Suicidal

[Zugzug]

@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.

I'm thinking out loud here (which will probably trigger my hyperacusis; joking), but your interest is in computer science. If you can find a cocktail to help you cope with less brain fog, computer science is one of the best fields to pursue independently. There's Codeacademy, plenty of books. I know OnlineJudge is a great way to solve problems. You probably know about all of these things. If you have to start school late, it happens. But even if not (as in you don't go to college), my father-in-law actually was/is very successful with IT work without going to college. Granted, this is unusual, but being computer savvy is a treasure. You could even be a treasure to this community with those skills.

No pressure though. If it takes you a long time to solve problems now, so be it. My bar is so much lower for myself, but something is better than nothing.

I realize you have to get your brain fog under control first. Do you find anything in particular to worsen the tinnitus? Does coffee, for example, worsen it?

 

[valeri]

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.

Greg, what's behind this protocol? How can one know if there's neuroinflammation or excitotoxicity?

Thanks!

 

[AliasM]

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.

Thank you. I can relate to this. I am a naturally social person and was always organising lunch, dinners, activities. I am at the point with the hyperacusis where I can't even go grocery shopping. Twenty five checkouts all beeping at the same time, it's hell.

I think personality type also determines how we cope. I was diagnosed with OCPD a few months before this all started. This noise in my brain is not compatible with OCPD.

 

[Greg Sacramento]

How can one know if there's neuroinflammation or excitotoxicity?

Hi Valeri: Hypersensitivity from stress, non hypertension and non physical head/neck/jaw/facial, mouth trauma, can accompany brain fog, headaches, electrical static in head, scalp tenderness, ear muscle vibrations. More so from sudden noise hearing loss/hyperacusis.

what's behind this protocol?

To keep nutrients working the blood system.

 

[FGG]

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.

In the mornings that it is better are there any pattern? Did you get less noise exposure the night before? Do you have your head any particular way when you sleep? Are those nights when you happen to get more sleep? Do you mask when you sleep?

When you say your markers were high, do you mean C-Reactive Protein, Sed rate? Are they still high? Do you still have headaches? With bad headaches, I assume you had imaging at the time and it was normal (at least that's standard practice in the US anyway)... Did they check for infections: viral, tick born etc?

Auto-immune may be part of the picture. Your case seems really complex and I know that just adds to the frustration but you may need a second, third, fourth opinion (I saw around 8 doctors total so I know how that goes)...

 

[Greg Sacramento]

Hi again @AliasM - Thanks for your hugs. I'll tag @FGG as she's been a hugger too.

If your tinnitus started after exercises, then cause is most likely from physical anatomy. Hypertension - raising blood pressure is also possible.

Not from this - a force movement as you have range of motion - meaning that neck muscles aren't tight. Not having tight muscles neck including sternocleidomastoid's would rule out many neck problems, including vertebral, basilar or subclavian artery trauma. Vertebral artery is best seen by CT angiogram. These arteries do carry blood to the inner ear labyrinth, the vestibulocochlear nerve, and the brainstem, but forced pressure to C spine needs to happen with this. See highlight below.

Superficial Temporal and Occipital. Medical journal studies and radiology explanation input states 88% with all your mentions. Warm compresses to neck helped head electricity - so Superficial Arteries most likely played part, but would not show on a head CT scan. Occipital nerves are suspect from your description of exercise and this may not show early on with radiological testing. So from this, there's exclusion of all other arteries. The test that's needed is angiogram of neck, but is not advised. So far, what I mention is very common with injury to neck and receiving tinnitus.

Very little else in neck or anyplace else fits into tinnitus with injury from exercises not seen on CT, MRI or ultrasound, including hitting head.

Again, one issue that may be associated is hypertension - raising blood pressure causing headache and pain in the eyes or behind the eyes. Occipital nerves seem to be signaling your inner ear labyrinth, the vestibulocochlear nerve - as your audiogram is not concerning - only to inner ear, but very slight. A few 3-4/10 mornings (maybe 2 per week) but by around 3pm I am back up to a 7/10 fits into occipital nerves equation. Emotional and physical stress with occipital region distress are not friends.

Your tinnitus will get better - continue to use warm compresses and good posture. With an active life - young children - you will need to study head/neck posture techniques.

I agree with your doctors that you don't have an autoimmune disease. A pinched nerve would most likely had shown inflamed on CT or MRI. Most other area conditions or trauma would have shown on MRI or CT. Utility of C-reactive protein is a better diagnosis than the erythrocyte sedimentation rate.

There is a 12% or maybe slightly more chance it's something else, but it doesn't seem so with the care that you have received. A brief unrecorded hypertension crisis from raising blood pressure - if an emotional person - could be cause with exercise and twisting of shoulders.

HUGS.

 

[roy1159]

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.

You are correct, until now I said why bother but if I want to live I have to bother. Thx for the encouragement, I'm actually having my pre-surgery meeting today, I will have a date for surgery - I will update about it.

I'm thinking out loud here (which will probably trigger my hyperacusis; joking), but your interest is in computer science. If you can find a cocktail to help you cope with less brain fog, computer science is one of the best fields to pursue independently. There's Codeacademy, plenty of books. I know OnlineJudge is a great way to solve problems. You probably know about all of these things. If you have to start school late, it happens. But even if not (as in you don't go to college), my father-in-law actually was/is very successful with IT work without going to college. Granted, this is unusual, but being computer savvy is a treasure. You could even be a treasure to this community with those skills.

No pressure though. If it takes you a long time to solve problems now, so be it. My bar is so much lower for myself, but something is better than nothing.

I realize you have to get your brain fog under control first. Do you find anything in particular to worsen the tinnitus? Does coffee, for example, worsen it?

