Suicidal

[dan]

Now I'm over 30, alone

Will you marry me?

Dan I don't know anymore. I surrender. I don't believe that's tinnitus. It's something else. Brain damage??? I can't describe my tinnitus nor count sounds anymore. The sounds are indescribable. I did everything I could to not make it worse. Even quit my job. All to no avail. At some point I won't be able to cope more. Running out of tolerance dude.

How loud is it, can you hear it very clearly outside?
No it's not brain damage... it's tinnitus.

 

[Contrast]

Yes lmao - whilst yeah there is a lot of misinformation online I think this view is becoming increasingly dated and is really dismissive given that you can now access research papers via Google Scholar etc or even take the initiative to contact researchers yourself as their contact info is displayed on their institution's webpages. Obviously if a patient comes and they subscribe to Goop-style pseudoscience then yeah that's a bit problematic but doctors need to keep up with the times. How else are we supposed to access information to understand our condition?

I wonder how many people asked their doctors about the Tonaki Tinnitus Protocol and related BS.

Here's a story of a person who showed Sparkhealthmedia's "memory repair protocol" to actual doctors.
https://www.samplesite.com/memory-repair-protocol-review/

 

[Kriszti]

Will you marry me?

Trust me, you don't want to marry me.

But @ajc is getting really good at matchmaking in an other thread.

 

[Orions Pain]

And when you actually tell them what you found out, you get the scolding, dismissive: "Don't believe everything you read online."

Yeah, I don't, but online forums were much more helpful and informative than the advice my doctors have given me.

Omg right! They should be embarrassed that we're even having to look for stuff in the first place.

I've learned not to bring up forums in appointments all because at that point I just feel like my chart gets the *anxiety disorder* checkbox marked off.

 

[Shizune]

And when you actually tell them what you found out, you get the scolding, dismissive: "Don't believe everything you read online."

Yeah, I don't, but online forums were much more helpful and informative than the advice my doctors have given me.

My H was caused by toxin exposure from a hobby, and it's known to cause adverse side effects. The hobby in question has an entire forum and thread dedicated to safety, and people coming out with their stories of health issues after not using proper protection. This information was also met with a dismissive "Don't believe everything you read online; there are flat-earthers out there" when I first went to the ER.

Sure, I'm sure the fact that people sitting on a forum all day talking about how much they are suffering are just trolls. I'm sure that people warning others not to make the same mistakes are being disingenuous. Makes total sense.

There are people who post on support forums because they need it, and then there are people trying to promote snake oil. There is a huge difference. But clearly the internet is just all one place and it's all bad.

 

[serendipity1996]

I hate the 'anxiety' excuse - we're seeing this play out with the significant number of people who are suffering from long-haul COVID-19, for example, and so many doctors are being unhelpful and telling these people they're just anxious. Certainly in the UK from what I've read - people are told it's all in their head and being prescribed antidepressants instead.

 

[Greg Sacramento]

Tinnitus and anything that's associated to it can be complex everything. The probably little that I know about tinnitus associations is from research and 50% of what not to do, I've seen done within a medical /dental setting.

Been talking about corporate medical systems for three years. Been there on the inside - medical (all types of doctors and dental). Just to much to summarize in one post.

Diagnostics for a treatment plan especially with physical aspects take hours and a medical team is often needed.

A host of researchers have been on top of diagnostics and treatments (physical and pulsatile) for years, but it takes time to decide as to what treatments and advice is best by an individual.

Healthcare often won't listen and consider one's thoughts as soon as they mention I read this in a NBCI medical research article.

Some treatments can have a dangerous element such as too radiation from multiple CTs or having mouth open wide for long periods at the dental office which can cause TMJ.

When I try to assist someone, often by PM with many posts - stuff mostly for them to discuss with doctors - or for them to continue research - it can take me many hours of research just to give some thoughts. Posters may not state all that is going on.

Some would benefit with understanding a condition by using the search format here.

 

[Harley]

Yes lmao - whilst yeah there is a lot of misinformation online I think this view is becoming increasingly dated and is really dismissive given that you can now access research papers via Google Scholar etc or even take the initiative to contact researchers yourself as their contact info is displayed on their institution's webpages. Obviously if a patient comes and they subscribe to Goop-style pseudoscience then yeah that's a bit problematic but doctors need to keep up with the times. How else are we supposed to access information to understand our condition?

