Anyone suffering from PMR and Meunière (dissinness)?

[GrandmaPirate]

I suffer since 6 weeks from Meunière (dizziness when coming upright after laying). Anyone has experience with this? I had sometimes Meunière in the past before I got PMR in April 2020, but now it appeared when PMR flared up after the AZ injection on 12 April 2021 while I was tapering off and at 2 mg/d pred. Since 11 days I am again on 6 mg/d pred, my PMR improved considerably, but Meunière is still there.

Keen to know if it could be linked. The dizziness originates at the left side of my head, ear, neck and is especially strong when waking up and trying to get out of bed, even with the special manoevre I learned from a neurologist years ago. I know the scientific explanation of Meunière but do not know if there could be a link with PMR. Biochemically I think there is none, but maybe indirectly by changes in bloodstream or pressure by laying on the left side at night.

[Coffeebeans]

I'm sorry you are suffering with menieres on top of PMR.

I don't have menieres but my partner does - incidentally it has been grumbling all week and has kicked off today 😬😣.

In his experience identifying the triggers has helped reduce attacks. For him it's salt, excessive heat, stress and sometimes air pressure like the weird feeling before a storm.

However I do think it's worth speaking to your doctor's reasonably quickly in case it is linked to the PMR and potentially GCA because GCA can affect the ears. Especially with the symptoms having changed from the norm for you. Better to be safe than sorry.

[GrandmaPirate in reply to Coffeebeans]

I told my rheumatologist at the last appointment I had in June. She seemed not worried by that and said that in my case it doesn´t look like GCA.

[Coffeebeans in reply to GrandmaPirate]

That's good to hear.

Have you had any luck in identifying the triggers? The menieres society is a good resource.

[DorsetLady PMRGCAuk volunteer]

Not sure there is a great deal of documented information regarding PMR & Meunières. As you know M is related to inner ears-and balance/vertigo issues. There is some thought it may be due to an autoimmune reaction and sometimes steroids are prescribed. As Coffeebeans says do be aware that GCA can affect ears.

[PMRpro Ambassador]

Just to add my 2 penneth to reinforce - GCA can cause ear problems of all sorts.

[sail26]

Hello Grandma Pirate.20 yrs ago I suffered badly with menieres which fortunately burnt itself out over the years and now I suffer from an occasioanl dizzy spell but not for a long time until mid-march a month after PMR diagnosis when I was tapering from 15mg to 12.5 pred. The dizzy spell lasted a few days only and has not occurred since. I don't know whether it was linked to the PMR but had to go back to 15mg for a month and am now tapering by 1mg every 3 weeks.

I worked with the Epperly manoevre and tapping for the dizziness.

I wish you well. Menieres dizzyness is up there with PMR.

[GrandmaPirate in reply to sail26]

Thank you very much for this info.I keep going!