Suicidal

[roy1159]

One thing I think a lot about are the thousands of people who are subject to loud noise daily. Amateur musicians, professional musicians, DJ's, opera singers, broadway performers, bartenders, bouncers, club promoters, dancers, construction workers, people who work at loud venues or in industries full of events with constant loud music. The people who have to get a series of annual MRI's for other conditions and have them with no hearing protection.

And in the end the unlucky ones get tinnitus. Always laughed at those who blasted music in headphones or otherwise, people aren't even aware of noise danger. I remember at the MRI the guy before me didn't even insert the earplugs properly and we are talking max loudness of 120 dB. Oh god, construction workers that work with saw discs and pneumatic devices without hearing protection.

And then there is me who worked part time in a cafe and done the damage people do in 40 or more years apparently, what a sick joke.

 

[RichieTheKid]

I share quite a bit of your psychological profile. I hate false hope. I'm like 10/10 fact-based, evidence-based kind of person. I studied math so my brain is literally trained for proving things with logic only. I don't even believe in FX-322 for myself (I have a dark, progressive, complicated, and severe form of hyperacusis that isn't noise induced).

As far as "achieving things in life before their situation began," I think you need to get outside of your own head a little bit (and I say that lovingly). You're right; you are amazingly young to have hearing problems. I feel young, but I'm a decent amount older than you. Let me share a little of my backstory so you know what I was robbed of.

High school sucked for me. I got to college and was a mess the first year. Smoked a lot of pot, drank a lot, wasn't very moral, frankly. Around sophomore year, I dropped the pot and found myself. I set out a goal (that would take from that point about 10 years) to become a math professor. I also met my (now) wife in college.

I get to grad school; my wife sacrifices by commuting far to work. I save my career by passing Ph.D. qualifying exams. Shortly after, my best friend dies unexpectedly, I developed symptoms of a systemic autoimmune disease. I was really sick. Flu-like symptoms, intense suicidal pain, fatigue, neuropathy, dryness, many other things. I spent the entire summer after my second year on a couch crying and wishing I was dead. I then had to take a semester off.

After the semester off, I was still chronically sick. I went to school, researched, took tests, taught with pain and fatigue. My "winter breaks" and "summer breaks" were massive pain flare ups after the stress of the semesters ended. This went on for about 4 years. I "managed" it with running and cutting out all sugar.

But through it all, I was successful. I was a good student in my class; my research was solid. I was going to make it. I was going to achieve my ten year goal. My wife, who had sacrificed to help put me through grad school (though I had a stipend), was going to be rewarded with a shared home; we were going to have kids.

Last year of grad school was absolutely brutal. I spent many hundreds of hours applying for jobs, typing cover letters, studying schools, practicing interview questions. I also was trying to publish my work to put me in the running for a job (market for professors sucks). I was fortunate to land a few on-site interviews for tenure-track positions. These interviews included multiple hour long presentations, meeting with deans, meeting with students, all sorts of stuff. One was two full days, no breaks. I did well.

I landed the tenure-track position I wanted. Knowing that I had a long-term position in the works, my wife and I began house hunting. On any given day, we would have to leave work and commute 3 hours (one way) to check out a home and quickly place a bid. After a number of months, we found a beautiful home (the one I am suffering in now) and got our offer accepted. The plan was to start a family in about a year.

I finish up my school year, typing my 150 page dissertation. We had to close on the house, deal with all of the pain in the ass insurance and homeowner bullshit (my wife did most of this, thankfully). My wife watched as the company she put in great work at for years refused to let her work from home to make our new living arrangement work. Regardless, she persevered and landed an amazing work-from-home job that she currently holds.

We were really going to make it. Two great jobs. An absolutely gorgeous home. A family in the future.

We finally move in. I'm not kidding you, five fucking days after we move in, my disease flares up. But instead of pain, I develop balance problems, tinnitus, and (at that point) minor hyperacusis. I'm not worried, I think it's just an ear infection or something.

I watch as it just keeps worsening and worsening. I lose my ability to converse, wear earplugs and earmuffs 24/7. I cry throughout entire car rides.

It finally got bad enough where I realized that I couldn't teach at my new job. I told my employer and we agreed to take the semester off. During that semester, I saw two upswings. I thought it was going away and that I could put it behind me. It wasn't stable enough for me to teach so we agreed to take one more semester off.

All I did was play ~40 dB music for 1-2 hours as an experiment to see what it did to my hyperacusis. That experienced dropped my LDLs by about 30 dB. I couldn't tolerate any sound. It even took me a long time to eat because I couldn't tolerate the sound of my own biting.

Finally, my employer and I meet and we (cordially under the circumstances) mutually part ways. We met through video chat (during COVID-19) and we fucking typed to each other. I lost my job through a typing conversation. (This is not any anger towards my boss, he was a really awesome guy).

Doctor finally puts me on long-term steroids. I improve by 20-25%, but level off completely. To this day, I am roughly around that level. I haven't left my house in a year. I wear earmuffs 24/7. I can't talk, can barely tolerate whispering. I was rejected disability income. My wife also had her life robbed. No kids for us anytime soon; she tiptoes around her own house. On top of providing all of the money, she has done most of the house work over the past 2 years.

