What If Tinnitus Was a Symptom of an Autoimmune Condition? New Treatment Paths Would Appear

Hi everyone,

I have had tinnitus “in” both ears for around 15 years now, it’s constant, never left me, around 9 kHz with a unilateral one at around 2 kHz as well in the right ear, acting more like some morse code.

For many years I read the research papers/forums/publications.

Most research papers were focusing on finding a way to heal the ear. Because the most common hypothesis is the following: if you fix a cochlea, get the cells back and reconnect them, the phantom signal will go away. So here are all those trials for years, like Frequency Therapeutics as the most famous one.

One thing always intrigued me: everyone is waiting about this cure, about healing the hearing system, but no one is actually wondering WHY around 10% of the people have tinnitus not fading away after a concert/night in a club and why 90% will have their tinnitus fade away in 12 to 24 hours.

I have always found this weird as to me the source of the problem is this: that thing that makes you different from 90% of the people. If you find it, then you solve the problem. At this time, we know nothing about it and we all focus on a treatment to restore hair cells without even having real scientific evidence that our brain would stop the ringing afterwards. When I ask, I only get answer like “well it’s logical…” which does not sound 100% convincing to me.

Of course I want to believe, of course I want this cure to work but in the meanwhile it does not stop me from searching the real cause of our problem.

So in the recent years I started investigating some other medical topics, because I had some additional problems about 3 years ago. Problems I can see on this forum, like chronic fatigue, snow/noise in the eyes, fibromyalgia, dizziness, joint pain, etc. They’re all symptoms of an autoimmune condition: your immune system attacking your nerves and your blood vessels.

The most famous autoimmune conditions are known as Crohn's disease, Multiple Sclerosis, rheumatoid arthritis, etc. But autoimmune conditions are more common than you think. Some people actually have their immune system on the pro inflammatory side, because of the genetics and other things, their lymphocytes T helpers are differently proportioned. The ones with pro inflammatory roles may be more present whereas regulator T cells are outnumbered. If you have followed about COVID-19 in the past month you may have heard about this: people with this kind of profile tend to have more serious symptoms of COVID-19 because inflammatory symptoms are more severe and their immune system is harder to control, attacking the virus but also all the tissues around while at the same preventing muco tissues from cicatrizing.

After testing my blood for many things including my immune system analysis (way before COVID-19), I found out I had an issue with my Th17 cells. These cells are part of the immune system and their role is to generate cytokines. Cytokines are chemical messengers giving orders to the soldiers. Th17 are on the pro inflammatory side, it means they ask for soldiers (neutrophils among others) by generating IL17, IL23 and other cytokines. It feeds the chronic inflammatory state of your whole body while keeping the CRP (C-reactive protein) low. Most doctors today check the CRP as an inflammatory level indicator. In most infection / viral issues, that CRP raises and shows something is wrong to the doctor. When the CRP is equal to 0, most doctors tend to say “it’s in your head”. They don’t even know about the different T cells families. And that’s a big problem, because lots of people here are living with autoimmune symptoms like chronic fatigue, dizziness and other “invisible” things because of a chronic systemic inflammation and just because no one can see anything in their guts with camera or sclerosis in the brain those people are not actually treated and most of the time given some Xanax pills because “it must be the stress, a burn out or something”.

Why am I telling you this? Well, because autoimmune diseases are growing A LOT year after year. More and more Crohn's disease, more and more MS, etc. and these are only the diseases that doctors are trained to diagnose. If your symptoms are not big enough, there are chances you have to try thousands of complements and vitamins on yourself, looking for a cure yourself (we’ve all been through this, come on).

Anyway, that pro inflammatory immune system is, I’m sure, more common than we think and I had the “chance” to detect that issue in my Th17 cells + had some other symptoms than tinnitus to show to my doctors. I won’t dive into details.

My hypothesis is that tinnitus could be the cause of an autoimmune condition preventing your nerves or your blood vessels (or both) from healing, preventing the inflammatory state from decreasing, allowing the nerve (or else) to heal. I even noticed some articles on this forum about an inflammatory state in the brain we did not understand and we thought was preventing the tinnitus from fading away. Well, that state could be case consequence of pro inflammatory state caused by an autoimmune condition, like Behcet's disease for example. Lots of people actually live with Behcet's disease without knowing. Symptoms of this autoimmune condition are very different from one person to the other: snow in the eyes with possible blindness after years, tinnitus, gingivitis (if you have blood when you wash your teeth that’s what you have), mouth ulcers (at least once every quarter), anal fissures which won’t go away after years, genital ulcers (which are not herpes), etc. with a common symptom for everyone: chronic fatigue. Well, if all the people with these symptoms dig into their immune system, there’s a high chance they’ll find they have an autoimmune condition and that’s what could be the cause of the ear ringing, in my opinion.

