Is tinnitus an ME symptom? - Discussion of evidence

[Jonathan Edwards]

You cannot see the irony here?

No, there is no irony in what I am saying. That is why I find it so strange that you should find it.

I am simply pointing out what is likely to be an own goal.

As far as I can se in the USA because the CDC or IOM or whoever did not stick to clear arguments things are likely to unravel back to where they were. In the UK the NICE committee did a good job but because they did not stick to clear arguments there is wriggle room for both CBT and GET. Maybe my uncompromising approach is not tactically ideal but over the years it has paid off for me. Not in financial terms but in terms of getting worthwhile things done.

 

[TigerLilea]

Over the years of belonging to various ME/CFS groups, I have seen too many people attributing any new medical symptoms to ME. Anytime someone has a new symptom they should get it checked out by their GP as chances are it has nothing to do with ME.

 

[duncan]

Absolutely not. How can one person have any experience of whether or not their symptom is associated with a condition they are known to have? Association is established across a population, not in an individual. We are talking about association in the sense of a statistically higher rate of concurrence.

By reading. I then explain why reading levels the playing field, e.g., it provides readers with knowledge of those associations where they have been documented.

 

[duncan]

And don't be so fast to dismiss the power of anecdotes. It's what many case studies are all about, and case studies frequently defy large study results, and can help inform changes to orthodoxy.

I have no idea what that means either.

Look up Vickie Logan. Her singular case study almost dismantled Lyme orthodoxy. Before the medical case study, her story was just an anecdote. So one patient sans statistical associations can influence in a powerful fashion medical science.

 

[John Mac]

N = 1.
My own tinnitus is directly related to my ME symptoms. When I'm reasonably well I don't have any tinnitus.
But when I have PEM I have pronounced tinnitus in my right ear the level of which is directly related to the severity of my ME (flu like illness etc). When my ME is at it's worst I also get it it in my left ear but not as bad as in the right ear. The ringing in my right ear is the first indication of PEM onset and it is the last symptom to resolve itself (3-16 days later).
I can't separate my tinnitus from my ME, they appear to be part of the same problem, I can never have one without the other.

 

[Hutan]

n=1
Looking back at my records, here's data from 95 days where I recorded a whole lot of symptoms and general wellness from fairly early on in my illness. I recorded the presence or absence of tinnitus.

For wellness,
ok - did not have to retire to bed or the sofa permanently until the evening
so-so - retired to bed or the sofa by mid-afternoon
bad - all day in bed, pem




For orthostatic intolerance, I recorded the increase in heart rate in the 3 minutes after standing, first thing in the morning


I personally think it's likely that my tinnitus was associated with bad days, and with the onset of ME/CFS. Tinnitus wasn't something I noticed before I became sick. After being sick a while, the frequency of tinnitus reduced. I rarely have it these days.

Maybe it's possible that on the bad days, my brain did not have the energy to disregard the noise that might actually have been there all the time?

 

[Trish]

That's interesting, Hutan. I cope with my tinnitus by distractions, either having radio or audiobook on while resting rather than silence.

I notice it more when I'm crashed and feeling too sick to concentrate on external sounds.

I don't think the tinnitus is necessarily objectively worse when I'm crashed, just it bothers me more so seems louder.

 

[Hutan]

Yes, it's possible that it's just that - attention bias. But on the days when I did not record tinnitus, I really don't think I had it. There was either a high pitched note, or there wasn't. It didn't feel like a thing I could choose not to notice.

Looking at the data a bit more, I started a trial of florinef early on in the monitoring period. For 8 of the 17 days that I took florinef, I recorded tinnitus, although I did have tinnitus before and after the florinef. (I didn't find the florinef at all helpful, and gave up on it.)

For 4 of the 7 days that I took nurofen, I had tinnitus, but that is probably just a correlation with bad days and migraines.

I do understand what Jonathan is saying, and try hard not to leap to conclusions about symptoms. I have never told a doctor that I think tinnitus is part of ME/CFS (or mentioned that I had tinnitus). I haven't analysed my records on tinnitus until now, although I had the feeling that there was the association that I showed.

 

[Art Vandelay]

I had very mild tinnitus prior to getting ME/CFS. However my tinnitus became noticeably worse the day I came down with EBV.

Similar to @John Mac, my tinnitus ramps up when I'm in PEM. It's one of the first signs of PEM for me (along with pain in my calves) and is so reliable it is one of my warning signs that I need to immediately stop whatever I'm doing. I can usually predict the intensity and duration of a crash from the volume and pitch of the tinnitus.

A few years ago, I had a significant setback in my ME. (One doctor said it was a reactivation of EBV but I haven't seen the test results to confirm.) In addition to the standard tinnitus I get in a usual crash, I could hear a second (and sometimes a third) kind of tinnitus at a different pitch and volume from the first.

I no longer mention tinnitus to doctors after being told that reporting it was a sign that I was 'catastrophising' and was 'overly focussed on trivial symptoms'.

 

[Jonathan Edwards]

I think the problem with tinnitus is that it can be switched on or off by attention mechanisms that act both short term and long term and are not necessarily consciously controllable.

The most remarkable thing for me is that I had tinnitus for thirty years - it was always there if I asked myself if it was - until I got hearing aids. The hearing aids suppressed the tinnitus but not just when I was wearing them. Even lying in bed at night without them on I could not get the tinnitus to be there. It had gone. But there are times when it reappears even with the hearing aids on. It has been present this last week or so and that is since being ill with Covid and recovering over 6 weeks but who knows if that is relevant.

And a lot of symptoms in other places increase when one is ill for another reason - I get back or shoulder pain when I have a cold for instance. I think I would expect tinnitus to be more apparent when PWME are feeling bad but that does not necessarily mean that more PWME have tinnitus than the general population.

