Suicidal

[Backpacker]

Dr. Robert Yawn in Memphis Tennessee.

OK, I don't know anything about him.

Question, just in case: What would be easier for you to visit, Chicago, Illinois or New Brunswick, New Jersey?

 

[__nico__]

What would be easier for you to visit, Chicago, Illinois or New Brunswick, New Jersey?

Chicago.

 

[FGG]

Everything for my death with dignity is planned and will be done sometime this April. I have a neurotologist visit scheduled for Monday but I feel like the million other doctors I've seen he'll be equally as clueless. Going to spend my last days away from the site. Farewell.

I remember you mentioned before that it looked like a cancer recurrence. If you got a "death with dignity" appointment, I guess it's confirmed .

Assuming that's correct, I would do the same as you if faced with a terminal illness. Thanks for coming here to say goodbye. I'm so very sorry for your struggles and your pain. It's not fair and I wish you peace. Take care.

 

[__nico__]

I remember you mentioned before that it looked like a cancer recurrence. If you got a "death with dignity" appointment, I guess it's confirmed .

Assuming that's correct, I would do the same as you if faced with a terminal illness. Thanks for coming here to say goodbye. I'm so very sorry for your struggles and your pain. It's not fair and I wish you peace. Take care.

No, I didn't have a death with dignity appointment lmao. I'm literally killing myself with a cocktail of substances I bought in like January. I live in the US where euthanasia is fucked legally.

It's not a cancer reoccurrence, so far, but I'm having some more imaging done. Not expecting much.

 

[FGG]

No, I didn't have a death with dignity appointment lmao. I'm literally killing myself with a cocktail of substances I bought in like January. I live in the US where euthanasia is fucked legally.

It's not a cancer reoccurrence, so far, but I'm having some more imaging done. Not expecting much.

Sorry for the confusion. The "Death with Dignity" act allows euthanasia for terminally ill people in the US so i made the assumption based on the phrasing and the previous cancer mentions.

I very sincerely hope the ENT in Memphis can help...

 

[Zugzug]

No, I didn't have a death with dignity appointment lmao. I'm literally killing myself with a cocktail of substances I bought in like January. I live in the US where euthanasia is fucked legally.

It's not a cancer reoccurrence, so far, but I'm having some more imaging done. Not expecting much.

I am so sorry for your suffering. You have obviously experienced so much.

I am curious, because it seems like the main symptoms occurred after you stopped Prednisone twice. What made you go on the Prednisone in the first place? The reason why I ask is because I'm wondering how likely it is that the Prednisone caused the problem (from stopping) as opposed to just stopped covering up a problem (possibly autoimmune).

If I remember your story correctly, you went on the Prednisone for the tinnitus and then afterwards, developed the debilitating dysacusis? Is it progressive or more like a huge flare up (occurring over a few days) and then staying stable?

 

[Backpacker]

No, I didn't have a death with dignity appointment lmao. I'm literally killing myself with a cocktail of substances I bought in like January. I live in the US where euthanasia is fucked legally.

It's not a cancer reoccurrence, so far, but I'm having some more imaging done. Not expecting much.

Can you go to Chicago and visit Dr. Timothy Hain in Chicago Dizziness and Hearing or at least have a telehealth and send him your scans and tell him your story and symptoms and ask for his opinion?

I don't mean only send him the opinions and analyses or descriptions of your scans written by other doctors.

What I would like you to do is to let him see everything personally and explain all the symptoms because sometimes a lot of doctors don't know how to interpret scans or symptoms until a specific doctor does. And he is not an average doctor. If there is *any* chance you might have any type of third window syndrome or anything similar (PLF or SCCD) I want you to know he helped many people who had not had a correct diagnosis before they visited him.

 

[Marin]

@Marin, Kava Kava & Kratom are natural painkillers and also have the benefit of lifting your spirits. Can be bought online.

Thank you for the suggestions. I have looked into both of those. I believe I read Kratom can lead to heart issues, and I'm already prone to palpitations. I should revisit Kava Kava, though.

