LUPUS UK

Room spinning- help!

Woke up this morning and when i moved my ear went dead for 2-3 seconds and everything started shifting and spinning. I put my head down again and eventually settled but when i moved again i felt strange . I sat back for a while then got up found if i bend down and turned slightly or moved my head up at all it started again . I dont take alcohol and have not changed meds so googled vertigo. Is this related to sjogrens or could it be due to rituximab infusions in January? Also should I just rest or contact out of hours doc ( we have a good service) . Ive no nausea I just feel weird- my husband says this is normal🙁

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It COULD be Benign Paroxysmal Positional Vertigo (BPPV) - crystals in the ear become dislodged from where they should and migrate into one or more of the 3 fluid-filled semicircular canals, where they are NOT supposed to be.

I would call OOH and ask for advice.

vestibular.org/understandin...

is a very good and clear explanation about it and how to deal with it.

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Thanks ! I have been surfing and this does seem most likely. It was a horrible sensation as the ceiling was literally spinning, ive been dizzy in past but neverlike this !! I have called out of hours who will get a doc to phone me back .

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👋👋👋👋👋 there can be so many causes of this sort of thing. I've been living with my version ever since I can remember. And been thoroughly investigated by ENT back in the 1980s:. both inner ear infection + neuropathy & cervical arthritis were blamed. During my years in diagnostic ambiguity, lifestyle management was my only effective "treatment"....standard prescription meds didn't help...in fact they made the vertigo worse.

But since 2011 when my infant onset lupus diagnosis was recovered, my vertigo has been responding v well to daily oral combined therapy Lupus meds, which means inflammatory process is an underlying cause in my case. Over the years, this link has helped me most to understand the immune dysfunction aspect of my persistent vertigo (it's on the same website as PMRpro's link):

vestibular.org/autoimmune-i...

Take care...go gently...and do touch base with your gp asap...this needs to be documented in your records

🍀🍀🍀🍀 coco

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Thanks Coco 😀 Still feeling discombobulated ! Hope to hear from doc soon ( hubby is fretting) these things keep popping up out of the blue . Its hard to describe how you feel , much worse than feeling tipsy 😵

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Tipsy is perfect for this 👍👍👍👍

Please let us know how you get on

🍀😘🍀😘

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Ive just read your link , very interesting. I have had ear issues , icookie bite hearing loss and mild tinnitus . Just before thr vertigo occurred i had several seconds of hearing loss in one ear . I wonder what is going to break down next LOL 🙃

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👌👌👌👌Best to mention all this to your doctors...there can be several causes underlying these signs & symptoms.

A few years ago I developed significant hearing loss but tests indicated my hearing was actually ok...the specialist told me my hearing loss wasn't imagined...my medical history indicates this hearing loss can well be due to nerves between my brain & inner ear being progressively damaged by inflammatory process going without daily systemic prescription treatment until relatively recently (from diagnosis of infant onset lupus & early onset of sjogrens until my mid 50s). This fit well with the chronic neuropathy in my other body systems (peripheral neuropathy etc etc)

Am not in a rush to have my persistent vertigo & hearing probs investigated further...as long as my lupus meds can damp down the vertigo, I have other priorities (e.g. Right now gastroenterology investigations are my main focus). Meanwhile I just ask folk to speak louder 😉

Take care...keep laughing 😆

🍀😘🍀😘🌷🌷🌷🌷

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Going to out of hours at 4.00 so will let you know . I have diffs hearing when there's background noise !

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YES: List every sign & symptom...no harm asking the dr how much he/she wants to know 😉...👍👌🍀😘🌷

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I was having this problem, ringing in the ears, dizzy and could not understand anything anyone was saying especially with lots of background noise. I went to an audiologist and I had blood in both ears and determined I have autoimmune hearing loss. I now have hearing aids which has helped tremendously. Stay on top of it. The doc told me the sooner it's caught the better due to brain forgetting the different sounds. Hope all is well.

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Went to gp again, not going to refer to ent yet unless lasts long , you can wait months for a referral anyway 🙁. Its a pain . I hope you dont have a reoccurrence x

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Strangely enough I have just been proofreading my daughter's minor illnesses essay (she's a paramedic) and her patient was suffering what was probably BPPV. I quote:

"The GP was happy to see the patient based on my assessment. He diagnosed posterior semi-circular canal BPPV after provoking vertigo associated with torsional, upbeating nystagmus (Li, 2017). BPVV can be treated by manoeuvres which reposition canaliths in the utricle...

