Steroids: Prednisone / Dexamethasone / Others (Oral and Injections)

It is normal that tinnitus spikes on a high dose of prednisone like that. For me it didn't work... if you don't feel well, it is best you stop prednisone ASAP.

 

Please don't use prednisone just after hearing a screaming child. This is strong medication and it is not intended to be used for that.

 

Way worse than when this all began.
On week 3 now.

Doctor said that I needed to continue the taper.

I am in the worst condition of my life.
Worst tinnitus of my life.

I highly regret starting the Meds.

My spikes were definitely not this elevated before.

It's all I hear all day long now.

Not sure if it's giving me hyperacusis as well.

Because before all this.

It wasn't super sensitive.

 

There is this mantra among ENTs about prednisone being the standard treatment for sound trauma, tinnitus, hyperacusis etc... for pretty much everything basically. Even very experienced doctors prescribe this poison which is prednisone.

 

For one, multiple weeks is ridiculous. Never use this doctor again.

Second, your anxiety will actually increase your physical response to noise. You will not only be able to cope better when you’re off of the meds but your sensitivity will objectively decrease.

 

Hi all,

Just adding my experience with Medrol (Methylprednisolone).

Background:
- 10/2018
Cause: Car accident
Description: Single tone tinnitus ~10 kHz, loudness 7/10, but not very invasive -> habituated quickly

- 04/04/2020:
Cause: Acoustic trauma (cumulative due to woodworking)
Description: Multiple tones fluctuating rapidly (like someone is striking a keyboard) - range 4 kHz - 6khZ, loudness 5/10

Treatment: Medrol - start 07/04/2020 (3 days 62 mg, then taper day by half every 3 days, total of 12 days).

Result:
During Medrol treatment

• Acoustic trauma tinnitus: No change in tinnitus, had one day almost completely without tinnitus, but came back screaming in the evening.
• Car accident tinnitus: split up into multiple tones: (single tones higher in pitch, crickets, buzzing) and became louder 8/10 -> could also be due to high anxiety levels/stress/

Currently (15/05/2020)

• Acoustic trauma tinnitus: Tinnitus started to die down during day, but comes back at night (4/5 hours of sleep) as of 29/04/2020. When tinnitus is back, intensity remains unchanged from onset.
• Car accident tinnitus: remained as described above.

I'm still hoping the "tinnitus-less" periods will become longer and longer, but the fact that the maximum loudness does not decrease really bothers me.

FYI, started HBOT today, will report on my the result in the HBOT thread when treatment is completed.

Kr,
Alex

 

What is a standard dose?
Definitely ridiculous.
Almost drove me into the deep end.
Hard to trust any doctor during these times. Especially when you cant even see then in person (COVID-19).

Am really hoping you're right about then sensitivity...

Also hoping it stops roaring over everything and anything I try and do.

 

I suffered acoustic trauma and was prescribed a month long dose of prednisone.

7 days 60mg
7 days 40mg
7 days 20mg
7 days 10mg

The first 3 weeks were hell in terms of side effects.

Anxiety / mood swings / depression / headaches.

And worst of all...

Spiked tinnitus.

It's horrible.

On my 4th week now.
Most side effects have improved.
But the tinnitus spike is at an all time high.

Is this normal?

Will it come down after the dose is completely finished?

 

Did you finish with prednisone?

 

4 more days of hell
Spikes are at an all time high.

I'm hoping this isn't the new norm

 

I will try not to have prednisone ever again. It never did anything and has side effects, on top of giving you a bad time (lack of sleep, nervousness) when you are on this medication.

 

What side effects did you deal with?

To be honest, I think it may have helped with SSHL, as during the first week, my hearing truly was muffled.

But who knows.

 

I only experienced sleepless nights and was very nervous while on the medication. I didn't experience anything else, but if you read the information that comes with the pills there may be side effects in case on prolonged use or in the long run, so for me, I am done with prednisone.

 

Ya. I experienced a bunch already.

Definitely nervousness and elevated heart rate for sure.

Resting heart rate used to be 55-60.
Now.
Haven't seen it under 75 lol.

Hoping that subsides upon completion of meds.

I probably wouldn't take it again either.
Unless with confirmed hearing loss.