When someone is exposed to a major life altering/ending condition such as tinnitus, one quickly becomes an expert and that is no exaggeration.
Your doctor on the other hand might have been exposed to a half hour grainy video about tinnitus in med school at best.

At this point I have read just about every study, write-up and every post on various tinnitus hubs, forums and help groups in search for something that might help me.
I assume most of us here have done their fair share of research.

I have tried just about every supplement that was ever mentioned in relation to possible tinnitus relief.
I visited chiropractors, acupuncturists, osteopaths and out of desperation even Reiki practitioners, energy healers and psychics.
I tried hypnosis, hyperbaric oxygen chamber, neuromodulation, cranial sacral therapy, various spa treatments and massages, reflexology and even got a TMJ mouth guard just in case.

I tried a pretty wide cross section of most prescription meds ever mentioned to possibly be of help (before tinnitus, the strongest pharmaceutical I would touch was an occasional Advil or antibiotics).
Because of tinnitus, I tried Amitriptyline, Remeron, Zoloft, Gabapentin and Trazodone.
I even got into trying 3 different Benzos, which I would consider the last resort and was very careful with them (Lorazepam, Clonazepam and Xanax).
Some made me really tired, but still was unable to sleep more than 2-3 hours per night.
This is why I'm no longer using any of them.

I also tried PEMF treatment and I even rigged up a TENS machine for Vagus nerve stimulation to no avail.
I would piss on electric fence, hack off any of my limbs and trade for any terminal condition out there, if it would give me relief from tinnitus.
I lost count of how much $ I had spent on all of that, but at this point I'm pretty much broke.

This is why I have completely given up on doctors and ENTs.
They might know more about other things and I hope this does not come across as arrogant, but when it comes to anything tinnitus related, there is no information they can offer me.

Sadly, because I have now given up searching for any more medical help, I will be most likely entered into the statistics as yet another tinnitus success story, just to add insult to the injury.

 

[Greg Sacramento]

Your doctor on the other hand might have been exposed to a half hour grainy video about tinnitus in med school at best.

Yep, the video is 20 minutes long and is of grammar school quality.

 

[Zugzug]

I hate the 'anxiety' excuse - we're seeing this play out with the significant number of people who are suffering from long-haul COVID-19, for example, and so many doctors are being unhelpful and telling these people they're just anxious. Certainly in the UK from what I've read - people are told it's all in their head and being prescribed antidepressants instead.

Having an anxiety disorder used to mean something. It used to be a fairly uncommon thing, designated for about 2-3% of the population with genes that have tendencies towards panic attacks, OCD, depression, neurological issues, etc.

Now it's just like something to designate to everyone. Chronic, unexplained pain? It's probably sore muscles from an anxiety disorder. Damaged hair cells? Probably an anxiety disorder. Feeling anxious because of temporary life circumstances? Anxiety disorder.

To be clear, I am differentiating "anxiety problem" from "anxiety disorder." A disorder is largely a genetic problem, and it's not that common. I have both a genetic anxiety disorder and chronic health problems. They really have nothing in common other than anxiety plays a role in bringing on the other.

EDIT: What I should say is that anxiety disorders used to be under diagnosed and now they are over diagnosed as a reaction. What's really going on is the same 2-3% of the population is suffering from an anxiety disorder, and the rest are just not being believed for separate health problems.

On the other hand, many people have anxiety problems brought on by war, high work demands, chronic stress, marital problems, technology, etc. They are real as well, but vastly differently from the person with genetic tendencies, who gets stressed -- to no fault of their own -- over small things.

 

[vermillion]

How loud is it, can you hear it very clearly outside?
No it's not brain damage... it's tinnitus.

I can hear it outside of course. Only few of the sounds are not audible outside if there's fair ambient noise. The most obnoxious ones though are always there. On top of that I can't stand traffic noise so I'm always wearing earplugs which double exhaust me. If it's not brain damage what kind of tinnitus is that? There's low humming, there are various ringing sounds, there's this hellish sound like that of a wine glass that you make with your finger. There's this hellish old modem sound that is disharmonious ASF! Then there are these beeps that never stop too, and they react over other sounds. I get this effect with the modem sound too. The more input the louder it gets!

How the hell did that happen? How? What went wrong. My vision too. I have floaters (which do not bother me), VS, palinopsia and flashes. Lately when I wake up my brain produces these explosion-like sounds for a few minutes. It's terrifying. I am so fucked.

