miniature bottle of bubbly (Sekt there) in the afternoons - better than any pills he said! Tasted better too!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Now I like that! But you knew I would approve. 🥂

My DIL’s GP suggested sparkling water 😳.. ...no contest really.

[ConventCassie in reply to DorsetLady]

I’ll do both-just to be safe.

[Sandradsn]

I have absolutely no idea but bp did come into my mind🤔Probably quicker to go and buy a bp machine thingy than trying to get a Gp appt☺.

[markbenjamin57 in reply to Sandradsn]

Yep Sandra - IF I can get on my feet in the morning without swaying precariously, tumbling and crushing Tedski to death in the process? Ohhhh...!

But seriously, feeling Massively better tonight after a busy day. So, maybe a temporary Blip? We'll see..

MB x

[BonnyQuine in reply to markbenjamin57]

Glad to hear you're feeling better. Hope it has lasted.

Such a variety of symptoms, and all sound familiar - I identify w 'confused.com'.

Am always hoping, whatever & whichever, that it's just a temporary blip.

Think I'll have that on my headstone - "Thought it was a temporary blip".

Good - that's one thing settled!

Cheers.

[markbenjamin57 in reply to BonnyQuine]

Thanks Bonny, always amazed at how many of You Lot watch out for others here. Yep, hopefully a blip. You remind me of Spike Milligan's Headstone: "I told you I was Ill.."

[BonnyQuine in reply to markbenjamin57]

[ConventCassie]

Blood Pressure was my first thought. I went to work the other day & mine was 93 (the top one) after taking my BP med. I’m experimenting with not enough hydration & the high BP from coffee at night. It’s all so confusing. Bought the books on salt and even more confused. I think I’ll stop reading

[markbenjamin57 in reply to ConventCassie]

Thanks Cassie, I agree with you about the 'so confusing' bit...

[Hidden]

You could also Google 'Adrenal deficiency' just to eliminate that. Nausea is listed as a symptom. ?

[markbenjamin57 in reply to Hidden]

Yep Pete, I'm on the Case. But I doubt the Adrenal Insufficiency Theory at the moment since I'm generally lively and full of energy (+ little or no DF recently). We'll see...

[Hidden in reply to markbenjamin57]

Well good for you Mark. In contrast, for the last 5 days, perhaps since I went back 3mg up from 2.5mg, I have been in a state of really dreadful deathly fatigue. Can't make it out because at one stage on about 4mg I felt as it that the fatigue stage was over. The last 2 days however have been dreadful. Just needed a sleep during the day time about 4 times. Just doing the on job or two and then crashing out again.

Happy days 😨 don't really know what's going on because the pains are really not there. 🤔

[markbenjamin57 in reply to Hidden]

Sorry to hear that Pete - but at least you / we know what's going on with the DF, i.e. the body / adrenals are probably still sorting themselves out and even the slightly higher Pred dose isn't enough in context (only my theory). I think all you can do is roll with it, give it time and / or nudge the Preds up a little more to compensate? But best see what the Aunties say..

[PMRpro Ambassador in reply to Hidden]

You may be generally OK - but it can take up to a year for adrenal function to get itself totally sorted out and all sorts of things can upset the balance.

[Hidden in reply to PMRpro]

Yes I am sure you're correct. I suppose after 4 years on pred I'm getting a bit impatient. Nothing compared to your situation though

Pete 😍

[markbenjamin57 in reply to PMRpro]

Too true...

[Sandradsn]

It's a horrible feeling when the room spins, I used to get that first thing in the morning but that was when I was working still and highly stressed out.Have you been overworking ? Too much coffee/wine/Chocolate/cheese(random question)😁😂?

[markbenjamin57 in reply to Sandradsn]

Ohh, don't I know it?! Only thing is: little or no conscious Stress, not over-working, lots of ++ things to look forward to (including the PMRGCA Members' Day on 8 Sept).

Also: no variation to my usual consumption of Coffee, Red Stuff, Fags, or any Stress Factors that I'm aware of.