As I said in this instance.
It was impossible to get in for a hearing test (coronavirus) so edge on the side of caution.
I think it may have helped restore some hearing.

But definitely didn't do anything for the ringing.

Ringing loud as ever.

 

The ringing usually goes up with prednisone and then subsides after stopping the medication.

 

@DingDong
How are you now?

 

@lucy_snow
Better then I was @ the time of this post I guess you can say -
Been off the meds for about 2 weeks now I think.
Lasting side effects still sticking around.
As mentioned previously - Heart Rate still extremely elevated -
And ear is still ringing louder then Ever. =(

 

Maybe doctors prescribe prednisone too often, and without really taking into account side effects.

 

Or KNOWING the true side effects.
I am not a fan of big pharma, and questioned my ENT about side effects before starting the medication.

 

Steroids are powerful drugs, but they're also widely prescribed, so I believe the side effects are well known.

You just have to kind of get through the period of medication.

But in the netherworld of tinnitus treatments, steroids, if given early enough, are one of the few things that have demonstrably helped.

They helped me.

 

Hello all! So I developed tinnitus from ototoxic medication 2-3 weeks ago. When I got my hearing tested the audiologist said I have ‘amazing’ hearing and so my ENT initially declined steroid treatment. This morning he called me and said he had changed his mind and gave me a script of Prednisone 25mg for 5 days, dropping to 12mg for 5 days after that.

As I’ve already experienced quite severe adverse side effects from a medication recently I’m terrified to take the prednisone. Has anyone seen any permanent improvement from it??

I have bad anxiety already so the possibility of that being amplified by the medication is pretty scary.

 

In desperation I saw a new specialist as my tinnitus is out of control, I'm totally debilitated and in the grip of dark thoughts, pushing through minute by minute just for my kids. I was not expecting too much as we know the condition is not understood really, and indeed what I got is really some standard suggestion that is not really a strike of genius, but as I said I am desperate. I was hoping this specialist could give me some opinion on the gaba drugs role being also a neurologist, but nothing. Here is what he proposed (@Greg Sacramento kindly gave me his skeptical opinion which is quite important to me but would like to hear other people's experiences/opinions).

What he suggested is steroid injections (Dexamethasone). I know these help immediately after the trauma or ear infection. I'm 20 months in and counting so the timing is bad in that sense. However he says there is a chance that I have hydrops based on old ECOGs (I don't dare do a new one as it's quite noisy) and an old positive otoblot blood test suggests I may have had an immune reaction to a virus or there may be a component of autoimmune disease (although my hearing is stable, it's just the tinnitus worsening rather than the hearing).

Now this is not without risks. I had balance problems in the past, now resolved. The risks of the injections are, approximately:

4% long-term balance problems

1-2% hearing loss

4-6% increased tinnitus (but temporary apparently)

Risks of damage to eardrum negligible, pinhole heals in 2-4 days.

Anyone has tried injections late in the process and benefited? Research papers are not very encouraging, there is a small chance this can do some good but really small, so I'm weighing risks and potential benefits.

Thank you in advance for your opinions and experiences.

EDIT I know there is already a topic on steroids in the treatment section, but this is a question about steroids late in the process so I hope it's ok to open a new topic.

 

Only Serum antibodies - can tell if one has autoimmune inner ear disease.
So I wondered if your doctor give this testing.
https://www.labcorp.com/tests/165750/anti-68-kd-hsp-70-antibodies-western-blot

Sensorineural hearing loss, commonly referred to as nerve deafness, may be caused by genetic or acquired factors, such as infections, or it can be immunologically mediated. In the majority of SNHL cases, no cause is apparent and such cases are referred to as idiopathic SNHL. Serum antibody tests to anti-68-kD inner ear antigen can aid in identifying these cases. Using the Western blot technique in patients with progressive SNHL found 35% to be positive for a specific anticochlear antibody in their serum. Recent studies have shown that 32% of patients with idiopathic bilateral SNHL are positive by Western blot. Anti-68-kD (hsp-70) antibodies also occur in approximately 60% of patients with bilateral and 35% of patients with unilateral Ménière's syndrome, an inner ear syndrome that affects balance and hearing.