 

[__nico__]

Can you go to Chicago and visit Dr. Timothy Hain in Chicago Dizziness and Hearing or at least have a telehealth and send him your scans and tell him your story and symptoms and ask for his opinion?

I don't mean only send him the opinions and analyses or descriptions of your scans written by other doctors.

What I would like you to do is to let him see everything personally and explain all the symptoms because sometimes a lot of doctors don't know how to interpret scans or symptoms until a specific doctor does. And he is not an average doctor. If there is *any* chance you might have any type of third window syndrome or anything similar (PLF or SCCD) I want you to know he helped many people who had not had a correct diagnosis before they visited him.

I have heard of Dr. Hain. I'll consider it.

 

[Matchbox]

Everything for my death with dignity is planned and will be done sometime this April. I have a neurotologist visit scheduled for Monday but I feel like the million other doctors I've seen he'll be equally as clueless. Going to spend my last days away from the site. Farewell.

Dude. FX-332 is right around the corner in the grand scheme, there's still things to try too. There's Ketamine, there's potassium channel Kv7 family drugs completing Phase 2 (Xenon). It seems foolish to give up now... maybe if there was nothing with real hope about to come, but it is far from that. Does it set us back in life for years? Sure fucking does. But if something works in the next couple years we will be the ones living the most out of everyone.

Telling the neurotologist how bad it is will hopefully help, they are more versed in actual diseases of the middle ear which can cause some of this stuff, like autoimmunity issues, hydrops, otosclerosis (bone conduction if you've had one done, they're relatively simple) or even a fistula.

Just because you don't notice your balance is off doesn't mean they won't. They have better testing.

All of those things are hard to test for, but it certainly doesn't mean they are UNtestable. They very much are.

 

[AliasM]

I just can't stand another day of this. I have read all the posts over previous pages about exhausting all options, reading all the science, making an informed decision but to be honest, I just cannot stand it. I have past the limit of what I can cope with. This 24/7 all over brain noise and sensations are not tolerable to me. I just can not tolerate it. I can't escape. My brain can't relax. I get no peace. Sedatives don't even allow me to sleep through it. The hyperacusis is bad but for me, the tinnitus is worse. I need some peace and quiet, at least hyperacusis love peace and quiet. It has been 3 months with a hyperactive brain and I have had enough. It is cruel that there is no humane way to go about ending the torture. It has to be done in a way where family are left to find me. Fuck the churches, their subscribers, and the politicians for making this the case.

 

[roy1159]

So if I understand correctly, it literally came on severely in one day? Both the tinnitus and speech issues? Is it bilateral? Symmetric? I fully believe you, it's just so unfortunate that you can't pinpoint a cause.

I find it curious that noise in a cafe would cause it. I realize people have different genetic tendencies, but would a standard day at the cafe with earplugs break you like this? I would think it would be more gradual. I do know that hearing damage is cumulative and there is some element of the straw that broke the camel's back, but that's just so extreme from something that's not that bad.

Please don't blame yourself. There's absolutely nothing about this that would point to it being your fault. Have you had your extended audiogram yet?

The tinnitus started moderately in January 2020 (no apparent reason - my guess cumulative noise exposure from the café and headphones). It started bilaterally. I continued to work at the cafe part time with earplugs. Suddenly in June 2020 the tinnitus turned severe. 2 months later I watch TV and can't understand speech, I hear 'whistles' instead.

I worked with earplugs, what more can you ask? It's not like it reached beyond 90 dB... It's a café, not a construction site, albeit cafés can be dangerously noisy. People work in construction 20 years before they have this kind of damage to their hearing apparatus. I guess it was gradual but it doesn't make sense, how can so much damage be done in such a short time assuming I protected myself.

Also I have trouble understanding speech in quiet environments, so something should indicate it in normal audiometry. Most of speech in conducted in frequencies up to 8 kHz.

I've never read of a case similar to mine. How can your hearing go down the drain without tests suggesting it did. No nerve damage, no OHC damage, how can the entire damage be located in IHC and synaptopathy? Doctors said it's the most unusual case they have witnessed.

 

[SadMan]

Friends, how many decibels is this headset?

JBL TUNE 500T

 

[roy1159]

I'm done with this. I really am. This is the last time I'm having a mental breakdown, which was a daily occurrence through previous year. I wish I had killed myself when I had the chance, in hindsight the pain and suffering only grew from then on. I'm tortured, day in and day out, with no hope of anything ever getting better. What a waste of life. Tired of the tinnitus, the hearing problems and the chronic pain. Tomorrow I will be free of all this suffering at last. Yeah my life is cut short at 21 - honestly I don't care anymore, I have already lost everything in my life. Wish there was another way to stop the suffering but we know it's not possible. I'm just exhausted of it all. I'd like to believe I've fought well.

Also, my family can get fucked, I don't care how they would feel. I didn't even get the slightest sympathy from them, they even claimed I'm making all of this up. I wish they would suffer the same fate like I do, and will curse the day they were born. I don't feel guilty for passing the suffering to them. In all honesty, people want to live their own life, my parents even said it themselves, that I'm a nuisance to them and their intent to enjoy their life.

 

[__nico__]

Dude. FX-332 is right around the corner in the grand scheme, there's still things to try too. There's Ketamine, there's potassium channel Kv7 family drugs completing Phase 2 (Xenon). It seems foolish to give up now... maybe if there was nothing with real hope about to come, but it is far from that. Does it set us back in life for years? Sure fucking does. But if something works in the next couple years we will be the ones living the most out of everyone.

Telling the neurotologist how bad it is will hopefully help, they are more versed in actual diseases of the middle ear which can cause some of this stuff, like autoimmunity issues, hydrops, otosclerosis (bone conduction if you've had one done, they're relatively simple) or even a fistula.

Just because you don't notice your balance is off doesn't mean they won't. They have better testing.

All of those things are hard to test for, but it certainly doesn't mean they are UNtestable. They very much are.

Unfortunately I have health problems much worse than my ear problems that are why I'm planning on catching the bus... but I hope future hyperacusis sufferers have better treatment options than now. Ear problems seem to have a more hopeful future than the rest of my maladies

 

[Kriszti]

I'm done with this. I really am. This is the last time I'm having a mental breakdown, which was a daily occurrence through previous year. I wish I had killed myself when I had the chance, in hindsight the pain and suffering only grew from then on. I'm tortured, day in and day out, with no hope of anything ever getting better. What a waste of life. Tired of the tinnitus, the hearing problems and the chronic pain. Tomorrow I will be free of all this suffering at last. Yeah my life is cut short at 21 - honestly I don't care anymore, I have already lost everything in my life. Wish there was another way to stop the suffering but we know it's not possible. I'm just exhausted of it all. I'd like to believe I've fought well.

Also, my family can get fucked, I don't care how they would feel. I didn't even get the slightest sympathy from them, they even claimed I'm making all of this up. I wish they would suffer the same fate like I do, and will curse the day they were born. I don't feel guilty for passing the suffering to them. In all honesty, people want to live their own life, my parents even said it themselves, that I'm a nuisance to them and their intent to enjoy their life.

You don't deserve any of this suffering, especially at 21, I'm so sorry.

Can't you maybe get to a neurotologist? Your case is so specific that they may find interest in studying it and you could benefit from it. Or the extended audiogram that FGG suggested? At least you could show your family that this is not all in your head. I understand that you are extremely exhausted, but maybe can you wait until Frequency Therapeutics shares their result? It's supposed to be in this March.

 

[FGG]

I'm done with this. I really am. This is the last time I'm having a mental breakdown, which was a daily occurrence through previous year. I wish I had killed myself when I had the chance, in hindsight the pain and suffering only grew from then on. I'm tortured, day in and day out, with no hope of anything ever getting better. What a waste of life. Tired of the tinnitus, the hearing problems and the chronic pain. Tomorrow I will be free of all this suffering at last. Yeah my life is cut short at 21 - honestly I don't care anymore, I have already lost everything in my life. Wish there was another way to stop the suffering but we know it's not possible. I'm just exhausted of it all. I'd like to believe I've fought well.

