Dizzy spells

[Penguins3]

Thank you for replies, it helps to know that others have dizzy spells, guess it's just another symptom to cope with. I get 'brain fog' too and must correct myself - I have had PMR for a year next month. Having GCA when I complained to rheumy about shoulder pain it was decided I had PMR, started on 15mgs pred with instructions to decrease but with the pain persisting and unsure of what dose to take saw gp who didn't seem to know anything and wrote to rheumy and nothing came of it. So I plodded on. Phone consult with nurse practitioner at hospital who consulted a dr and told me to have x-ray in case of degenerative disease, I didn't agree with her but was told to decrease pred to 5mgs when she will ring me again. I have chased up the x-ray results to no avail. I am not as bad as some people I have read about on here so feel I should not complain but it is so good to talk to people who understand.

[PMRpro Ambassador]

Others DO have dizzy spells - BUT you cannot assume they are due to PMR or even pred. Mine were due to episodes of bradycardia where my pulse fell to under 15 per minute. When it is that low, you can all too easily black out and if that is on the stairs or while driving it is potentially extremely dangerous, Mine was due to the autoimmune part of PMR having damaged the electrical system in the heart - I now have a pacemaker.

As far as the PMR symptoms are concerned, 15mg may not be enough to manage the inflammation and you may need 20mg, but the nurse is also quite correct in you needing other checks since inflammatory arthritis can also present looking just like PMR. But at any stage, if a patient has pain you don't reduce the dose if pain returns! You see the patient f2f for a start.

I really had thought a couple of years ago that things were improving, albeit not much and far too slowly. But maybe not ...

[Stills]

note my diagnosis is adult onset stills disease which for me manifests as rheumatoid disease. Diagnosed in 1979 aged 17 now 62 and major drug free. I’ve always had dizzy spells and in 2022 was told it was orthostatic hypotension and prescribed Prochlorperazine. I also get migraines and the drug is good for that. I’ve always had low ishBP and doubted the OH diagnosis. Stills can cause brain fog and I have some very foggy days but the dizziness stands apart from that. The worst times I can describe as helicopter head, it literally feels and sounds like I have a small helicopter in my skull and can only sit and wait for it to pass, it’s quite regular but transient and different altogether from migraines. I think it’s just one of things autoimmune conditions throw at us. Wishing you good days.

[Pixix in reply to Stills]

Snap…mine is orthostatic hypotension, & I have prochlorperazine. Nothing to do with my PMR at all.

[Stills in reply to Pixix]

Does your vision go when you get a spell?

[Penguins3 in reply to Stills]

No it doesn't thank goodness. As well as a few seconds feeling dizzy I am often unsteady on my feet

[Pixix in reply to Stills]

Only if I have a migraine,where the vision issue is usually the first thing that happens…often I can suddenly see only half a person, or half the writing on a page, for example…but not just through hypotension.

[Stills in reply to Pixix]

Migraines are horrible and last for days and then return quickly and then bizarrely don’t reappear for weeks, I think these are cluster migraines but cannot identify a trigger. Usually my vision is only light sensitive.

[Pixix in reply to Stills]

My mother had classic ones, which laid her out for 4 days, had vision disturbances, head pain, sickness, all of it. As she got older she had cluster migraines. But the medication has improved since then. I had one classic migraine, aged about 14, then none until 30-something, & now have years without them, & then a cluster of them. If I take tablets just as soon as it starts, I can usually keep going quite well. Compared to days in bed!! It’s a horrible thing to have, my sympathy to you. S x

[Stills in reply to Pixix]

Thank you, hope you’ve enjoyed the weekend

[Pixix in reply to Stills]

You, too. We’ve been looking after a friend’s dog/puppy, as they have a bad family crisis right now. It’s a bit exhausting during a flareup of arthritis, bursitis, damaged ankle & polymyalgia flareup, but she’s gone home now! I’m exhausted, & hoping for a lie in tomorrow! Weather has been wonderful here, though, & the autumn colours in the forest are beautiful. Hope yours was good, S x

[Hugh_Marc]

I don’t have dizzy spells as such, but if I close my eyes standing up I’d lose my balance. Having spent 20 years of my life working on roofs I can hardly climb a set of steps now, let alone a ladder. I had put it down to getting older, but am now wondering if it’s related to PMR.

[PMRpro Ambassador in reply to Hugh_Marc]

Have you had it checked by your GP?

[Hugh_Marc in reply to PMRpro]

No but I’ve always had low blood pressure & can get light headed especially when I’m hungry.