Screaming Tinnitus

[Nord Wolf]

I know a lot of you on PR have tinnitus of one form or another, and at various levels.
Come spring I need to see an audiologist because my tinnitus is getting too much. It blocks out some sounds now since the end of last summer, and makes it very hard for me to hear certain peoples voices. I have not experience true silence in about 7 years now. At the end of last summer when this neuroimmune condition worsened, again, the tinnitus tone and volume increased and hasn't decreased since.

If you want to hear what I hear every second of every day and night when I am not sleeping, go to this site.

https://www.audionotch.com/app/tune/

Scroll down to the sound bar. Set you computer volume to about 30%. Set the sound bar volume to 15.67%. Slide the frequency tab on the left to 5380 Hz. Select the Triangle mode, and then hit Play. That is the base level. If I have a flair up of symptoms, the volume increases a lot until the flair up subsides.

They have ways to treat it these days with sound matching and other techniques. But it is brain searing, disturbs my concentration at times, makes me irritable and even anxious at times... there is no escape from the sound. Some days it makes it very hard to listen to music, an audiobook, or understand speech on a movie... or my wife’s voice if she isn't close and facing me.

There are many times I find myself putting on music just to drown out the tinnitus, and avoiding really quiet places. But since the wrong kind of noise makes it worse, I have to be careful what sot of noise I’m around. For me it is the higher tones that wig out my ears because they are closer to the level of my tinnitus. Lower tones are far better.

As I’m sure many of you know, things like:

• ear blockages
• perforated eardrum
• overgrowth of bone in the ear
• tumors
• impinged nerves
• headache conditions
• neuroimmune diseases
• autoimmune diseases
• types of cancer
• damage to the 6th cranial nerve
• noise damage
• brain damage
• deficiency of B1
• deficiency of Iron
• deficiency of Taurine
• CCI
• AAI

Can all cause tinnitus. Most cannot be fixed (cured), only managed. Some, however, can be fixed. It depends upon the exact cause. Testing can narrow down the possible causes.

I’ve tried every tapping, massage, pressing modality out there for tinnitus reduction, and none reduced the noise. Some would make it worse for a while.

But there is also something I found out that also causes it - Hyperinsulinomia. It isn’t diabetes, but rather an imbalance of insulin in the blood to glucose. It can be caused by eating too many carbs for your personal constitution. The fix for that is along the lines of the keto or carnivore diet. Many people claim either a huge reduction, or disappearance of severe tinnitus after a few months on such a diet. So, before a visit to an audiologist I’m switching to a keto oriented diet to see if that works. Though years back I was on a Keto diet for many years… and I seem to remember the tinnitus then, but much less than today. Does that mean the Keto helped reduce the level… or more likely the tinnitus was much lower back then and it has simply increased over the years due to the increasing severity of ME/CFS/PoTS, etc? Who knows.

Any personal stories on tinnitus out there? I know @Emmarose47 posted on tinnitus increase after screen time a while back, but have not found a ton on PR dealing with the symptom.

 

[Emmarose47]

Hi @Nord Wolf thank u for sharing your experience ...
Tinnitus is hard .
Yes mine increases I'll share soon on it might here

 

[Judee]

@Wayne talks about it too.

I also have it but it varies depending on how much I have pushed myself and I can sometimes find things to tone it down a little like pinches of Ginkgo which also helps with my tremors and sometimes my hand/foot tingling.

I've also seen some mentions of tinnitus on this site: hormonesmatter.com regarding thiamine (B-1 which you mentioned).

Edit: Yikes, if I did the settings right on that simulation, yours is really bad. Mine is more like a constant low drone with a slightly higher pitch in a crash but mostly it just gets louder. That high pitch would drive me batty. I don't do well with high pitches anyways but to have it as an ever present issue...

 

[sunshine44]

yes, i've had this for many years...for instance when going to bed at night i would hear it, even 15-20 years ago but it became much more serious at times in 2007 and the next level hell after 2016 with me. For instance if i even turn my neck to the left or right, it will start raging and many times i lose hearing in that specific ear for hours or even days. Hearaing completely goes away. Alot of the past 5 years i rememebr but its also a blur linearly at times. Although i still deal with it, it used to be 24/7. If my daughter (or anyone) would use her little voice to talk to me it would start increasing so much. It felt neverending. Day and night. I tried to escape in a multitude of ways, mainly through sound healing or music when i could.

I do know that when i began B vitamins transdermally and then added extra liquid B1 transdermally , it eventually lessened and ceases at times. Although i don't recall how long that took. Right now typing, they are lightly buzzing but nothing like it was a few years ago. Sometimes i even experience all quiet for days.

It is interesting to note that around comets or solar flares or meteroid showers, it becomes blaring in my ears at times. It happens time and again. i am not sure if one of the things occurring here is its stirring metals in me that these connect to? I think its a few things. I do experience some increase around full moons but nothing like my prior sentence.

Sounds like alot of us here deal with this fun!

 

[Belbyr]

I have tinnitus that I don't know if it is related to my illness or if it is due to concerts/music/firearms/motocross/etc.

It got really bad around late November of 2022 and I think it was due to a gunshot that went off by my head. I went to an audiologist and hearing is still intact, but there is a slight dip in hearing in my left ear around the 4,200-4,800 range which is the same frequency my tinnitus is in.

December was hell. It was as louder than people talking, the tv, and riding in the car. Literally sounded like a tea kettle whistling about 10-20 feet away at all times. I'm a side/stomach sleeper and having one ear laying on the pillow made it miserable too. I think I actually developed some anxiety for the first month or two because of it. January, I felt about a 25% improvement.

Now I would say it is 50% better and most likely due to listening to 'crickets' sounds on low before bed every night along with a ceiling fan on medium. The other thing is I have been trying to focus on living my life which is hard given this chronic illness, but I try.

I started out going for a few hours a day where I didn't hear it because I was in a noisy environment and/or was focused on some task at hand. Some days I am able to go from about 8:00am to about 10:00pm without really noticing it but I do get spikes or days where it is more noticeable.

I think everyone has to approach it differently. Some people have to set up their home with background sounds so that they never hear it to start. Then over time they can slowly decrease the volume of the background sounds and even eliminate some of them.

This sounds counter productive but sometimes I will put my AirPods in my ears and have some light music playing while I make breakfast and do morning routine. I can also monitor how loud the DB's are on my iPhone after looking it up on Google so that I know I am not doing any further damage.

I see my ENT next week to see if there is anything else I can add that I maybe haven't thought of. Some people do great with hearing aids which I have not tried yet.

I was doing a lot of reading on tinnitus forums, Facebook groups, etc but I had to turn all of that off. There are a lot of very negative people that can make me feel more anxious about it just reading. Heck, I actually hear my tinnitus a little more just typing all of this out.

I think the brain can be trained even though for the first 2 months, I didn't want to believe that...

 

[Nord Wolf]

Thanks for writing in everyone. For those of you who are dealing with tinnitus, especially higher levels, I do sympathize. It is one of those symptoms that is hard to get away from.

@Judee Yes the sound heard in the link I sent is what I hear all the time. It never ends, and never drops lower. If I push myself, or like @sunshine44 around full moons, or sometimes with strong weather fronts, the tinnitus only increases from that level. Anytime I have any sort of ME flair up, the tinnitus increases from this baseline insane level.

I wrote before some of the things that can cause tinnitus. For me what has been ruled out, or is a possible cause I’ve listed below:

• ear blockages ————————————————-NO
• perforated eardrum ——————————————NO
• overgrowth of bone in the ear —————————-NO
• tumors ———————————————————-NO
• impinged nerves ———————————————Possibly
• headache conditions —————————————-Possibly
• neuroimmune diseases ————————————YES
• autoimmune diseases —————————————Only if ME/CFS/PoTS is autoimmune
• types of cancer ————————————————NO
• damage to the 6th cranial nerve ————————-Possibly
• noise damage ————————————————-Possibly
  • In my past employment I was exposed to many explosions (C4 and grenades), as well as gunfire - acute tinnitus from those only lasted a few days to a week at most, but lasting damage?
• brain damage ————————————————- Not that I know of
• deficiency of B1———————————————— NO
  • all B1 testing comes back normal, was taking Thiamine at 200 mg daily, then 100 mg, then 100 mg every other day
• deficiency of Iron ———————————————-NO
• deficiency of Taurine ——————————————NO
• CCI —————————————————————-Possibly, not yet looked at
• AAI —————————————————————-Possibly, not yet looked at

On top of all my other symptoms, dealing with this level of constant tinnitus and my vision issues are extra straining.

