Suicidal

Don't sign your posts

 

Who will solve my ringing first - FX 322 or Pegasos? I'm starting to think more about the latter.

 

The problem is there is not enough money for research of hyperacusis and tinnitus. It is better to sell snake oil "therapies" like TRT or CBT and also to sell incredibly expensive (and, for many, useless) hearing aids.

 

I'm feeling like you, and having very dark thoughts. I have two kids so I need to ward these thoughts off but it is almost impossible most of the time.
I was on a gaba-ergic nerve drug when tinnitus hit me. I had been on the drug 8 months. It took me 14 months to come off, and now I need to stop a benzo I used a couple of months to ward off the most severe withdrawal symptoms. My tinnitus increased like crazy since inception 19 months ago, it is super-loud and high pitched, unmaskable, it makes me shake all the time, I struggle to do anything, need to push through even very simple tasks. I struggle to sleep, think, concentrating is hard, I need to push through every hour but this is not living. I have sound sensitivity too but not at your level. My mood is down the drain.

How long have you been in benzo withdrawal? Are you still tapering or have you withdrawn completely? Sometimes it takes months and months after complete withdrawal to feel better.

This is Don's story
http://www.benzosupport.org/don.htm
He made it after almost 15 years of benzos, topping at 6mg clonazepam (huge dosage). He cold turkeyed, he had super-loud increased tinnitus (tinnitus was the reason why he was on benzos but it was milder) plus many horrible symptoms and it took him 12 months to have great improvements. He was put on mirtazapine and propanolol during the withdrawal. Most of the times tinnitus and sensitivity to sounds, and more generally withdrawal improve greatly a few months after the taper (typically 6 months-1 year). @Star64 knows this well. Some people take longer. But it's not without hope. It might be worth seeing if yours improves with time. Noxacusis is also typical of benzo withdrawal. Not saying this is your case necessarily but again worth waiting a few months perhaps to see if it calms down? For some people it's crazy, after a very long time with withdrawal one day they go to bed and wake up symptoms free. It looks like a dream to me, like you sometimes I feel I'm living in a nightmare, especially when thinking about my previous life, but unfortunately as you say this is reality. God help us.

 

This ebola drug Remdesivir is currently used for Covid-19 "in healing attempts" despite having FDA approval. Do you think something similar would be possible for FX-322 if one is willing to take the risk?

 

Frequency may open themselves up for compassionate/expanded use at some point (and it's legal to do so) but they mention on their website that they aren't ready to so yet because they are still working out some things in phase 2 (including dosing) and (probably even more importantly imo) they haven't scaled up manufacturing enough to provide for the *massive* demand they are facing.

Gilead, in contrast to Frequency is a major pharmaceutical company and already has massive worldwide manufacturing and already produced large quantities of their drug by comparison.

 

This is a very common observation from those, whose lives have been obliterated by tinnitus (myself included).
This is a very eerie feeling, which has no analogue.
Just like being trapped in another dimension, while looking at the world passing you by, completely oblivious to your suffering.

It's like being dead, but somehow still breathing (unfortunately)
The suffering is so inhumane, it fails any attempt at verbal expression.
The horror of severe/catastrophic tinnitus is simply out of this world and cannot be comprehended by anyone but those affected.

I never thought that something this bad was even remotely possible.

 

What's stopping Frequency/Astella or otherwise from selling their life saving drugs, which may very well be the cure for tinnitus and are known to be safe for humans (shall I kindly remind people here that no viable alternative treatment does exist for tinnitus, I don't consider anything palliative to be a viable alternative), in countries not under FDA regulations? Plenty of places such as Thailand, India, South Korea... have very loose regulations when it comes to putting medications on the market. I certainly wouldn't mind traveling to get a shot at getting my life back. People are dying over this, these treatments shouldn't be kept in laboratories, FDA or not.

 

I believe Frequency will be asked about when/how their compassionate use policy may change on the Tinnitus Talk Podcast when it is rescheduled.