I don't believe in anything. I probably have an autoimmune disorder attacking my nerves so FX-322 almost surely won't help much. Even if it was hair cells, my immune system will just kill them again. There won't be a cure for autoimmune diseases anytime soon. There won't be a regenerative medicine for nerves anytime soon (all pre-clinical). What am I living for? I'm living for the chance that it eventually gets so bad that I can't hear at all.

Trust me when I say, I know what it's like to be robbed of life.

Does your house have mold or any other environmental chemicals such as formaldehyde and other things you can't smell and a high concentration of EMF from multiple devices and perhaps neighbours etc.? I am just wondering if this may be contributing to your problem (not saying it's the cause) as it began right after you moved and if going to a cleaner outside environment may help?

 

[FGG]

Thank you... I was hoping you had improved as well... that was a much appreciated recap.

Everyone is fortunate to have you on this forum.

I have hyperacusis in my right ear, and I need to keep it completely plugged up if I leave the house.
Left ear... someone can slam a door... fine.
Right ear... if I flip a light switch on too quickly, I get a stabbing pain... click a medicine bottle, etc.
I have trained myself to plug my right ear when opening a soda can.

With my arthritis, I haven't taken Ibuprofen since the MRI... as you know how medication can worsen the ears.

I guess I will never buy that '69 GTO convertible I always wanted.

Thanks again.

I don't want to derail this thread but I don't think I realized that you had unilateral noxacusis. You actually might be an good candidate for the Silverstein surgery or a tendonotomy especially since it's one ear.

Post acoustic shock middle ear dysfunction can greatly add to tinnitus severity levels as well, especially as it starts to effect nerves and muscles of jaw.

Take liquid magnesium (unless you have kidney stones) if you can. Tastes *really* bad but helps. I have developed some ear pain, too, after trying to listen to something too close to my left ear. The magnesium does help somewhat (good for nerve pain in general as well).

 

[SadMan]

I have just been prescribed Propranolol and Amitriptyline as a migraine preventer.

I do not recommend using Amitriptyline. I used it for 2 days. It exacerbated the tinnitus.

 

[Marin]

I listen to The Paleo Mom/Whole View podcast on AIP (Autoimmune Protocol). Many people have changed their life with the AIP diet. I'm 5 months in with tinnitus and hyperacusis. I also started the AIP diet then, many of my symptoms are much better.

@twa, I'm so happy to hear that you are feeling better, and it's very encouraging to hear that the AIP diet is helping you! I'd been eating what I thought was healthy food since the beginning of my H journey, but I've only just recently started a very strict AIP diet and trying to heal my gut. I've had some recent bloodwork that points to possible autoimmune issues, and I hope it's not too late for me to turn this around because I'm in such a deep, deep whole of hyperacusis I'm afraid I'll never get out.

@AliasM, I'm so sorry for everything you are going through. My heart hurts for you. I completely understand what it's like to be dismissed by medical professionals, and it's an absolute living nightmare. If you haven't already considered this, you may want to look into seeing a functional medical doctor. Unfortunately, they are normally outside of insurance, but if you suspect autoimmune issues and are striking out with normal doctors, a functional doctor is more likely to try to help you find the root cause of your problems. I am currently working with one, and he is ordering additional bloodwork that my regular doctors didn't think of or refused to do, checking for food sensitivities, and making specific dietary and supplement recommendations based on my medical history and personal biochemistry.

@Zugzug, thank you for sharing your story. You've been through so much pain in your life, and it's so completely unfair. I'm so very sorry for everything you've lost. I truly hope that you and your wife can one day resume the lives you deserve.

Personally, I've already tried almost every supplement and medication mentioned on this site, and I've either had bad reactions or my conditioned worsened with each one. I also tried working with an audiologist and LLLT; both were HUGE mistakes. Seeing a functional doctor is one of my last hopes. I know Ebselen and FX-322 are on the horizon. I just hope I can last long enough to try them, and I also fear my disastrous LLLT treatment caused damage that neither of these medications can fix. I am just so exhausted from being in crippling pain 24/7.

 

[Zugzug]

I listen to The Paleo Mom/Whole View podcast on AIP (Autoimmune Protocol). Many people have changed their life with the AIP diet. I'm 5 months in with tinnitus and hyperacusis. I also started the AIP diet then, many of my symptoms are much better.

Just a thought. I'm sorry for what you are going through. Your wife sounds like a gem. My family do not try to be quiet or help in any way.

Blessings,
twa

Thanks for the suggestions. I've tried AIP and special diets over the years without success. I'm glad your symptoms are improving.

It has to be so hard with kids. You're right about my wife. Maybe this is a first world problem, as obviously abuse would be far worse, but it is hard being super disabled, unable to have kids, and holding back someone who's exemplary and would make a great mother. Holding back my wife is a major source of self esteem problems and it's not because she makes me feel guilty or something. It's completely innate. I feel like I've trapped her with a highly disabled, highly suffering, unstable person. It makes me so sad.

 

[Zugzug]

I keep a diary of symptoms for my twice yearly rheumatologist visits so I know how I was feeling and when. I got a diagnosis of Psoriatic Arthritis in December 2018 after my son was born, but 2020 was a great year for me, mostly remission, until late August.

