Living with Ear Pain for the Last 8 Years

[moonshine]

Hi people,
I am looking for some advice as my doctors are not listening or helping.

I have suffered with ear blockage and infections since I was a child.

After a flight 6 years ago I had the most painful ear infection ever and have had tinnitus and vertigo ever since that.

It comes and goes but in a year I would say 85% of every year I suffer from both plus constant ear pain. Burning stinging oozing vertigo tinnitus, infections, ear feels full all the time, rumbling and intense pressure. This causes me headaches neck swelling nausea, some days my ear is red and on fire. Its got to the point where I can't fly anymore go to the gym, concerts cinema listen to headphones.

If I have a couple of drinks the next day my ear is throbbing and vertigo is so bad.

I go to the doctor and always get given antibiotics. This just isn't enough for me anymore.

My social and work life are suffering as well as my mental health. I am becoming really miserable about this situation and feel that no doctors listen or understand.

The tinnitus I have learnt to live with, the vertigo, yeah I can also deal with that but the pain and discomfort!!!

Anyone any ideas what I should do or how to go about healing?

Thanks
Laura

 

[Scared111]

have you ever tried any meds? maybe for nerve pain meds?

 

[moonshine]

I have tried all different antibiotics these get rid of it for a couple of weeks an then it comes back with a vengeance. I have tried alot of the vertigo meds they are the same work for a while then stop. Good few different anti inflammatorys and pain killers but I don't want to be on them for the rest of my life if I even got a diagnosis for the chronic ear infections I would feel better rather than being told it's all in my head or to just take more antibiotics

 

[JohnnyMx]

Same as you, I does not only HEAR my Tinnitus, but also FEEL it.

I've had ear problems since childhood... hyperacusis, ear pain, headaches, red and hot ear, mild tinnitus... aprox 4 years ago the problems got worse, Tinnitus became worst, vertigo started, hyperacusis became worst... etc etc,

I had repetitive throat infections when I was a child... constant flu symptoms... I always related my ear symptoms with my throat, with my sinuses, allergies.

Same as you, I've seen MANY doctors, from generals to ENTs (including the self-called the best ENT of my town, who has alot of patients that come from California... well he was useless also).

I kind of stopped looking for a reason. I've made the peace with my symptoms. The fullness and blockage feeling is the worst... but I have made the peace with it also... the only problems is that I open my JAW regularly, without noticing it, trying to relax a little my ear fullnesss... so sometimes people look at me as if I were high on crack or some kind of drug jaja.

Have you seen a doctor specialized in nerve damage?... some of your symptoms could be related with some kind of ear nerve damage.

Regards,

 

[Lex]

Wow eight years? I had constant burning ear pain for two months (still have a bit) and it almost pushed me over the edge.

Lyrica (pregabalin) helped me.

 

[moonshine]

Hi Johnny and Lex,
Johnny I was actually moving my jaw around as I read your comment haha. I do that all the time. It feels like I have water in my ear for the last 8 years and it just hasnt popped. Sometimes I feel a pop and think OMG this is it its going to pop and I will be free of this feeling but it just makes a cracking sounds and stuff oozes out and then the pain comes back and I'm back at square one. Lex I know it really is pushing me over the edge now. I have no motivation to do anything I am just drained from this uncomfort and pain. Lyrica?? I have never heard of this. Is it a painkiller or anti infalmm

 

[DebInAustralia]

Hi people,
I am looking for some advice as my doctors are not listening or helping.

I have suffered with ear blockage and infections since I was a child.

After a flight 6 years ago I had the most painful ear infection ever and have had tinnitus and vertigo ever since that.

It comes and goes but in a year I would say 85% of every year I suffer from both plus constant ear pain. Burning stinging oozing vertigo tinnitus, infections, ear feels full all the time, rumbling and intense pressure. This causes me headaches neck swelling nausea, some days my ear is red and on fire. Its got to the point where I can't fly anymore go to the gym, concerts cinema listen to headphones.

If I have a couple of drinks the next day my ear is throbbing and vertigo is so bad.

I go to the doctor and always get given antibiotics. This just isn't enough for me anymore.

My social and work life are suffering as well as my mental health. I am becoming really miserable about this situation and feel that no doctors listen or understand.

The tinnitus I have learnt to live with, the vertigo, yeah I can also deal with that but the pain and discomfort!!!

Anyone any ideas what I should do or how to go about healing?

Thanks
Laura

I can relate to your frustration with the medical merry go round.

Biofilm ( hidden) infection comes to mind when I read your story.

That helps to explain the chronicity of your symptoms.

Have you done any work with your immune and adrenal system?

I have some articles on biofilm infections that I can send you if you want.

Have you ever had your ears swabbed in case you are able to isolate the bug responsible for your misery?

Consider lyme?

When you said your ear throbbing and vertigo worsens with alcohol, I wondered if systemic candida is a problem also. Something to think about.

In short, I would consider an integrative dr who is both lyme and biofilm literate.

The other thing I want to add is to consider tmj involvement in the generation of your symptoms, as you probably already know, tmj dysfunction can refer pain into the canal and surrounding structures.