I made no comment in other thread yesterday about injections. I give a link article to the highest rated article on the subject. It had time period graphs for success rates. Medically from my knowledge - risk is small if done by an experienced doctor. For that reason - consider going for it.

I sent an email to an old friend, now living in San Diego, a pharmaceutical GABA, immune cell and autoimmune disease researcher to see if there's any pharmaceutics that may help you. He may need results from the test above. Maybe some of the tests that I linked in other thread.

 

Thank you very much for this, Greg. I will enquire about the test, I need to find a clinic that does it. It would be quite helpful given also my past with balance problems although it was more PPPD than Meniere.
I wonder why the first specialist ordered the other otoblot test if that was not really actionable or conclusive. One really needs to become his own doctor.
I'll talk to my specialist and if he does not have the resources to organise the test will need to get it done elsewhere.
Thank you also for emailing your friend. No one in the UK has dared expressing an educated opinion on the gaba issue, including otologists, neuro-otologist, pharmacologists and psychiatrists. The two drugs I took were pregabalin (normal to low dosage, 2 years, now off completely) and Clonazepam (4 months, trying to come off, again normal to low dosage). There are gaba receptors in the cochlea, you already mentioned the olivocochlear system in the other thread (I didn't know that part of the cochlear system before you mentioned it), so I wonder if these gaba drugs may downregulate some receptors that trigger tinnitus, and if this can resolve or if the damage can be permanent. Anecdotally we have both cases, some people come off pregabalin or clonazepam and are stuck with tinnitus, others see it go into remission after months or years. It is rather confusing. Given my virus induced tinnitus I hope that the Gaba hypothesis allows it to calm down and make it bearable, that is my main hope, I think hoping for complete remission is unrealistic. I need to find a way through for my children. Thank you again, Greg.

 

Sorry to hijack this. Does anyone know if it's hard to convince a doctor to try injections?

 

@Zugzug, my experience is that it depends completely on the health system where you are. If you go to a private otologist I think it should be relatively easy to get them prescribed, especially in the early stages. I would choose a surgeon ideally, you need someone with a good hand, but the procedure and the material injected are very standard. However, if you stay with public health services, it may be trickier. Let me tell you my experience in that regard.

For the UK, I have a good doctor with the NHS, this doctor is supportive, and also a good person, and a tinnitus expert, research level, but this specialist refuses to do anything unless there is very strong evidence for the therapy. So we did the usual tests, hearing tests, OAE, MRI, all the tests for balance, but no cochleography for example. I was denied injections there because the relative stability of my hearing (up to 8khz) would be against autoimmune disease, and they discarded the hydrops hypothesis that was suggested partly by the electrocochleography (ECOG) I did privately because there was no other evidence of hydrops. Eventually we came to a standstill, I was begging them to try something else because I was desperate, I had long discussions but this NHS specialist would try to convince me that all the things I wanted to try were not supported by evidence, and would try nothing except referring me for psychological support. I was left with an "anxiety makes tinnitus worse" diagnosis that I didn't believe for a second, as I could relax very effectively but the tinnitus would never even fluctuate. I tried tinnitus-oriented osteopathy, acupuncture, meditation. I could relax but the tinnitus would not move one inch, and kept worsening. So I went private, and one of the first thing they told me were injections. This first private specialist who had done the ECOG and wanted to do injections wanted also to insert grommets in my ears. I was not convinced of that as I thought my Eustachian tubes were fine and went to a second private specialist who checked them thoroughly and told me I definitely didn't need grommets. This was also the opinion of the NHS doctor. This made me suspicious of the first private specialist. The tendency if you go private in the UK is to do more than needed because they make money that way, hence grommets when you don't need them. This made me suspicious of the first specialist regarding also injections, but in retrospective perhaps I could have tried the injections anyway. At the time I asked the NHS doctor whether he would recommend them but he said no, he discouraged me to do them even privately, while the second private specialist told me he thought there was only a remote possibility they would help. So I waited and did psychotherapy, but it didn't really help me much. Eventually, out of desperation, I recently went to see a third private specialist, and he also suggested injections based on the limited evidence (but no grommets fortunately).
I am not sure injections are fully supported by the evidence in my case, but the point is that I have to try something, as long as it is reasonable and the risk/benefit analysis makes sense. I think this specialist sensed my sense of urgency and proposed a kind of standard procedure. I would have liked him to dare more, but I guess there is not much else one can do at this stage.
So it's a little mess in the UK, you really need to go private to see some action beyond psychotherapy and very obvious diagnoses where the treatment is granted, or at least this is my experience, perhaps other people have been luckier.
I don't remember where you are based, I guess in the US and EU it should be relatively easy to access this treatment with a little research and going private, I am not sure about public health though. The NHS said very clearly "no" to me, and maybe they are right, who knows, but I need to try solutions as I am desperate.

