Severe Tinnitus Worsening During Corticosteroid Withdrawal After Long-Term Use

[BootsNoMore]

Hi everyone,

I just wanted to reach out and see if anyone could share their experience with a severe increase in tinnitus during a withdrawal reaction to medication. I'm experiencing a change in my tinnitus that is severe, and I mean totally unmaskable, audible anywhere, severe, since lowering the dose of my long-term corticosteroids. I've been on high doses since 2018 for an autoimmune issue.

I don't believe this is inflammation returning, because I'm also experiencing many other symptoms similar to those people report when withdrawing from benzodiazepines or SSRIs, and this has been going on for many months.

Any hope or personal anecdotes would be appreciated. Despite having had tinnitus for 14 years, this is truly at an unfathomable level, and I just don't know how to move forward.

P.S. I should add that in the past two days, I have also developed a constant low-frequency pulsating hum or drone in my right ear. It is not in sync with my pulse.

 

[delta784]

Hi everyone,

I just wanted to reach out and see if anyone could share their experience with a severe increase in tinnitus during a withdrawal reaction to medication. I'm experiencing a change in my tinnitus that is severe, and I mean totally unmaskable, audible anywhere, severe, since lowering the dose of my long-term corticosteroids. I've been on high doses since 2018 for an autoimmune issue.

I don't believe this is inflammation returning, because I'm also experiencing many other symptoms similar to those people report when withdrawing from benzodiazepines or SSRIs, and this has been going on for many months.

Any hope or personal anecdotes would be appreciated. Despite having had tinnitus for 14 years, this is truly at an unfathomable level, and I just don't know how to move forward.

P.S. I should add that in the past two days, I have also developed a constant low-frequency pulsating hum or drone in my right ear. It is not in sync with my pulse.

Mine started after IV Methylprednisolone. I would not be surprised. Do you take it orally or through IV, and which one?

 

[Sydnears]

I have no personal experience with this, OP. You have my sympathies, though. Can you go back up in dosage and try a much slower taper? I know this did work for somebody who was on mirtazapine - I remember reading about it last week.

FWIW, I have three tones. I just went out for breakfast, and now my most annoying tone is reactive. I can hear it everywhere, all the time. You're not alone.

 

[BootsNoMore]

Mine started after IV Methylprednisolone. I would not be surprised. Do you take it orally or through IV, and which one?

I have been on long-term oral steroids for many years. My ear issues actually improve with steroids, but worsen when I stop taking them. I just found out today that my imaging suggests I likely have intracranial hypertension, which can apparently be helped by steroids and also caused by steroid withdrawal. I hope to have more information soon, and I am hopeful that treating this may help at least my pulsatile tinnitus and my non-ear issues. We shall see!

I have no personal experience with this, OP. You have my sympathies, though. Can you go back up in dosage and try a much slower taper? I know this did work for somebody who was on mirtazapine - I remember reading about it last week.

FWIW, I have three tones. I just went out for breakfast, and now my most annoying tone is reactive. I can hear it everywhere, all the time. You're not alone.

Thank you so much for taking the time to respond, @Sydnears. I am sorry you are dealing with multiple tones as well. It really wears you down when there is nowhere to go to get away from it. I have severe high-pitched tinnitus, mild pulsatile tinnitus, a new low-frequency vibrating sound, and musical ear syndrome. The only place I do not hear the high-pitched tinnitus is in the shower, but unfortunately the shower noise triggers music.

Good suggestion about going back up. I did increase the dose slightly, which may have taken the edge off. I also just received some new medical information, which I posted above.

How long have you had tinnitus? I hope today is a quieter day for you.

 

[Sydnears]

I have had it for four months, though it has recently worsened with a new high-pitched tone that I hate. It has replaced my not-so-bad cicadas.

This truly is a terrible affliction. I am hoping to habituate, but right now I am not doing well, to be honest. I just have to stay positive.

 

[BootsNoMore]

I have had it for four months, though it has recently worsened with a new high-pitched tone that I hate. It has replaced my not-so-bad cicadas.

This truly is a terrible affliction. I am hoping to habituate, but right now I am not doing well, to be honest. I just have to stay positive.

Just hang in there! Although I have been dealing with a recent worsening, it is likely due to a separate medical issue. I have had regular tinnitus for 14 years. The first year was rough, but over that year it both reduced significantly in volume and I got used to it. This is entirely possible, even with severe tinnitus that you can hear over everything.

Although I have checked in here every few years to see what is going on, it is important to remember that most people who post are those struggling at the moment (myself included, for now). When we feel better, we do not want to think about tinnitus or post about it. For this reason, I would suggest that while this place is a great resource, you should be careful how you consume the information so you do not get unnecessarily discouraged. Try to stay off the forums as much as possible, and when you do visit, stick to the success stories section for now.

I hope that helps in some way. I remember those first few months of tinnitus all those years ago, when I was in my twenties, and I would not wish them on anyone. But I have had a great life in the years since then, even during times when the tinnitus has been very bad. You will have many great times ahead too!

 

[delta784]

I have been on long-term oral steroids for many years. My ear issues actually improve with steroids, but worsen when I stop taking them. I just found out today that my imaging suggests I likely have intracranial hypertension, which can apparently be helped by steroids and also caused by steroid withdrawal. I hope to have more information soon, and I am hopeful that treating this may help at least my pulsatile tinnitus and my non-ear issues. We shall see!

Thank you so much for taking the time to respond, @Sydnears. I am sorry you are dealing with multiple tones as well. It really wears you down when there is nowhere to go to get away from it. I have severe high-pitched tinnitus, mild pulsatile tinnitus, a new low-frequency vibrating sound, and musical ear syndrome. The only place I do not hear the high-pitched tinnitus is in the shower, but unfortunately the shower noise triggers music.

Good suggestion about going back up. I did increase the dose slightly, which may have taken the edge off. I also just received some new medical information, which I posted above.

How long have you had tinnitus? I hope today is a quieter day for you.

The problem is that IV or oral medication cannot cross the blood-brain barrier.