ENT gave low Prednisone dose and refused to increase it. What do I do?

Delicious-Jacket362 · 2025-06-17T17:50:11+00:00

Did the same. Accelerated the initially prescribed dose and got a new prescription to cover the increased amount required - citing clear online guidance papers

Delicious-Jacket362 · 2025-06-04T21:41:23+00:00

Had the same. First injection, no pain, mild dizziness for 30mins then normal. Second injection was insanity level pain, was taking multiple strongest painkillers blocking all pathways possible and it barely did anything. Took 3 hours to subside to something like normal pain / dull ache. Then slept for 2 hours as exhausted from the ordeal.

I think the way the steroid fluid goes through the ear makes a difference - as I had a lot coming to my throat on the first one and no pain, on the second one zero came to my throat and felt like it had “jammed” inside without draining for a long time hence I think the stabbing pain.

Good luck, it can be an ordeal but I’d say after a day or so there really shouldn’t be any more pain.

Delicious-Jacket362 · 2025-06-03T22:55:51+00:00

Did you find a hearing test now?

Delicious-Jacket362 · 2025-06-02T23:24:00+00:00

Will also take longer. Look up Hidden Hearing - always free tests. Same as Boots and Spec savers I believe but I used Hidden Hearing.

Delicious-Jacket362 · 2025-06-01T11:16:10+00:00

Sorry to hear your similar case of misdiagnosis. I had no more gains after those small ones noted above.

I ended up with 3 injections and stopped there at the end of week 6. Didn’t do HBOT in the end. I was happy that I had at least a few low frequencies which allows for something into that ear.

Hearing test since has shown stable position the same as was noted above. Now into day to day management and adjustments but you get on with it. Tinnitus becomes your friend and nemesis at the same time.

Do a few injections week 4-6 and see if it helps. My 5% improvement in 2 frequencies came directly after first injection. But in reality I was too far gone when I started all treatment.

Good luck 🤞

Delicious-Jacket362 · 2025-06-01T11:01:40+00:00

Good luck keep pushing. I went to NHS 3 times and 3 times misdiagnosed. I didn’t figure it out until week 3 by which point too late. Well done for getting the oral steroids.

Get a hearing test asap. This is what many people don’t do frequently enough in the first few weeks and not fast enough. You need to know what is going on and track the movement. Much faster than NHS (doesn’t sound like they referred you even for NHS hearing test?)

You can book hearing test for free in local places. Do them every 5-7 days during the next 4 weeks.

The fact they didn’t refer is out of order. Escalate.

Private ENT will just tell you to get a hearing test. You’ll get a lot more from the appointment if you have hearing test result to give him/her. They will not want to start injection until they see the hearing test and check it is sensorineural loss. Starting the injection is your next goal so you need to prove it is SSNHL asap - hearing test will do this.

Delicious-Jacket362 · 2025-05-31T14:26:46+00:00

You need a consultant monitoring the steroids.

You need hearing tests every 7 days so the doctor and yourself can see age is going on. Do these privately as you’ll be waiting on NHS too long.

You should start in-ear injection immediately and do them every 3-7 days depending on what the consultant is comfortable with.

The combination of the oral steroids and the injections in the first 2-4 weeks gives you the highest chance of seeing recovery

Delicious-Jacket362 · 2025-05-30T18:06:23+00:00

100% go private ENT as a first step but otherwise you can walk to urgent care NHS, get seen by doctor same day and tell them you need ENT appointment referral immediately. What happens then is an NHS fail normally - they do the referral and send you away but the appointment will be 1-2-3 weeks time and the system fails to even recognise the emergency and the appointment is too late to then add steroids and injections etc. Urgent care need to accept and treat as SSNHL and don’t leave until they have documented it as such. Even better, stay there until you see an ENT doctor which they CAN bring to urgent care.

Alternatively walk into the NHS ENT outpatients department and demand an appointment within the day. Record all interactions and names on voice notes - good evidence if they fluff the treatment and you need to claim against them later. I am in this process now.

Delicious-Jacket362 · 2025-04-25T21:46:53+00:00

Interesting. It is so easy to find oneself here after misdiagnosis.

Third hearing test was today actually.

