Bit of a finger in the wind query. I’m currently trying ( with reasonable success) to control a PMR flare, so back up to 15mg pred over last 4 days. PMR symptoms improved.
Last 3 days, head feeling spaced out...similar to pred brain dug, but with a physical dimension. Yesterday lost balance a couple of times...nothing dreadful, but weird. Today, got up and room felt tilted. I’ve overstepped to ‘regain’ perspective, then realised its me that’s wonky, not the surroundings. Never had anything like this and not attributing to pred or PMR but...any thoughts peeps?
I did a quick google which suggested vertigo but no idea what that may mean. It’s a horrible sensation. Bit like 🍷🍷🍷, but without the🍷. I feel like I’m staggering.
Any thoughts very welcome.
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Hi phoenix22...I have had vertigo/nausea for years since my balance went and my neck spasms. It's a weird feeling.
However, I suspect it could be the issues that exist with PMR and ear problems. I don't have the link to hand but if you search posts using ears it may help! I have looked but can't find it. I believe that pred at higher doses can cause it. Hopefully someone will be able to help.
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Thanks poop. I’ve never experienced anything like this. It’s come from nowhere and frankly, I’d be happy to see it off to wherever it came from. I’ve just cooked dinner with one hand on the worktop to give a sense of balance. I’ll see if I can find a pred link which, tbh, I wasn’t expecting. Thank you.
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If it doesn't settle then see the Dr. Try some neck stretches, ear towards shoulder and pull it gently to stretch each side. Of course it could be inner ear issues.
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Thanks. There’s always something else waiting to bite your bum just when you think you’re back on a moderate keel.
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Tell me about it. It would be really nice to have a year when something else doesn't cave in or fall off!🤪
Thanks Mary. I’m probably lucky; never experienced ear problems or pain, so this really is out of the blue. I’m attributing to an inner ear balance thing, but only because that’s what google suggests. I’ll try GP appt...probably next week so I can cancel if symptoms go away over the weekend. Thank you.
i experienced this when I was taking Naprosyn/Naproxyn anti inflammatory prior to diagnosis. literature says this can be a side effect in the elderly and went away when I stopped taking it. This may not apply to you. I am 81.
Many moons ago pre GCA, pre Pred I had labyrinthitis- came on suddenly. Balance is out of kilter - might be worth looking online for specific exercises for that.
Thanks DL. I checked the link and that seems to sum up the balance thing. I’ll wait 24 hrs and see what happens, so if by Friday it’s no better, I can think about a GP check in a week or two...an cancel if it resolves meantime. Hopefully. 😳
Treatment. Most of the time, vertigo resolves without treatment, as the brain can compensate for changes to the inner ear to restore someone's balance. Medications, such as steroids, can reduce inner ear inflammation, and water pills can reduce fluid buildup.
Thanks PMRPro. Didn’t know what else to look up. The labyrinthy thingy looks possible. I’ve also just read that it’s linked to autoimmune disorders. Deep joy. I’m going to have an early night, listen to an audiobook and hope it’s all gone away tomorrow.
If you close your eyes do you still feel just as dizzy or feel much better? If you feel better then it’s probably labyrinthitis if you don’t feel any improvement then it probably isn’t. Hope that makes sense.
It’s not much better if I close my eyes. Went to bed last night intending to listen to an audiobook, but I couldn’t concentrate as my head was still spinning. So I put on my over ear earphones and played the Stones Sticky Fingers album which seemed to either shut off the sensation or at least divert my attention away from it. I was so tired, I actually fell asleep before Sister Morphine, a track near the end and woke up half an hour later. I don’t feel as bad this morning, but I have to be careful bending.
I have just recovered from a ghastly period when my balance was all over the place . I do not want to be an alarmist, but you should definitely see your GP who will be able to ascertain if amything else is going on . It is very difficult to diagnose vertigo,/ labyrinthitis, but they do have a test which has you on your back with your head over the end of the examination couch doing head turns. ( I don't suggest you do this on your own )
The Dr can also look in your ears to see if there is possible infection .