That's my Dilemma: What, exactly, is causing this Dizziness if nothing else has changed? But, maybe, PMRpro and others have hit the nail on the head re. BP variations?

More later..

[SheffieldJane]

Hi Mark, I have experienced intermittent dizziness too, with absolutely no reason for it other than Pred. I would however have the usual checks eg blood pressure, blood sugar etc. You may simply have overdone things and need to take it easy. Moving is hugely stressful, physically and mentally.

These symptoms still freak me out after all this time, probably because doctors frighten you about steroids at any given opportunity. It will probably disappear, as mysteriously as it appeared. Chin up old boy!

[markbenjamin57 in reply to SheffieldJane]

Thanks J.

I'm not conscious of having done any thing different from 'Normal' (whatever that means!) despite the exertions of the move to the new South Wing at BM (Benjamin Mansions). In fact, I quite enjoyed relocating to a quieter part of BM with fantastic views and some Peace and Quiet. The only downside is the subdued roar of the incoming tide at the worst of times!

I can relate to 'freaking-out' about the symptoms of / worst fears around PMR (and GCA especially). These are such nasty and unpredictable illnesses. And, as for the (some..?) GPs and their attitudes to Patient Care and Empathy: I agree with you 100%.

But, all considered, I'm Ok. And, as usual: On, and Forwards!

Try to keep a steady Head - things will most probably work-out ok for you too

[SheffieldJane in reply to markbenjamin57]

You are really quite nice when you want to be, thanks!

[markbenjamin57 in reply to SheffieldJane]

I try...

'This, too, will Pass'?

x

[Hidden in reply to SheffieldJane]

Come into my web said the spider! Only kidding if Mark is watching 🤗🙂

[markbenjamin57 in reply to Hidden]

[SheffieldJane in reply to Hidden]

Yes, I was tentatively waiting for the punchline, having commiserated over his joke misfortunes in the past. Old Wolverine!

I have responded to your fatigue on another thread. I have been there, several daytime naps and 13 hour night sleeps. To a former insomniac ( work stress) it was pretty amazing. It passed though and although I still get tired it is more normal. I think a significant part of me is feeling better, mood, no real pain. I think Pred ill-effects remain though, breathless, a bit toxic and tired - then short bursts of well being. Perhaps we come to life in fits and starts then have to gradually build up our physical fitness?

[Hidden in reply to SheffieldJane]

"fits and starts" yes, that sounds like me as well. Well when I was a lad my mother used to say if I made a face I would stay like it, so maybe now if I smile, I will stay like it. Can only hope 😁

[bunnymom in reply to markbenjamin57]

I do think Jane is right. We get well in fits and starts and there's lot of sorting out we do along the way. A week ago I had a day where I felt almost normal and then had the start of a flare at the end of the week. 5 extra took care of it nicely but was hoping I was past that. I do also think sometimes the meds might be causing more problems that the disease but thank God for relief. I've been on the journey for 2 and a half years. Currently at 5. Maybe I should dress my tires today? Thanks to you they bother me now 😊

[Canygirl61]

I'm going to agree with everyone else, as I too suspected blood pressure related dizziness. That being said, pay very close attention to EXACTLY what you're feeling, and what triggers the dizziness. Is it only upon standing? Does it ever happen when you roll over or turn your head, when laying in bed? (Is it lying or laying?) Any other type of change in position? If so, there's a possibility of Benign Paroxysmal Positional Vertigo (BPPV) which I've suffered from/with for years. And, it can be treated by a physical therapist. On another note: Doctors dislike when patients tell them they're feeling dizzy—it's a broad and generic term. Hence, you need to be very accurate in describing exactly what it is you're feeling when you say you're "dizzy." Hope this wasn't too preachy. It's just that I've been to numerous specialists for vertigo, and know first hand what it's all about. 👍

[markbenjamin57 in reply to Canygirl61]

Greetings and Thanks Canygirl

It's late here / now: but I appreciate and agree 100% with your comments and will get back to you tomorrow. To be honest, I'm not overly-worried about this hopefully temporary Dizziness: but it's good to compare notes with others who might have experienced the same, or similar things.

