Poll and discussion: Ear Problems

[Jenny TipsforME]

I’m posting this poll out of curiosity but I’m also hoping for some new tips for myself in the thread.

Do you have ear problems?

I’ve had ear problems since before I can remember. I had really bad glue ear when I was young. It was bad enough that I stopped speaking because I couldn’t hear and learning to read was difficult because I couldn’t hear phonics. I had grommets and my adenoids out (as part of a research project). I’m not sure if this was mainly related to low immune system (frequent colds with a weakness for this leading to middle ear problems) or if the general congestion was caused by allergy/food intolerance. For example, my sister and I both avoid lactose now to reduce congestion but this wasn’t really a known thing when I was little.

The initial trigger for ME wasn’t ear related (glandular fever) but it was an inner ear infection that tipped me over into being severe enough I couldn’t study/work for the first time. At that point I had crippling labrynthitis symptoms (feeling like I was on a rough sea and throwing up hourly at one point).

Years later I got ENT testing for this (the dizziness varied in severity but went on for years). Testing indicated I have an inner ear lesion in my right ear. The person testing me said this is usually caused by viral infection. I also had fluid in the mastoid area. The ENT doctor thought my brain should be able to adapt to the faulty balance signal from my right ear and put difficulty with this down to ME. When my brain is struggling ME wise the energy required to attenuate the faulty right ear information isn’t available. There does seem to be something in this and now if I get dizziness without ear infection I treat it as an early warning for needing to rest.

I’ve sometimes noticed that my ME improves just after a load of liquid (not wax) comes out of my ear. What’s going on there?

For the the last few weeks I’ve had middle ear congestion/glue ear with lots of ear pressure associated pain following a cold. This is common as a follow on problem from colds, and I seem to get colds a lot considering I hardly see anyone I’m trying various YouTube suggestions but they don’t make a difference. What do you do?

I feel like I don’t have the emotional energy to keep going to doctors about this.

 

[Trish]

I voted no, but if you added tinnitus, that would change. So sorry to hear about all your problems, @Jenny TipsforME , that's a lot to cope with on top of ME. I had labyrinthitis once for about a month and it was horrible. I felt horribly seasick and dizzy just lying in bed.

 

[MeSci]

I've put that I get hearing loss, but for all I know it might be due to one of the other things.

I haven't had it for a few months.

 

[Jenny TipsforME]

if you added tinnitus,

I’ve added tinnitus

 

[Jenny TipsforME]

that's a lot to cope with on top of ME

I’d refer to it as sick on Sick but I think it’s very interwoven for me eg both things probably related to immune dysfunction. I think if I hadn’t had ME I’d have fought off the viral infection before it caused permanent inner ear damage. If I didn’t have ME, my brain would consistently ignore the right ear balance signal without it being an issue.

 

[Andy]

Just to add a link to my tinnitus poll, https://www.s4me.info/threads/tinnitus-poll-do-you-experience-it.3158/ - seems this is quite common, at least within the forum community.

 

[Arnie Pye]

For the the last few weeks I’ve had middle ear congestion/glue ear with lots of ear pressure associated pain following a cold. This is common as a follow on problem from colds, and I seem to get colds a lot considering I hardly see anyone I’m trying various YouTube suggestions but they don’t make a difference. What do you do?

This might be caused by Eustachian Tube Dysfunction :

https://patient.info/health/earache-ear-pain/eustachian-tube-dysfunction

I've been treated for this but the treatment hasn't been successful. I just get some relief for a few days then the problem starts to reappear.

I'm almost 100% deaf in one ear and the hearing in my other ear is now going downhill very fast. In another year or two I expect to be 100% deaf and will have to start learning lip reading, which I already use as a matter of course and have done for years. But I've had no training and I'm really not very good at it. And of course most hearing people haven't got a clue how to speak to the deaf and hard of hearing, including my husband, and he refuses to learn - he just gets impatient like most people who can hear.

 

[Mij]

I have BPPV since the vertigo viral attack onset of ME in 1991. For the last 15 years I get sore ear inflammation 80% of the time.