My neurological symptoms started for me on the 22nd August. I developed weeks of daily severe right sided temporal headache (sharp shooting and stabbibn pains) with accompanied severe global pressure headache after lifting a light weight incorrectly at the gym. Zero headache history in my life prior to this date. Going back over my notes though, I wrote down that I started flaring in my joints on the 16th August... so maybe it wasn't exertion headache from the gym? My bloods were taken a few days after my flare onset and my ESR and CRP were high which confirmed my autoimmune activity at least.

Long story short but I went to the emergency room late August my headaches were so bad. My GP thought I had Temporal Arteritis, an autoimmune condition. The emergency department did a Head CT (normal) then a lumbar puncture. It showed raised intracranial hypertension and they send me home on Diamox. The said I was too young for Temporal Arteritis. My symptoms didn't fit Idiopathic Intracranial Hypertension. I had no history of headaches, vision ok etc but they didn't care. They needed the bed for someone else so kicked me out. Regardless I took the Diamox in fear of going blind and waited for Neuro appointment. My ears started ringing soon after. Google told me that tinnitus was a side effect of the Diamox so I didn't stress too much because Google also said it goes away when you stop taking the drug and I knew the drug was temporary until I saw the Neuro. It was also quieter and nowhere near as high pitch as it is now. The intracranial hypertension turned out to be a misdiagnosis as I always suspected and the headaches and ringing went away anyway.

Fast forward to late November 2020 where I returned to the gym but I was not tolerating exercise at all. Coincidentally, I wrote in my pain diary that I was starting a new flare at that exact time. Days later those same 2 headaches I had in August were back. I went to Emergency 12 times in December. The headache was incredibly bad, and daily, 24 hours, and the ear ringing was coming and going. Surprise surprise, my ESR and CRP were high again but they said again that I am too young for Temporal Arteritis and I just had a migraine. Take Ibuprofen they said EVERY SINGLE TIME. They dismissed my high inflammatory markers saying they are non specific.

I was headache free 5 days over Christmas which was a blessing. On the 28th December in the evening though, another really bad one came on. The next morning I woke to severe ringing and it has never gone away. I have only gotten worse. It started in the right side, same side as the temporal headache, but moved to the left ear a week later. 2 weeks after that the pain hyperacusis set in.

The last 3 weeks my left ear is significantly worse and the headaches are back. No one thinks my issue is autoimmune though. Not the GP, the ENT or even the rheumatologist. They all go on about how I don't have the sudden deafness that autoimmune inner ear disease brings and how my hearing is fine.

I am so scared for my next autoimmune flare up. I might lose my hearing next time. I am due for a flare up and I am not on any treatment at all. I didn't take Methotrexate for my joints because the pain was always manageable and the side effects of Methotrexate were worse than my symptoms.

I think I developed an insidious autoimmune condition that is not in their textbooks that affected my ears. Everything fits. The flare of my joints, the headache onset, my blood work... all at the same time both times. Like you I think it is the nerve. I think the tinnitus I experienced in August/September was not a side effect of Diamox. Now I strongly believe that my ears were being attacked then but it was not severe.

I went for a repeat hearing test last week because the tinnitus and the blockage in my left ear has worsened and even the audiologist threw me out. He wouldn't give me a repeat hearing test. Totally unnecessary he said. My hearing is fine.

I have seen SO MANY doctors and none are listening. I have just been prescribed Propranolol and Amitriptyline as a migraine preventer. I don't know whether to take it or not. I honestly don't trust these people. They don't live with the consequences of their incompetence, I do... and AM. I am disabled now. In 3 months I have gone from being on top of the world to completely disabled and suicidal. Like a switch.

Sorry that was long. Hope it helps. Does it fit with your story?

That's really rough, I'm so sorry. You have many conditions that I know little about, but here are my opinions/questions.

Assuming your diagnosis of psoriatic arthritis is correct, that puts you on the map for autoimmune diseases. From there, they often come in clusters.

The gym situation is really confusing because you do have an autoimmune disease that was flaring up, but you saw unilateral temporal headaches. From a quick google search, it seems like temporal arteritis is unilateral so that shouldn't be ruled out (I agree with your GP), though I have no idea if you actually have it or not.

As far as the ER experiences, I'm really sorry. I remember during my first flare up years ago, I went to the ER with pain and they looked at me funny like I wasn't using the ER correctly. Then I would return to my doctors and they would say it was anxiety. If I were you, I would take any diagnosis at the ER with a grain of salt since they are mostly trying to save life or death situations. However, your situation of possible intracranial hypertension (what they were looking for) does seem serious so perhaps their process was thorough? I'm not sure.

I think the tinnitus from drug side effects is red herring; you have so much going on that is more likely to be the cause. I also don't think you have AIED (much in the same way I don't think I do). That doesn't mean the overall problem isn't autoimmune, but I have read so many stories of AIED and a lot of them are similar. Sudden hearing loss in drops (sometimes over the course of hours). Around 50% have balance problems and most have tinnitus, but pain doesn't really have anything to do with the disorder. You do have the pattern of asymmetry in the sense that your right ear was worse and then your left ear got involved, but I would think you would see hearing drops.

Unfortunately, CRP and ESR are very non-specific so that probably doesn't help with an official diagnosis. I think you should keep pursuing the temporal arteritis theory, but also be open-minded to a gym injury, as that's a mega coincidence.