I ended up having a head scan to rule out anything sinister, and I am relieved to know that there is nothing to worry about on that score.
It is a most alarming and frightening thing to go through, and unfortunately it is time rather than any other magic cure that will get you on your two feet fairly and squarely again assuming it is not caused by any other underlying problems.
Thanks TT. I guess I’m lucky to have gone through life without ear or balance problems. I’m going to see what happens today and if there’s no improvement I’ll phone the quack tomorrow. Deep joy.
Could be your middle ear! I suffered the same two or three times and the world swimming when I turned over in bed. Went to Dr who laid me down on bed, turned my head one way and told me to get up the opposite way. Did this a few times and it disappeared. Not all docs know this or indeed practice it. Worth a try though!
I lost my balnce after chemo for colon cancer. The chemo lasted 6 months and ended at the end of March 2018. I was ordered to walk half and hour per day 5 times per week and I am still doing it every night religiously unless it's raining. During and after the chemo I was actually stumbling down the block going from side to side on the sidewalk with a bottle of water in my hand. I was always thirsty. I must have looked like a real drunk, stumbling along, bottle in hand. I would lose my balance in the kitchen or anywhere and had to hold onto something quite often.
This has greatly improved now. I'm just fine around the house. When out walking now, I still find myself straying from walking in a straight line a bit but no big deal at all. So I don't know if what I had fits the label "Vertigo"or not but it was definately a balance problem. Combined with chemo brain and all the other stiuff this has been quite a ride.
The Epley Manoeuvre is, I think what Jenerino referred to in above post.... It certainly gets the middle ear working properly again.... Simple and quick... A GP can do this in a normal 10 minute appointment... Hope you get it sorted as it's really not nice....
I've had it done on two separate occasions.... Never needed it since.... Amazing how quickly it settles the nausea and dizzyness.... Glad it worked for your Mum.... 🌻
Yes they said might need 3 sessions. But 1st one did it. It was a physio that did it I think. She used to be in bed with her head under the pillow for 3 or 4 days which it got really bad. I did wonder if gout and the crystals in the ears were similar but no real internet then.
Going through the same thing for the last week or so. Using the DSNS reduction from 13.5 to 13 and was wondering if it's related to that but most likely just a middle ear thing. Not a happy camper but hopefully will resolve soon.
Interesting rocket man. I’m at a similar point in managing reduction.
As you say, probably unrelated but such coincidences should be noted as part of the wider puzzle. I’m hoping to get a Gp appt next week to get it logged.I'm no worse, but no better after a week now. It’s horrible.
Since starting this journey 3 years ago, I have had increasing problems with balance, including falling a few times this year. I have never been hurt enough to seek medical attention. However, I have been badly bruised, scraped and with abrasions. The worst thing is that this last "little" trip and partial fall has thrown me into a relapse about 2 weeks ago. I never had a balance problem before. Could it be Prednisone?
My daughter has insisted that I get the Life Alert system, and I have given in. It includes a kind of central command box, a shower button, a necklace and/or wrist band and a GPS device which allows help to find you. Although recommended by the company, I have rejected the necklace which is on a thin rope, and have asked for the wrist device.
I really don't see how this helps if you are unconscious and would be unaware to press a button. This system only works in the United States, so it's useless if you are out of country on a trip. The central command was placed on a high piece of furniture which would be impossible to reach if you were down on a floor.
Does anyone have this or a similar system in the UK or Australia, or this system in the US? And what do you think about it.?
Systems of this sort are available in the UK, some privately and some from the local authority. I'm not aware of anyone who has one on the forum but there possibly is.
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Wondering if anyone else has experienced this possible start to GCA?
Going backwards...again. 10mg wall? Advice please
Is this a flare?