 

Have you been able to find something that helps mask that tone?

 

What would an analogy be to mirror therapy in the case of tinnitus? FX-322 is thought to restore hearing and suppressing tinnitus by restoring the lost input to the brain. But mirror therapy is just tricking the brain through visual stimulus. Does that give us any options to explore for tinnitus?

 

And now I have floaters. When I thought life couldn't get any worse than severe hyperacusis.
Why me

I promised I won't go before my mom does - she will be shattered but everyday is a struggle. And to keep up with this struggle, for many more years to come, alone, with no career, no relationship and no one who can actually comfort me is eating away at me.

 

Not to ignite any heat or hate or emotions, but does anyone here know how did Allan1967 go?

 

Bimodal stimulation done right would be functionally like mirror therapy I think.

 

@Star64 @Chinmoku
Thank you both for comforting words. Thank you all for the hugs.

Yes, I am in severe benzo withdrawal, and it is probably making my hearing issues worse. But there is a reason I could not keep away from the benzos in the first place, well aware of their consequences.
It just had a tremendous effect on my tinnitus and noxacusis. I´ve had problems with benzos for a long time though so it´s a chicken or the egg deal.

I´ll try and hold on for now.

I´m seriously talking with my GP about starting with Oxycontin to maybe take the edge off my noxacusis that is killing me. But then it´s another drug I will build tolerance and addiction to. But it can´t be as bad as benzos can it?

I´m so sorry for everyone here, especially those of us who suffer from noxacusis.

 

I had severe (unrelated to my current issues) nerve pain at one point and the pain specialist refused Oxycontin but thought Buprenorphine would be pretty effective without the same addictive potential. I thought it worked pretty well and I had no problem whatsoever getting off of it after a few months when my pain got better.

I used the buccal kind and the effects lasted nearly a whole day of even pain relief. But, more importantly since it is a partial agonist/antagonist it is not nearly as addicting so doctors feel more comfortable with it. Even just knowing I had something I could take really helped too.

I have no idea if it should be used for noxacusis or if it helps, though. But it might be something to talk about with your doctor.

 

Hi friend,
I've tried soo many times to quit Venlafaxine, but I get so sick I'm back on them every time. Even a slow taper is hell. Remeron is no picnic either, especially the sea sickness.
Either way I have to reach some sort of homeostasis from the benzo first.

 

I´ve basically been in withdrawal since 2012, since I haven´t been able to fully get off of it. Been totally off now since January 1th.
Best wishes to you. It can´t be easy to struggle with this and have to take care of kids at the same time.

 

I guess I tapered too fast, yes. But I cannot reinstate now after 3-4 month. I´m just so kindled already.
The AD´s will have to come next. I´m dreading it already.

 

Maybe it’s related to your TMJ? I have a lot of unpleasant loud noises in my ears/head. I recently found out I have a grade 5 internal derangement in my left TMJ.


SYMPTOMS
TMJ disorders produce what is known as a constellation of symptoms. There are a wide variety of them, and not a consistent pattern to their presence. The most common ones are facial pain, difficulty chewing and swallowing, limited mouth opening, unexplained (phantom) tooth pain, headaches (including common migraines), blocked eustachian tubes (stuffy ears), dizziness (vertigo), ringing or whooshing sounds in the ears (tinnitus), subjective hearing loss, and chronic neck and postural tension. All these symptoms rarely occur together in one patient, and most patients suffer from only a few of them. For example, some only experience headaches, some only experience facial pain, and some only experience ear problems. A few TMJ disorder patients also suffer from unusual neuromotor disorders (such as facial twitching), neurosensory disorders (numbness), and a variety of minor visual problems.