I will probably visit an audiologist this spring. After which I’ll write an update here as to findings.

There are a lot of very negative people that can make me feel more anxious about it just reading.

I hear ya! I think sometimes there are more people who just want to doom and gloom, and complain rather than actually seek healing, and do whatever work is necessary to achieve healing. I avoid people like that. My time is too precious to me to spend it listening to whining wells.

I think the brain can be trained

I agree.

 

[BrightCandle]

Keto/Carnivore doesn't change my tinnitus. It seems to just be correlated with my condition overall, when I feel a bit better my tinnitus is less bad. I suspect its more to do with cranial pressure.

 

[Violeta]

Wow, that site is really amazing.

My tinnitus sounds like 9359, pure tone, with the volume at around 30. I may have an issue with my hearing at that tone.

I read that GABA may be helpful, I haven't tried it yet, maybe tomorrow.

 

[Belbyr]

Wow, that site is really amazing.

My tinnitus sounds like 9359, pure tone, with the volume at around 30. I may have an issue with my hearing at that tone.

I read that GABA may be helpful, I haven't tried it yet, maybe tomorrow.

I notice when I take Ativan for my other symptoms (when severe) I don't really seem to care about my tinnitus and fall asleep without the sound machine on.

 

[Violeta]

Maybe most here have seen this, but I'll post it again here.

Peripheral tinnitus is a good candidate for inclusion under the NO/ONOO cycle etiological mechanism, fitting each of the five principles of this mechanism.

Cases of tinnitus are initiated by at least 11 short-term stressors increasing nitric oxide or other cycle mechanisms. Such cycle elements as N-methyl-D-aspartate activity; oxidative stress; nitric oxide; peroxynitrite; vanilloid activity; NF-kappaB activity; and intracellular calcium levels are all reported to be elevated in tinnitus.

Tinnitus is comorbid with some putative NO/ONOO- cycle diseases. Most important, multiple agents that down-regulate NO/ONOO- cycle biochemistry are reported to be helpful in the treatment of tinnitus and related diseases. Previous studies suggested that NO/ONOO cycle diseases may be best treated with complex combinations of agents predicted to lower NO/ONOO- cycle biochemistry, and such combinations may be helpful in tinnitus treatment.

Other inner-ear-related defects, such as acute or progressive hearing loss, vertigo, and dizziness, may also be NO/ONOO cycle diseases

He has articles that list many remedies for peroxynitrite, too, which is one thing I really appreciate about him.

I suppose there could be a variety of causes, though.

The NO/ONOO- cycle as the etiological mechanism of tinnitus

https://pubmed.ncbi.nlm.nih.gov/18229788/

This gives me a lot of things to work on today. I think I will try the glutamate angle. Lowering glutamate in the diet and taking more bacopa monnieri, maybe some GABA.

Good luck, everyone! Keep us posted on whatever works or doesn't work.

 

[Violeta]

This is interesting, I just went back to the audionotch and I can hear the sound of my tinnitus at a lower volume level this morning.

 

[Nord Wolf]

I read that GABA may be helpful, I haven't tried it yet, maybe tomorrow.

I take GABA every night and have never noticed it affecting the tinnitus. Maybe in some people of course.

This is interesting, I just went back to the audionotch and I can hear the sound of my tinnitus at a lower volume level this morning.

I think the volume adjustment on that site is more to tag the actual volume you experience your tinnitus at, but you can hear the tone at other volumes as well. At least that is what I got from it.

The NO/ONOO- cycle as the etiological mechanism of tinnitus
https://pubmed.ncbi.nlm.nih.gov/18229788/

Interesting. I'll have to review the article. I've never heard of most of what you mentioned, so I certainly want to look into it. Thanks for sharing.
I know in TCM they connect tinnitus to the kidneys. The lower the tone, the worse off the kidney health and energy is said to be. I think that is an oversimplification, but I do agree the general health of hearing is connected to the kidney energy, like eyesight is generally connected to liver health, and the lungs connect to skin health. All organs have an exterior body outlet. But again, I think it an oversimplification.

