Hi everyone!
I’ve been having trouble with my hearing for some time now. I found out that RA had settled into the small joints in my ears and I ended up with a severe hearing loss and hearing aids. Now I’m having a new problem. Every time I turn over on my right side I get so dizzy and nauseous. I was wondering if anyone else is having these issues.
That sounds awful! I had no idea arthritis could attack the bones in the ears.
I've had vertigo before, which is very unpleasant. I'd check with doc about dizziness when on side.
Hope things improve soon for you.
Oh dear how horrible for you .I think you can get medication for vertigo.hope you are better soon
I’ve had this for a good long time and there is an exersise to stop it, it’s the labyrinth, see your GP ASAP,I know the exersise for it but i can’t show you lol. I bet there’s something on YouTube.
Best of luck it hit me when I arrived at the holiday camp and started to get the caravan off the car and that’s when it first hit and I could not get up lol.
I used to volunteer, answering the telephone and when I had this, I would lean back my head spun and spun, I was very sick it is bloody horrible. Xx
The bad thing about all of this is I am a Mental Health Therapist trying my best to keep going. When they said I had RA I thought ok I can work from a wheel chair. The one thing I’m trying to figure out is how to support myself with this dizziness and hearing issues. When it rains it pours with RA.
Go too you you tube and put this into the video search ( exercise for labyrinthitis).
It does work so try it in the morning and it will get you smiling
I really hope this works for you. Just put this into you tube, exercise for labrynthitis
Thank You Philip. I will give it a go.
Dear Maat
I have also had auto immune hearing loss and you need to be aware that it is a very niche problem and I guarantee your gp will not know much about it! Make sure you get a referral to a neurologist ideally a neuro otologist. Are you london based? If so I can recommend two.
What drugs are you on? High dose Pred may help settle it. Also some biologics have been found to help.
Try and move fast to prevent any further hearing loss.
Alll the best
Bon
Hi Bon1,
I’m so sorry you have struggled with this as well. I am US based. I am currently taking Dexamethasone, Dicflanac, and Rituxan infusions. I was hoping yesterday that the Dexamethasone would help but it hasn’t. I’ve been dizzy most of the night. I have also got Scoliosis and Kyphosis. This means I have tons of metal attached to my spine and hips to hold me upright and I can’t lay still for long. It’s a vicious circle for sure with pain and inflammation. I will be seeing my Rheumatologist this week so hopefully I can get some relief.
Maat2002
Hi Bon1, could you give me the names of the 2 London recommendations you mention pls - a good friend of mine has been struck down with this quite suddenly and she lives in London so would be grateful for any advice. Many thanks.
No problem at all. My situation is quite unusual and I was told I had labyrinthitia by gps for quite a while until pow! All the hearing in my left ear went. Thank goodness the lead gp at my practice was on the case and in the first instance I was referred to the ENT at St Mary’s in Paddington. This has to be QuICK in the case of what they call sensoneurinal hearing loss because high dose Pred will only work for a while.
It was after the same thing in the other ear a few months later and my vestibular system being nuked from orbit that I made it to Adolfo Bronstein and Barry Seemungal. Dr Seemungal I see at St Mary’s. Not sure where Prof Bronstein is nowadays.
They are both the experts in the cross over between neurology and ENT.
I sincerely hope this is of use to your friend
Bon
Xx
Thank you Bon1! I found Adolfo Bronstein here: qsprivatehealthcare.com/our...
and here: imperial.ac.uk/people/a.bro...
although he seems to specialise more in dizziness from what I can gather. Have passed both names on to my friend, but wanted to ask what your outcome was in terms of hearing loss and whether you got any of it back? My friend was given a hearing aid which made absolutely no difference so she's pretty desperate.
60mg Pred a day OR an IV infusion of methylprednisoe brought most back apart from high frequencies. This is why you need someone who knowable about this stuff- needs to be within a couple of weeks...
No gp would be confident to prescribe a whacking great dose like that. Would need a consultant.
Happy to talk to her in person if you want to email me
Bon.gordine@gmail.com
X
For how long did you take the 60mg a day of Pred?
I think 5 days - can’t remember if there was a taper because I’ve been up and down on it for ages!! The iv pulse was v effective too.
X
This is the protocol my ENT gave me for treatment. Prednisone 60 mgs per day and then taper. It helped. I have to say when he said I have rocks in my head and jello I looked at him like he was crazy. The only problem with the steroids has been that I’m on Dexamethasone then I have Rituxan infusions which means 1000mg of solumedrol as part of my premeds. All of this makes it hard to breathe. I asked my doctor if there was something else we could do because of the moon face and weight gain. Bless his heart he said to put a pad lock on my fridge and hand the key to my hubby! It’s getting close to all of the holidays and all too. I hate this disease. Extreme Pain and weight gain without eating this is not fair.