Fortunately, for a few years know, great discoveries have been made to heal or at least do something against these issues. Having Crohn's disease is not as hard as 30 years ago and COVID-19 research is bringing new treatments into play. It’s all about what we call biological therapies: we make some living stuff generate antibodies against something we want to block in people’s immune systems. They are more specific than immunosuppressants and they are about to become even more specific this new decade.

Therefore, it would be very interesting to find someone who had tinnitus and tried those biological meds. It’s common to try several of those meds before finding one working on you (cf. Behcet's treatment) but when you find the one that heals most of your symptoms if not all, it would be very interesting to see if tinnitus is affected and how.

Also, it has been said here many times than melatonin and vitamin D are paths to explore about tinnitus because of some studies. Well, melatonin and vitamin D are Th17 cells inhibitors. They have been studied many times in Crohn's disease and most common autoimmune diseases, for decades. The point is at this time, when they are taken AFTER the condition has started, they have not got the ability to restore your health into what it was.

And to finish, autoimmune conditions work with "relapses", you have moments when it's more quiet than others. Research says it could be linked to melatonin for example, which as an anti-inflammatory has an effect by inhibiting the immune system. Melatonin is more present during the winter, therefore multiple sclerosis has less relapses during the winter (hypothesis). But what I mean here, is that our immune system react to stress and this could also explain why people have their tinnitus volume moving from day to day, depending on their melatonin levels for the past days, stress levels, etc.

 

There is no evidence of this.

 

There is Auto Immune Inner Ear Disease. And many people with auto immune conditions do end up getting hearing loss and tinnitus. As well as many people not getting diagnosed because it’s so hard to pinpoint auto immune conditions. I’ve heard the average is 7 years or something like that to get a diagnosis?

 

@Ozwel -- Very interesting to read your post. I'm famililar with some of the things you mention, and agree with much of what you think has the potential to cause tinnitus. -- In case you're interested, THIS POST describes how a man from London got rid of his tinnitus after 14 years by using Traditional Chinese Medicine (TCM).

 

Chronic inflammation is an auto immune disease if not fed by a virus or a bacteria. Do you need more than this?

I guess if the members of this forum did an immunoanalysis of their blood, it would be very interesting. That's what I did, this is a based on facts, this is science. My pro inflammatory cells are going through the roof and in spite of that, no doctor has detcted a sign of chronic inflammation with regular blood tests (like CRP levels etc. which stays at 0 for me, whereas some autoimmune conditions are know to spread inflammations all across the body yet the CRP is still 0). The cells you have to check are Th17 ones. Some people with too many of them will have a crohn, some other will have multiple sclerosis, some other will have vessels inflammation, arthritis, etc. There are chances some other have chronic tinnitus. Of course you can combine all these symptoms but most doctors today tend to think mono symptom, so they cure every one of them separately.

If you want more science you may want to check this post on your own topic also which goes my way: https://www.tinnitustalk.com/threads/tnf-alpha-and-brain-inflammation.8889/#post-543012

This guy is telling you anti-TNF alpha is working on tinnitus... do you know what anti-TNF is? it is a med for autoimmune conditions... It inhibits your immune system, especially TNF cytokines to inhibits T cells and especially Th17 ones.

 

Yes, it's around 7 years depending on the country but... most of patients do give up before and some will live their whole life with the wrong treatment. Because most doctors will treat you for fatigue, local pain, anxiety etc. one by one and no one will ever think all those symptoms are part of an auto immune disease... so if you are not curious or you don't ask yourself too many questions, you end up listening to your doctor without ever reconsidering his diagnostic.

How many times have I seen a doctor tell me I may be too stressed or I should go easier on work etc.? They can easily cure what they learnt at the university, but when you present yourself with something "weird", they just won't spend hours on your case trying to figure out or even search/read the latest PubMed articles etc. to make sure they don't miss something new about tinnitus or any of the current "complex" health problems.

