PMRGCAuk
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Labrynthitis/Vertigo

I was diagnosed PMR and suspected GCA in Apr/May 2017. I have successfully reduced from 40mg Pred to 12mg. However, I have been in bed since last Monday when I was forced to call out doctor (not in the habit of doing, last time was more than 20 years ago). My symptoms were dizziness, nausea and in fact it was only by lying down and not moving my head that stopped it spinning. The doctor said it was labrynthitis more commonly called Vertigo these days and it is a middle ear imbalance. She said she reckoned it was not bacterial but viral and prescribed anti sickness pills which made a difference to the nausea.

What I want to ask is: is this condition more prevalent or not for PMR/GCA sufferers because their immune system is compromised? Any advice from any of you out there that have had this condition would be appreciated.

Pat

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Hi I had labyrinthitis about 20years ago when I was otherwise fit and well. I could walk around as long as I didn't open my eyes! 😨 Lasted about a week as far as I remember, not a good thing to have. Best wishes for a speedy recovery.

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Thank you, CT-5012

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Hi Pat,

I had it about 15 years ago whilst still at work - horrible! Like you just turning head was a nightmare without even getting it off pillow. The anti sickness pills will help, but you need to remember to try and keep your head as vertical as possible, and not to turn it suddenly. Not always easy!

I think I was off work for about a week, but even after that if I made a sudden movement I would get a sharp reminder. Still do occasionally, had it for a few days after I got to NZ, but put that down to the long haul flights - fine on them, but for a few days after it resurfaced.

The worst was after driving to work perfectly fine remembering to turn head slowly, I’d then bend down to get my handbag out of the passenger side footwell and whumph!

GP did give some exercises to do - and the attached may help ncuh.nhs.uk/for-gps/clinica...

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Thanks, DL, I'll look at your attachment. I am feeling better this morning, but still feeling dizzy when moving head but not nearly as bad. Thanks for your reply, great advice as usual.

Pat

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Good, I think if you can get rid of the nausea then thats a great help. .

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I have read through your exercise leaflet and will print it off. Will let you know how I get on. Thank you.

Pat

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Hi Pat, early on.. when I was first diagnosed with PMR, i had a bout with “benign positional vertigo”. My GP referred me to a PT person who showed me the treatment for that disorder... “modified Epley’s maneuver for self-treatment of benign positional vertigo”. You can Google same, and print the instructions. It actually works!!

Good luck, Jerri

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Yes my mum had it 15plus years ago and had that movement done. At that time she had to sleep upright until crystals settled. Having had problem in and off for 20years she never had it again.

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I had a bad bout of Vertigo last October. I woke up in the middle of the night with my head spinning. Very scary. I could not sit up nor walk. Called the ambulance and was transported to the hospital. I was then diagnosed with Vertigo.

I was shown how to perform the Epley Maneuver which worked. Have not had another bout of Vertigo since. I did have do the maneuver twice with the help of my husband holding my head over the edge of the bed. Just search Epley’s Maneuver on the internet.

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Not sure if it's more prevalent in PMR/GCA sufferers... the "experts" may know.

For over a year, prior to my December PMR/GCA diagnosis I was being seen by an ENT guy... They were treating what they thought were sinus issues, i.e. stuffed/runny nose, pain in face, tinnitus, severe headaches, nerve pain in teeth (but no issues with teeth) and YES horrible Vertigo. They tried numerous sprays and drops, but nothing helped... in the end I gave up as I suspected it was something more sinister. Thank goodness most of the issues have resolved since on Pred... except TINNITUS! : (

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Yes me too - NOT actually 'sinus' probs but rather GCA !! Anyway I also had a lot of 'ringing' in my ears which seemed worse to me on high doses of Pred. i found this has abated at a moderate dose (15mg and under) and I simultaneously had my ears syringed - very waxy) which may have also helped but i guess you'd have considered or tried that already.

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I don't think I had sinus issues either! Misdiagnosed PMR/GCA perhaps. The ringing is worse now, as I'm on 75mg of Pred, but I have learned to deal with/ignore it. I asked about syringing, but they said no need. I am grateful the vertigo stopped... that was just horrible!

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Almost certainly - I could never figure out why antihistamines, and having no sinus congestion could still result in so much pain. Although I was on a lower dose of Pred for PMR - it wasn't until I had the GCA level dose of 60mg that I got any relief in my face and head. I sympathise though about having that 'noise' going on - but I think you will find it will improve a bit when you are able to taper down - thank goodness the vertigo has gone !!

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Yup... my "sinus" issues did not resolve until I was put on 60mg of Pred for the PMR/GCA!

It was like magic! Poof, no more sinus issues!