Also, my family can get fucked, I don't care how they would feel. I didn't even get the slightest sympathy from them, they even claimed I'm making all of this up. I wish they would suffer the same fate like I do, and will curse the day they were born. I don't feel guilty for passing the suffering to them. In all honesty, people want to live their own life, my parents even said it themselves, that I'm a nuisance to them and their intent to enjoy their life.

We have some parallels.

My father would have been great support, but he passed away more than a decade ago. My mother really dismisses my symptoms because "there are totally deaf people who are happy..." and "at least you have your legs and aren't paralyzed..." I tried staying with her after my marriage quickly fell apart (my ex-husband was straight up abusive during the acute phase, blasting music "why would this bother you if you are "deaf"... I understand daily mental breakdowns very well) but I felt worse and worse everytime my mom told me to stop being so sad since I "could be like Alex Trebek and have Pancreatic Cancer", for instance.

I have even asked her for financial help (which she can afford) but she told me just to sell the jewelry she gave me years ago since I wouldn't be having kids to pass it to, anyway. She said without the prospect of kids, I should just sell my home, too. She thinks she is just being logical, but it hurts a lot. She is so convinced she would handle it much better than me ("if sound bothered me, I would just look at the beauty in nature, birds!" She really has no idea...). I'm on my own in many ways. Or at least without family and many (but not all) of my friends have stopped coming around because I am just not able to pretend to be ok at this point so I guess I'm maybe a bit depressing to be around. It's very, very, very lonely I know. (((Hug)))

Your hearing stuff parallels mine, too, as we talked about (I still think you need an extended audiogram).

I also have had chronic nerve pain (bad enough to require opioids to touch it at times) since getting Lyme disease 15 years ago. It miraculously got better after a decade (something I was told would never happen). And ironically it's now the best it's ever been (it's basically gone now) but now I'm dealing with these otologic issues.

Re: your family. I simply could not stay with my mom. She means well but she has the kind of personality where empathy for my situation wouldn't allow her to be in denial of the severity of it (she is a victim of childhood trauma and that's just the way she deals with things, in general, so it's not likely to change). Anyway, I feel like I would not have made it to now if I had stayed with her. You need a *lot* of support and it sounds like you aren't getting it.

Here is what I did. I contacted a friend in Oklahoma (I live in a state a long way from Oklahoma) and stayed with him for 3 months to get a quiet place to gather my thoughts as well as see Kopke at Hough Ear Institute while he was still seeing patients (he was the first to correctly evaluate me, like you I saw SO many unhelpful doctors). Anyway, I realized things were still horrible there but not *as* horrible as my friend has ME/CFS so he "gets" it to some extent.

While there, my friend and I started reselling things online and realized we were inexplicably good at it together and could make enough to squeak by financially. This is key because it provided me with something incredibly time consuming and that helped. I eventually convinced him to move back with me to the East Coast so that we could resell out of my house and not his Dad's place and it's been over a year now.

Anyway, my friend is not perfectly understanding but I don't need that. Just some understanding and empathy and he's been a life saver while I essentially just kill time and try to make it through each day until science can help us.

The point is find some at least a minimal level of support and something to keep you busy and realize that you are just killing time for now while we all wait for treatments. I feel extremely strongly they will come.

 

[roy1159]

You don't deserve any of this suffering, especially at 21, I'm so sorry.

Can't you maybe get to a neurotologist? Your case is so specific that they may find interest in studying it and you could benefit from it. Or the extended audiogram that FGG suggested? At least you could show your family that this is not all in your head. I understand that you are extremely exhausted, but maybe can you wait until Frequency Therapeutics shares their result? It's supposed to be in this March.

Hi Kristzi. I consulted a neurotologist as well, he said synaptopathy can be traced in tests - the discrimination in audiometry should be poor (mine was 100% which is normal) and desynchronization should come up in the ABR test (which was normal as well). He said he can't explain my symptoms with the results of the tests. Only suggested to maybe see if there is damage in EHF 8-16 kHz. Even if I undergo extended audiometry my situation stays the same, the tinnitus stays severe and instead of hearing speech clearly I can mostly hear 'S' 'SH' and 'TZ' sounds... whatever that may indicate. I have chronic nerve pain as well which only makes the torture worse than it already is.