I'm not a doctor so I hope I'm not way off here.

 

[Zugzug]

@Zugzug, thank you for sharing your story. You've been through so much pain in your life, and it's so completely unfair. I'm so very sorry for everything you've lost. I truly hope that you and your wife can one day resume the lives you deserve.

Personally, I've already tried almost every supplement and medication mentioned on this site, and I've either had bad reactions or my conditioned worsened with each one. I also tried working with an audiologist and LLLT; both were HUGE mistakes. Seeing a functional doctor is one of my last hopes. I know Ebselen and FX-322 are on the horizon. I just hope I can last long enough to try them, and I also fear my disastrous LLLT treatment caused damage that neither of these medications can fix. I am just so exhausted from being in crippling pain 24/7.

I didn't include this in my story, but SPI-1005 does give me some degree of hope for symptom management. What I really like about this drug is that it could be a game-changer for risk taking. One of the hardest parts of my problem, for example, is that I can't go for walks or put myself in unstable environments because of setbacks. Would be awesome to be able to be around my nephew and niece and know that something is available if they scream (also, maybe the eventual Hough Bomb Blast pill will help).

 

[Marin]

@Zugzug, you are incredibly knowledgeable, and I can only imagine the amount of research that you must be doing on your condition. May I ask if you've considered LDN for your autoimmune condition? If you decided against it, may I ask why? That is one of the few medications I have not tried yet, and I am considering giving it a shot.

 

[Zugzug]

@AliasM:

I thought of something else for your situation. I wonder if when your psoriatic arthritis is flaring up, your blood pressure is raised from the pain, making you more prone to injury.

Along the same lines, if you were developing temporal arteritis, I wonder if you were also more prone to the gym injury.

Just speaking as an outsider, it's really hard for me to picture the weight lifting having absolutely nothing at all to do with the severity of this issue.

Does your house have mold or any other environmental chemicals such as formaldehyde and other things you can't smell and a high concentration of EMF from multiple devices and perhaps neighbours etc.? I am just wondering if this may be contributing to your problem (not saying it's the cause) as it began right after you moved and if going to a cleaner outside environment may help?

Yeah, this was considered. Honestly, the house moving thing isn't quite as coincidental as it may seem. My pattern for years was always that my pain and fatigue would flare up after stress ended. When I moved into my house, I went from super stressed 24/7 to basically no stress. I had the entire summer off with time to prepare for my new job. When I say my ear problems began five days after moving in, I was expecting the pain to flare up. But the pain never came. I have actually been pain free throughout this ear problem, which is why I know it's the same thing.

@Zugzug, you are incredibly knowledgeable, and I can only imagine the amount of research that you must be doing on your condition. May I ask if you've considered LDN for your autoimmune condition? If you decided against it, may I ask why? That is one of the few medications I have not tried yet, and I am considering giving it a shot.

LDN is something I've considered. The main reason why I haven't begged my doctor to try it is because he already tried steroids for a while and we are sort of clearing up my immune system, medication-free, so that I can try to get a diagnosis with some degree of accuracy. If I am diagnosed, I will be more pushy and I'm sure he would be open-minded.

 

[FGG]

That's really rough, I'm so sorry. You have many conditions that I know little about, but here are my opinions/questions.

Assuming your diagnosis of psoriatic arthritis is correct, that puts you on the map for autoimmune diseases. From there, they often come in clusters.

The gym situation is really confusing because you do have an autoimmune disease that was flaring up, but you saw unilateral temporal headaches. From a quick google search, it seems like temporal arteritis is unilateral so that shouldn't be ruled out (I agree with your GP), though I have no idea if you actually have it or not.

As far as the ER experiences, I'm really sorry. I remember during my first flare up years ago, I went to the ER with pain and they looked at me funny like I wasn't using the ER correctly. Then I would return to my doctors and they would say it was anxiety. If I were you, I would take any diagnosis at the ER with a grain of salt since they are mostly trying to save life or death situations. However, your situation of possible intracranial hypertension (what they were looking for) does seem serious so perhaps their process was thorough? I'm not sure.

I think the tinnitus from drug side effects is red herring; you have so much going on that is more likely to be the cause. I also don't think you have AIED (much in the same way I don't think I do). That doesn't mean the overall problem isn't autoimmune, but I have read so many stories of AIED and a lot of them are similar. Sudden hearing loss in drops (sometimes over the course of hours). Around 50% have balance problems and most have tinnitus, but pain doesn't really have anything to do with the disorder. You do have the pattern of asymmetry in the sense that your right ear was worse and then your left ear got involved, but I would think you would see hearing drops.

Unfortunately, CRP and ESR are very non-specific so that probably doesn't help with an official diagnosis. I think you should keep pursuing the temporal arteritis theory, but also be open-minded to a gym injury, as that's a mega coincidence.

I'm not a doctor so I hope I'm not way off here.

I agree that Psoriatic Arthritis probably plays a role in this.

@AliasM, I also think @Greg Sacramento made a good case for cervical spine and occipital involvement as I recall as well (which can be related to PA).