 

[Violeta]

I take GABA every night and have never noticed it affecting the tinnitus. Maybe in some people of course.

I think the volume adjustment on that site is more to tag the actual volume you experience your tinnitus at, but you can hear the tone at other volumes as well. At least that is what I got from it.

Interesting. I'll have to review the article. I've never heard of most of what you mentioned, so I certainly want to look into it. Thanks for sharing.
I know in TCM they connect tinnitus to the kidneys. The lower the tone, the worse off the kidney health and energy is said to be. I think that is an oversimplification, but I do agree the general health of hearing is connected to the kidney energy, like eyesight is generally connected to liver health, and the lungs connect to skin health. All organs have an exterior body outlet. But again, I think it an oversimplification.

The thing I found interesting about being able to hear it at a lower volume is that I am pretty sure the tinnitus has created deafness at that pitch. When I had my hearing checked I had deafness at a high pitch, but I didn't think to ask what the pitch was. My tinnitus is very high pitched. I don't know if my logic is correct or not about this.

There is a TCM herbal supplement for tinnitus.

https://www.pureformulas.com/clear-...ZAgePTvREG7M1rqV5POefPxtoaqHTMfRoC9EIQAvD_BwE

It contains some homeopathic remedies, too. Maybe I will try it.

Active Homeopathic Ingredients:
Calcarea Carbonica 6x‚ Chininum Sulphuricum 3x‚ Cinchona Officinalis 3x‚ Graphites 3x‚ Kali Carbonicum 6x‚ Kali Iodium 3x‚ Lycopodium 3x‚ Salicylicum Acidum 3x

Other Ingredients (Herbal Extracts):
Pueraria Root‚ Platycodon Root‚ Angelica Root‚ Liguistici Root‚ Peony Root‚ Coix Seed‚ Magnolia Flower‚ Notopterygium Root‚ Scutellaria Root‚ Tangerine Peel‚ Cinnamon Bark‚ Ginger Root‚ Licorice Root‚ Vegi-Caps.

There are some things that turn up the volume, almost like hitting a switch. Two of them that I can think of at the moment are dark chocolate and alka seltzer. Dark chocolate bothers me in other ways, so I very rarely eat it, but alka seltzer helps with other symptoms. I seem to have two opposing conditions going on. It's very confusing.

I am not going to go down the glutamate path, I decided, because I already am on a very restrictive diet and can't afford to cut out any more foods.

 

[Nord Wolf]

The thing I found interesting about being able to hear it at a lower volume is that I am pretty sure the tinnitus has created deafness at that pitch. When I had my hearing checked I had deafness at a high pitch, but I didn't think to ask what the pitch was. My tinnitus is very high pitched. I don't know if my logic is correct or not about this.

Interesting. Too bad you didn't get the pitch reading. They probably have it in your file. You might be able to call and get it.
TMC... Homeopathy... Diet... Supplements... I need to try one thing at a time, otherwise if something changes I won't know what it was that helped and what didn't. Right now I'm targeting diet. I know @BrightCandle said the keto diet didn't help their tinnitus, but I was eating too many carbs anyway, so may as well give it a shot.
Between the hearing issues and the degrading eyesight, I have two appointments this spring that I'm actually looking forward to. I'd really like some readings and better insight to what is going on if at all possible, especially with the eyesight, but that is for another thread.

 

[Emmarose47]

Thanks @Nord Wolf such an important topic to be talking about .

I've had it ummm I wanna say since my 20s it would come v high pitch last for about 10 seconds and go . I don't know if stress would make it worse ? I was too busy with my party.lifestyle to give it much thought .

With the decline of m.e CFS symptoms it's started up more permanently ...
It's low level like now and doesn't interfer or bother me .easy to distract from it ..
When I'm more symptomatic it ramps up and is interfering , distressing and bloody annoying .

I'm sorry u have this too ...
I read it's a brain thing rather than an ear thing ? As I've shared before mine can increase when I'm using screens ...
It's also more likely to happen with age .

Oops will come back and finish this later .....