I actually thought about trying to enter university next year in October 2021 and try to apply now before it's too late. Deep down I know that I probably won't last a semester with my current mental capacity and the severe tinnitus and hearing problems. It's just that I want so bad to go back to normal life even though I know that's not possible... god that's so depressing, looking through the looking glass while everyone continue their lives, and I'm stuck in misery - even though I have exhausted all options to get better.

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.

Well said. One thing that has to do with it is the fact that the medical community downplays REAL tinnitus. They go online and see it's no big deal 'my tinnitus started and months later I reclaimed my life'... there is night and day difference between mild tinnitus (which should be classified as something else if you ask me), and then the severe tinnitus which is a debilitating illness.

 

[AliasM]

Thank you very much everyone. I am in such a damn state, I must seem manic. 3 months ago I was an entirely different person, believe me. This is not me. I really appreciate the time and effort you all have put in to help me. I struggle to make it through every single day and this thread helps.

FGG, my CRP and ESR were raised all through December. I realise they are non specific, I have studied biochem so I get it. Still, when there are symptoms, things become a bit more specific. My headaches were BAD and they were round the clock. I was waking at 2am in significant pain. I am not really having them now, but every day I feel off. Just off. Pressure changes in my brain, mildly dizzy.

Salt most certainly makes a difference for me, no question. So does water. When I lie down I get new tones so I wonder if there is fluid component. My left ear is now pulsatile, new thing... for about a month. A low level ring that pulses with my heartbeat with normal tinnitus on top. Left side is also somatic. When I turn my head, yawn, left side goes 10/10 for a second or 3. When I get out of a chair and walk, it revs. I went for a walk tonight, every time I stepped my left foot down, the volume increased in my left ear. My left WAS my good ear until about a month ago, now it's a mess.

Greg, I can't thank you enough, honestly... thank you. I am taking all of your advice, since using the compress, the back of brain chirping hasn't returned. I do get a lot of brain hissing, brain glass crackling and more but it is higher at the back of brain than what the chirping was. I do have a diagnosed autoimmune disease but they are telling me this is not related. I have had high blood pressure for years. Since having my 1st child in my 20s and it never went away.

I wish I understood how I developed hyperacusis. I just don't understand the process.

Roy, I was going to return to study this year also and do my Master's. That plan is well and truly shelved. I have 4 kids (ages 2 to 15) who I now barely interact with. If they want to talk to me they have to whisper. I can't be around my 2 year old at all. I adore that child, I love him with every fibre in my body... and I have talked with family about giving him to my sister. They live in another city, this is huge. Yes, giving away my child. He screeches and squeals like 2 year olds do and makes all kinds of noises that cause me significant pain. This is how shit my life got, in just 3 months. I can't talk to 3 of my kids and I have been put in a position where I might need to give my baby away. It's completely fucked. At the moment he is in full time child care which costs me a ton of money, whilst I stay home all day and do nothing but sit on Facebook being miserable and seeing friends live their lives with happiness that I used to have.

 

[__nico__]

My hearing problems has been determined to be the longterm effects of Cisplatin chemo I received in 2003. Progressive hearing loss as I age and will probably become cochlear implant candidate in a few years. Drugs like FX-322 will not reverse the effects of this.

Yeah no thanks, I'm killing myself. Goodbye.

 

[Jcmc]

I don't know if I can take this F... tinnitus/hyperacusis anymore. Doctors know nothing! There is no medicine, not anything!

 

[FGG]

My hearing problems has been determined to be the longterm effects o
f Cisplatin chemo I received in 2003. Progressive hearing loss as I age and will probably become cochlear implant candidate in a few years. Drugs like FX-322 will not reverse the effects of this.

Yeah no thanks, I'm killing myself. Goodbye.

Hi. I just want to run something by you.

I understand the long term effects of Cisplatin are on the Stria Vascularis (the drug that did me in, high dose Azithromycin, is about the only other thing that damages the stria to any extent).

I read a lot about this and Aldosterone restores and preserves some of the morphology (it makes the Na/K channels more efficient and there is some really good evidence that it slows down or even halts inner ear vascular degeneration). I took it for 6 months and even regained some low end hearing after a 2 years time frame. Really. I could actually hear thunder again. This is a reason low salt/high potassium diets can help but not as much.

Ironically, this is how I ended up getting noxacusis because I could hear a bit of bass in songs again and I cranked up my phone to max and pressed it against my left ear canal (I know it was dumb but I'm so desperate to hear music again after so long). But that is not really the point. Treating my cochlear vascular layer helped noticeably and I stopped for now (due to noxacusis taking priority at the moment) but I plan to eventually take it even longer.

I think it may be worth trying in your case.

It's hard to get bio-equivalent Aldosterone in the US (only available in Canada) but PM me and I can get you the name of the telehealth doctor I used.

It's possible you are already on Flourinef because you have a history of Adrenal cancer but it's not the same as the bio-equivalent. In fact, it has more of a mixed glucocorticoid/mineralocorticoid profile.

But the reason I strongly think you should consider trying is that some of your problems are likely not permanent damage since steroids had both a positive and then negative effect (as did coming off of them) and things like hot baths can make it temporarily worse (again, vascular).

I understand what you are faced with and I don't blame you for your choices but if there was ever a time to consider last ditch efforts it's now.

 

[FGG]

Thank you very much everyone. I am in such a damn state, I must seem manic. 3 months ago I was an entirely different person, believe me. This is not me. I really appreciate the time and effort you all have put in to help me. I struggle to make it through every single day and this thread helps.

FGG, my CRP and ESR were raised all through December. I realise they are non specific, I have studied biochem so I get it. