BPPV
Posted , 6 users are following.
Does anyone else suffer from BPPV (benign paroxysmal positional vertigo)? If so, do you think it's part of Sjogren's syndrome?
I've had attacks of vertigo practically all my life, since long before I started getting what I now recognise as symptoms of SS. I'm talking about the real deal, btw, not just vague dizziness. I have attacks where the room starts spinning and I fall over if I make a wrong move with my head, as well as generally feeling as if I'm on a boat and having trouble walking straight between spinning attacks.
Usually they only last a few days, but I had a very bad (diagnosed) attack 30 years ago that lasted about a year, and am now in the throes of an equally serious attack that started six weeks ago. I saw an ENT specialist two weeks ago but got no change out of him, so I'm going to a specialist vertigo clinic now.
My reason for asking is that I know these two serious attacks affected different ears. In the attack 30 years ago, it was always tilting my head backwards and to the left that started the violent spinning, and turning my head sharply to the right would stop it. This time it's the other way round, indicating that the problem is in the other ear.
This leads me to wonder whether the problem lies in the quality of either the fluid or the crystals in the semicircular canals, which could perhaps point the finger at SS. If this is true, though, I must have had SS for a lot longer than I thought. I've had short-lived attacks of vertigo all my life - starting in childhood I think - and had my first serious attack in my early 40s, whereas I only got my first recognisable SS symptom (dry mouth) at the age of 51.
Any thoughts?
1 like, 12 replies
margaret22116 lily65668
Posted
Hi Lily. I have to say I don't have Sjrogren's but Behcet's ....very similar. I suffer this kind of vertigo. I say yes it is connected. I am currently in remissiin afyer long treatment and vertigo has gone. It is only there with actuve disease.
tj268 lily65668
Posted
I really hope the specialist can help you and wish you all the best!
margaret22116 tj268
Posted
tj268 margaret22116
Posted
margaret22116 tj268
Posted
Hope for you it is not ms. I am pretty good Behcet's is currently in remission. Got b12 problems but that is being dealt with. Feeling good overall. Good times for me at the moment xx
lily65668 tj268
Posted
Forgot to say, TJ. I hope you haven't had any more of those awful nosebleeds.
And so sorry to hear MS might be a possibility for you. I hope not too!
Sending good wishes your way,
Lily
christine_73623 lily65668
Posted
lily65668 christine_73623
Posted
Thanks Christine, Margaret and TJ for your good wishes.
I'm actually coping quite well, having experienced all this before. The first day - six weeks ago - was the worst as I couldn't stand up all day, couldn't stop throwing up and literally had to crawl around on all fours. However, I've got my sealegs now and can manage walking on what feels like a constantly-moving surface all the time.
I even risked a 5-day trip to London last week. I'd booked it months ago, before all this started, and could have cancelled as I had travel insurance, but decided not to give in to the vertigo. I had quite a good time though I got very tired. The effort of trying to walk straight without falling over seems to take it out of me a bit. But the one thing that floored me (almost literally!) was the speed of the escalators in the London Underground - especially on the Jubilee Line. I think I must never have been in London when suffering from vertigo as I'd never noticed this before. Where I live, the dignified pace of the escalators reflects the pace of life! It was a bit of a nightmare as I can't look down without falling forwards, so I spent quite long periods at the head of escalators trying to psych myself up to step on. Quite a lot of people helped me on - obviously thinking I was a nervous old lady. I was grateful for their kindness but mortified at being seen as old. In my book, "old" is anyone older than me!
deidra40034 lily65668
Posted
I too have had bouts of vertigo over the years, not pleasant at all!!! Mine will knock me sideways, usually have to walk holding on to the walls, if I can't make it to a chair or sofa, normally need help getting somewhere, or just can't stand at all. When I do make it to a chair or sofa, I am completely on my left side, and can barely lift my head up. I also suffer from tinnitis, which is another lovely part of SS.
?I Wish you luck, and be safe!!
lily65668 deidra40034
Posted
Sorry to hear about the tinnitus Deidra. I totally relate to your description of vertigo, but fortunately I've been spared the misery of tinnitus.
christine26761 lily65668
Posted
Hiya lily, I haven't read all you post as I'm in Oz and its late and I'm off to bed, but I just had to say this..I have dizziness/ imbalance/virtigo., whatever you want to call it...24/7,from Sorgrens, apparently it's from some of the fluid crystallising in my left ear. I've had it for 14 years now and there is nothing that can be done..tried everything..my Neurologist said it will just go one day as quickly as it came...still waiting hopefully, I have learned very well over the years to live with it., its is not there at all whenever I am in a swimming pool.???? I use a walker or a stick and have a very caring husband, can't go down stairs..struggle to go up them, use rails and seats in the shower etc, however I do manage really well, once I stopped thinking why me and took a good look around the world and saw people much worse of than me, that can't get a doctor let alone buy auds to help them, I settled down and found out learned how to live with it...I hope this really helps, as I said I haven't read all the post yet, will do tomorrow, I just saw the heading and I thought YES!!! .,I've often asked on this blog, but no one has ever answered..so now I'm thinking yes there is someone else...be blessed lily, have a lovely day..😘💐
also I had this for 10 years before a new local gp, just happened to say: so you have this dizziness from Sorgrens??? WOW, my Neuro died in an accident 8 yrs ago, so I haven't seen anyone else for it, so maybe he knew what caused it and just thought I knew..!?!
lily65668 christine26761
Posted
Yes Christine - I thought it could be something about the fluid crystallising too, especially as it was formerly in my left ear but has affected my right ear this time round. That suggests something metabolic rather than a local problem to me.
Needless to say, I won't raise this at the vertigo clinic, as I've discovered from long experience that the very mention of Sjogren's syndrome is like a red rag to a bull for some health professionals! Interesting that your new GP isn't one of them. I will, however, tell them that I have a diagnosis of SS, just to see what they say.