this is a random one and something I’m trying to piece together- I wondered if any of you on your vast experience have any knowledge, ideas etc…
I collapsed in May and ended up in hospital. They checked my heart and was happy it wasn’t that.
I have felt dizzy on and off for a year. I thought it was the methotrexate- but I’m off that now and I’ve had more dizzy spells.
I often feel nauseous- I have spent this year feeling nauseous every day. My bp has been through the roof for 3 months (although it’s been a difficult 3 months it’s now where near as stressful as the last 3 years - I don’t feel it’s stress- I feel ill)
My hearing comes and goes when my RA I’d worse. I have tinnitus- this also increases when RA is flaring.
I went through a phase of falling over a lot. But the rheumy nurse told me RA doesn’t effect your balance.
I know the methotrexate wasn’t working and when steroids were stopped, inflammation came back - this happened 3 times in the last year. I’ve had a very bad flare since the methotrexate was stopped. Particularly my eyes, right leg and fatigue- let alone joint pains.
I nice GP listened to me last week and gave me some medication for labringthitis. This has made a massive difference to how dizzy and nauseous I feel. I feel the brain fog is improving and feel like I can function. But having had these symptoms felt for almost a year, and therefore not sure it’s viral, am I over thinking?
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Tealblue2
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Could well be what your GP has given you meds for. Sounds like it if the medicine is working. Labyrinthitis is awful. I felt like I was on a fair ground ride.
I don’t know but I wouldn’t be surprised - I just learned yesterday that osteoporosis can cause hearing problems.
There is no way you want to be so dizzy that you falling over though. Hopefully this doctor will get you sorted out before you fall and damage yourself.
I had a lot of dizziness and my GP gave me medication and after 2months it calmed down. My balance and gait atrocious since RA came into my life and feet can be a huge factor as more sensitive, so I disagree with your ra team but of course I am not a medical person.
Your symptoms do sound just like Labyrinthitis. …. Which is a viral ear infection, which definitely affects your balance.. if it doesn’t go away of its own volition, your doctor will probably send you to somebody who can perform something called the Epley manoeuvre ….which nine times out of 10 will sort you out.
I can be a bit disconcerting because it can make you feel very sick the first time…. I had the virus three times in about 18 months….it does tend to hang around,& takes it’s time to go away, , but as soon as I had the Epley treatment I recovered very quickly and touchwood I’ve never had it since.
when I get dizzy spells it’s BPPV. Vertigo caused by crystals in ear canal. The drugs you have been given never helped me but a vestibular physiotherapist did. I’d strongly advise getting a proper diagnosis even if only to rule bppv out from a vestibular physio. If I’d known sooner would have saved me years of misery.
The vestibular therapist can distinguish it from other things. gp sort of knows. Either way the drug you have is supposed to help regardless of cause. Please get a specialist to look. Could be more serious than BPPV. Hopefully not. You could ask GP for referral.
RA can effect your hearing, autoimmune inner ear disease (AIED). I had it and lost hearing in one ear and now use a hearing aid. I'm still fortunate. It usually effects both ears.I also have bilateral vestibular failure which means the balance system in my ears no longer functions. I'm totally reliant on sight for balance. If its dark or I close my eyes I'm all over the place. This is unconnected to RA.
Your symptoms do sound more like others have already mentioned. It sounds very unpleasant and I've heard from others it is horrible and very debilitating.
But I believe most conditions are treatable through drugs or the epley maneuver.
Hi, So glad you found a GP who listened, and that the meds are providing relief. I have noticed that when my inflammation is higher or I get stressed that I have a whooshing noise in my ears. I also feel I m still moving when I m not. I ve also found I can clear this by deep breathing and activating my vagus nerve by humming. I m not saying I have the same experience as you but I do think my ear issues are connected to my RA. I hope you are on your way to clearing up what's causing this for you and a treatment to clear it up.
Not at all, I was diagnosed with Vertigo many years ago, I thought I was on the Titanic, which came back after a bout of Cobid, I thought I was dying, its awful that balance stuff, take care. xx
I have had hearing problems throughout most of my life. Back along I lost my hearing temporarily. I go to ENT regularly. RA does effect hearing thus your balance. ENT investigated and saw this ( swelling deep inside your inner ear). My GP was not able to see this ( different equipment). Ask to be referred.
Nausea Tonic water fixes this feeling for me Just a small can
This is interesting for me because for the last eight months I've been suffering from bouts of vertigo - in fact I've had fourteen during this time. For me it appears to come completely out of the blue and lasts eight or ten hours. During the first two I am on and off violently sick after which I can only lie propped up in bed until the vertigo finally passes. I have nausea and cannot eat anything. I did not know this could be related to RA. I take Methotrexate each week.