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Hi mamaici1 - I’ve only had a couple of vertigo incidents (the last one ending disastrously - see my post re: stepladders....!) - however, I do get tinnitus too frequently for comfort. Could I ask you to describe the sound you actually hear? In my case, I can only describe it as a sort of high-frequency Geiger-counter(!), like indidual clicks which then get more frequent until they almost join up - as I’ve only got one properly-working ear, it can make conversation tricky in a noisy place! People often describe it as ‘ringing’ but that doesn’t seem quite right to me - what do you hear?

Best Wishes

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Mine is definitely a very high pitched, constant "ringing" (not clicks) in both ears... however the level or pitch of the ringing is different in each ear! One is a higher pitch than the other (of course I had to be different!) I was sent to an NHS Tinnitus Clinic which I found very informative. She did say there are all different kinds/types of tinnitus and that no two people experience or describe the same thing... I sleep with a fan on in the bedroom, but they also suggested a white noise machine.

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That’s interesting - thx for that! I didn’t realise there was a designated tinnitus clinic? Might have to attend! I find that certain sounds (like a running tap or a boiling kettle) sets mine off.

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Yes, My ENT referred me, but I imagine a GP can refer as well... it was a small group of about 10 people who met at in a conference room at the Royal Sussex County Hospital, Audiology Dept. It lasted about 1.5 hours ad as I said was very informative! I'm glad I went.

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Hi Pat,

very sorry to hear you're suffering this right now.

I get Vertigo out of the blue while driving, or being in a car. I had it five episodes so far over the last six years and in my case I have to lay down and not move at all. Sometimes it takes a few hours to feel better and some times it takes a day or two, or even longer. I try the Epley manoeuver, but it doesn't help. I feel like dying when I have it, it's the most dreadful feeling. I can't continue driving for example, I behave like a robot not moving my head and breath in and out a certain way.

I also have Tinnitus in both ears for many years. While I was still on Prednisone for GCA the jaw stiffness sometimes extended to the ears and I also couldn't hear that well.

I hope you'll be over it soon.

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Bummer! I cant imagine HEARING my GCA!

Hahahahahahahaha

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Thanks, Akino, feeling better and fingers crossed it will not come back.

Pat x

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What I totally forgot: We went snowshoeing last January for two hours and I enjoyed it very much. While driving home I felt perhaps Vertigo was coming, but it was nausea only. BUT the nausea stuck with me for eight days and than I got this headache in my left temple. That's when I went to see my GP and she immediatly told me to get checked for GCA with bloodwork and take Prednisone. Nausea disappeared. Prednisone misery started. All very atypical, but I seem to have Large Vessel GCA, which is almost gone because of my Actemra treatment. CRP went down from 78 to 8 in a month. Hope you'll find your cure soon and for good. There is always hope!

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Hi,I had this condition for months during chemo treatment,Oncologist referred me to the Balance ClInic,had a hearing test,and other investigations done.I was given Brandt Daroff exercises to do as Hall Pike Test was positive.I am happy to say I am no longer dizzy and falling about.

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I had the same last year and ended up in hospital. Was then down to 10mgs of pred. In hospital they put me back to 60mgs. Came down by 20mgs over the next 3 days. Because I had GCA I suppose. I think streso can bring it on. Wish you well. X

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Thanks for reply, Morrison, feeling much better now.

Pat x

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Funnily enough I have just recovered from this! I used to have PMR, but am well over that. So it might just be a virus going round and as you say, having a reduced immune system, means you get these things. I did wonder if it might be because my immune system is not as strong as it was pre-PMR, as I do seem to fall for everything going these days. But as ever how on earth do we definitively prove that? Interesting too, that some people do a modified Epley manoeuvre - I was given the Brandt-Daroff exercise, as Epley needs to be done by a health professional apparently. No idea if it did any good...... I wish you better soon (my condition which then morphed into mild vertigo, lasted for about three weeks, which is the time a virus generally takes to leave).

Anne

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Thank you Green Girl for your reply. Three weeks seems forever but thinking about it, I am nine days in so that's not too bad. I went out today with my husband for the first time today as I felt better but had to come home sooner as I was dizzy and terrified that I would fall over. Maybe try again in a few days.

Regards

Pat

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I have had vertigo probs for many years and the doctors give me pills to restore balance and in fact if I feel it coming will stop the development.

A friend had similar and had a Meneures Maneuver, don’t know about the spelling. It readjusts the contents of the ear, some particles can get lodged in the wrong place. It is a simple maeuvering of the head and neck by a dr and not painful. It didn’t work for me but it did for him.

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Thanks, Topps, what are the tablets called? The only ones the doc gave me were the anti sickness ones. Also I might look online for a practitioner who will do the manoeuvre.

Pat

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My pills are Betahistine. Hope there may be of help.

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I looked up the Betahistine and they are very similar to the ones doc prescribed. Thanks for replying.

Pat

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