A new "wrinkle" to my journey with RA....vertigo

By f9c1sc

1 min read

For over a year I've been flaring off and on then about a month ago I 'got to' experience 2 ambulance rides to the ER (with the last culminating into a 2-day stay) because my BP was all over the map.

Blood pressure experience with RA

I've never had BP issues before. In the hospital, I had every test to make sure it wasn't my heart of a circulatory issue. I tested out "fine".

Docs were stymied but decided it might be toxicity to a drug I was on. (?????) That is actually inconclusive. Once I was home and thinking I was feeling better some of the symptoms returned then it dawned on me that I was experiencing vertigo (BPPV...google it) which I've had 2 or 3X in the past.

Dealing with multiple symptoms

I'm currently going to O.T. due to pain in my shoulders so the P.T. did the bppv manipulation which gives temporary relief.

In the meantime, I take OTC motion sickness medication. I'm so sick and tired of feeling this way. Weeks of it!!! Has anyone else had vertigo-related to RA??

My current rheumy isn't sympathetic to most of my issues so I'm plugging into a new one on 8/3 and hoping with his 'new eyes' we can figure some things out. I'm on Medicare so I don't qualify for biologics...well I do but our co-pay is way extremely high for our budget so that's out of the question.

Before ALL of this started I had trouble relating to posts of other RA sufferers.... that’s no longer the case.

My 5 yrs. since diagnosis, it would seem, was a blessing---a lull before the storm!!! My life before was limited and now it seems to be more so as being dizzy and loopy-feeling doesn't encourage me to do activities.