Thanks for your kind and thoughtful input - not at all feeling 'preached at / to'!

MB

[markbenjamin57 in reply to Canygirl61]

Hi again Canygirl. Yep, very fleetingly when standing-up quickly, looking upwards (e.g. at the sky), climbing a couple of steps on a stepladder (best not attempted at the mo), sometimes when lying down / turning over etc. A couple of you have suggested BPPV or POTS - never heard of either! But I agree - a precise description of the symptoms will help my GP to pinpoint what's going on (or hopefully not..).

Thanks again

[Canygirl61 in reply to markbenjamin57]

The “looking upwards” is more of a clue towards BPPV. The tiny crystal-like structures, that should stay put in the bottom of your ear canals, can float out of place and into the canals. This causes the sensation of dizziness—sometimes violently (like mine). A physical therapy maneuver called “Epley Maneuver” can help reposition the “crystals.” There are self help videos online; however, I caution against trying it out by yourself— though many (including me) have done so. In trying a maneuver at home, one may inadvertently cause more problems by sending the crystals into the wrong canal. If done properly, it can feel miraculous. In my particular case, my vestibular system is damaged, and I often feel dizzy/off balance in everyday life—sucks. The doctors think my vestibular damage is from the autoimmune disease.

Best of luck to you! It sounds like many here suffer similarly.

[markbenjamin57 in reply to Canygirl61]

Crikey - this gets more interesting by the minute! When I think more about it, yes, 3 or 4 of these brief episodes of dizziness followed looking upwards.

It also reminds me, I haven't had my ears de-waxed for a couple of years. My hearing seems ok (but of course I probably wouldn't notice a slow deterioration). Might this also play a part..?

Thanks again Canygirl

p.s and Greetings from across the Pond

[Canygirl61 in reply to markbenjamin57]

Greetings to you 👋

I don’t think wax can cause dizziness, but I’m not an expert on waxy ears. 😬

Our vestibular system is complex. If I were you, I’d definitely get a professional opinion. And, just to make matters worse, not all practitioners that administer the Epley Maneuver are equal in ability 😑. However; that should not stop you from seeking help. Look for vestibular rehab clinic or vertigo specialists. Amazingly, over time, our brains get habituated to the imbalance and adjust. 👍

Best,

Claire

[markbenjamin57 in reply to Canygirl61]

Thanks Claire, will do. Nice to have this dialogue with you

[Purplecrow]

You might Google "Benign Positional Vertigo".

It can come on rapidly, and feels disorienting and downright freaky. Can be treated easily.

Sorry if this reply comes through more than once, sometimes it just happens.

[markbenjamin57 in reply to Purplecrow]

Thanks Pc, BPV makes a lot of sense. Hope it's only temporary tho...

[Purplecrow]

Sorry to duplicate Canygirls post. Shes faster than I.

[markbenjamin57 in reply to Purplecrow]

[markbenjamin57 in reply to markbenjamin57]

No worry, sincere thanks to you both..

[PiersC]

My reply on a homing elephant via the Andes (Alexander reference!) - I am so glad this forum is here and I get to hear about these things - yes, I have been getting very slight dizziness - not enough to topple, but enough to go 'whoo, hold on harry, get a grip..' I shall now take that more seriously and look at the BP side (mine is normally fine).

Also - that slight gyro topple of mine was on standing and moving 'suddenly' - not that I do anything 'suddenly' anymore - and that leads me back to Mounsieur Alexander - maybe there is a mechanism in his technique to lessen the effect - moving with the right enegy and not leaping about like you sat on a pin.

Shame we cannot have a 'PMR monitor' like a BP monitor that can tell us on a day-to-day/hour-to-hour basis exactly how pred to have. One day, maybe.......

