Middle Ear/Dizziness/Motion Sickness issues with Lupus?

[ShannonB]

I seem to be getting recurring issues with what I'd describe as motion sickness that seem to be caused by my middle ear. When I get them I get really bad lupus malaise as well. This may be a virus and not directly lupus related but I don't have any other cold symptoms. Anyone else have this? Is it possible to get inflammation of the middle/inner ear that causes something like this?

[Maya23]

Hi ShannonB

Yes I am currently suffering very similar symptoms as the lupus has flared up. I believe it's due to the Lupus affecting my nervous system which means the nerves get impacted by inflammation (I also get nerve pain and tingling/burning elsewhere) so this can impact the nerve in the inner ear, I believe. I am going to talk to my GP about this tomorrow. I'd been referred to neurology before but not made my appointment, so I might end up going this time!

[ShannonB in reply to Maya23]

Thanks Dryad, I hope you learn something helpful.

[Maya23 in reply to ShannonB]

Hey look what I just found: youtube.com/watch?v=KzooYFZ...(Not working as expected?)

[ShannonB in reply to Maya23]

I just watched this, thank you! This seems totally like what I'm struggling with.

[Maya23 in reply to ShannonB]

Yes me too! It makes sense to me that the lupus affects multiple places in the body - the inner ear, the nerves, the brain etc as well as the joints. I found it helpful to find that this neurologist recognises that there is such a thing as 'auto-immune vertigo'. This will help me when I go to see the neurologist - I'll be able to say that I've heard that there is such a thing..

[Hidden]

Hi ShannonB. I also have recurrent vertigo type symptoms. My GP thinks it is because folk like us are prone to catching whichever bug is doing the rounds that we are susceptible to ear infections and vertigo which affect balance. I now take Cycilzine regularly ( it is often prescribed for travel sickness) and I find that it does help. It certainly is possible to have these symptoms because of inner ear inflammation. Good Luck.

Stephen

[SmilingToots]

I am experiencing same symptoms. Had MRI scan of brain ... All cler. Awaiting results of can of ear and sinus areas. I am always tigh around nos and eye when I have the vertigo dizziness and stronge fatigue.

[jayfer]

hi, I had similar problems, it got so that I had to lie down almost every day as too dizzy to walk around. My GP prescribed betahistine dihydrochloride, which has worked wonders. I no longer sleep during the day unless I overdo it, it has also helped with tinnitus. It's prescribed for menieres disease. I see my GP next Monday to see what he wants to do now, maybe referral to ENT as it is a disorder of the inner ear, hope you get sorted soon x

[ShannonB in reply to jayfer]

I go through phases like this too where I have to lie down nearly every afternoon due to dizziness. I usually associate this with my lupus flares and these symptoms worsen with the rest of my symptoms. I travel a lot by plane for work and both car motion and plane trips worsen this and make me feel worse. Do you also have trouble with motion?

[ShannonB]

Thanks everyone for the helpful replies. Does the GP think this is lupus related, Jayfer?

[Lucy74]

Yes I go through phases of this - the worst was before I was diagnosed and didn't realise the sun invoked so many problems. I was getting really dizzy all the time and would often lose my balance or walk into things - even when I could clearly see they were there, like tables, or door frames. Funnily enough, as other people have mentioned, at that time I was getting strange tingling in my fingers too. I really think that with me, it's related to sun exposure. I've not had it very badly for ages now, although my spatial awareness still isn't great sometimes in terms of walking into things, but I see a McTimoney Chiropractor once a month, and that does seem to be very effective at helping with the balance issues, so it's maybe not a lupus thing with me, it's maybe just a thing. It's hard to tell sometimes what is lupus related and what isn't!

[jayfer]

Hi ShannonB. I'm not sure what the GP thinks, I see him on Mon so maybe he will tell me then, just said he wanted to 'try' something !! I used to get terrible motion sickness, lost my legs on boats etc, but a friend had a cruiser on canal and after 6 mths I got used to it, loved the boat life, but I can't drive on slopes, I get the feeling of falling over, really upsets my equilibrium lol, driving over bridges too. I will let you know what the GP says on Monday , Jackie

[ShannonB in reply to jayfer]

Thanks and good luck with the appointment Jackie.

[hopester]

Thank you very much for this info! I suffer a great deal chronic dizziness, loss of words, flu like symptoms and I always get car sick.. its terrible. I have been diagnosed with an autoimmune disease (lupus) so this is very helpful.

[hopester]

If you find anymore info, please post

[ShannonB]

Will do definitely. Glad it's helpful. Was for me too. There must be a connection because as my flares improve, so do these symptoms.