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lifenowwithrd Member
I have been researching this disease a lot since my diagnosis and there is a lot of documentation about how it can affect the inner ear. It sounds like this could be the issue with you as vertigo is a common issue when you have an inner ear issue. Just a thought. Hopefully you will find relief soon. This is such a mysterious disease to figure out, both for us and our drs.
1. f9c1sc Member
 Yes! I'm on support links on FB and it seems there are several of us with the issue. I used to have nearly chronic sinus issues (on that side of my head) but they disappeared when I changed my way of eating. Exchanged one thing for yet another, I'd say! I'm feeling a bit better today though my sleep last night was fragmented. My p.t. told me to sleep with my head at a 45-degree angle for 3 nights but it's not comfortable. One more night!!!
Kelly Dabel Community Admin
Thank you for reaching out LibbyRa, So sorry you are going through this. Glad you are feeling some improvement today and that you are finding others dealing with this. Thanks for chiming in LifenowwithRD! In addition to speaking with your doctor, this article on how RA can affect the ears may be helpful to you: <a href='https://rheumatoidarthritis.net/living/eh-whats-that-say' target='_blank'>https://rheumatoidarthritis.net/living/eh-whats-that-say/</a>. Also, this article with some great comments from readers, about vertigo: <a href='https://rheumatoidarthritis.net/living/ra-make-klutzy/comment-page-1/#comments' target='_blank'>https://rheumatoidarthritis.net/living/ra-make-klutzy/comment-page-1/#comments</a>. Please let us know your questions. Sending positive thoughts your way that you will feel heard by your new doctor and be on your way to feeling some relief soon. Thank you for being part of our community. Kelly Dabel, RD - <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team
1. Lori Foster Community Admin
 Hi <inline-mention username="clover48" user-id="3172184"/> . Are you unable to access the articles from Kelly's link? It sounds like you also are experiencing vertigo. Do you need ideas for coping with it? Thinking of you. - Lori (Team Member)
2. Kelly Dabel Community Admin
 <inline-mention username="clover48" user-id="3172184"/> Hi there! Looks like those links above are from 2016 so they are no longer available. Looks like from reading your other comments that you are experiencing vertigo. Glad to hear that the Betahistine is bringing you some relief! In addition to speaking with your doctor, this article may be helpful on RA and factors that may impact balance: <a href='https://rheumatoidarthritis.net/living/ra-and-balance-issues' target='_blank'>https://rheumatoidarthritis.net/living/ra-and-balance-issues</a>. Please let us know your specific questions, we're here to support you. Wishing you continued relief ahead! Best, Kelly, <a href='https://rheumatoidarthritis.net' target='_blank'>Rheumatoidarthritis.net</a> Team Member
f9c1sc Member
Thanks for the information! As I read and reach out more, I'm learning SO much more from others with RA. I woke for the 2nd day w/out the dizziness and shakiness that comes with it. You know, weak in the knees kind of thing??!! We went to a birthday party last evening (large group of about 60 folks) and we left earlier than some because the noise was affecting me. I'd say sensory over-load. In reading a couple of the threads in this site...I "might" be one of the 1 % of folks where RA affects the inner ear and hopefully it won't cause hearing deficite.
warriorwoman Member
Thanks for this post, old as it is! I am going through blood tests to confirm RA, and have been experiencing dizzy moments for about six months. About three weeks ago, though, I had a major vertigo episode while walking. It was scary. I reported it to my family doctor, and also asked that she do a blood test for RA because of unrelenting pain I was experiencing in shoulders and my left hand. Turns out I have a marker for RA, and am now seeing a rheumatologist for further tests. I'll mention the dizziness/vertigo when I next see him. I travel for my job, and hope it won't interfere with that.
Clh1981 Member
Hello there, I just wanted to say that I found what you wrote truly inspiring!!! You've had such a difficult journey and it's wonderful that you try to find a little good in each day!! It makes such a difference!! God bless!! Cat
Eaglemom Member
Two years ago, approx. Way before my diagnosis, I experienced horrible vertigo. The room was spinning, and I required assistance to bathroom so not to fall, or fly off in a spin. I was taken to ER. I didn't know if I was having a stroke or what. A very knowledgeable ER doc ,after a CT scan and blood tests, diagnosed the BPPV. She gave me medication for traveling, told me to look up the condition and if it didn't improve explained that PT could help. I have a episode once in A great while. Never progressed to going to PT. Until I read this ,I had no idea might be related to RA. Do have intolerance to loud sounds now. Weird I love loud music. But my stereo lays quiet now. Another loss to RA??
1. f9c1sc Member
 <inline-mention username="Eaglemom" user-id="4131968"/> I've had that a few times. Went to a P.T. and there is something called the Epley (sp??) and it will take care of it. I'm not sure mine was related to RA but maybe. I don't have the sound issues you have. BUT I do have tinnitis....which also can come from medications. 
2. Erin Rush Community Admin
 <inline-mention username="f9c1sc" user-id="3162027"/>, thank you for sharing this information! I found this information from John Hopkins on the exact maneuver -- <a href='https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/home-epley-maneuver' target='_blank' rel='noopener noreferrer ugc'>https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/home-epley-maneuver</a>. Thanks again for sharing, as I have never heard of the maneuver before. Best, Erin, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team Member.
hisdearheart Member
Yes, you have a 'joint" in your ears. The cochlear bones that enable you to hear can become inflamed and cause vertigo. I take daily meclizine to (mostly) control the dizziness but still sometimes have issues. I can be just lying in bed and have the whirlies. 
1. christine.laaksonen Community Admin
 <inline-mention username="hisdearheart" user-id="3248203"/> You're absolutely right. One of our advocates wrote about the joint in the ear in this article, <a href='https://rheumatoidarthritis.net/living/eh-whats-that-say' target='_blank'>https://rheumatoidarthritis.net/living/eh-whats-that-say</a>. I'm sorry that you're experiencing the inflammation in your ear causing vertigo. Vertigo can be so frustrating and scary! I hope most (if not all) days can be helped by the meclizine. Sending you a gentle hug. -- Warmly, Christine (Team Member)
clover48 Member
f9c1sc I have had numeous falls hrough vertigo. My doc prescribed Betahistine & I can't believe the difference it has made to me with the vertigo. I also take 1 baby aspirin to keep the blood thinned as it pass the vein to the brain. The MRI scan showed Cervical Stenosis. This could be a trigger.
pepalepeu53 Member