I take the opportunity to ask again to other forum members if they have experience with steroid injections late in the process (20 months+). I had posted this as a new topic in the support forum but this has been appended here, so I am concerned not many people will see this.

 

@Chinmoko Heard back from friend. He and associates will help for free. Several with multiple medical degrees on his side and on your side will be needed. Insurance may not pay on your side. Money talks - he, as many researchers feel that medical teams should spend many hours with a tinnitus patient when hearing loss and tinnitus isn't obviously caused from noise. I wrote a blog on team management from researchers and posted it here several months ago. Researchers are feed up with lack of medical care - improper medical care along with lack of knowledge for those with tinnitus and pulsatile tinnitus. We will need to go private, but you can can post what you wish here.

 

I can relate to that. I have seen so many medical doctors I lost the count, and no one is giving me a clear direction or even a diagnosis.
Having said that, thank you very much, Greg, for your help. I'm in a very poor state and I need to find the energy to get organized. My hope is that the injections can improve a little the symptom and allow me to function a little better to take more action, at the moment I'm in a state of complete desperation/exhaustion that even daily life tasks have become hard or impossible and my mood is horrible. At the moment I would just like to know how likely it is that the very debilitating nature of my tinnitus and the constant worsening I had from inception are due to the gaba drugs I have been taking and tapering for these 21 months. This is pregabalin for 17 months, tapered to zero with many difficulties, and clonazepam for 4 months after I hit zero with pregabalin, as I had a tragic event in my life exactly the week I hit zero and was in a desperate state. Unfortunately, despite reports of clonazepam quieting tinnitus in some patients, it didn't work for me and now I'm trying to come off. Would your friend have an educated guess on this? Because I get opposite advice: on one side I'm told I should come off the drug as I could be in tolerance, compounded by previous use of pregabalin, on the other side other specialists think that I should stay on it or updose because I'm too distressed and they don't think it's a tolerance problem or that tinnitus has worsened because of the drugs. I can send more details and a timeline and doses if needed. Is it possible or likely that coming off gaba drugs completely and staying off may stop the worsening by allowing my gaba receptors to normalize and improve the symptom making it less distressing? What do pregabalin and clonazepam do to the gaba structures in the cochlea? I know that a yes/no answer is impossible, but I would value her/his opinion and an educated guess on this. I would like to briefly correspond with your friend on this. I can send the questions in a PM if you are ok and you can forward to her/him in case you wish her/his identity to remain confidential. More generally is it ok if I PM you? The PM system in this forum is a little strange and I'm not allowed to PM most people the first time, I need to follow them and then ask them to PM me first to make contact. I'll follow you and if you can send me an empty PM I can respond and we can communicate via PM.
This is a very difficult moment of my life and I really appreciate your help, Greg.
EDIT Greg it turns out I was already following you (not surprisingly). I tried to PM you but usual problem. Please PM me with an empty message if possible. Thanks

 

I had steroid injections in my left ear in 2010. They used dexamethasone I believe. 3 injections spaced out about a week apart from what I remember. Also injections at Shea in 2011. Not sure if they did much. Maybe the ones with lidocaine would work better?

I had a barotrauma in 2008 from a flight. Got fluid in my left ear. Recently found out I have grade 5 internal derangement in my left TMJ so am looking at that now. Noise is really annoying atm. I’m going to try another steroid injection to my left TMJ if they will do it. Possibly try prolotherapy again. Never heard back from that Dr. though after I emailed him my TMJ MRI report.

 

Thank you for letting me know, @just1morething. I hope the TMJ injection works.

For me it's a desperate attempt, I have to keep trying because I cannot go on like this and i have a family depending on me.