 

[roy1159]

I completely feel you on concentration issues. I have had horrific brain fog. I can't really read books continuously. Even flipping the pages is stimulating and distracting. My brain fog has been a little better recently because I've been drinking coffee, but it's overall been bad over the past 2 years.

I will repeat this kindly. @Aaron91 shared a bunch of really good questions that you have not answered. One thing that always frustrates me is when someone insinuates that the disability is depression. In other words, depression is the reason why I don't go for walks, as opposed to being unable to tolerate them.

With this being said, if you feel like you are in a position to commit a rational suicide, you should have no problem answering his questions and also a whole lot more.

It is absolutely totally irrational to commit suicide before cycling through every anti-depressant.

Also, if FX-322 can help you, the fact that you don't live in America should not be a make or break situation with suicide. I'm sure if it came to it, members here would support a GoFundMe or something. We don't even know the results yet and they are coming out (probably this week)!

You're just not, in my opinion, in the rational suicide territory. I am NOT saying your problem is depression, as opposed to a hearing problem, but I do think it's blinding you. Not nearly enough time has gone by and not nearly enough good answers to @Aaron91's questions.

There's no plan and I get it. You have brain fog and it's difficult. There are so many things yet for you to figure out though.

It's not only the brain fog. I can barely understand what people are saying and there is no way my hearing apparatus is so damaged. I will give an example, I was in doing a medical test (that is typical for older people usually) and I was in a waiting room with people aged 50-70 give or take. They were talking between them and it was all gibberish to me, it's that severe. I feel like my brain degenerated because of the hearing problems and the severe tinnitus which affects concentration and memory for the worst. I'm trying to be realistic, what else can I try in my situation, how can a different antidepressant help my problems? It's not like I'd suddenly understand speech or my tinnitus will diminish. I have done everything fine and my tinnitus worsened and the hearing problems appeared out of nowhere. The ADs I have tried which are Mirtazapine, Cipralex, Lexapro and Amitriptyline had no effect on the symptoms, they only made me number.

I do feel my ideation to commit suicide is rational as when I ONLY had severe tinnitus and was in therapy and taking ADs, I tried ending it and felt like I was losing it. And now with the hearing problems I can't function, at all. I wish I was exaggerating my situation but it's that bad.

I feel the urge to end this as soon as my neurological pain subsides, if that happens soon. Every time I think I have hit rock bottom, it turns out things always can get worse. I really feel like a mere shadow of the person I used to be, there is no me anymore. At least I have somewhere to vent in the meantime, not like I can do something else in my miserable situation.

 

[FGG]

One thing I think a lot about are the thousands of people who are subject to loud noise daily. Amateur musicians, professional musicians, DJ's, opera singers, broadway performers, bartenders, bouncers, club promoters, dancers, construction workers, people who work at loud venues or in industries full of events with constant loud music. The people who have to get a series of annual MRI's for other conditions and have them with no hearing protection.

Just feel incredibly unlucky to feel so awful all the time and plagued by facial nerve pain and reactive tinnitus with a bad baseline. I literally feel sick (flu-like) from the constant stress that these conditions cause and there seems to be no end in sight. My nervous system is shot and I'm always feeling like I'm freezing even when it's warm. People say give it 3 months, 6 months, a year, 2 years, etc but it only seems to get worse. I have a bad feeling that even FX-322 won't help the horrible cluster of symptoms I have and I'm just exhausted.

FWIW, I think about you and your case often. It really isn't fair.

 

[Zugzug]

It's not only the brain fog. I can barely understand what people are saying and there is no way my hearing apparatus is so damaged. I will give an example, I was in doing a medical test (that is typical for older people usually) and I was in a waiting room with people aged 50-70 give or take. They were talking between them and it was all gibberish to me, it's that severe. I feel like my brain degenerated because of the hearing problems and the severe tinnitus which affects concentration and memory for the worst. I'm trying to be realistic, what else can I try in my situation, how can a different antidepressant help my problems? It's not like I'd suddenly understand speech or my tinnitus will diminish. I have done everything fine and my tinnitus worsened and the hearing problems appeared out of nowhere. The ADs I have tried which are Mirtazapine, Cipralex, Lexapro and Amitriptyline had no effect on the symptoms, they only made me number.

I do feel my ideation to commit suicide is rational as when I ONLY had severe tinnitus and was in therapy and taking ADs, I tried ending it and felt like I was losing it. And now with the hearing problems I can't function, at all. I wish I was exaggerating my situation but it's that bad.

I feel the urge to end this as soon as my neurological pain subsides, if that happens soon. Every time I think I have hit rock bottom, it turns out things always can get worse. I really feel like a mere shadow of the person I used to be, there is no me anymore. At least I have somewhere to vent in the meantime, not like I can do something else in my miserable situation.

To be 100% clear, my suggestions of ADs is for coping only. From how you describe it, you have a severe hearing disorder without even the slightest clue what's causing it.

Do you think it's synapses? Hair cell loss? When you tried ending it, did you suffer a brain injury? What are your doctors' theories (I know they often aren't helpful)?

I don't want you to misunderstand where my concerns are. I am afraid that there's a way for you to cope until a diagnosis or treatment comes.

 

[RichieTheKid]

Is there hope for me? I really want to believe in regenerative medicine, I don't want to give up, my situation is so hard and I hate complaining but it's just... sigh.

