I feel all sufferers from this hissing madness. It came on suddenly after being diagnosed with RA doc perscribed methotrexate and approx 4 days later while sitting at my kitchen table looking at horses it happened. It freaked me out so much that I couldn't function. Literally, I was disabled, RA doc said he doubted the mtrex.caused it gave me a script of percoset and sent me on my way. I stoped taking all med for my RA I was terrified. I went to several ent''s even had needle's stuck down both ears but nothing seemed to fix me. After 4-6 months of he'll moving to another state I somehow overcame the noise. I don't know how, it's like another member said when she stopped the metho after 6 mths or so it went away. Mine too. However it always lingered in the back of my brain but I had learned to mask it or something .I'm not sure. After about 5-6 years being free from this horrible noise 3 days ago I got myself worked up due to my husband losing his job and somehow this monester showed it's ugly head and it's back with a vengence. I've scheduled an appointment with a lcoal ent doctor to see what's happened this time around. All I know is I'm believing in God to take this noise away for good, never to return. In the meantime I'm tryin anything and everything to igore it, mask it so I can live a normal life. I feel your pain and I'm here to help anyone who needs a friend or finds they can't cope. Trust me I've been there. Just yesterday I called my sister and broke down and balled like a baby just wishing it would go away. Asking why me? Who knows why us, we gave this and we eill find an answer. Never give up. Any tips on coping methods that have worked for you please do share. God knows we all need them
Much love. We can beat thus!
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leannaluv
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Hi, I've had tinnitus for 10 or so years now. I thought it was normal like part of a circuit noise to go with the nerves. It became worse with hearing loss and I have hearing aids. (pet hate: Hearing aids: like a walking aid, you're still bad at walking but you can get around better - NOT like glasses that correct vision. I can hear better but hearing is still rubbish!)
Mine is constant & unrelenting and you get to live with it, as you said. There are distraction techniques which help to reduce it's intrusion but it's forever there. I think it would be maddening to have it go then return - surely stress related from what you say.
I was on MTX for about 5 months but the tinnitus was no worse with it. Your mileage may vary.
Unfortunately there is no cure, the chances are its just as likely the stress you were going through with the onset of RA and yes the meds will have changed your system and up popped the dreaded tinnitus, it could be there tomorrow forever or go the next day and never come back. It is horrible and so debilitating. I got myself an electronic white noise machine which helped me become able to cope with the tinnitus and now i usually only notice it on bad days. Im afraid the only answer is that the more you simply ignore it the less effect it has and the less effect it has the more you tend to ignore it. It is a difficult cycle to begin but its kind of liike learning to ride a bike, the more you concentrate on trying to balance on those 2 thin wheels and throw the handle bars around the harder the task becomes. But when you find the courage to start going forward it becomes intuitive. Its a horrible illness and hard to do but quite simply the answer is to stop listening to it.
Hello Leanna, I got tinnitus about forty years ago, so I have learnt to live with it. I don't suffer from it. There are hearing aids that can cancel out the noise, but they didn't work for me. The only time it really affects me is in groups of people, pubs, parties, restaurants etc. It get so loud that I don't stand a chance to hear what people talk about. So I started lipreading classes and that has helped. I can at least get the gist of a conversation and don't have to sit there with a silly grin on my face, because I don't know what's going on. I guess I'm trying to say one gets used to it, but I do hope yours is not permanent and you find a way to avoid it. All the very best.
Mine is weird. It seems loud to.me however it doesn't interfere with watching tv,
Or anything I do. If I'm out and about doing stuff or at a ball game etc. It's not a factor. It's just always there this loud annoying hissing. Anyway I came across this supplement called Tinniticil. It's getting rave reviews. It works. I've just ordered it online waiting for it to arrive. Hundreds of sufferers are calling this pill a miracle. That they have their lives back. It's worth a try. I will give you an update as soon I get my order and take as directed. I'm believing they will work .Google it you will be amazed.it been tested and approved by the FDA. I will do what ever it takes to get my life back.