I have been given some medication which I thought at first was helpful but in fact I think it was purely because I didn't have a bout of vertigo while I was taking it. I have seen an ENT doctor specialising in vertigo. He thinks it is positionnal vertigo and the problem being in my left ear (crystals being at the back of the inner ear when they should be at the front.) On my first rdv he got me to do a certain manœuvre and on my second I was strapped into a chair and tipped suddenly backwards and then forwards! I have instructions to sleep on my right side on two pillows. I'm keeping my fingers crossed that all this is helping because I feel so ill when it happens!
I have spoken to people whose dizziness can last for days, with nausea, but they can just about keep going. I live in France and access to the ENT doctor was quick. I do hope you get some relief soon.
Definitely ask the doctor who mentioned Labrynthitis to refer you to somebody he thinks suitable ….some physiotherapists specialise in vestibular disturbance …& will examine you to decide if the Epley Manoeuvre would be suitable for you.
If thought suitable, you would probably need a few sessions ..but whatever you do…DON’T read about this manoeuvre & try it out yourself…it could make your condition much worse. ..it is vital a professional tests you first. ..to see which movements to use….& in which direction. Sorry to be so bossy but it is only a wonderful treatment if done correctly.
Hi Tealblue. (I love that colour by the way!) I’ve had all your symptoms. I’ve had RA & a couple of chronic eye conditions since i was 21. I’ve had dizzy spells etc. I found i had 2 serious ear infections. They had to drain them. Plus i was on antibiotics. 1 of my ears were ruptured. Took 6 months to clear up. Felt so dizzy, tinnitus & very bad hearing. I felt so vulnerable. It’s scary how it can affect you. Another thing. You haven’t said what sort of age you are. (I’m presuming you’re a woman). As i was going to suggest your symptoms could loosely be related to the menopause?? If you’re not that sort of age. (Then sorry!!) Hope you start to feel more ‘normal’ soon. X
But I can only relate these issues to the RA flares - most especially the last year. I thought it was the methotrexate. But the more I think about it the more I realise I have had periods where my hearing has significantly reduced.
I thought the meds were helping. But I’ve had a normal morning today and it’s returning
You’re right, I was able to articulate it, but I feel very vulnerable. Thank you!
Sorry to add yet another option for you to think about, but I had terrible vertigo for several years. GP was initially convinced I was actually "light-headed" because I was also anaemic. When the anaemia was sorted and I still felt dizzy, he said "no you don't - you are not anaemic anymore". I had always tried to tell him hat I thought it was vertigo. Anyway, fast forward a couple of years and I saw a neurologist for other problems but mentioned the vertigo. He got me an appointment with a specialist vertigo physiotherapist who confirmed that I had " visually- induced vertigo". The problem was the interaction between the eyes and the ears and was sorted with eye exercises. So my point, I guess, is that dizziness can have many causes. Mine was worst when driving, watching telly, walking etc. so when my eyes had to cope with either my movement or movement around me. So the most important thing is for you to work out when the dizziness is worst. Good luck. It is truly horrible xx
don’t be sorry, thank you for your reply. It was why I asked as there are so many reasons and you are all full of knowledge.
Interestingly I have also been prescribed iron for anaemia and have had real problems with my eyes in the last few months. I will be more observant, thank you
This is just a thought. Could it be that the MTX caused something that the new meds helped clear, in the same way Tylenol or aspirin would help a headache. I was on MTX for two years. I was very sick on it and stopped taking it. Whatever is causing your problem, I hope it just goes away for you 🤗
I caught shingles and developed vestibular neuronitis. Never heard of it before! Excuse the pun. It felt like I was constantly on a boat. Everything moved all the time and I felt awful. The balancing balls in my inner ear had come out of their cups. Doc thought I had had a stroke. They gave me meds for travel sickness and said it would either fix itself or my brain would readjust. It took eight months.
Go back to your doctor and get more help. Good luck 🍀
Hi: I recently finished a stem cell transplant for Myeloma. Have Giant Cell Arteritis not RA. I am recovering at home. I have a lot of dizziness. I fell first night home and broke my nose. That was 3 weeks ago. Nose is on the mend, but I still have dizziness when I try to walk. I also have severe neuropathy in feet from chemo. I saw my primary for the first time since stem cell. She looked in my ears and told me my right ear has so much ear wax in the ear she can not see ear drum. Seeing an ENT is a challenge. First appt. is two months from now. So, the visiting nurse from the stem cell put me on ear drops and is planning to clean my ears in four days. I am always pulling to my right side, am totally deaf in right ear, have tinnitus in both ears. So, while vertigo is a common cause of dizziness with nausea, do not discount the ideal of simple ear wax causing issues. I was blown away. will post and let you know how the cleaning goes.
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