Evidence produced by Sacco et al (2014) found that these manoeuvres are underused in the ED, with many physicians treating for symptoms with medication such as benzodiazepines and antihistamines rather than investigating for the root cause of the symptom."

The main reason I suspect is they don't want puking patients - but the GP could diagnose and treat it now - no need for ENT appointments maybe just in time for Christmas! I'd ask him if he's heard of the Epley and Semont manoeuvres...

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Interesting- i asked gp about this and she doesn't know how to do the exercise and doesn't know any other gps that do !!!!! They don't receive the training unless do a specialis course . Does sound like a cop out 😳

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Ps wishing your daughterall the best in her training 😀

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Not training - been a paramedic for 8 years now. This is gubmint add-on bits of paper...

Tell her to google it - there are EXCELLENT videos on YouTube and my friend's anaesthetist trained daughter looked them up and did them for her. And she should at least be able to DIAGNOSE it.

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Id be a bit anxious letting someone do the exercisesunless they were trained as im a bit of a worrier. I just hope it will settle as maybe going to England to vsit my son at Easter

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Where do you live then? "Going to England..."

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Ireland , definitelywont be traveling by ferry!!'nn

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No-ooo! Though flying when you feel an attack of the whirling pits isn't funny either!

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Imay get him to come home instead 😏

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Meant to say the doctor says i have costochondriis , and raised bp now as well , what next 😠

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The raised BP COULD be due to the pred. Don't think mine is due to pred, it was involved in atrial fibrillation but it is well managed now.

Costochondritis - all I can say is OUCH!

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The last steroids i had were with rituximab could it cause raised bp now ?

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Not if you are off it it shouldn't - sorry brain wasn't in gear, I tend to assume everyone is on pred...

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Maybe I should have a chat with rheumy about it -- on other i think it was steroid infusion that caused awful gastritis with 1st infusion!!

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At least you know why if you have been drinking!

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LOL 😀Not a drop touches my lips 🌸 Just been to doc got prescription for stemetil hope it helps . If not settled in few days to go to my own gp. More interested in the Sjögren's than the vertigo makes a change!!

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Hope you were able to educate him - or at least make him feel he should go and have a read...

And do hope the stemetil works!

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I hope so too ! It was a quick chat as other people were waiting but he was very interested in my rituximab treatment!

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Stemetil is what I'd expected...I was given it for months...ent said that was a no no, as stemetil is the ttype of drug that gives you vertigo if you take it too long 😆

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I have only to take it for 3-4 days if no change go back to gp . I couldn't even look down at my bit of dinner 🙁- but i just feel strange , no nausea so im lucky

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👍 Good. It's fairly common to start with stemetil. The dr may be suspecting labyrinthitis (vestibular neuritis)

Am glad you've no nausea. Mine was pretty rough, but could've been worse 😉. The main thing is helping yourself to keep calm while the world is constantly swirling around you 😏. Try not to let it get at you. This will be sorted out!

🍀😘🍀😘

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So sorry Weathervane. It does sound like BPPV. There is a manoeuvre you can try called the Epley Manoeuvre which will put the crystals back where they should be. I have Ménière's disease but have also had bppv. The manoeuvre usually solves bppv. Usually a practitioner will do it but you can do it yourself following the instructions on the net. Even if you don't get it right it won't do any harm. Hope it resolves for you soon. At least its treatable fairly easily.

Liz.

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I've had my husband do this for me when it lasted more than a day. works like a charm. There are several youtube videos that walk you through it.

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Hi, I've just had the procedure for BPPV & it's not pleasant, but it worked & I feel much better after suffering with this condition for years. The dizziness is like everything is spinning at 90 miles an hour & after a few mins it stops. The procedure involves a Dr tilting you backwards at speed & turning your head to the right then the left. The sensation is that the room is spinning faster than I've ever experienced, it drained me & after a few minutes I vomited. But it has cured my dizziness & I don't need four pillows to sleep sitting up anymore, I have yet to visit the dentist to see if I don't go dizzy when undergoing treatment as I used to feel aweful having dental treatment. I had the crystals in my right ear & had suffered with this vertigo/dizziness for years I would urge you to see your GP & ask to be referred to ENT clinic.