[markbenjamin57 in reply to PiersC]

Piers. It's late at night here in the UK, but more later. Just to say: I agree with you on all counts

[PMRpro Ambassador in reply to PiersC]

It isn't necessarily just generally low BP - it is the body readjusting to a different position where the heart has to beat harder to send the blood round.

[markbenjamin57 in reply to PiersC]

Ha ha Piers, nice one! I agree with you about the forum. Interesting that you have a similar thing, your description is spot-on.

Now a PMR / continuous 'cortisol level monitor' WOULD be a breakthrough. I've also often wondered: if the medics can do it with things like pacemakers and all manner of other 'in-body' monitoring equipment, surely something could be devised for Us Lot? That could revolutionise the often imprecise science of Pred tapering...

[Hidden in reply to markbenjamin57]

Us Lot is the problem. Unfortunately or fortunately as the case maybe, in the scheme of things we are not a lot and in other complaints i.e. diabetes there are many 'lots' so they, who ever they are, spend their research budget on those complaint so nothing left for Us Lot. As you know Mark, it's all a question of funding. Here's an interesting one closely related. My garage door is white and fairly flat. I was cleaning it the other day. So my site line could only see an expanse of white, nothing else. This situation made me lose my balance and I nearly fell over. I wasn't giddy it just my brain and balance mechanism could not coordinate. As you know the ears to some extent also control our balance. 🤗😃

[Hidden in reply to Hidden]

Here's another observation. When I was training for my private pilot license, I hand no problem with giddy feelings or feeling sick when flying a small aircraft. When I developed PMR and started on prednisolone, I found I had to give up flying due to air sickness. I didn't have the problem before the medication.

That's just another fact for the melting pot. 🤔

[markbenjamin57 in reply to Hidden]

What a B****r...

[markbenjamin57 in reply to Hidden]

I know what you mean Pete. Many of Us Lot also have other health challenges as well as PMR / GCA. So, at our time of Life it must be very difficult for the medics or researchers to differentiate between them. Ohhh... And, as you say, who will pay for it?

[PMRpro Ambassador in reply to markbenjamin57]

They probably could - but it would be pretty invasive,,,

[DorsetLady PMRGCAuk volunteer]

Just another option to throw into the pot - labyrinthitis. Similar to BPPV. Can come on apparently out of the blue- remind you of anything else?

Doesn’t sound as serious as I know it can be, but like other illnesses it has it’s degrees of debilitation. Might be worth a google.

[markbenjamin57 in reply to DorsetLady]

Thanks DL, I'm on the case. Ironically, just today I've felt a lot less Dizzy so it might just be a Blip. As always, we'll see..

[Longtimer]

What you describe is what I have all the time...horrible...as PMRPro said test the BP as my doctor did with me sitting then standing to see if there was any change....it didn`t change with me.....but at least you will know that much....

Good luck....

[markbenjamin57 in reply to Longtimer]

Thanks Longtimer, work in progress I think?

[Jen47]

Hi Mark

I very rarely send posts, but I follow the site and enjoy your light-hearted posts. I've been dogged with PMR for well over 4 years complicated by slipped discs. The latter can kick off inflammation and never know which is leading which. I never get below 3 mg pred.

I digress - recently, I had the dizziness that you describe and suspected low blood pressure. I take meds for high blood pressure and on a recent trip to Germany, I didn't take enough with me. I bought some locally, although the pharmacy didn't have quite the same. They assured me they would do the same job. Hence my suspicions, so I saw a GP. My blood pressure was very good, but he looked in my ears and diagnosed labyrinthitis - an inner ear infection I believe. He prescribed Stemetil tablets, which seemingly work on the brain to con you into thinking there is no problem. Like all of these meds which work on the brain, they made me drowsy in the extreme - deadly fatigue plus, so I only took 2 then discarded them. The dizziness resolved itself in a couple of weeks.

This is probably all irrelevant to you, but it's another perspective. Whether or not Pred or PMR caused the ear infection, who knows? Best wishes and keep the lighter side of things coming.

