Question about Sjogren's

Hi Christine, what were your symptoms in your ear when you had the fluid issues and how were they resolved?

Hi Christine, the vertigo problem intrigues me too. I've had attacks of vertigo all my life. I have clear memories from early childhood of waking in terror in the night because the room was spinning and I thought someone was moving the bed. I had it on and off as I grew up, but it only really took off around the menopause, when I had several very bad years - falling and vomiting in the street, at work etc. I got sent to an ENT specialist for tests but he said it was just functional.

Fortunately, it largely cleared up in my late 40s though I've always had to be careful about sudden head movements. In the last year it's come back, but in a slightly different form. I no longer get the long-drawn-out episodes when I feel like I'm walking along in a rotating cylinder and everything is spinning wildly, but I now get momentary attacks which suddenly take my feet from under me with no warning at all. I never get them while walking these days, only when I move my head after standing still. I had one while standing on a down escalator six months ago (the shock of which I'm convinced brought on my current SS flare-up) and another one last week in the National Portrait Gallery in London. I'd been standing still looking at one exhibit, and as I turned to move away I went down like a felled tree-trunk. I was unhurt apart from a bruised elbow but it caused a bit of a panic in the gallery! I've also had a few falls when moving suddenly after standing still doing something in the kitchen at home.

My doctor has written me up for a cervical MRI as he thinks it's down to arthritis in my neck, which might well be true at my age (71). However, I've long suspected it's all part of the general sicca syndrome, causing excessive crystallisation in the semi-circular canals. That's why I was interested that you mentioned this too.

 

Hi Lily, I was soooo worried it was something else when it first

started..I had the all clear from the ENT, so my dr sent me to a

neurosurgeon, he done many tests..I was too chlostrophobic for an mri so he said it was fine, he would do these other tests I had in his rooms which he did...four of them, took hours...anyway he

said its all clear...total relief for me as one can imagine..I

had covinced my self that I was dying of a brain tumour...he just said that some of the fluid has just dried up -- crystallised and

that it would probably just correct itself in time..,11-12 years later im still waiting...mind you he/we never mentioned my Sorgrens

issue then, now we have moved and another local dr told me..

that the fluid drying up was from having of Sorgrens. ..unreal...if i so much as stand on a matchstick I feel like Im tripping over,

falling forward I cant bend down-too dizzy, but that fine..used

to it...I have no problems at all in the swimming pool..

its like I dont have it., unreal, mind you Ive never put my

head/ears under the water..I have learned to live with it well,

when you look around the world and you see soooo much

suffering...it makes me feel very grateful for my life..Its very

interesting I also have arthritis in my neck....mm..very interesting.I am exactly the same when I turn my head, even slowly, my

poor husband was all bruised years ago on his arm where i

would hang on for grim death whenever we went anywhere

and I was still using a walking stick but Ive since bought a coupleof different walkers..be blessed lily, have a lovely day..by the way im in Australia, where are you?😚xx

Oh my goodness i just typed you a really long reply and it just

disappeared..im really interested to chat too..im 65...im too sore to write it all again..i wil, contact you later, i might private

message you..😧

Not resolved...fluid crystalised..dizzy/imbalanced 24/7 for 12

years now nothing can be done..it will fix itself one day so the

neuro says...still waitingl😍lol...learned to live with it well though..had it long enough...some around the world are a lot worse

of than me..😉 xxx i see it as a good outcome, Im alive and Ive e adjusted xxx

Looks like you re euved my long message lily..phew....i just clisec my tablet befire and ut was there, just opened it niw a d viola there ut us....😉

O' soooo very sorry about those typos, meant i closed my tablet before because it looked like i lost all my typing..i just reopened it and it WAS there..voila 😰.xxx

It sounds as if you have Sjögren's related POTS Chrisitne ask yout GP to refer you to neurology! You sound just like me!!!

Thanks Pam, never heard of that im going to google it too😚

Hiya again Pam, could you please tell me what POTS stans for....google keeps bringing up pots and pans..when i put healthy issue they put copoer pots are healthy ..lol..😊😡

Hi Christine, google postural orthostatic tachycardia syndrome. Getting dizzy when you stand up from sitting/lying because your blood pressure drops. Not my problem, btw - my dizzy spells come on when I move suddenly after standing still. Also I don't get tachycardia (rapid heartbeat that you can feel in your chest and throat) in these circumstances, though I do sometimes get it.

Thanks heaps lily, ill googke it now...bless you 😚

Thanks heaps lily...very very interesting..i have a heart condition

too-PAT...im going to see my cardiologist soon so I will go in

forearmed with this knowledge..i dont think its my crystallised

ear isues though, but I do have loads of the other symotoms..thanks again lily..blessed😍xx

Christine tell your GP,you have POTS associated with Sjögren's! SS, SLE, APS and diabetes all can give you a form of Posural Orthostatic Tachycardia Syndrome as can being double jointed ! 

Will do..thanks again😁😁😍