I'm wasting my time anyway, being tortured and feeling the that time stands still while everyone around me is living their life.

I know that if I survive to see the next day it all stays the same - I can't function or take part in society or normal life, there is only suffering and dealing with this shitty medical problems, then what's the point of it all?

I can't make peace with my fate... it's just too brutal to accept. This nightmare just has to END, one way or another.

The prospect of treatments is great- especially FX-322, but if my situation was bearable than maybe I could have suffered for a few years until in reaches the markets through the world. Sadly this is not the case. Another day like this and I'm losing my mind completely.

 

[100Hz]

To @__nico__, @roy1159, and @AliasM (& you all), the last few pages have been tough to read as some seem so close to the edge.

Keep going. A treatment for this does not need to be perfect, I don't expect a perfect cure anyway and could live with a lot of my symptoms, as long as I could listen to music and have a social life once again.

It will be more than getting just cured, it will be like being reborn. And some days this might sound weird but I can almost feel what that would be like.

 

[FGG]

I just can't stand another day of this. I have read all the posts over previous pages about exhausting all options, reading all the science, making an informed decision but to be honest, I just cannot stand it. I have past the limit of what I can cope with. This 24/7 all over brain noise and sensations are not tolerable to me. I just can not tolerate it. I can't escape. My brain can't relax. I get no peace. Sedatives don't even allow me to sleep through it. The hyperacusis is bad but for me, the tinnitus is worse. I need some peace and quiet, at least hyperacusis love peace and quiet. It has been 3 months with a hyperactive brain and I have had enough. It is cruel that there is no humane way to go about ending the torture. It has to be done in a way where family are left to find me. Fuck the churches, their subscribers, and the politicians for making this the case.

If I recall correctly, you have periods in which it somewhat subsides. I think this may be key to cracking your case. Can you keep a really detailed journal and try to pinpoint what does and does not affect it, posture (especially with neck causes, this would be telling), activity, sound exposure, whether you are clinching your jaw or not, even diet, where you are in hormone cycle etc--throwing that one in because hydrops, for instance, can get worse with water retention?

I don't think you'd have the answer in a week but overtime, a pattern might emerge where you might be able to address some causes.

TMJ is highly correlated with tinnitus severity, too (as is neck stuff). IE you could have what would be much more mild tinnitus from noise damage but with a co-morbidity of TMJ, it could be severe.

I know it's exhausting to keep seeing doctors but I would seriously look into both neck and TMJ as cofactors with severe tinnitus, especially because you have a history of arthritis.

 

[Zugzug]

I've never read of a case similar to mine. How can your hearing go down the drain without tests suggesting it did. No nerve damage, no OHC damage, how can the entire damage be located in IHC and synaptopathy? Doctors said it's the most unusual case they have witnessed.

I can't totally connect on the family stuff, but my God, I can't even begin to imagine my situation if my loved ones didn't support me. I would be dead. It's really that simple. It's a lot easier said than done, especially coming from someone with privilege in this area like myself, but there are people in this world capable of loving you. I don't even know you and you have my love. There are ways to get support outside of family. Again, that comes from a place of privilege.

Where I do connect with you a lot is the situation of rarity and "most unusual case they have witnessed." My form of hyperacusis is so rare that I haven't found a single human being on the entire internet who has a form of hyperacusis that is similar. It is so fucking scary, and there's no other way to describe it. The amount of will power required to keep going without any light at all is simply torturous. That's on top of a pathetic quality of life, unable to talk, leave my house, take off my ear muffs, tolerate pencils writing, etc. Often times, "peace" for me is sitting in dead silence with pretty bad tinnitus (6 or 7/10).

I will reiterate what I said before. I am not convinced that your issues were caused by the cafe, especially if you wore hearing protection and there was an odd and sudden breaking point.

In my opinion, and I view you as a strong, dignified person either way, I think you should wait for FX-322 results and also consider trying Ebsalen. The drug SPI-1005 has the advantage of being intended for COVID-19 so will be a part of a movement with some legs.