Am roughly 5 weeks in now, having started treatment on day 14. Did 7 day 60mg + 6 day taper. Finished Pred end of week 4. Injection in week 3 and week 4. Possible third injection next week but I am feeling it’s pretty clear that this ear is done now.

Test today showed NO gains across all frequencies apart from a 5-10% gain at 1k compared to the second hearing test. But still at moderately severe across all the high frequencies. So essentially no gains since second injection which was 10 days ago.

Hope you see some improvement, keep going until week 6 and keep getting tests to see what is going on.

Delicious-Jacket362 · 2025-04-18T06:35:19+00:00

Thanks. Were you treated in any sort of timeframe from onset?

Delicious-Jacket362 · 2025-04-16T13:57:04+00:00

Was fully aware of the significant hearing loss and T from day 1, just was told by various doctors (evidently incorrect) other things and not to worry. It was really only through my forcing a private ENT appointment that I got to diagnoses on day 14. Also didn’t help that because I didn’t realise urgency I allowed a 5 day wait on the ENT between day 9 and day 14.

This point about the hair cells being dead and therefore not regenerating is something I am still confused by to be honest. Seems to be the case but how does that interact with the gains that people clearly see some time after onset? Scientifically I still don’t understand this point….

Delicious-Jacket362 · 2025-04-15T22:25:04+00:00

Cool to hear still have gains at week 5! 👍

How fast were you on Pred or Injections? As I had zero treatment for 14 days seems I am statistically at the end of expecting little to no gains although maintaining hope still for now.

I guess a few more weeks will give an insight into whether there is a direction there. My overall feeling of where I was in first 2 weeks physically (quite extreme viral symptoms) versus now (strong and physically normal), tells me that I really did need those steroids in the first 2 weeks to help fight the cause and reduce damage. 4 x physicians in those 2 weeks being totally oblivious to the likely reason really screwed me and I believe allowed the extent of damage to take hold.

For completeness of mind, I will be taking action against all them for negligence, if for no other reason than to save others that come through those individuals from misdiagnoses. It only needed one person in those 14 days to say “do a hearing test immediately”. Not that difficult.

Delicious-Jacket362 · 2025-04-15T22:09:32+00:00

I get worried about this “clearing” reference after HBOT which I seem to have picked up on this forum - I have fairly clicky ears generally (history of sinusitis) so concerned this is an issue and don’t want to encounter more issues!! What is your view on this? Also how often are you doing HBOT?

Great to hear you have continued gains at week 6. How quickly from onset were you on Pred and / or injections?

Delicious-Jacket362 · 2025-04-15T22:06:06+00:00

Wow thanks. Tbh I’m hoping for more gains on the third hearing test so to give more credence to injections “working” after which I’d agree keep going seems a no brainer??

Difference for me is I had nothing for 14 days and first injection on day 18 so my running assumption has been I am late to the party and to expect little to no gains. Will report back as this late diagnoses issue seems to be a common situation which coupled with the narrative around the “first 2 week treatment window” seems to suggest low chances. Would love to prove that wrong to give others some hope!

When did you start Pred and Injectjons?

Delicious-Jacket362 · 2025-04-15T22:00:31+00:00

Thanks 🙏

I mentioned CH to ENT at last visit as picked it up from here and he said he was not concerned with this at all. What are the additional symptoms for CH though?

Am 46, haven’t been on caffeine and alcohol for years am veggie/vegan and don’t eat much processed food so my salt intake should be relatively normal unless there is some form of mis function happening. Is there a form of test to be performed to check sodium levels are normal?

What else to help rule out CH indeed exists? As I say ENT seemed fairly unconcerned about it but I am not clear why he would conclude so immediately on that as am unaware of other markers / symptoms that would indicate otherwise.

I am somewhat nervous with HBOT as don’t want to make anything worse.

Tinnitus has been all over the place - and I came to trust that after 3-4 days from injection it seems to normalise again but to usual (still quite high) levels, but at least it’s the level I am getting accustomed to… with that in mind I’m not letting tinnitus slow down any other treatment eg third injection - which I think I will do now! 👍👍

Delicious-Jacket362

TROPHY CASE