I'll tell my full story soon, it's a long one, but I got ill when I was 16 and now I'm 26 without a formal diagnosis and have not been able to work or join university for the past 10 years.

I don't not want to live because I have a few wonderful people in my life, but I too am like a shell of my former self. I've endured so much to the point where I feel numb inside and I'm just ticking away days waiting and hoping.

 

[roy1159]

To be 100% clear, my suggestions of ADs is for coping only. From how you describe it, you have a severe hearing disorder without even the slightest clue what's causing it.

Do you think it's synapses? Hair cell loss? When you tried ending it, did you suffer a brain injury? What are your doctors' theories (I know they often aren't helpful)?

I don't want you to misunderstand where my concerns are. I am afraid that there's a way for you to cope until a diagnosis or treatment comes.

Only explanation I can come up with is synapses and IHC, but the severity of the symptoms doesn't add up with the amount of my exposure to dangerous noise. It's like my hearing went from normal to almost non-existent in a very short span even though there was no acoustic trauma and at the cafe I worked with earplugs, outside of it I was in the silence of my room and used no earplugs or took any measures that could cause this.

Also as I said, my second hearing test is better than the first (of course no way of knowing the extent of the damage in ultra high frequencies). I didn't suffer a brain injury in my suicide attempt. The doctor's only direction is Auditory Processing Disorder but I talked with the head of the hearing center in the best hospital in the country that conducts this test and she doesn't agree with it, stating that APD doesn't happen overnight. She said they will invite me to conduct several more tests (speech in noise scenarios, extended audiometry), but I can't hang on at this stage, even if I get a diagnosis (which I doubt will happen), I know I can't hang on to life with the current situation. I even had a brain MRI which was normal. I wish ADs were a help in coping but they numb by deteriorated brain even more. I'm really lost in this.

 

[FGG]

Only explanation I can come up with is synapses and IHC, but the severity of the symptoms doesn't add up with the amount of my exposure to dangerous noise. It's like my hearing went from normal to almost non-existent in a very short span even though there was no acoustic trauma and at the cafe I worked with earplugs, outside of it I was in the silence of my room and used no earplugs or took any measures that could cause this.

Also as I said, my second hearing test is better than the first (of course no way of knowing the extent of the damage in ultra high frequencies). I didn't suffer a brain injury in my suicide attempt. The doctor's only direction is Auditory Processing Disorder but I talked with the head of the hearing center in the best hospital in the country that conducts this test and she doesn't agree with it, stating that APD doesn't happen overnight. She said they will invite me to conduct several more tests (speech in noise scenarios, extended audiometry), but I can't hang on at this stage, even if I get a diagnosis (which I doubt will happen), I know I can't hang on to life with the current situation. I even had a brain MRI which was normal. I wish ADs were a help in coping but they numb by deteriorated brain even more. I'm really lost in this.

If I were to actually bet on your case, I would bet HF auditory damage with symptoms made much so more severe by your jaw involvement.

 

[Zugzug]

Also as I said, my second hearing test is better than the first (of course no way of knowing the extent of the damage in ultra high frequencies). I didn't suffer a brain injury in my suicide attempt. The doctor's only direction is Auditory Processing Disorder but I talked with the head of the hearing center in the best hospital in the country that conducts this test and she doesn't agree with it, stating that APD doesn't happen overnight. She said they will invite me to conduct several more tests (speech in noise scenarios, extended audiometry), but I can't hang on at this stage, even if I get a diagnosis (which I doubt will happen), I know I can't hang on to life with the current situation. I even had a brain MRI which was normal. I wish ADs were a help in coping but they numb by deteriorated brain even more. I'm really lost in this.

My friend, you have a doctor looking out for you. Say your high frequency hearing is shattered and FX-322 results are terrific. Coalitions are formed to bring about Compassionate Use. You have a doctor in your corner. What if you are the perfect candidate for it? All of the Frequency Therapeutics messaging is on understanding speech. You have the strength to keep going.

 

[FGG]

Is there hope for me? I really want to believe in regenerative medicine, I don't want to give up, my situation is so hard and I hate complaining but it's just... sigh.

I'll tell my full story soon, it's a long one, but I got ill when I was 16 and now I'm 26 without a formal diagnosis and have not been able to work or join university for the past 10 years.

I don't not want to live because I have a few wonderful people in my life, but I too am like a shell of my former self. I've endured so much to the point where I feel numb inside and I'm just ticking away days waiting and hoping.

I don't think anyone can tell what could potentially help without knowing your situation. Maybe you should make your own thread?

 

[Zugzug]

Is there hope for me? I really want to believe in regenerative medicine, I don't want to give up, my situation is so hard and I hate complaining but it's just... sigh.

I'll tell my full story soon, it's a long one, but I got ill when I was 16 and now I'm 26 without a formal diagnosis and have not been able to work or join university for the past 10 years.

I don't not want to live because I have a few wonderful people in my life, but I too am like a shell of my former self. I've endured so much to the point where I feel numb inside and I'm just ticking away days waiting and hoping.

I'm really sorry. Just wondering, and I don't mean this to be insulting at all, as we all have varying levels of brain fog throughout these problems.

Is your doubting of regenerative medicine because you don't understand it or because you don't think it's relevant to your problem?