 

[roy1159]

First, outsiders will never understand the struggle of not understanding speech (we won't go into understanding severe tinnitus lol... that's in the science fiction department). Only we know how detrimental it is mentally and cognitively. I feel a large part of my brain fog has to do with it (other part is due to the severe intrusive tinnitus - we all know how it affects concentration and attention span, for me it affects the memory as well).

I feel for you regarding your mom's behavior, you truly deserved much better than this. It's not that my parents are unsupportive, they took me to all the tests and doctors since the onset of my problems, they let me live in their house although I'm unable to work and study, and I can't even do fun things to fill my empty days. I guess they are frustrated as well regarding the fact the nothing that we have done medically to address the problems helped, and I will be honest - I take my frustration on them which is not fair, because they have really helped me through this. I'm mad at my father that said to me - 'at your age I studied full time and worked a job', I told him that's because you were healthy, he knows full well that I intended to go to university months away from my onset, also before my onset I worked 2 jobs and studied to enter my dream university. Still he somewhat to this day insists that I'm exaggerating my problems. I guess it has to do with the fact that they are invisible - all of them.

I know that if I can manage to at least do something productive daily I can pull through until treatments arrive, but I have lost the ability to do so. My concentration is like 10% of what it used to be, I'm in constant brain fog. I intended to at least get a day job so I can at least fill half my day but then the nerve pain appeared and is now apparently chronic. Money is also not my problem, I saved a lot of it so I can focus on my studies during University, it's not like money can help me solve my issues as well. I feel humiliated by the fact that I can't take part in society at my age - to an outsider I seem fine so they wonder why the hell am I sitting at home wasting the most precious years of my life. I get depressed just thinking about it. I know in the current state I can't even stand another day of this hell. I feel like myself and my life have no value anymore, coupled with the fact that every second is torture - I have had enough.

 

[Backpacker]

I'm done with this. I really am. This is the last time I'm having a mental breakdown, which was a daily occurrence through previous year. I wish I had killed myself when I had the chance, in hindsight the pain and suffering only grew from then on. I'm tortured, day in and day out, with no hope of anything ever getting better. What a waste of life. Tired of the tinnitus, the hearing problems and the chronic pain. Tomorrow I will be free of all this suffering at last. Yeah my life is cut short at 21 - honestly I don't care anymore, I have already lost everything in my life. Wish there was another way to stop the suffering but we know it's not possible. I'm just exhausted of it all. I'd like to believe I've fought well.

Also, my family can get fucked, I don't care how they would feel. I didn't even get the slightest sympathy from them, they even claimed I'm making all of this up. I wish they would suffer the same fate like I do, and will curse the day they were born. I don't feel guilty for passing the suffering to them. In all honesty, people want to live their own life, my parents even said it themselves, that I'm a nuisance to them and their intent to enjoy their life.

Can you tell us where you are from?

 

[FGG]

First, outsiders will never understand the struggle of not understanding speech (we won't go into understanding severe tinnitus lol... that's in the science fiction department). Only we know how detrimental it is mentally and cognitively. I feel a large part of my brain fog has to do with it (other part is due to the severe intrusive tinnitus - we all know how it affects concentration and attention span, for me it affects the memory as well).

I feel for you regarding your mom's behavior, you truly deserved much better than this. It's not that my parents are unsupportive, they took me to all the tests and doctors since the onset of my problems, they let me live in their house although I'm unable to work and study, and I can't even do fun things to fill my empty days. I guess they are frustrated as well regarding the fact the nothing that we have done medically to address the problems helped, and I will be honest - I take my frustration on them which is not fair, because they have really helped me through this. I'm mad at my father that said to me - 'at your age I studied full time and worked a job', I told him that's because you were healthy, he knows full well that I intended to go to university months away from my onset, also before my onset I worked 2 jobs and studied to enter my dream university. Still he somewhat to this day insists that I'm exaggerating my problems. I guess it has to do with the fact that they are invisible - all of them.