 

[Suffolkres]

I will contribute my penny worth....
Blood flow and blood volume are issues it is often suggested for people with ME.

Husband has ME and has low background tinnitus.

He also when stressed has Pulsatile tinnitus (which it is suggested is often caused by disorders or malformations in the blood vessels and arteries, especially those near the ears.)
Can low blood flow cause tinnitus?
Blood vessel disorders.

These blood flow changes can cause tinnitus or make tinnitus more noticeable.4 Feb 2021

So ME or comorbidity,.... or both?

 

[Creekside]

Lots of people with ME may have tinnitus but there is no evidence that tinnitus is caused by whatever causes ME.

My tinnitus started well before my ME. I didn't notice any drastic change in it when I did develop ME. I think there may be a link between neuroinflammation and tinnitus, and ME seems to involve neuroinflammation, but tinnitus isn't unique to ME.

This is exactly what this forum should not be about - assuming that symptoms can be attributed to ME when they may well be due to something else that is important.

I like to blame ME for all sorts of things. Haven't cleaned the floor in a while: ME. Procrastinated over taxes: ME. Sore muscles after washing windows: ME.

 

[mariovitali]

I kept a log for a total of 434 days of my symptoms, their severity and other factors such as supplements taken, food, weather patterns and mental wellbeing. I then used machine learning algorithms to identify any factors that would differntiate the severity of my symptoms. Using a sequence mining algorithm, i managed to find my "vicious cycle" of symptoms, of which the beginning and end was tinnitus.

The graph below has been sent to a selected number of researchers in order to explain more about the vicious cycles i have been experiencing :





My vicious cycle would go as follows :

Tinnitus1 : The point in time where tinnitus is experienced (unilateral)
Red circle : It is the period in time right after the tinnitus1 incident where energy is affected, very negative mental wellbeing, several neurological symptoms at their worst.
Blue circle : Several hours after the tinnitus1 incident, i begin to experience symptoms with somewhat less severity.
Green circle : day(s) after the tinnitus1 incident , symptoms significantly better until the next tinnitus incident (tinnitus2)

When i was getting worse the time between each tinnitus incident was decreasing. From this i hypothesised that if i could stop tinnitus from taking place there would be improvement on my symptoms. This was indeed the case. The less tinnitus incidents i experienced the better i felt, ultimately leading to my recovery.

 

[SNT Gatchaman]

Neutrophil Extracellular Traps Affect Human Inner Ear Vascular Permeability (2024)
Sekulic, Marijana; Giaglis, Stavros; Chatelain, Nina; Bodmer, Daniel; Petkovic, Vesna

The integrity of the blood–labyrinth barrier (BLB) is essential for inner ear homeostasis, regulating the ionic composition of endolymph and perilymph and preventing harmful substance entry. Endothelial hyperpermeability, central in inflammatory and immune responses, is managed through complex intercellular communication and molecular signaling pathways. Recent studies link BLB permeability dysregulation to auditory pathologies like acoustic trauma, autoimmune inner ear diseases, and presbycusis.

Polymorphonuclear granulocytes (PMNs), or neutrophils, significantly modulate vascular permeability, impacting endothelial barrier properties. Neutrophil extracellular traps (NETs) are involved in diseases with autoimmune and autoinflammatory bases. The present study evaluated the impact of NETs on a BLB cellular model using a Transwell® setup. Our findings revealed a concentration-dependent impact of NETs on human inner ear-derived endothelial cells. In particular, endothelial permeability markers increased, as indicated by reduced transepithelial electrical resistance, enhanced dextran permeability, and downregulated junctional gene expression (ZO1, OCL, and CDH5). Changes in cytoskeletal architecture were also observed.

These preliminary results pave the way for further research into the potential involvement of NETs in BLB impairment and implications for auditory disorders.

Link | PDF (International Journal of Molecular Sciences) [Open Access]

 

[perchance dreamer]

I developed tinnitus after a prolonged bout with bronchitis, which caused the worst cough of my life. I don't notice it much during the day, but at night I need a white noise machine.

 

[MeSci]

I used to get a lot of tinnitus and deafness, but I think it was due to scratching and trying to clean out my ears with various things. They tended to itch a lot in the summer. Sometimes I went completely deaf until the ears were eventually unblocked. I couldn't even use the phone.

 

[Yann04]

n = 1. Tinnitus was a symptom I had never experienced before and started exactly at the same time as my first major ME crash. Now I get it everytime I crash.

 

[Amw66]

I will contribute my penny worth....
Blood flow and blood volume are issues it is often suggested for people with ME.

Husband has ME and has low background tinnitus.

He also when stressed has Pulsatile tinnitus (which it is suggested is often caused by disorders or malformations in the blood vessels and arteries, especially those near the ears.)
Can low blood flow cause tinnitus?
Blood vessel disorders.

These blood flow changes can cause tinnitus or make tinnitus more noticeable.4 Feb 2021

So ME or comorbidity,.... or both?

Interesting. One of my aunts developed tinnitus after taking statins. Seemingly it's a not uncommon side effect.

 

[NelliePledge]

Yeah I noticed on Monday when PEM started I could hear tinnitus in the afternoon whereas normally only registers at night

 

[horton6]

I don't know if this resonates for other people, but I think my tinnitus is tiny muscles in my ear shaking rapidly back and forth, or spasming. If I'm wearing ear plugs, I can feel the pressure behind it rise and fall rapidly, or a sensation like my ear is sucking on the ear plug rhythmically. I only developed tinnitus after I started experiencing fasciculations of the muscles in my scalp and face, and for the brief few months where those went away, the tinnitus was also absent.