ADAPTATION eventually eliminates the symptoms, because TMJ disorders are self limiting conditions. Longitudinal studies of tens of thousands of untreated patients have shown that everyone eventually achieves normal or near normal opening and relief of symptoms, because the TMJs undergo adaptation characterized by fibrosis of the retrodiskal tissues. This adaptive fibrosis may require anywhere from days to decades, but it almost always occurs by middle age. The process is described in MANAGING THE ARTHRITIC TMJ.

GENDER certainly plays a big role. Women are disproportionally affected because of their average more downward and backward facial growth pattern, which diverges from the average male facial growth pattern at puberty when females also become much more susceptible to TMJ disorders and then continues during adulthood. The gendered growth pattern does not stop after the second decade when other growth processes stop. Adult jaw growth does not stop, because it was designed to compensate for tooth wear in our ancestors, which also did not stop. Today it still continues in adulthood, even though it is no longer needed to compensate for tooth wear.

CHILDREN rarely suffer from serious TMJ disorder symptoms, because their extensive capacity for growth adaptation will change their facial structure to accomodate even extreme bite strain rather than allowing the strain to create tissue damage.

ELDERLY rarely suffer from serious TMJ disorder symptoms, because the adaptation that eliminates the symptoms almost always occurs by middle age, even as the deterioration of the TMJs continues with age as seen in X-rays and MRI. The adaptation occurs because the decrease in reflex reactive jaw muscle tightening that occurs with advanced age removes a key element from the symptom generating cycle in which cellular damage in a TMJ triggers reactive jaw muscle tightening, which causes more cellular damage, which causes more jaw muscle tightening. This arthrokinetic reflex was designed to protect acutely damaged joints by bracing the muscles that surround them. In the small number of our ancestors who lived into middle age, this protective jaw muscle tightening had to diminish or it could be triggered so frequently by the arthritic changes of normal aging that it could prevent normal function. Thus, to allow joints to withstand the inevitable arthritic changes of old age, neuromuscular reactivity diminishes in the elderly, which removes one of the key links from the symptom generating cycle. As a result, older people may experience difficulty with mechanical operation of the joints, a shifting bite that causes difficulty chewing (like operating a door off the hinges), chronic postural muscle tightness extending to the jaw muscles (myofascial pain), and some ear problems (dizziness, tinnitus, and stuffy eustachian tubes); but they are unlikely to develop persistent TMJ inflammation or acute painb, and any TMJ disorder symptoms they do experience respond quickly to almost any treatment.

TMJ PAIN, directly in the area of joint, is rare, because joint surfaces are designed to withstand large compressive forces and therefore cannot have sensory nerves in the area between the bones. The pain sensitive nerves in joints are located in the capsule surrounding the joint and in the attachments of the ligaments that reinforce the joint, and they only signal pain when the joint capsule is stretched by swelling or the ligaments are pulled too tightly.

ACUTE TMJ PROBLEMS are usually accompanied by TMJ inflammation. Since the TMJs are located on top of the back ends of the lower jawbone, the swelling produced by inflammation there pushes the affected condyle down and away from the skull, thereby slightly changing the cant of the long lower jawbone and making it difficult and painful to touch the teeth on the side of the swelling, because it requires driving the condyle through the area of inflammation.

JAW MUSCLE TENSION always accompanies TMJ disorders, because damage to any joint produces a reflex tightening of the muscles which cross that joint. The muscles that cross the TMJ are the jaw muscles. When they function on a damaged TMJ, they reflexively hold themselves braced in readiness to protect it, so they can never fully relax. Their chronic low level tension can inhibit resting circulation in their capillary beds and thereby prevent them from being able to adequately flush out waste products. In this manner, the jaw muscle tension produces the pain, but the TMJ inflammation produces the jaw muscle tension. Treating the jaw muscles produces short term relief, because it helps flush waste products out of the capillary beds, but it ignores the cause of the muscle tightness; therefore treating the jaw muscles without also improving the conditions in the joint was like massaging the leg muscles of someone who has an untreated broken ankle. The massage helps relieve the pain, but the muscles tighten up again as soon as the patient gets off the table and resumes walking.