Hope this helps. :)

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Thank you all for your advice , i am just sorry that you all have had the same condition 😕 Iam feeling a wee bit better this morning but i am still being very canny when turning and not bending or looking up.

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Definitely vertigo. At my worst I would get this every other week and it lasted for a few days each time. It usually is one affected ear. If you can figure that out you can minimize the discomfort (don't tilt your head in that direction). Non-drowsy dramamine will help with the symptoms.

After my Plaquenil started working, I pretty much never get this anymore. Such a relief!!

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I think it must be my left ear , no pain but there is a sensation of fullness if that makes sense and mild tinnitus . I really hope this wont keep reoccurring, i have been on plaquenil for over a year and it didn't stop it happening 😕

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If you are new to drugs it happens. I checked with my doctor she said it's because of steroids. My hands shake often and i used to have same feeling every morning when i used to go for my walk. But now it has stopped. I think may be because i have changed my couch potato lifestyle. I am more active now, still in the process of accepting my moon face and trying to keep positive attitude.

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Hi there , i have been trying to be more active but the world is conspiring against me🙁 I have been walking more and I started tai chi but then the pain in my bursitis hip got alot worse so no more tai chi till i get another steroid injection. So was walking more until the vertigo started, you can't win ! I do keep positive as I know if i let it get on too of me that would be it . I hope you continue with the exercise while you are feeling good , i intend to when all this hopefully settles down xx

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Hi Weathervane,

It is advised you speak to your doctor or rheumatologist about the symptom you are experiencing as they can ensure you receive the correct treatment. The NHS Choices’ website gives a detailed overview of vertigo which you may like to read here: nhs.uk/Conditions/Vertigo/P...

According to Arthritis Research UK’s website, if you are taking rituximab and notice any of the following: pins and needles, weakness, shaky movements, unsteadiness, difficulty in moving your face etc. (see website link) you must see your doctor immediately. arthritisresearchuk.org/art...

Please keep us updated, wishing you all the best.

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Thank you Chanpreet , i discussed this with gp and she didn't think it was a reaction . I am starting to feel better , though im tired and my head still feels a bit woolly . I am meant to see rheumy in a couple of weeks but if any changes i will contact her sooner. It's difficult to know when you are making a fuss so its such a blessing to have you all for advice and support 🌼

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Hi weathervane. I've just been reading your post after experiencing some severe dizziness (still ongoing) following an allergic reaction to a new inhaler. I decided that it must be BPPV as I tick all the boxes but then read other articles that claim that Autoimmune Inner Ear Disease presents in a very similar way and is generally underdiagnosed and now I wonder if that is what I have. I have spells of dizziness that are the sequelae to allergic/sensitivity reactions to many things plus spells where I will go deaf with fullness in the ear for no obvious reason. I generally attribute it to a virus and carry on but have no other symptoms to support a viral cause. Last night, the dizziness was so bad that I couldn't eat because of the nausea.

I'm going to discuss with my GP in a couple of weeks. Did you investigate yours any further? It's really horrid, I can feel ever so unwell.

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Hi claire , i was seen at ENT who were a bit dismissive, they said it was a viral infection. That was 6 months ago but my head still feel dizzy at times and i have episodes when i lose hearing with a high pitched buzz , i havent had the vertigo itself snce when the room spins . You should go to the doctor while you are still having symptoms, i was prescribed betahistine for the nausea which helped . I feel it is related to autoimmune disease, my ears also have feelings of fullness , i am troubled with sinus infections and tinnitus. I hope you get some answers and feel better soon best wishes 🌸🌸

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Thanks weathervane. I attribute so much to viruses which is why I'm suspicious about this dizziness etc. I have a gp appt booked for 10 days time and will then follow this up with my Rheumy in October. My hypersensitivities seem to be increasing and each one triggers an auto-immune response which can't be good. I'm sorry you're still getting the spinning symptoms - that can't still be a virus, Did they do the test for BPPV? Xx

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They didnt do test for BPPV as didnt feel it was necessary , i dont have the spinning room still , more of light headed feeling on certain movements . Hope you get some answers xx

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