 

[Greg Sacramento]

@vermillion I had hearing loss tinnitus first. Then dental whiplash causing all sorts of problem and instant somatic tinnitus - plus more dental treatment mistakes afterward. Then from the stress of all this, I had all that happen to you, happen to me. I also had a few other things happen.

For me, I started to have hyperactive moments from stress raising blood pressure over some time. Then from this - all broke lose very quickly - I had a 'hypertension crisis' - a medical term. I had posted about this. This caused me, all that you describe - all your same sounds, all your eye problems and brain explosion sounds. Some of my sounds are vascular - the humming, old modem and beeps. 99% of the time, my blood pressure is normal, except for brief moments when under stress. Many things can happen from a hypertension crisis. I can't say that you had a hyperactive crisis. More would need to be discussed, but if you had a HC, then blood pressure meds or hypertension meds may greatly help.

 

[vermillion]

@vermillion I had hearing loss tinnitus first. Then dental whiplash causing all sorts of problem and instant somatic tinnitus - plus more dental treatment mistakes afterward. Then from the stress of all this, I had all that happen to you, happen to me. I also had a few other things happen.

For me, I started to have hyperactive moments from stress raising blood pressure over some time. Then from this - all broke lose very quickly - I had a 'hyperactive crisis' - a medical term. I had posted about this. This caused me, all that you describe - all your same sounds, all your eye problems and brain explosion sounds. Some of my sounds are vascular - the humming, old modem and beeps. 99% of the time, my blood pressure is normal, except for brief moments when under stress. Many things can happen from a hyperactive crisis. I can't say that you had a hyperactive crisis. More would need to be discussed, but if you had a HC, then blood pressure meds or hypertension meds may greatly help.

@Greg Sacramento thank you for taking the time to give useful insight. I am sorry to hear that you are going through similar issues. I don't know what HC is but my stress level is going insane, especially after my father's death past April and the new worsening of my tinnitus and hyperacusis. I will try to locate your posts on HC. Could I speak about that eventually with a doctor in case meds could help?

 

[Greg Sacramento]

@vermillion Place - hypertension crisis into this site search. You will see many posts with my name. A brief internet search will give some idea as to what a hypertension crisis is and a little (some biology) on what it involves. A deep medical search for studies will discuss all that you describe and treatments. If you wish, I can send you some of these studies. I still have eye pain and my vision is a little less in left eye, but my eye conditions have greatly improved.

I have floaters (which do not bother me), VS, palinopsia and flashes.

Most went away, except one floater still seen in morning sunlight and only a flash on occasion in a dark room. I had an eye procedure (in office) that took 30 seconds - improvement took three months. Palinopsia is gone.

I still get headaches, but not as often. I still have most pulsatile sounds. I can discuss that more later and what caused mine - happened in a second after my hypertension crisis. Brain explosions went away - which was temporary increased brain pressure - white matter - not dangerous.

 

[vermillion]

If you wish, I can send you some of these studies.

If you think they will be helpful, I could take a look.

had an eye procedure (in office) that took 30 seconds - improvement took three months. Palinopsia is gone.

That is quite fortunate. What kind of procedure. Did they diagnose something specific?

Brain explosions went away - which was temporary increased brain pressure - white matter - not dangerous.

I get them upon wake up and my heart beats like crazy.

 

[100Hz]

I'm absolutely 100% confident that if everyone in the world got the taste of severe tinnitus, finding a cure would become a number one global priority with unlimited budget virtually overnight.

I'm sure if an ENT, neurologist or audiologist was ever unlucky enough to get hyperacusis it would help make it clearer that current practices are very unhelpful to severe tinnitus & hyperacusis sufferers. I've never heard of a case of such a professional getting severe hyperacusis but it would be interesting to see what they think of their own tests (LDL, tympanometry in particular), what they think of their pure tone hearing tests perhaps not showing anything significant, yet at the same time what they then think about the fact that after an loud noise exposure they are now bed bound for months in crippling, stabbing, radiating pain, not willing to accept the fact they are mentally ill.

I accept that this condition is largely unknown to the medical world. It would be so much better though if it were acknowledged globally as unknown, and a real and specific problem yet to be cured with a proper guideline and some kind of support system, instead of each individual professional having a stab at curing it and proceeding to throw out the usual battery of hearing tests, the usual string of supplement/meds, followed by the usual random possible diagnosis and explanations over and over again. Its all guesswork from what I've seen over the years.