[markbenjamin57 in reply to Jen47]

Greetings Jen

Thanks for your kind comments, glad you enjoy my ramblings (or is it rantings!) :-). Also, your thoughts about the dizziness - it's all relevant! Down to my GP tomorrow I think, just to get his opinion too.

Best wishes and keep smiling..

MB

[BonnyQuine in reply to markbenjamin57]

Re Stemetil: I've had them in the past. They're used for nausea too, and I've considered resorting to them currently. Haven't yet, but will if necessary.

If you take one at bedtime, it'll help you get to sleep, and you'll feel ok on waking. DV!

[Telian]

Hi Mark

Loads of advice for you, I suffer the same and mine is usually BP but lately low sugar, don't know why but pleased to say tests reveal nothing untoward. My advice would be to get these two checked out in the first instance. I do get the dizziness when I'm reducing and these are part of my withdrawals, after many months/years of trial and error I know what I have to do to get through it. My first thing is to really take things steady and accept it will take me . at least a week+ maybe longer before they subside, if they don't then it could be a slight flare. I find as I get lower, currently going from 4.5 to 4mgs, the symptoms are more obvious and it is quite easy to want to up the dose. I prefer to give it a couple of weeks and they do subside eventually. It's taken me since April to get to 4.5 to be symptom free and today I've had to pluck up courage to start the next reduction.

All the best Mark and hope you get to the bottom of it soon. I'm looking forward the the 8th too and hope my dizziness subsides before then - otherwise I'll not be able to jump up and down to hackle you will I?!!!

[markbenjamin57 in reply to Telian]

Hi Telian

Thanks, lots to think about and get checked out. That said, the dizziness has subsided for today at least.. Ohhh! Next?

Re. the members' Day: couldn't wish for nicer people to be heckled by - look forward to meeting you all

[Telian]

You'll get there....make the most of today but don't overdo it! it's key...

Hope we do get to meet up, with such a large crowd who knows as we won't be wearing our pseudonyms will we! At least we all know who you are! Up to us to decide if we want to meet you!! Ha Ha Ha!

Sorry spelling error meant heckle... that's the steroid reduction it's already wiped out my brain cells, they like to go into oblivion at these times....

[markbenjamin57 in reply to Telian]

I agree Telian. Yep, it'll be fun trying to link-up people's avatars with your real names. Recipe for Brain Fog I think! Either way, it'll be a pleasure I'm sure. I got the 'hackle' bit. Freudian Slip perhaps..?

[Telian]

Exactly, I couldn't think of his name. I'm cooking a full roast dinner so priorities here at the moment...the roasters are looking delicious as usual - our Sunday Treat....

Terri !!!!

[Jemsea]

Hi Mark

Just another post to add to all the other wonderful bits of advice. I experience dizziness from time to time, even before PMR. It is almost always connected with my BP or vertigo. I am on high blood pressure tablets, although my BP intermittently goes from high to low quite frequently. I am also on Beta Blockers, having suffered A.F. after surgery last year. BUT, like you, I am on 3mg.pred. and feel much better than when I was on 5mg. or 7mg. plus more energy. Also If I rest too much I don't feel so good, but if I do things, walking, playing golf, even some housework, I feel much better. I am still getting blurry vision, but when I have been 'doing' instead of 'resting' it is less so. I have wondered also if my adrenals are trying to tell me that they are getting better. I think you are right in your thoughts that you should 'do' rather than 'not do', but only the things you enjoy. But, check your pulse and B.P. If you haven't a monitor, maybe there is an app. on your mobile. You can check your pulse without either of course.