I know that if I can manage to at least do something productive daily I can pull through until treatments arrive, but I have lost the ability to do so. My concentration is like 10% of what it used to be, I'm in constant brain fog. I intended to at least get a day job so I can at least fill half my day but then the nerve pain appeared and is now apparently chronic. Money is also not my problem, I saved a lot of it so I can focus on my studies during University, it's not like money can help me solve my issues as well. I feel humiliated by the fact that I can't take part in society at my age - to an outsider I seem fine so they wonder why the hell am I sitting at home wasting the most precious years of my life. I get depressed just thinking about it. I know in the current state I can't even stand another day of this hell. I feel like myself and my life have no value anymore, coupled with the fact that every second is torture - I have had enough.

Even with the brainfog, there is likely something you could do to be productive. Even if you had to go slow...

The fact that you are writing these very thoughtful replies in a non-native language especially tells me you have at least some level of concentration. I'm sure your standards are high because you were likely amazing at it before (which also means your 10% might be better than a lot of people's 80%).

 

[Zugzug]

@roy1159, I want to add more, regarding the brain fog issue. It seems like (understandably) this is a big source of the depression in the sense that you can't find other ways of feeling fulfilled. I totally get it. It may not seem like it because you are new, but I have had bad brain fog throughout the past 2 years. I am currently drinking coffee, but I don't know how stable that will be. I may have to stop if it worsens my hyperacusis.

I completely feel you on this idea of existing without fulfillment. I would say most of my life over the past 2 years has been just staring at cartoons or watching The Office with subtitles. I've seen it so many times that I can follow along with the plot. I don't really watch new shows because I struggle to concentrate and learn new plots. I used to be a scholar and researcher so not having my brain is like a major gut punch. I used to concentrate on math all day every day. Intense, high-level focusing. The drop-off, as I'm sure you are experiencing, is really fucking depressing.

Anyways, I want to clarify because I have mentioned Lexapro and other antidepressants in the past. These drugs are definitely not for brain fog; in fact, they cause brain fog. They often help anxiety more than productivity. I really wish I could take an upper with Lexapro, but uppers also make my hyperacusis worse.

I wonder if you would benefit from a low dose upper along with an SSRI, or even in place of. For me, there are times where my depression from brain fog is so bad that I don't care if it spikes my tinnitus some. It is rewarding enough to obtain a few weeks of productivity in exchange for slightly louder tinnitus. I'm not sure if you've explored this equilibrium. I have also found that Lexapro makes me care about the tinnitus a little less. These are all things to explore, as it's a balancing act.

I just don't want you to think that Lexapro (which you've tried) is supposed to be clearing up your brain fog. Maybe consider other medications.

 

[roy1159]

@Zugzug, great post, I completely feel the same. How can one maintain any hope when being tortured, quality of life is non-existent, and the symptoms are so rare that the doctors are hopeless in even diagnosing. The doctors and audiologists as well don't agree it's from working in the café, but i see no other reasonable explanation for the onset and worsening of the symptoms, I also worked there almost 2 years so it does make sense in the end. I used headphones as I said but in reasonable volume - maybe it could be it.

Regarding the brain fog - it is soul crashing and indeed has a part to do with my depression. I also can't seem to comprehend new plots, not only that but I get distracted by the fact that I mishear most of what I watch and most of what I hear is consonants mainly 'S' 'SH' 'TZ'. I have barely watched tv shows and movies for the last several months because of it, sucks because it was a big hobby of mine before these problems. I will try to talk to my GP about other ADs to try... if I am alive by then.

@FGG, thank you for the kind words

 

[Matchbox]

First, outsiders will never understand the struggle of not understanding speech (we won't go into understanding severe tinnitus lol... that's in the science fiction department). Only we know how detrimental it is mentally and cognitively. I feel a large part of my brain fog has to do with it (other part is due to the severe intrusive tinnitus - we all know how it affects concentration and attention span, for me it affects the memory as well).