If what the doctors advise, diagnose, prescribe etc is as inconsistent and ineffective as it is, then why not look at it the other way round. The causes, and symptoms are not inconsistent (to a massive degree from what I read they are almost identical). I can only speak for noise induced tinnitus and hyperacusis but generally the causes are the same, noise exposure / acoustic shock. The symptoms are also largely the same for pain tinnitus & hyperacusis, and in most cases the main specific symptoms pop up every single time. Pin pricks / ice pick / stabbing in the ear, radiating pain in face, jaw, and neck. Setbacks. Forced isolation.

Globally people seem to be reaching out for help more and more because of this condition giving these exact causes and symptoms. Why does this in itself not begin to paint a picture of what simply just does not work for this condition (or makes it worse)? Why keep throwing the same things at it?

 

[Juan]

Doctors of today are most interested in having a high paying secure job that has a routine workflow. They got out of medschool in the 1990's and haven't learned anything new since. The hospitals are corporate and they have guidelines to make 10 appointments an hour and fill in as many patients as possible. Doctors don't put any effort in solving problems. They just cookie-cutter flowchart people. This is the same for specialist. Until the medical world actually starts taking medical science seriously I don't believe change will happen. No amount of bio-companies talking about regenerative medicine are going to mean anything until the medical world adapts.

It's just a day job to them.

Now, the "dual visit" is becoming popular. This means that a patient will go the ENT just to have a 10 minute chat about what's going on, and then will be scheduled for another visit for testing, of for further tests, or for a further 10 minute conversation.

This was unthinkable just 5 years ago, but now some private clinics are just run by crooks who only think about taking your money.

 

[Juan]

Having an anxiety disorder used to mean something. It used to be a fairly uncommon thing, designated for about 2-3% of the population with genes that have tendencies towards panic attacks, OCD, depression, neurological issues, etc.

The "acceleration of life" today may be the cause of generalized anxiety disorders. In the 80s people would just have a stable employment, go to the bank, ask for a mortgage, pay off their primary residence in less than 10 years, and have spare money to raise a family, and do some activities in their spare time.

Nowadays there are places in the world where well-paid people, educated people, PhD level workers, cannot afford housing, let alone thinking of having a family. Jobs are extremely demanding. Housing is crazy expensive. There is no job security.. all this adds up and can turn into an anxiety problem, or into chronic stress that can spike when a new health condition (tinnitus, hyperacusis etc) is added up on top of it.

 

[Andrei88]

I can live with the noise! I have gotten used to the noise over 8 years, but the pain, I hate the pain!
We will never know if there will ever be a cure till there actually is a cure! May that day arrive soon!

 

[PeteJ]

People are confused here? When people decide to become a doctor, it's because of the income. The vast majority are doing it because of the money. They are not altruistic humanitarians. It's not because of the corporate climate, it's because they are greedy. People are greedy.

 

[100Hz]

I think about some strange things sometimes almost like trying to justify that death would be OK now that life is so bad. If I see old photos or old film from say 60, 70 years ago I think things like 'probably most of these people are dead now anyway, it's OK to die, I'd be dead in 60 years anyway, everybody dies, it's the legacy you leave behind that counts.' Weird, but it's only the pain or the boredom of a hyperacusis life making these surreal thoughts about life and death come into my head. I have so much ambition in life that I can't fulfill now so all I feel like is a dead man anyway. This is hopeless.

 

[BuzzyBee]

I hate the 'anxiety' excuse - we're seeing this play out with the significant number of people who are suffering from long-haul COVID-19, for example, and so many doctors are being unhelpful and telling these people they're just anxious. Certainly in the UK from what I've read - people are told it's all in their head and being prescribed antidepressants instead.

I read an article yesterday about long haul Covid and had the same thought. If the doctors don't know what's causing it, they chalk it up to anxiety. So frustrating.

 

[dan]

I can hear it outside of course. Only few of the sounds are not audible outside if there's fair ambient noise. The most obnoxious ones though are always there. On top of that I can't stand traffic noise so I'm always wearing earplugs which double exhaust me. If it's not brain damage what kind of tinnitus is that? There's low humming, there are various ringing sounds, there's this hellish sound like that of a wine glass that you make with your finger. There's this hellish old modem sound that is disharmonious ASF! Then there are these beeps that never stop too, and they react over other sounds. I get this effect with the modem sound too. The more input the louder it gets!

