does anyone else with giant cell arteritis have v... - PMRGCAuk

PMRGCAuk

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does anyone else with giant cell arteritis have vertigo?

musicalJ profile image
10 Replies

Having been diagnosed with both polymyalgia rheumatica and giant cell arteritis and put on high dose prednisolone I have been suffering from vertigo. This is often incapacitating in the mornings, when I can do nothing but sit with my eyes closed, but usually improves around lunch time and then carries on getting better, so that I am usually active in the afternoon and at my best (possibly able to walk without a walking aid) in the evening. Has anyone else experienced this?

musicalJ

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musicalJ
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10 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Vertigo is listed as a side effect of Pred….if you speak to GP they can prescribe anti-sickness tablets which may help. They may also be able to recommend exercises, but there are plenty online

Grammy80 profile image
Grammy80

I just wanted to add to DL's response...I'd had vertigo infrequently before GCA. It was more frequent when I was on a really high dose in the beginning. Initially, I took Meclizine which was effective, but with all the meds~~~eventually, I watched the Epley maneuver and it worked; excellent videos on YouTube. Wish you well~ 💞

Temoral profile image
Temoral in reply toGrammy80

This matches my experience. I also didn't react well to the meds, and used the Epley maneuver. Now on 4.5 and no further instances of vertigo recently. Hope you find a solution to suit you.

alangg profile image
alangg

If you haven't done so already, do a search for BPPV - Benign Paroxysmal Positional Vertigo. This happened to me while I was on pred and it was quite frightening. My GP offered the 'Epley Manoeuvre' (the surgery had somebody specially trained) if it didn't clear up within a couple of weeks but it did so I didn't go in. But reading about it on the net gave me reassurance that it was not serious.

PMRpro profile image
PMRproAmbassador

It can also be linked to GCA

pubmed.ncbi.nlm.nih.gov/314...

This paper is discussed and summarised here on this forum:

healthunlocked.com/pmrgcauk....

The research was initiated as a result of a meeting of the PMRGCA Northeast charity support group who also supported the pilot survey.

Pixix profile image
Pixix

Yes! I have had bouts of vertigo regularly over past 3 years. Sometimes they are completely incapacitating, sometimes they are nausea & balance, but not the awful ‘if I move I’m going to be sick’ problem! But my Mum & Aunt both had vertigo, & I didn’t connect it with PMR or pred. I do the Brandt Daroff manoeuvre & take prochlorperazine, prescribed by my doctor. He said I need to carry those everywhere I go atm, as I’m getting more trouble, & take two as soon as I get any issues. Right now, I have more burning issues to contend with, but if I solve them I may try the Epley manoeuvre again…only tried once & I was sick within 5 seconds & it couldn’t be continued!! Good luck! Mine was worse again last week, & I’m only on 2mg pred, so I believe mine is unconnected with pred or PMR. Not saying yours isn’t, though!!

MiniSpec profile image
MiniSpec

Yes, I have PMR and have had GCA twice as well. While on high levels of Pred (60mgs per day for the GCA) I really suffered with vertigo. Trying to walk to the station every morning was an ordeal. I must have looked like a drunk, reeling along the pavement, falling into bushes every now and then, and holding on to lampposts to stay upright for a few seconds before continuing. However, as my Pred level reduced so did the dizziness. Now I'm down to 3mgs per day and I still get dizzy if I turn my head or body quickly, but I can now more or less walk in a straight line.

However, for me the long lasting effect has been tinnitus. I got it the day after I started on Pred in 2010 and it's still just as loud right now as it was then. I hope that one day I'll be able to come off Pred altogether, and if/when I do, I hope that the tinnitus will fade away, but at the moment it is just a hope, nothing more.

musicalJ profile image
musicalJ in reply toMiniSpec

Thanks to all who replied to my query about vertigo. Like MiniSpec I reel around like a drunk. I thought it was due to the prednisolone, because it starts after I've taken it, gets worse, then eases off as the drug is metabolized, but both the doctor and the pharmacist assured me it was most unlikely to be due to the prednisolone. Your experience suggest my theory is right and I am encouraged to know you found the problem reduced as the prednisolone dose reduced.

PMRpro profile image
PMRproAmbassador in reply tomusicalJ

I think you could well be right - have you tried taking it before bed to sleep through it? Others have found the pred made them wobbly.

musicalJ profile image
musicalJ in reply toPMRpro

No I haven't tried taking it at bedtime, but will look into it. Thanks for the suggestion.

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