I feel for you regarding your mom's behavior, you truly deserved much better than this. It's not that my parents are unsupportive, they took me to all the tests and doctors since the onset of my problems, they let me live in their house although I'm unable to work and study, and I can't even do fun things to fill my empty days. I guess they are frustrated as well regarding the fact the nothing that we have done medically to address the problems helped, and I will be honest - I take my frustration on them which is not fair, because they have really helped me through this. I'm mad at my father that said to me - 'at your age I studied full time and worked a job', I told him that's because you were healthy, he knows full well that I intended to go to university months away from my onset, also before my onset I worked 2 jobs and studied to enter my dream university. Still he somewhat to this day insists that I'm exaggerating my problems. I guess it has to do with the fact that they are invisible - all of them.

I know that if I can manage to at least do something productive daily I can pull through until treatments arrive, but I have lost the ability to do so. My concentration is like 10% of what it used to be, I'm in constant brain fog. I intended to at least get a day job so I can at least fill half my day but then the nerve pain appeared and is now apparently chronic. Money is also not my problem, I saved a lot of it so I can focus on my studies during University, it's not like money can help me solve my issues as well. I feel humiliated by the fact that I can't take part in society at my age - to an outsider I seem fine so they wonder why the hell am I sitting at home wasting the most precious years of my life. I get depressed just thinking about it. I know in the current state I can't even stand another day of this hell. I feel like myself and my life have no value anymore, coupled with the fact that every second is torture - I have had enough.

Family understands until the novelty wears off. Same with a lot of friends.

If my family woke up with what I get to hear... the droning... wavering seashell mess in both ears... even outside... the thumping trying to hear music... the feeling of being "buried" knowing you're losing sound input and its replaced with pure garbage... they would absolutely lose their fucking shit and be wailing in the ER. I'm a pretty put together tough guy and it happened to me. Being berated by my family who I already thought had wayyyyy lower coping mechanisms than I have built in my life made me hate them and also wish they could experience this for a while with an indeterminate end (because knowing it will be over does make it bearable, it's the never gets better that makes you go down the suicidal road).

I never thought I'd have something break my coping potential so insanely. Losing a leg would've been better.

This is not some very light static in silence that they and I had before this.
Only those that get it get it. No peace or joy.

 

[AliasM]

Thanks FGG. The tinnitus never subsides. I get a few 3-4/10 mornings (maybe 2 per week) but by around 3pm I am back up to a 7/10. I can't find a pattern at all and I do keep a diary. If I turn my neck I can make my left ear go louder but there is no position it goes quieter. Left ear is worse, it is always ringing hard but it use to be my good ear. It has become a lot worse in the last month. Right ear is the one I am seeing tinnitus improvements but it is worse for pain hyperacusis.

I saw a physio and they cleared me for neck and TMJ. Range of movement was good and I have no pain. I think the tinnitus was started with brain inflammation. Headaches were severe and were daily. Doctors didn't care. Just told me to take Ibuprofen. I say inflammation because my inflammatory blood markers were high at the time which they ignored. I think pretty bad damage would had to have been done to my ear to develop hyperacusis, despite a fairly normal hearing test.

 

[FGG]

I wanted to add too @roy1159, that being forced to look for income sources so I don't lose my house (which is still a risk so that keeps me on my toes so to speak) motivated me to find the thing that keeps me occupied most of the day. If say, I didn't need the money and didn't have that stress, I'm 100% certain I would have just said "why bother, it doesn't matter..." Which is the sense I'm getting from you.

But now, even if hypothetically I won the lottery (I don't play so this won't happen), I would still resell because the alternative is just waiting for things to get better.

Staying busy is probably the best thing you can do imo as long as you aren't putting yourself at noise risk, etc. You don't even, for now, have to be classically productive as you can do that later in life. You could get really good at a game you can play in silence (I like Civ 6, personally), for instance. I know the severity of your tinnitus plays into this, but I still think you aren't giving enough credence to how much your condylar hyperplasia likely plays a big role in tinnitus severity and you could start to address that immediately.

 

[Greg Sacramento]

When there's neuroinflammation and excitotoxicity from a combination of psychological and physical stress, one should never skip meals. They should take vitamin B2 and B6 and Magnesium Glycinate. Drink a fair amount of water. Green tea. Sleep on two medium soft pillows. Two tablespoons of Light + Fit Greek blueberry or cherry six times a day.