It’s not hearing loss, it’s Eustachian Tube Dysfunction (they think)

[ElephantLover2023]

Since having bacterial meningitis in January 2023, my ears have felt sort of blocked. After my follow up appointment a couple of weeks of coming out of hospital, they thought I had lost some hearing. I had a hearing test today- hearing is absolutely fine. They think I may have Eustachian Tube Dysfunction that cause it to feel like when you’re on a plane but your ears haven’t popped yet. Researching this dysfunction, it seems like it should go away in a few weeks but I’ve had it for months now and the doctors didn’t give me any solutions other than it may go away. I was just wondering if anyone else had suffered with this, please? And how meningitis is involved?

[gbn_]

Hello ElephantLover2023. Saw your post. Have not had meningitis, but having blocked ear I can relate to. Sorry to see that you've had this for so long. Mine started I believe with having some sinus issues along with maybe getting a bit of water in the ear after showering, a few days now, it's very annoying, I have an appointment with ENT, but not until late June, it's playing havoc with my nerves, I've tried driving up and down roads with mountains around here to see if the pressure would make them pop, chewing gum, etc. So far, I still have this, sort of feels like your head is in a fishbowl sometimes, I also suffer from tinnitis, but I'm trying desperatly to relieve, or pop this ear, Have you seen an ENT? I went to the doctors for mine, they looked inside and said that it looks like fluid in there, but an ENT I'm told would be more beneficial, I must have seen a regular doctor probably 3 times now already for this.

[Jackiemerritt22 in reply to gbn_]

you may have a CSF leak.

[Lisalisa93]

I am in the throes of H2 meningitis and for the first time have something going on in my ears. It sounds exactly like what you have. They also think it could be because of the acyclovir used to treat it.😔

[Jackiemerritt22]

I had bacterial meningitis.

I also had ear problems with fluid behind ear mild hearing loss and tinnitus all on the right side.

I also had what I would class as very minimal clear fluid drip from right side of nose, so minimal just a drip here and there I just thought it was weird.

ENT also stated blocked Eustachian tube.

I had a cranial CSF leak.

There was a hole in the bone behind my ear and that was the fluid leaking from my nose and that’s why I got pneumococcal meningitis.

[menchild]

Hi, I had a blocked ear for 6+ months following bacterial meningitis 3 1/2 years ago. It did heal and now no longer blocked. It is a very serious brain infection and results in long term issues as it is a brain that has been injured by the infection. You have an invisible brain injury. I have to pace my life and listen to my body or I get headaches, neck pain, back pain. It has improved slowly and I can do more as time goes on. It takes time to heal. Getting good sleep is important and rest is the best medicine of all. There has not been enough research done into long term effects so Drs will tell you it is something else 😂 cos they just dont know! I know myself! Maybe find a good homeopath or naturopath and other complementary therapists, they have helped me so much. Modern medicine is limited but certainly their initial care saved my life and I am so grateful. Aftercare just wasnt there, so I looked for care outside the medical model, listened to people here telling me to be patient n rest. As time goes on I am able to do more. Take care, go gently, rest and time will heal 💖.

[ElephantLover2023 in reply to menchild]

Hi menchild, thank you for replying. I’m glad you’re able to listen to yourself and go from there. I feel like that’s always something that’s hard to learn.

An invisible brain injury is a good way of describing it- it’s quite difficult to come to terms with something that you can’t see but you know in yourself you’ve changed. I went back to ENT this week about my hearing and, tube dysfunction aside, it turns out it’s not my ears that stop me from hearing but my brains ability to listen. When I’m in noisier environments, my brain just can’t process the information so I can’t ‘hear’ it which makes sense as I have trouble reading, speaking sometimes and just understanding things.

thank you for sharing with me, it definitely seems like recovery is listening to yourself in that time- especially as it’s likely to stay.

[Stace30 in reply to ElephantLover2023]

Hi Elephantlover2023 …. I believe i have this after ent dismissing my ears as fine… do you have anymore details you could expand on? Why this happens, what its called, how yo manage it etc. thanks! 🙏🏼

[ukwilky]

Hi, EL2023! What hearing test did you have? It normally turns out to be hidden hearing loss. Which is difficult to diagnose.

[ukwilky]

Hi again,

I just read your reply to menchild. Please get yourself tested for Dyslexia. As after my bout of sepsis / meningitis, I discovered after being at Headway (Another good thing to join, lookup your local branch. As they deal with all types of head injury, including hidden). That I had Acquired Dyslexia, as well as the hearing loss.

[Kay01]

I had that experience but I was told it's the effect of medication and it stopped when I finished my course

[mommadragon1]

I was searching for answers to my ear problems and found your post. I am so glad I am not the only one going through this. I also had bacterial meningitis in January 2023 with a csf leak from my ear. Had a craniotomy in March 2023 to fix a tegmen tympani defect but have felt fluid/fullness in my right ear ever since and when I lay down on my right side it gets worse and my ear actually gets wet. I have been to several doctors and been ignored because my ear and my CT scans "look normal". I brought it up to my regular neurologist a few weeks ago and FINALLY someone saw some fluid in my ear. He thinks it is a Eustachian tube dysfunction so I am returning to my ENT next week to see what can possibly be done to correct it. I'd even be willing to have tubes put in my ear if it would fix this issue. I've also wondered if it may be a slow CSF leak but my neuro doesn't think it is. I hope your issue has been resolved by now.

[kelpie25]

I have had a grommet inserted for a blocked ear, twice. The first time was befI had viral meningitis, the second last September. My ear leaked fluid until May, the grommet having been removed in March as it was loose. The first ENT surgeon referred me to a colleague and my ear was being sucked out every 7 to 10 days. In April the second consultant referred me to another, who is an expert in Eustachian tube issues, and I see him next week. The 2nd could see my tube was inflamed. The hole has closed. My hearing is severly affected. My GP prescribed an Otovent. I have a facial palsy as I had Bell's Palsy at the same time as VM in 2015, so find the Otovent almost impossible. I don't link me blocked ear with VM.