Sorry for the rant. I just had my Rituxan today and I had the same side effects as before but a little more intense. The usual headache, bone pain, and nausea. I was told it’s because I still had Rituxan in my system from 6 months ago and the infusions build on themselves. I hope they work for a longer period of time this time. They worked for 3 months the first set. I guess we will see.
Thanks for your post.
You need specialist advice from an ENT doctor.....there is treatment for this condition, but you need to be assessed by a specialit who can work out a treatment plan. Some physiotherapists are trained in this field .
See your GP for a referral....don't be sidetracked by being offered pills.
It probably won't go away 100% overnight,,but it can be scaled down so that it isn't too bothersome.
Hi, vertigo is horrible 
If it affects you when rolling over, it’s probably the sort vertigo as suggested above, which is what I have. However, I would go to the GP and get checked out to make sure it’s not some other problem. If it’s not, the labyrinth thing is the way to go. I hope you can resolve it soon, it must be very difficult to work etc, all the best, cheers Deb 
I am not sure whether I can attribute hearing loss to RA Maat because I am 61 and it is normal apparently to notice a deterioration. However I have had the ‘vertigo’ and dizziness you mention and although really distressing and inconvenient re work and daily activities, it ran its course in my case and stopped eventually.
I did Epley Manouvre exercises but there are others which work if you have BPPD (Benign Paroxysmal Positional Vertigo: small crystals of calcium loose and affecting the inner ear).
I believe that in my case it isn’t BPPD, it’s because my neck is (naturally not surgically) fused from C2-C5 and the muscle spasm that supports the vertebrae causes severe headaches and tension in my neck and shoulders: sinus type pain and this dizziness/vertigo-type reaction when I move my head. It happens when I am physically overtired and suffering from a neck strain. I used to blame Enbrel for all this but symptoms persisted during a period off Biologics so it can’t be a side effect after all.
The point I am making is, whilst you have this wretched hearing loss condition, it might be helpful to know (via MRI) whether your cervical spine is damaged too giving rise to the vertigo type symptoms.
Whatever, I really hope you can get it sorted and/or learn to live with it. Coincidentally I was a mental health worker too and closed my private practice due to this problem. I didn’t know then that all I needed was regular deep tissue massage on my neck and shoulders (only use a Sports Massage Association accredited masseur/physio!) to loosen and relax the fascia in my shoulders to reduce the headaches and ‘vertigo’ 90% of the time. I really hope this is a solution that’s effective and safe for you but check it out carefully first as obviously you don’t want to damage your neck/spinal cord by unnecessary interventions from an enthusiastic but ignorant therapist.
I suddenly lost the hearing in my right ear nine years ago. It happened in a matter of seconds. As I had always had some problems with my ears (ear infections etc) ever since childhood, my doctor didn't seem to take it seriously and said it would go away. It didn't and I should have been given treatment by and ENT doctor straight away but it was left too late. At first there was a tiny bit of hearing left and a hearing aid worked, but gradually all the hearing went so that a hearing aid is no longer of any use. I also get a bit of tinnitus and dizziness in the other ear. It was through all this that I was sent to a rheumatologist and found to have RA.
Loosing my hearing like that has changed my life. I find it hard to hear when there is noise around me, don't know which direction a sound is coming from and as I am very musical, it just isn't the same playing my musical instruments or listening to music any more. As the doctor said, I have lost my stereo.
I do hope that they can do something for you.
Very interesting I had Labryinthitis a few years ago and I got this awful dizziness and whose, felt like I was in a tumble dryer in June for about 3 weeks but as long as I didn't turn over in bed quickly but did appear to affect my right side most. It came back on Thursday with terrible sinus pain but has eased after inhaling etc so still not sure if it was Labyrinthitis again. I think I will have it checked by the GP after reading all these replies to you!
Hi, I also suffer with this, can’t believe how quickly it comes on either!! I buy tablets from the chemist called Buccastem M, Buccal tablets. They work really quickly for me and I just put one of them under my top lip, might be worth trying before you go to gp tomorrow. Pharmacists are very knowledgeable people so worth picking their brains, it was them that recommend the Buccastem to me. Best of luck. Xx
When I’m not taking my RA meds, the dizziness is unbearable. I usually take motion sickness meds and allergy meds to dry fluid in my ears. They help but don’t cure the problem. I hope you find help quickly—i know how miserable it is.
I also had dizziness in my left ear. It turned out to be my left sinus. It was blocked and I ended up having surgery just last month. I must say it has done a world of wonders. I was feeling so sick and having flares among other symptoms. Have them check your sinuses too. The ENT couldn't see it with his scope. I had to get a scan.
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