[markbenjamin57 in reply to Jemsea]

Thanks Jem. All of these responses are really helpful - and probably more comprehensive than my GP could offer in a rushed 5 minute consultation! I agree, things can seem to improve as the Pred dose gets lower, albeit in frustrating fits and starts. As the Aunties and a few others of You Lot suggest, the dizzy spells are quite possibly linked to the stuttering adrenals at these lower levels? I agree also about doing a bit / being active within reason - and Yep, only enjoyable stuff. Even Clever Clogs MB is starting to differentiate between what's enjoyable and what isn't! Will keep you all posted one way or another... thanks again

[yogabonnie]

Best advice I've been given. Before getting out of bed or sitting up wiggle waggle your feet for a bit, roll them around, pump them 50 times. Then sit on the edge of the bed, get your equilibrium then get up! When my husband's heart went down to 30 beats and he was fainting etc, and it STAYED there in the hospital..while we were waiting (hours) I decided to pump his feet and BOOM his pulse when right back to 72. They said that was the reason.. but in the end had to have a pace maker as I wasn't about to be standing by his feet at all times! haha. He's fine. BUT good advice to get the blood circulating BEFORE you get out of bed.! even for those middle of the night bathroom runs!

[markbenjamin57 in reply to yogabonnie]

Thanks bonnie, good idea..

[karools16]

MARK, I AM NOT A GULLIBLE PERSON, BUT THAT FAKE CAR THEFT GOT ME.

How will I ever believe you again? NORMAL? Don't know the meaning any more...me that is.

[markbenjamin57 in reply to karools16]

Ohh, Noooo karools! A bit too realistic..? A Wind-up too far? Sorry! I'm going to have to eat some Humble Pie here - and at the Members' Day or I'll probably get chucked out before I start my bit.

[karools16 in reply to markbenjamin57]

i CAN'T GET TO THAT MEETING, BUT AM HOPING YOU'LL ALL DO A PHOTO FOR THIS FORUM.

[markbenjamin57 in reply to karools16]

You Bet..!

[Grants148]

Hello Mark,after all the previous very informative posts,there is nothing l can add except to say l hope you feel better soon .

[markbenjamin57 in reply to Grants148]

Thanks Grants. Well, still feeling pretty good PMR symptoms-wise (i.e. absence of them). I'll be on the case tomorrow with my GP about (the causes of) the Dizziness: but after all of the helpful input from You Lot I'm sure all will be well.

Thanks again - you are such a nice and thoughtful Lot here.

MB

[Pmrruth]

Hi all. Enjoy reading your comments every week. The dizziness thing is concerning me at the moment. 2 years before I was diagnosed with PMR, I was experiencing frequent dizziness and tried Stemetil - made me sleep all the time and had no effect on the dizziness ; then the gp thought it might be benign paroxysmal vertigo and I experienced the manoeuvre previously described - no real effect; then I went to a consultant who tried everything he could think of until he referred me to a hearing and balance specialist who prescribed 3 x daily balance exercises which gave me some relief . At the same time I was experiencing a twitchy eye and palpitations . Eventually, I was diagnosed with PMR because of all the aching and fatigue and went into Pred. Hallelujah, relief! The aches and pains went and also the dizziness, palpitations and twitchy eye. HOWEVER, are you all still with me?!, now I'm trying to reduce from 5 to 4.5 mg and the twitchy eye and the odd palpitation are back. I previously tried this reduction earlier in the year and the dizziness also came back. I have been wondering if all these extras are something to do with the production of adrenalin and a faulty adrenal system? I feel so much better on a lower dose in myself but hate the dizziness etc. Blood pressure is fine by the way. Just thought my story might throw a different light on this!!

Thank you all, you've helped me So much over the last 18 months.

[markbenjamin57]

Greetings PMRruth, thanks for your reply.

I'm no expert, but from what I've learned here, your comment (q):

"I have been wondering if all these extras are something to do with the production of adrenalin and a faulty adrenal system? I feel so much better on a lower dose in myself but hate the dizziness etc.." probably sums things up.

I tend to agree, from personal experience. That said, we all have very different health contexts, so the best advice is always to check things-out with your GP - as I will with my (possible) BPV tomorrow. We'll see...

I'm sure that forum Aunties will also give their input soon. In the meantime, try to keep smiling on the Journey

MB

[Pmrruth]

Thankyou! Am seeing the GP in a couple of weeks so hope they can shed light on the symptoms. Keep Smiling!