Feeling Wobbly

[Fiat500E]

I have suffered with Vertigo for many years, but lately have been experiencing an unsteadiness in my head without the room swimming (which is my normal experience with vertigo). It is not there all the time, but I am aware of feeling more unsteady.

I cannot really explain it to be honest. I am moving IN MY HEAD, but my surroundings are still.

Weird. Has anyone else experienced anything similar?

[jinasc]

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

Patient-reported involvement of the eighth cranial nerve in giant cell arteritis

Read this link and it is quite possible that your Rheumy or GP have not read this paper as it came out 1 month before Covid.

[Fiat500E in reply to jinasc]

Thank you - I will read it and possibly take it to my next appointment with Rheumatologist. Thanks so much.

[DorsetLady PMRGCAuk volunteer]

Actually I have had a couple of bouts of vertigo over the last couple of months - but they disappeared of their own accord after a couple of week (and a few exercises) ...and I did have labyrinthitis for a lot longer many years ago - horrible - so I sympathise.

We seem to have had a few posts lately, so wondering if something doing the rounds/winter weather or just age (me, not you!).

You could try these exercise, but warning they can make you feel a bit nauseous first few times....if they don't help you you probably need medical advice - as jinasc says could be GCA -

m.youtube.com/watch?v=jkfq3...(Not working as expected?)

[Fiat500E in reply to DorsetLady]

Thanks. Yes all those exercises help. I have appointment with Rheumatologist on 9th Dec so will check it all with her. Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Fiat500E]

Okay, please let us know ...

[Fiat500E in reply to DorsetLady]

Will do. Take care everyone.

[Miserere]

I have some vertigo at present - caused by tight muscles in neck/back. I am using somatic exercises to ease things off. Hope your appointment goes well.

[Fiat500E in reply to Miserere]

Thank you. Everything about this illness is so debilitating. I am 76 now and it all started in 2019. I never know whether to blame GCA / PMR / Prednisolone or just OLD AGE.

[singingloud]

I’ve had vertigo for two months now. In the past four weeks I’ve been to the physical therapist for treatment. He found my left ear was affected by vestibular nerve so I do balancing exercises for it. But I also have the crystals in my right ear in the wrong place so I do the special maneuvers.

I had to see my PA to be referred to PT. Hopefully your rheumatologist can do the same for you.

Take care and use a cane if needed.

[Fiat500E in reply to singingloud]

Thanks - Yes I will see what Rheumatologist comes up with. It's all so tiring isn't it and some days I just think - WHAT WILL I WAKE UP WITH TODAY. Thanks again for your reply.

[whitefishbay]

Well I never got GCA but I did get SSHL which turned out to be a vestibular schwannoma on my 8th cranial nerve. Balance a bit off sometimes but no vertigo.

[Fiat500E in reply to whitefishbay]

Thanks for your reply. It is so useful knowing what all of you have had diagnosed and the treatment you receive. I have plenty to talk about with my Rheumatologist. Take care.

[BabyRuby1]

I’ve had vertigo 35 years. Off and on. I’ve tried everything. And many doctors. Some told me I’m nuts. I’ve tried The positioning movements etc. nothing works. Diagnosed with Benign Positional Vertigo. Then two years ago PMR. Weather effects my ears and stress. Chiropractor helps a lot. Can’t sleep on my left side or I get vertigo. Weird. Sometimes it feels like my brain is floating in water in my head. I’m going to an ear specialist finally after giving up 20 years ago. When I have an attack only 4 mg of Valium and rest helps. Vertigo is a strange issue. Just thought I’d share my journey

[Fiat500E in reply to BabyRuby1]

Thank you so much for your reply. I identify so much with your story. 40 years of vertigo for me - specialists, exercises, epley maneuver etc..etc..etc.. Strangely enough my left side is also my worst side - WEIRD as you say. I am grateful to hear your story - albeit sad - but it helps knowing I am not alone with what I go through. Thanks again.

[BabyRuby1 in reply to Fiat500E]

oh I went thru the poor me period years ago. I just face the problem. One doctor that recommended 4 mg Valium told me the Valium calms my inner ear down because it’s trying to correct itself too hard…interesting. Usually takes 3-4 days to go away. But it’s always there. Looking up really makes me dizzy too. I guess we could have worse problems huh?

[Fiat500E in reply to BabyRuby1]

Thanks for taking the time to share your experience. Some days are worse than others aren't they and depending on how I am feeling with everything else going on in my body - I cope well OR give in and eat chocolate. Thanks again for replying.

[Purplegloss in reply to BabyRuby1]

I had a similar problem a few years ago before I got PMR with vertigo and unable to lay on my left side without the room spinning and mine was due to a nut allergy. Stopped eating them and have been fine ever since.