Thank you for sharing your story. I got diagnosed with BPPV (benign positional peripheral vertigo) about a year ago after they did all kinds of tests,a brain MRI, an Audiologist did some tests and that’s when they discovered it. I was happy at first because I thought it might be a brain tumor. But I was not happy to get the vertigo diagnosis, especially when he said no cure. I did the eply with PT it lasted about a day. I’ve had RA since 2009 been on a lot of meds., I’ve had to make adjustments in my life, but nothing has prepared me for this pain in the ass Vertigo it is ruining my life. I have to use my rolling walker as I am so unsteady some days, I’m afraid to use my cane. The worst feeling is if I’m standing in the kitchen or bathroom I feel like I’m falling backwards and going to faint. I can’t clean, cook etc. my apartment looks awful. My sister was helping me but she hurt her knee and after testing she has OA and a small meniscus tear in her knee cap area so now she has to wear a brace. She said she finally has some understanding of my pain and why I had to cut back. I belong to 2 Facebook groups about Vertigo, I get information but also alot of people have it recurring. We need to have a procedure that would be done on the ear to put crystals back
1. Lynn Marie Witt, MSOT Moderator & Contributor
 <inline-mention username="pepalepeu53" user-id="3253043"/> thank you so much for reaching out and sharing about your journey with RA and vertigo. You are living with extreme challenges and obstacles. I am glad to hear that the rolling walker is helping you and providing more stability to you, when walking. Also, hoping your sister knew heals, without complication. You mentioned you were unable to cook, clean, etc. Are you able to heat up prepared meals in the microwave? Thanks for being vulnerable and sharing. Please continue to reach out and thanks for being a part of our community. Just Keep Swimming...Lynn Marie, "RheumatoidArthritis.net Team Member"
schultzie Member
I was diagnosed with RA approximately 5 years ago. I have had bouts of vertigo but did not know it was related to the RA. I take Meclizine for when I am really feeling bad, but try to manage it with only Tylenol. 
1. Richard Faust Community Admin
 Hi <inline-mention username="schultzie" user-id="3153112"/>. Do I understand that you take the Meclizine for the vertigo and the Tylenol for the RA? Also, are you seeing a rheumatologist for the RA? I ask because, while Tylenol can help with pain, it does not help with inflammation and the underlying disease. There are now a lot of treatments available for RA and I want to share with you this page from our editorial team on treatments: <a href='https://rheumatoidarthritis.net/treatment' target='_blank'>https://rheumatoidarthritis.net/treatment</a>. Please know that this community is here for you and feel free to ask questions. Best, Richard (RheumatoidArthritis.net Team)
schultzie Member
 Yes I take Meclizine for vertigo. Did not know it could be associated with RA. However, I was diagnosed through RA factor several years ago. For RA I am taking Hydroxychloroquine. 400 mg a day. At first this seemed to have helped, but not sure recently. I see rheumatologist again in a few weeks. Thanks for the information on RA treatments. 
1. Erin Rush Community Admin
 I hope your upcoming appointment goes well and that your rheumatologist has some helpful suggestions to try if hydroxychloroquine is truly not working well for you anymore, <inline-mention username="schultzie" user-id="3153112"/>. Best, Erin, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team Member. 
2. Richard Faust Community Admin
 Hi <inline-mention username="schultzie" user-id="3153112"/>. As you prepare for your upcoming rheumatology appointment I thought you might be interested in this article from our patient leader Kelly Mack (full disclosure - I'm her husband) on signs it is time to change medications: <a href='https://rheumatoidarthritis.net/living/when-to-change-medications' target='_blank'>https://rheumatoidarthritis.net/living/when-to-change-medications</a>. Please feel free to keep us posted on how things are going. Best, Richard (RheumatoidArthritis.net Team)
LadyHawk60 Member
Hi. Just read original article, been dealing with vertigo for a week now. It even wakes me up at night. Yuck! I have had RA about 10 yrs. Never thought to connect the two. Right now, I'm having an RA flare-up and severe vertigo. I can't do anything that makes me move. I can't decide if I need to see Rhuemy, ENT Dr., eye Dr., or Neurologist. It seems like RA is so much more intrusive and damaging than I was told. My Rhuemy isn't sympathetic or forthcoming with information for me. Thank y'all for this newsletter. It helps so much.
1. Richard Faust Community Admin
 Hi <inline-mention username="LadyHawk60" user-id="3159112"/>. Thank you for the kind words and glad you find the site helpful. Yes, RA can be very systemic. My wife, Kelly Mack (a contributor here), was diagnosed at age two, 45 years ago, so has seen how it can impact the entire body. Next, let me say Wow, I'm not sure what doctor should come first. Vertigo has so many potential causes, it is difficult to know where to begin. Kelly is sitting here with me and her thought is to call the rheumatologist and make an appointment with an EMT. She also notes that she says this because she knows her rheumatologist will call her back (he is fantastic and you deserve a doctor who makes you feel heard). An EMT may be able to find an answer or eliminate some of the the most prominent possibilities pretty quickly. Hopefully others will chime in with their thoughts. Wishing you the best and please feel free, if you like, to keep us posted on how you are doing and to ask additional questions. Richard (RheumatoidArthritis.net Team)
LadyHawk60 Member
I'm 63 yo, Wow. this is so cool to be able to talk to helpful people like this! Thank you and your wife for the advice. I am going to call my Rhuemy and ENT tomorrow. I'm afraid they'll be booked to summer. We'll see. Thank you for the encouragment. It's uplifting to have someone(s) on my side. Keep you posted.😀 
1. Erin Rush Community Admin
 <inline-mention username="LadyHawk60" user-id="3159112"/>, I hope you're able to get appointments with your ENT and Rheumatologist well before the summer! And I hope that one or both of them offer some helpful suggestions as to what's causing your vertigo. I know it would be good to get some lasting relief from the vertigo or at the very least some workable solutions to managing the episodes when they happen. Good luck and keep us posted on how it goes, if you feel comfortable doing so. Best, Erin, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team Member.
turtle13 Member
You don’t describe your vertigo, so I’m not sure what you mean. I walk for exercise and in the middle of a walk the sidewalk will move when I’m not. It’s a very disconcerting feeling. It’s like getting off a boat, but not having your sea legs. I’m standing still but the road is coming to meet me in waves. I don’t pass out or vomit, but I do need to steady myself. I do not have BP issues, either. The dr explained crystals in my middle ear become dislodged, float around, and cause feelings of imbalance. Yes, the exercises help, when I do them. 
1. christine.laaksonen Community Admin
 <inline-mention username="turtle13" user-id="3171865"/> oh the vertigo you describe sounds very disconcerting! I'm glad to hear that the doctor was able to give you an explanation, and that the exercises helped. Were these exercises to get the middle ear crystals back in place? And is it supposed to help permanently? I imagine it would be very difficult to walk around feeling the ground is moving beneath you! Thanks for joining the conversation and sharing your experience with the community here. Wishing you a gentle day. -- Warmly, Christine (Team Member)