Have you tried the basics like a tmj certified massage, heat, dental device if indicated etc?

If you feel like you have "water" in your ear, then maybe you do have a chronic middle ear effusion. Have you had a tympanogram as this might point you in that direction? What's your audiogram looking like? Could grommits be an option?

I can understand you wanting to address the root cause of your symptoms. I hope this helps

 

[Lorac]

I have nerve damage because of sudden sensorineural hearing loss. I always have the ear fullness, pressure and burning sensation and I also find those things more difficult to deal with than the constant noise or the loss of hearing. I don't have your other symptoms though - the neck swelling, ear discharge, nausea and I don't have a history of ear infections. What types of specialists have you been to? Have you seen an Infectious Disease Specialist?

 

[moonshine]

Hi Deb,
Nope, they literally look in my ear each time and say "nah we cant see anything wrong here is some more anitbiotics and take some ibubrofen"

I have never heard of most of the stuff you have mentioned. You have just educated me more than all my doctors in 8 years. TMJ though I had heard of and it could be a possibility. What and how is Lyme contracted and is it dangerous?

I have been researching and am thinking that I maybe have some sort of mastoid or cyst in my jaw head or ear. I am prone to cysts and had a large aggressive one removed last year. It was the exact same pain that I have in my ear burning red and pressure. So this could be a possibility.

Laura

 

[moonshine]

Hi Lorac,
Yeah I'm the same have come to terms with the noise and kind of with the slight bit of hearing loss. I am quite sensitive to sounds and cannot use the phone in my left ear. The left ear is the one I have all the trouble with the right I just have fluid behind the eardrum which is okay most of the time. If both my ears were as severe as my left I really dont know how I would survive and thats not being dramatic :-(

How did you get this nerve damage? I am so glad to be talking to people on here. I really felt totally alone before joining here and I am sad to see so many people with so many different problems. Ear structures are so teeny and all the things that can go wrong its just crazy

Laura

 

[attheedgeofscience]

Its got to the point where I can't fly anymore go to the gym, concerts cinema listen to headphones.

Your tinnitus may have other origins, but regardless, the last thing I would do is attend concerts (with or without tinnitus). If you appreciate your ears, then skip the noise...

 

[Lorac]

Hi Lorac,
Yeah I'm the same have come to terms with the noise and kind of with the slight bit of hearing loss. I am quite sensitive to sounds and cannot use the phone in my left ear. The left ear is the one I have all the trouble with the right I just have fluid behind the eardrum which is okay most of the time. If both my ears were as severe as my left I really dont know how I would survive and thats not being dramatic :-(

How did you get this nerve damage? I am so glad to be talking to people on here. I really felt totally alone before joining here and I am sad to see so many people with so many different problems. Ear structures are so teeny and all the things that can go wrong its just crazy

Laura

The nerve damage was probably caused by a virus so antibiotics would not help in my case.
I would try to find an Infectious Disease Specialist if I were in your situation. It seems like they might be able to find the root cause of your repeated infections. I also wondered if your mastoid is involved. I hope you find someone who can help you.

 

[Lex]

. Lyrica?? I have never heard of this. Is it a painkiller or anti infalmm

Lyrica (generic name: pregabalin) is an anti-convulsant drug that's prescribed off-label for nerve pain. It helps me but I won't take it long-term because of some awful side effects. But it helps with short-term relief.

 

[maloumelbs]

Hi, I am also dealing with continuous pain in my left ear.

It all started when I had a bad flu and was listening to music in my headphones (DJing) and putting strain on my neck by leaning forward most of the day. It started last winter and lasted for about 5 months. Those months were horrible. Pain was full on, throbbing, stabbing electric shock pain and could not handle high pitch or low pitch sounds. It was so bad i couldnt even go to work and got quite depressed. Saw ENT specialists, did scans, spend so much money all clear, had antibiotics, they even perforated my ear drum. Then i was sent to a neurologist who thought it had something to do with nerve damage but wasnt sure and put me on medication (lyrica), I was only able to use this for a short time as it was making me sleepy, down and just not myself. I started to see a chiro and done accupuncture and massage, and this is when i actually felt some relief, this was accompanied with the weather getting better. Then when the summer started i suddenly had a lot less pain and was able to listen to music again and the pain i had was gone.

But then as soon as autumn started about 4/5 months ago it all started over again, again it started with a flu and with having about 4 flu's this winter i have been struggling and have not been able to touch music at all. Also people speaking loudly or any loud sound makes me cringe.. I am currently recovering from a flu and my left ear is constantly burning and sound is a no go. I feel my head is quite tense and muscles are stiff. I tried steaming (towel over head) which gave some relief so try that as well.

I did a lot research and i have the feeling it has got something to do with my muscles and nerves which get irrited or spasms. I havent been diagnosed but tensor tympani really resonates with me. I am seeing a specialist for this and for other auditory problems this Friday and i hope they can potentially really help me. Ill let you know how i go.
Def try massage, accupuncture, chiro and myotherapy, i feel all this helps relief the pain.
http://www.dineenwestcottmoore.com.au/specialist-services/hyperacusis-misophonia#what-is-hyperacusis
Hang in there..