HEADACHE is a primary TMJ symptom. Since the jaw muscles attach all over the sides of the head, jaw muscle tension can apply enough pressure to interfere with circulation. In monkeys, biting forcefully bends the whole skull and opens the sagittal suture along the top of the head. In humans, the jaw muscles are weaker, but the skull is thinner, so the jaw muscles can still apply significant pressure to the head. Chewing has been shown to increase cranial circulation. Sustained pressure from jaw muscle tightness can probably cause headache by disrupting the normal balance of fluid pressures in the cranium, which encloses the brain in a bony shell that cannot expand and contract in response to variations in fluid pressure as easily as other organs. As a result, different headache types (including common migraine) are often responsive to treatment that affects the jaw muscles - whether the pain is located at the front of the head (described as sinus headaches), in the middle of the head (described as temporal headaches), or at the back of the head (occipital or cervical headaches).

POSTURAL MUSCLE TENSION also accompanies TMJ disorders, and it can cause pain far from the TMJs, because the jaw muscles function as members of long myofascial chains running up and down the length of the body, and a change in the resting length of one muscle affects all the muscles in the chain. Backward jaw posture, which is a central feature in most TMJ disorders, can cause forward head posture, which triggers an adaptive response of body posture to maintain physical balance, an open airway, and a level head. The adaptive change in body posture can cause degenerative changes in the intervertebral joints which limit their ranges of motion, depriving the specialized articular surfaces of the rubbing movements they need for local circulation. Because the weight bearing surfaces of joints function under compression, they cannot be directly supplied by blood vessels. Instead, they receive their nourishment from a hydrostatic process that circulates fluids by repeatedly rubbing the surfaces together in a manner that moves the area of compression all around the articular surfaces. Each area of the articular surface releases fluids when it is compressed and then gets replenished when the compression moves to a different area. Movement of the bones at the joint should be smooth and variable enough to spread this compression and release process widely around the surface of the joint in order to keep the entire surface of the cartilage healthy. Because of this accessory circulation process, passively moving a damaged joint has been shown to dramatically reduce its healing time, and immobilizing a healthy joint to eliminate its functional circulation causes it to undergo arthritic changes. Restoring normal ranges of motion to injured joints is one of the mechanisms by which chiropractic adjustments provide relief.

When postural muscles have been held tight for long periods of time, they shorten anatomically and acquire a decreased resting length in a process known as contracture. When your jaw muscles are in contracture, your mouth no longer hangs so far open at rest, like when you fall asleep in a chair, your teeth may be held touching lightly, and they may go into a tight clench whenever overall resting muscle tensions are increased even slightly by stress (as explained below). Muscles in contracture have diminished resting circulation which can cause trigger points - commonly described as pea shaped nodes or knots that are exquisitely sensitive to manual pressure and cause pain at locations surprisingly far away in typical "pain referral" patterns. They can persist long after their original cause has been eliminated.

EAR SYMPTOMS include dizziness and disorientation, tinnitus (ear ringing), stuffiness (blocked eustachian tubes), and frequent difficulty hearing what people say (subjective hearing loss).

The ear symptoms can be produced by tightness of the jaw muscles, which share the same motor root as the jaw muscles. Increased resting tension in the tensor tympani and stapedius muscles, which tighten the ear drum, may cause the subjective hearing loss that causes TMJ disorder patients to complain they often miss things people say, even though hearing tests show normal results. Increased resting tension in the tensor veli palatini muscles, which normally pull open the eustachian tube during swallowing, can prevent the tube from clearing to equalize pressure between the middle ear and the outside air when you go up or down in a plane or over a mountain, making the ear feel blocked or stuffy. These two ear muscles also wrap around the hamular notch in the upper jawbone.