How the hell did that happen? How? What went wrong. My vision too. I have floaters (which do not bother me), VS, palinopsia and flashes. Lately when I wake up my brain produces these explosion-like sounds for a few minutes. It's terrifying. I am so fucked.

Do you have a high pitch EEEEEEEE between 6 to 8 khz???

It's just very severe tinnitus, nothing more...

We should keep in touch.

 

[dan]

Trust me, you don't want to marry me.

But @ajc is getting really good at matchmaking in an other thread.

Don't complain you're alone then there are tons of guys here.

 

[Greg Sacramento]

I get them upon wake up and my heart beats like crazy.

I had the same. Had an echocardiogram from heart to neck, neck and head radiological exams - MRA is best, ultrasound and radiological exams of kidneys, abdominal aortic and ultrasound of jugular and carotid. Saw eye doctors. Had complete blood work. All these areas had effects due to my HC. Other than your heart beats and eye problems, I can't say what treatments you may need. You may have high blood pressure, that may be normal when in the doctor's office. I would consider discussing hypertension to your doctor about eye problems, heart beating and pulsatile tinnitus. Specialists in these areas are needed. Medications and non surgical retina treatment may help you. Control of not overloading (too much) vitamin A is important. No abrupt cessation of antihypertensive drugs.

Also important is finding ways to lower hypertension - research how to lower hypertension naturally.

 

[Contrast]

Joyce basically admitted that she would never speak up against Jastreboff as it's political suicide. I don't know what Pollard's view is but he has mentioned publicly that TRT didn't work for him and that the clinical world mindessly advocates it as defacto. He still never publicly criticized TRT to my knowledge. Reality is boring, it's gonna take a long time before progress is made the way things are going.

 

[PeteJ]

Is there a scientific reason for tinnitus to spike or worsen (whatever you call it, what's going on) late at night, at bed time, whatever?

It always happens and if I don't get enough sleep, it's awful in the morning after waking up. Even if I get sleep (I need 8 hrs), it's still horrible but there's a perceptible difference despite it being bad either way.

I don't want to browse the research section or ask there. Reading posts of people discussing there both depresses and annoys me, sorry, but just being honest.

My tinnitus went from "10/10" to around 7/10 (I dunno!) for a period of time in the evening. Still bothersome but I could watch TV without it being as hellish and intrusive for a short while.

Not now, though. It's bed time and it is back to being 11/10!!!!! Hence, my question.

 

[dan]

Is there a scientific reason for tinnitus to spike or worsen (whatever you call it, what's going on) late at night, at bed time, whatever?

It always happens and if I don't get enough sleep, it's awful in the morning after waking up. Even if I get sleep (I need 8 hrs), it's still horrible but there's a perceptible difference despite it being bad either way.

I don't want to browse the research section or ask there. Reading posts of people discussing there both depresses and annoys me, sorry, but just being honest.

My tinnitus went from "10/10" to around 7/10 (I dunno!) for a period of time in the evening. Still bothersome but I could watch TV without it being as hellish and intrusive for a short while.

Not now, though. It's bed time and it is back to being 11/10!!!!! Hence, my question.

Yeah that happens to me too when tinnitus hasn't decided on its baseline (could take years). So when your brain tries to relax it sort of loses control of tinnitus... there's no research to this, its just experience. Tinnitus scientists aren't interested in solving tinnitus idiosyncracies.

 

[vermillion]

Do you have a high pitch EEEEEEEE between 6 to 8 khz???

Yes I do. I also have physical sensation in my ears. Like water in my ears each time I hear a sound. Pain also comes and goes.

We should keep in touch

Sure.

@Greg Sacramento thank you for taking the time. I appreciate.

 

[Shizune]

I'm still fairly new to the tinnitus game since my hyperacusis is more of an issue. I actually even kind of enjoyed the original tones I had (fluttering cricket noises). But in just a day I've developed a distant, whining powertool noise in my good ear, and then new high pitched beeps in both ears. I don't even know how this was caused. It's only been a month since it began but jesus, with how bad my H has progressed as is, I can't imagine what my T is gonna do next.

Any attempt or implication to my family that I don't want to live will get me thrown into a psych ward. Surrounded by loud people, beeping, slamming doors, and people who don't understand it or will think I have some sort of schizophrenia. Then it will be worse. If the doctors have been this incompetent, I can only imagine what lovely things the mental health "professionals" have to say. Really wish there was an easier way out that wasn't such a gamble.