I'd like to find out if the supplement has helped you. I have the buzzing but what is worse is the music. This began in September, about 2 weeks after weaning off of Prednisone (which I'd been on since late January). I've been on methotrexate since mid-February. It wasn't debilitating at first, but now I have to have music or TV going or when in bed to try to sleep listen to an audio book. I've read that the condition has a name "Musical Ear Syndrome," which sounds like it's supposed to be funny. Ha. It is anything but funny. The source said it seems to be caused by the brain when it isn't getting hearing signals and so resorts to its own. There's more data. Must end this. Oh, and I need to tell you that by the time I'm due to get my weekly injection of MX, the "music" is not as loud or as constant. It goes with the beat of my heart (so says the source on MES, and I've found it to be true -- slowing down when I'm in bed trying to go to sleep. I so hope the Tinnitricil has helped you. Do let me know if you wish to.
When I was desperate and not coping well I read the same thing. The wires in our brain have gotten crossed or something. I may look into it deeper. So sorry for not responding, back then I wasn't coping. Hope you have found some relief.🙏
I'm not sure what happened to ne guys. It's been 5 yrs since I've been on this site. Life I guess. That said, I feel I can share a lot of things I've been through as well as hear about yours. FYI.. The pills for the Tinnitus didn't help much. Hissing 24-7 and it's true, over time you learn to cope. There's no other way to explain it. Glad to be back!
I am on MTX, it's not given me Tinnitus. However every time I flare and need to take Pred I get Tinnitus. As soon as I'm on a lower dose of Pred again the Tinnitus disappears. It's one of the side effects of Pred.
I'm so sorry you're experiencing this all again! I truly do feel for you.
I started taking methotrexate last November, and just shortly after, my tinnitus started. I was determined to be intolerant to the methotrexate after a full 3 months, so I am now simply playing the waiting game, hoping that in time as the medicine leaves my system, so too will this dreadful sound.
My rheumatologists also deny that this could be the result of the medicine, which to me is so infuriating! My nutritionist, who also suffered from RA, experienced tinnitus from her DMARDs, as well. For her, the ringing went away after a full 6 months of stopping the meds, though she warns me that it could take up to 9.
In my (brief) experience, I have learned that the more stressed, anxious, upset or overwhelmed I am, the more unbearable the sound is. When I am relaxed and focused on something else, I am able to ignore it sufficiently. I understand though, that sometimes ignoring it is not enough!
Have you tried notch therapy, or music therapy? There are several websites that allow you to match your individual tinnitus tone, and then with that tone it generates either white nose, or eliminates this particular pitch from whichever music you choose to play (I believe the music version is not free, but the alternative absolutely is).
Over time, this therapy is said to reduce the loudness of your tinnitus, as it helps your brain adapt to become less sensitive to this frequency. I can't speak to the results of this therapy, but I figure a possible natural solution that also distracts your brain for a while is worth a shot!
I developed tinnitus when I was on methotrexate. I can't tolerate methotrexate and it made me seriously ill, tinnitus was one of the many lousy side effects I got from it
I began Methotrexate 4 weeks ago. I have never experienced tinnitus until now. At first, it didn't bother me too much; sound like insects on a summer night. But now At Week 4, it is bothering me , and, in addition. I feel a diminution of hearing in my R ear, although it may need wax removal by a professional.
But the sound is in my head, not from the ears; as I had a temporary vision loss in left eye, the doctor was prompted to add Methotrexate to prednisone, but removed 4mg. Prednisone at same time.
The good news about methotrexate for me is that I do have more energy, a better sense of well being, and previous hand tremors have stopped. I also think it has helped my musculoskeletal symptoms as well.
My diagnosis is C-ANCA associated vasculitis, but my symptoms are more like PMR and giant cell arteritis; I do have the PR3 antibody at low titre.
I see that a new drug has been approved by USA FDA for giant cell arteritis called Actimmune (tocilizumab); it seems similar to Rituximab, and both approved for RA too which I do not seem to have.
Anyway, it's reassuring to know I am not the only one with tinnitus associated with methotrexate.
I am hoping to get an appt.with a neuro-ophalmologist At U. of Pennsylvania not far from where I live. He is published on Actimmune for giant cell arteritis; based on his article, I have not had some testing such as angiograms or vascular studies; this seems like a lapse to me.
Would love to hear from anyone what testing they have had for giant cell arteritis; A biopsy can only confirm, but with a negative result , you can still have it. But I would think angiogram and cardiovasularlar study is a must b/c giant cell arteritis is a large vessel inflammation involving the chest and heart.
Sorry to all of you suffering from these blood vessel inflammation diseases and effects on quality of our lives. Plz. share if you know about or have experience with this post. Thanks to all.
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My video for RA Awareness week
Benepali,,,not been my pal(i)
Confused 😳
Ear ache or RA in jawbone ?