As far as complaining, if there's any space to complain, it's a Suicidal thread on a support forum.

 

[roy1159]

My friend, you have a doctor looking out for you. Say your high frequency hearing is shattered and FX-322 results are terrific. Coalitions are formed to bring about Compassionate Use. You have a doctor in your corner. What if you are the perfect candidate for it? All of the Frequency Therapeutics messaging is on understanding speech. You have the strength to keep going.

I know help is on the way (albeit a few years away which is a lot for severe sufferers) but how am I supposed to function in the meantime like this? I'm just burning the time anyways, staring at the ceiling. All my dreams are shattered and gone. Everything that normal people can do has been taken away from me, seeing everyone my age developing their future and themselves, and then looking back at myself realizing that time stood still for these last 15 months in my life. I know I'm probably repeating things over and over but what else can I do? Going from normal life with the future ahead of me to this? Daily life is not doable, I don't even know why I'm still alive. I just don't see a way out of this, not when things are like this every second of the day. I don't see how anyone else in my situation would think otherwise.

 

[Zugzug]

I know help is on the way (albeit a few years away which is a lot for severe sufferers) but how am I supposed to function in the meantime like this? I'm just burning the time anyways, staring at the ceiling. All my dreams are shattered and gone. Everything that normal people can do has been taken away from me, seeing everyone my age developing their future and themselves, and then looking back at myself realizing that time stood still for these last 15 months in my life. I know I'm probably repeating things over and over but what else can I do? Going from normal life with the future ahead of me to this? Daily life is not doable, I don't even know why I'm still alive. I just don't see a way out of this, not when things are like this every second of the day. I don't see how anyone else in my situation would think otherwise.

Your age can be viewed differently though. The younger the age, perhaps the more robbed you feel. But at the same rate, the younger the age, the more time you have to see the benefits.

I can tell you this. Many people on this forum would practically kill for belief that help is on the way. Previous sufferers have committed suicide without that belief (imagine no concept of ear regeneration even existing in thought). You are in a special situation where you actually have regenerative medicine that may be able to help you (we don't know yet).

Psychology and psychiatry is not made to heal ears, but it is made for coping. Keep hanging on, getting tests done.

Something that helped me a lot: When I first came down with my disease 6 years ago in the middle of grad school, I saw the suffering and suicidal thoughts similarly to you. I was young and it killed me to be sitting on my couch in pain, while my peers were still in school.

However, I understood that I was pretty young to be in that position. It's extremely common for people to start late even just from not finding themselves. Plenty of people in my program were quite a bit older than me.

Even now, I was robbed of my dream, tenure-track job. It's the least of my concerns. My skills are still equally sharp and I'm still young. Many people don't find their permanent job until much later in life. All of my focus is on the medical outlook.

You have to figure it out. Once you do, there will be ways to cope.

 

[FGG]

I know help is on the way (albeit a few years away which is a lot for severe sufferers) but how am I supposed to function in the meantime like this? I'm just burning the time anyways, staring at the ceiling. All my dreams are shattered and gone. Everything that normal people can do has been taken away from me, seeing everyone my age developing their future and themselves, and then looking back at myself realizing that time stood still for these last 15 months in my life. I know I'm probably repeating things over and over but what else can I do? Going from normal life with the future ahead of me to this? Daily life is not doable, I don't even know why I'm still alive. I just don't see a way out of this, not when things are like this every second of the day.

I can relate to this. I feel like I'm wasting my life in so many ways now, too. I truly feel for anyone in their 20s (or younger) dealing with this, especially. Having built up a life first and then losing literally everything has its own challenges, too, though.

There are things that I will have permanently lost from this (since I'm in my early 40s now, the ability to ever have a child is one) even if my hearing gets restored one day. Similarly, you are going to mourn lost years and some opportunities. It's not fair and I'm so sorry.

Here is what I do to try to cope and this may or may not be helpful for you. I try to live for "future me" and try to love her in a way that I just can't love "present me". I think of it like being stranded on a deserted island. You truly *are* wasting time on that island until you get rescued, but if you just row out to drown yourself, you ensure that no rescue will ever take place.

It's hard and the day to day can be so agonizing. In your case, though, there are things that may help you even *right now* (like dealing with jaw misalignment). Please try to focus on that and even through all the pain, realize that there is a future you who still has other opportunities even if it's not exactly what you had planned.

I say this as someone who fights suicidal ideation a *lot* (literally daily) but wants so bad for "future me" to hear music again at least one more time even if I'm a very old woman by then (hypothetically, I truly don't think it will be that long but I'm prepared for it).

All that to say, suffering is not uniform and though I suffer a lot i know some people have it much worse and I don't blame them for giving up but that should be a very last resort and certainly shouldn't happen without rational planning and exhausting *all* your options which you haven't done at this point.

 

[twa]

@Marin,

I've been down the temporal arteritis road in October. I can share the details of what happened in my particular situation. I was having intense pain and headaches at both temples. It was pretty bad and just now subsiding after 5 months. The otologist's PA thought it was temporal arteritis. I spoke to my rheumatologist and vascular surgeon. There are two ways to diagnose the condition. One is to check for inflammatory markers through a blood test. The other is to do a biopsy on the temporal artery. I had inflammatory markers checked and my numbers were low. The doctors did not proceed with the biopsies.