Ok back
Thank god for music ... The great helper of many things ...
Sound matching @Nord Wolf what is that ?

Em

 

[Wayne]

I know in TCM they connect tinnitus to the kidneys.

Hi @Nord Wolf -- Speaking of TCM, here's a link to a story I ran across a few years ago, which describes one man's success with using TCM for his tinnitus.

Tinnitus: How an Alternative Remedy Became the Only Weapon Against the Ringing​

​

Some selected snippets from the article:​

​

I have tinnitus. I have had it for 14 years. When my ears started ringing, I ran around to various doctors seeking a cure, until one of them took pity on me and explained that there was no cure. I would have to get used to it.​

​

I discovered the Chinese approach to understanding and dealing with tinnitus by wandering into Acumedic’s clinic on Camden High Street in north London last year out of curiosity. Not expecting that they could offer any help with a condition that leaves Western medicine baffled, I didn’t mention that I had tinnitus. The female doctor told me to stick out my tongue – tongue analysis is a basic diagnostic tool in this system – and after examining it, she asked, “Do you have ringing in your ears?” ......​

​

An imbalance between your organs affects the harmony between blood circulation and qi, and this in turn translates into an imbalance of yin and yang.” By closely inspecting one’s tongue and taking one’s pulse, they obtain an accurate idea of the state of one’s internal organs. They then proceed to treatment. ......​

​

I had no good reason to suppose it would have any effect, and for two or three weeks the ringing continued as normal. But then, as I continued to slurp my daily potion, I realised with surprise that things had begun to improve. I woke in the morning resigned to the usual relentless racket – and it was different: first it lost its ringing quality, so all that remained was a sustained shushing; then the shushing itself reduced, to the extent that sometimes I was able to forget about it for hours at a time.​

​

Dr Lily had explained that the ringing in my ears was caused by an internal imbalance, which the tea she prescribed was intended to correct; now, lo and behold, it was taking effect and my baffling condition was getting appreciably better. Eventually, I would ask myself: am I still suffering from tinnitus? It would take a conscious check to confirm that, yes, there was still this fuzziness clouding my hearing. But for many hours and days I would be all but unaware of it.​

 

[Strawberry]

As I’m sure many of you know, things like:

• ear blockages
• perforated eardrum
• overgrowth of bone in the ear
• tumors
• impinged nerves
• headache conditions
• neuroimmune diseases
• autoimmune diseases
• types of cancer
• damage to the 6th cranial nerve
• noise damage
• brain damage
• deficiency of B1
• deficiency of Iron
• deficiency of Taurine
• CCI
• AAI

Can all cause tinnitus.

Very interesting list.

I’ve never known a time without tinnitus. I thought it was normal and everyone heard it until I was possibly a teenager. My mom also told me she has had tinnitus since the day I was born. I don’t understand that link.

Following this thread as I’ve never found anything that helps, nor makes it worse. I occasionally get one ear that suddenly starts to scream, but I can plug that ear for 30-60 seconds and it will go back to the normal level. But nothing makes it go away.

Interesting story, a few years back my daughter was in the middle of Death Valley with her class. The prof had everyone go silent to listen to pure silence. It was at that moment that my daughter realized she also has tinnitus. Genetic?

 

[Emmarose47]

@Wayne a lovely message of hope

 

[Nord Wolf]

Speaking of TCM, here's a link to a story I ran across a few years ago, which describes one man's success with using TCM for his tinnitus.

Thanks Wayne. TCM has a lot going for it, just as TJM (traditional Japanese medicine). I've utilized both on and off for around 30 years. The issue I have with the herb usage in TCM is that they are mostly heating in properties. Since I have very dry heat conditions, my TCM and TJM practitioners have always avoided prescribing them. I have always been told they would aggravate the heat conditions, which in turn would aggravate all the other conditions. So, I've always utilized North American herbs since we have so many cooling and moistening ones.
I do wonder the exact tea mixture Dr. Lily prescribed that guy though.

 

[Nord Wolf]

It was at that moment that my daughter realized she also has tinnitus. Genetic?

Very possible genetics play a big part in your family. They play a massive part in all our lives, so why not with tinnitus as well? Thanks for sharing!