 

[Pechius]

Maybe you could also add vertigo (not usual ME or POTS dizziness)?

 

[mariovitali]

While having ME/CFS i had tinnitus and also there were 3 cases of having hearing loss for about 12 hours on average.

Each hearing loss incident (all three were unilateral) would start by having the impression that my ear was somewhat blocked. That would then progress to even profound blocking and then loss of hearing.

 

[Jenny TipsforME]

I’ll edit vertigo in

 

[Jenny TipsforME]

Eustachian Tube Dysfunction :

Yes this is what I assume it is (glue ear is this type of problem, so something I’ve always been prone to).

For the last 15 years I get sore ear inflammation 80% of the time.

I can empathise with this

 

[andypants]

In addition to, or rather than, a sore throat during PEM I always feel like I’m about to have an ear infection.

I had a really bad one when I was around 8, the only time I was ever really sick before the infections that brought on my ME (or a precursor) at 19.

Other than that though, I haven’t really had any ear problems, so I voted ‘about average’.

 

[Webdog]

Not recently, but I had recurrent ear infections when younger.

 

[AliceLily]

I can't recall ever having an ear infection. I do get a thick feeling in my ears from time to time but that could be due to chronic sinusitis.

I have had two bouts of vertigo since having ME. The last one was due to a small knock to the head.

 

[Ravn]

Ticked tinnitus which started about the same time as the ME, gets worse after eating (why?) and during PEM, so likely linked in some way.

Also get bouts of searing ear pain, mercifully always brief, but not sure of the cause so didn't know what to tick for that. Could be herpes since I occasionally get the blisters on the outside of the ear but hard to tell for sure on the inside.

 

[WillowJ]

I’ve sometimes noticed that my ME improves just after a load of liquid (not wax) comes out of my ear. What’s going on there?

It’s possible this is a cerebrospinal fluid (CSF) leak. Theoretically, they can give you a plug kind of thing to put in your ears to collect the fluid. Then they can test this for a particular protein found only in CSF.

https://www.csfleak.info/what-is-a-cerebrospinal-fluid-csf-leak/diagnosis/

I read somewhere it’s common for pwME to have intracranial hypertension, but we don’t get diagnosed as we don’t seem to have the expected type of massive headache

 

[WillowJ]

I did have sticky wax buildup in my ears as a small child, and oddly enough my pediatrician told my mother to get liquid stool softener and put that in my ears to bring out the wax (leaving it in a while and then draining it out, turning side to side). It worked. I never heard a diagnosis, though.

I still get annoying wax, tinnitus, pain, a fluttering sensation like there’s a moth wing (or a one-winged moth) in there, and pain. Also some thin fluid from time to time. I don’t get diagnosed with ear infections.

I have had occasional transient hearing loss, but I associate that with the initial probable encephalitis I had at onset, and more usually migraines.

I do get the blocked ear feeling and have less acute hearing, but I normally have hyperacusis.

 

[RuthT]

Recurrent ear infections - Otitis Externa for years with lots of antibiotic treatment. Has taken ages to get to point of no infections.

Also developed an allergy (ears only) to Non-Bio washing powder & feather pillows. Have had to change to hypoallergenic pillows & detergent.

Specialist said ‘You’re weird’. Was meant kindly as in, ‘baffles me’.

 

[Wonko]

When I was 17 I developed tinnitus (well that's the first time I remember it as a thing, long before I knew it was a thing).

When I was 18 I went partially deaf for several months, I could only hear low frequency sound, loud low frequency sound. I got hit by traffic quite a bit as I couldn't hear anything smaller than a bus and vision has always been a much lower priority sense than hearing.

It cleared up, but since then I've had recurring ear infections, not generally painful, but my ears close up inside despite my attempts to keep them clean and open.

This is an ongoing issue, fortunately it's normally one ear at a time that...blocks is the wrong word ans nothings blocking them...swells up inside and closes/narrows, when both do it at the same time, it's not even quiet, tinnitus.....lol