However, I'm not saying all tinnitus are autoimmune conditions. Just saying a great part of them may be the case. And forums are made to challenge ideas so I'm opened to debate of course.

 

Well, while reading LOTS of publications about our immune system related to chronic inflammation, I noticed we have developed some very "high tech" meds like anti-TNF alpha antibodies for example, but there are also plants we discover have anti-TNF alpha properties... So it makes sense that some people may feel improvements while testing some of them.

I'm thinking about Artemisia Annua especially, very famous in Asia since we even in Europe and the US agreed it has some powerful anti-malarian properties (thanks the the Artemisinin it contains). It's way more recent that we discovered its immune system regulator properties, especially welcome for people with Crohn's disease or even multiple sclerosis. It acts like Infliximab, Etanercept or Humira. However I would not say it is as efficient as those meds, I'm not saying that, I am not able to conduct a study to compare but if you read this one it shows a real improvement for patients with Crohn's disease: https://www.sciencedirect.com/science/article/abs/pii/S0944711309002682

 

Interesting.

In moving forward, what is your next step?

 

Tinnitus and Visual Snow can both be symptoms of multiple sclerosis.

 

If it is AIED, cortisone is going to help.

 

Should we try an Artemisinin supplement?

 

Acute Peripheral Vestibular Syndrome in Relapsing Polychondritis

Relapsing polychondritis is a rare multisystemic autoimmune disorder of unknown etiology and characterized by recurrent episodes of inflammation affecting the cartilaginous tissues. Otologic manifestation such as auricular chondritis is one of the most frequent presenting symptoms in relapsing polychondritis, and inner ear symptoms, such as hearing loss, tinnitus, and vertigo, may develop in 7% to 42% of the patients. In this study, we present a 42-year-old male patient with relapsing polychondritis, who experienced two separate episodes of acute vestibular syndrome at the interval of 6 years. At the first vertigo attack, the patient showed left-beating spontaneous nystagmus with sudden hearing loss on the right side, and a bithermal caloric test revealed canal paresis on the right side. At the second vertigo attack, he showed right-beating spontaneous nystagmus, and a bithermal caloric test, compared to that during the first vertigo attack, revealed additional decrease in caloric response on the left side.

Full article: https://www.e-rvs.org/journal/view.php?number=881

 

As the resident diagnosed and treated AIED patient, I think I will weigh in. You present a lot of interesting ideas, and you are absolutely correct that blood tests looking for inflammation can be tricky. The immune system is more complicated than we could ever imagine.

However, I don't think in and of themselves, tinnitus, visual snow, and hyperacusis are generally symptoms of an autoimmune problem. The reason I say this is because I've had a systemic autoimmune disease for many years. At times, it was really bad with flare ups all over my body. Never at any point did I have even a hint of tinnitus. I took no precautions.

Flash forward and my autoimmune disease clearly spread to my inner ear. Now I am left with AIED, and horrific hyperacusis with tinnitus. I guess for me, it was really obvious when my immune system was involved in my ear and when it wasn't.

I have a family member with visual snow who does not present with any signs of an autoimmune disease. Our theory is that what we share is faulty neurology and highly reactive brains. This is almost surely why I have hyperacusis, while most people with AIED just experience hearing loss.

In case I am being unclear, I am not saying tinnitus isn't a symptom of an autoimmune disease per se. It is really common for lupus, Sjogren's, MS and other autoimmune diseases to have a higher rate of tinnitus. However, I would be cautious in attributing general tinnitus to autoimmune disease.

 

@Zugzug...So it’s good to finally find another 1%-er on this forum. I was also diagnosed with AIED, earlier this year. How long have you been living with your AIED?

 

I've had symptoms for 1.5 years. I have a really rare manifestation of it. Symmetrical, very severe hyperacusis and tinnitus, but no obvious hearing loss. Progressive with fluctuations, but an overall worsening with time.

How does your AIED present? Does it give you hyperacusis? Of course it gives you tinnitus, I'm sure.

 

@Zugzug, hi there, just curious, how were you diagnosed with AEID with no hearing loss? This is a suspicion of mine as well as I’ve had 2 normal audiograms no obvious visual damage from an ENT exam but I have hyperacusis and reactive tinnitus. Do you also have reactive tinnitus?

Has the hearing loss or tinnitus progressed or worsened?

Thanks for your time.