I went to a TMJ specialist next and he thinks the muscle from the jaw to the temple area was inflamed. He wanted to start me on a dose of Prednisolone. I did not want to risk insomnia or increasing my already high anxiety. I chose to work on relaxation techniques and eat a soft diet for about a month. I did and it is much improved. Before all of this started, I was having throbbing in my temples which I think was due to stress and anxiety.

Hope this helps,
Twa

 

[Psych]

I have severe arthritis where I can hardly open my Turmeric bottle, inflammation, severe tinnitus and hyperacusis, several bad discs in my back (which led to the tinnitus)... so much fun.

I'm so sorry you're going through all of this. I know what it's like to have other debilitating symptoms on top of tinnitus, and they can really play on each other. I have paresthesia, for one thing, which results in burning/freezing feelings (among other unpleasant sensations) in hands/arms and feet/legs. So sleep, when you put that together with tinnitus, can be hard to achieve/maintain. I do have some techniques that I use to make the tinnitus seem not as bad, like telling myself I'm in the jungle, and that is just the ambient noise. I also say "I don't notice it most of the time," because there are times when I do not really hear the tinnitus, though it is very loud, because I've just habituated. But, because it goes up and down, has some added tones, etc., that certainly doesn't work all the time.

Is there anything that makes you feel any better?

 

[PeteJ]

I know help is on the way (albeit a few years away which is a lot for severe sufferers)

How do you know?

 

[PeteJ]

Your age can be viewed differently though. The younger the age, perhaps the more robbed you feel. But at the same rate, the younger the age, the more time you have to see the benefits.

I can tell you this. Many people on this forum would practically kill for belief that help is on the way. Previous sufferers have committed suicide without that belief (imagine no concept of ear regeneration even existing in thought). You are in a special situation where you actually have regenerative medicine that may be able to help you (we don't know yet).

Psychology and psychiatry is not made to heal ears, but it is made for coping. Keep hanging on, getting tests done.

Something that helped me a lot: When I first came down with my disease 6 years ago in the middle of grad school, I saw the suffering and suicidal thoughts similarly to you. I was young and it killed me to be sitting on my couch in pain, while my peers were still in school.

However, I understood that I was pretty young to be in that position. It's extremely common for people to start late even just from not finding themselves. Plenty of people in my program were quite a bit older than me.

Even now, I was robbed of my dream, tenure-track job. It's the least of my concerns. My skills are still equally sharp and I'm still young. Many people don't find their permanent job until much later in life. All of my focus is on the medical outlook.

You have to figure it out. Once you do, there will be ways to cope.

Regeneration (medicine or treatment) for the ear is a fairytale.

There is no update. Not one researcher has contacted anyone here, released any news or update or that section would be the most busy, that update or news would have the most activity on the site.

I haven't read or heard of anything substantial coming anytime soon. It would be impossible not to "bump into it" if there was something there.

 

[Kriszti]

Regeneration (medicine or treatment) for the ear is a fairytale.

There is no update. Not one researcher has contacted anyone here, released any news or update or that section would be the most busy, that update or news would have the most activity on the site.

I haven't read or heard of anything substantial coming anytime soon. It would be impossible not to "bump into it" if there was something there.

Have you read the Frequency Therapeutics thread in the Research News section? That's buzzing and busy. I'm not educated or smart enough to understand half the issues discussed there, but members who are seem to be very rationally hopeful, so fingers crossed that we are gonna get good news sooner than later.

 

[serendipity1996]

Regeneration (medicine or treatment) for the ear is a fairytale.

There is no update. Not one researcher has contacted anyone here, released any news or update or that section would be the most busy, that update or news would have the most activity on the site.

I haven't read or heard of anything substantial coming anytime soon. It would be impossible not to "bump into it" if there was something there.

Have you been living under a rock or something? We're getting the Phase 2 results of FX-322 any day now. The Frequency Therapeutics thread is probably one of the busiest on this entire forum.

 

[Backpacker]

How do you know?

If you read his posts you will realise the guy is 21 and his ear issues started last year and he doesn't even have a diagnosis yet (neither do you, by the way, tinnitus, dizziness, hyperacusis etc are symptoms). Of course nothing is guaranteed. But if the symptoms started out of nowhere, he should try to find out why. I don't know. My opinion is that he should have a long and detailed consultation or at least a telehealth with a neurotologist (even though some doctors don't care if a loud test or a pressure test is going to hurt more than help, he already did a lot of tests and he can just show/mail the results so I don't think there's any risk).

@roy1159, you are saying your symptoms started after a mild cold or something. Did you have Upper Respiratory Infection meaning your throat hurt or did you have severe bouts of cough and blow your nose a lot durig the cold? Did you have any pain in your ears during the cold? Did you have any other symptoms during or after that period? Nausea triggered by anything? Motion sickness? Light sensitivity?

Don't get me wrong, I'm speculating. I would just like you to try literally everything that doesn't hurt like, for example, herbal diuretic and Meniere's diet (avoiding salt and coffee etc) and to try to find a more knowledgable doctor. Also, I cannot guarantee that all neurotologists are more knowledgable than ENTs. They *might* know more because inner ear is their field.