Most of these same ear symptoms can also be produced by fluid pressure from TMJ swelling. Anatomical studies of TMJs with dislocated disks have shown that most of the tissue bruising occurs at the extreme back end of the TMJ, located only 1.5 millimeters from the front of the middle ear. Bruising produces inflammation, which increases fluid pressure that easily crosses the thin membrane bones separating the TMJs and the ears.

BALANCE DISORDERS are frequent consequences of inflammation in a TMJ, because the body's balance mechanism is located in the inner ear. Serious injury to the balance mechanism can make a patient too dizzy to walk. Mild injury to that same mechanism produces feelings of disorientation, inability to concentrate, a tendency to bump into things, and "spaciness".

EUSTACHIAN TUBE BLOCKAGE can be caused by an inflamed TMJ or sustained increase in resting tonus of the tensor veli palatini muscle. The eustachian tubes pass just behind the TMJs, and swelling of a TMJ can cause increased fluid pressure that pushes a tube closed. In some cases, a TMJ disorder can hold a eustachian tube partially closed for long enough to narrow its lumen. Then any inflammation of the inner lining of the tube from a cold or an allergy can further narrow its lumen until it becomes blocked.

TINNITUS (ringing, roaring, or buzzing sounds in the ears) can also be caused by an inflamed TMJ or by tightened jaw and ear muscles, as well as a blow to the head, a drug, or a loud noise. Its presentation tells us nothing about its cause. In addition, the symptom can remain long after its cause has gone. A number of studies have shown that it responds to TMJ treatment in about half of the patients. That 50% cure rate would be considered poor for many medical conditions, but it is considered great for tinnitus, because there are so few other treatments that are effective.

INDICATOR SYMPTOMS

No matter which symptoms you have from a TMJ disorder, they all move in the same direction. Whatever makes your TMJ disorder worse will make your symptoms worse, and whatever makes your TMJ disorder better will make your symptoms better, but some symptoms respond faster than others. The more rapidly responding symptoms serve as indicator symptoms - they let us know if the treatment is on the right track. Pain is the best indicator symptom, even mild pain such as facial soreness. The ear symptoms are the worst indicator symptoms, because their response is more irregular. Tinnitus is the most irregular. It can even get worse before it gets better.

http://portlandtmjclinic.com/about/tele-tmj

 

I'm only 20. I've had tinnitus for years. I've been suicidal every day since. The knowledge that I can kill myself anytime I want to has been the only thing giving me comfort.

Last week, I wanted to enjoy the fresh air and sunlight and I went out the with a friend to the park. I don't have a social life because of tinnitus, but I didn't think anything would happen at the park and I really wanted to go outside.

There's a fire station next to the park with an air ride siren that goes off at noon. It's never gone off at any other time while I was there, and I was only there in the afternoons and evenings so I'd never heard it go off at any other time. It was like 7 pm, and as I were walking out of the park and past the fire station, the siren went off. I don't know how loud it was, but google tells me the fire station siren is around 140 decibels, for 3 minutes. I pressed my fingers against my ears and tried to walk fast in the other direction. I should've ran, but I was too embarrassed. I'm so angry at myself for that. I feel like anyone else with tinnitus would've ran, but because I didn't. I'm so mad at myself.

The siren went on for 3 minutes. I thought the spike would be temporary but it's still just as loud and I can hear it over most things now. Even if it does go away, it will get louder again, and permanently. It gets louder every year. I had to quit my job. I haven't been able to go to school because of the depression and anxiety it's induced. I've tried psychiatric medication and therapy. I feel like my life is ruined. Every time I try to enjoy something or go out, something loud happens. Because we live in a loud world. I feel like giving up. I'm so tired of fighting. I don't want to fight anymore. I don't want to hear this constant ringing in my head anymore. There's no treatment, so the only way to make it stop would be to end my life. I'm not going to do that right now, because I was hospitalized for a failed suicide attempt recently and it was traumatic and I don't want to risk going there again. But the thought of eventually committing suicide is the only thing that gives me comfort. What's the point of living if I can't even go outside? If I can't hang out with people my age? I feel so alone too because I don't have any friends that have this condition, and people my age usually like to hang out in loud environments. I can't have a social life. I couldn't even fly overseas to visit my grandma when she was sick months ago because I was afraid of my tinnitus worsening because of the trip.

I feel totally hopeless. When I think of having to live another decade with this noise in my head, I want to scream. I just miss how things were before so bad. I miss how it was before I even knew about a disease as horrible as tinnitus existing. I just want to be able to go out and do normal things like everyone else, interact with my family and friends, go into a restaurant without worrying about the music being too loud, sleep at a normal time at night. I already had mental illnesses. I can't deal with a physical illness like this on top of that, especially at this age.

 

My heart goes out to you, as I can't see myself lasting much longer either.
I find it almost ironic that right now lot of people get to experience just a tiny sample of what it's like to be isolated (minus the horrid 24/7 torture of course) and the world is pretty much at a stand-still.

Just imagine what would happen if tinnitus could spread by contact, just like the virus.
The following apocalypse would pretty much over-shadow every single negative event in the history of mankind up till now.

 

I sometimes wonder what it would be like if other people could hear your tinnitus. When it's really loud, it makes me feel like I'm going crazy because I'm the only one that has to hear it. It really intensifies the feeling of being trapped in your own body.

 

I feel like you do except I am much older.

My tinnitus worsened last year around the same time, it was between March and April.

I don't know what to say because I feel similarly. The only thing I can think of is that people on here keep talking about a "cure" in 10 years. If by some miracle, it was true, you would be 30. If I was normal from 30 on, that would be worth waiting. But, I am fucked. I don't want to wait and I will be too old. I think about suicide too, everyday, and I rate my tinnitus as '10/10 severity and volume.' There's rare occasions it goes down to 7/7.5 but it is only brief. It is hardly any relief and I only mention it because I do notice a change albeit too brief.

I don't know how to commit suicide as I don't know what method to use. I worry about failing and being even more incapacitated. I also am not religious so being "gone" scares me but eventually the torment of loud tinnitus will 'win' over those obstacles. I am certain of it. There's a lot of examples of people with severe tinnitus and hyperacusis killing themselves after enduring it for years. I am sure that they just can't take it anymore and they figure out how to do it.

 

Zzzzzzzzzzzzzzzzz...

 

I wish I could get oxycontin for my ear pain.

 

I'm so sorry your tinnitus is at a 10/10. That is horrible to have to deal with.
If there was going to be a cure in 10 years, I wouldn't mind waiting. But I have very little hope. Every time they say there's going to be a cure, it seems like it doesn't work out. So I can't wait.
I relate to your feelings regarding suicide. I'm not religious either, and the thought of eternal nothingness scares me. Even as I was drifting off into unconsciousness during my last suicide attempt, the thoughts about how I might never think or feel again kept racing in my mind and I couldn't fall asleep. But when my tinnitus is very bad, like now, the urge to die overrides that survival instinct. My greatest fears are living forever with this tinnitus, and failing the suicide attempt and ending up in worse condition. I worry about failing too. If I didn't have the fear of failing, I would've done it by now. The despair is horrible.

 

I always thought that "being trapped in your body" was a metaphor of sorts, mainly used by the peoole looking for a sex change.

But this is no metaphor.
The feeling of entrapment is as real as it gets.
The only thing close to it would be the kind of terror, which a trapped animal would feel as it steps onto spring loaded iron jaws, which is followed by lonely death somewhere in a dark forrest.

 

I feel like a trapped animal because of this. It feels exactly like being stuck in a cage.

 

Thanks friend.
You have support here. Empathy and love too.
I know it’s hell and you’ve been fighting tinnitus, hyperacusis and meds.
Reach out to @Star64, me, or all of us here.
You are super important to this community and we support you 100 percent.

Question?
Is that a picture of you and your dad, or you and your son?
I find it a very moving photo, it touches my heart every time I see it.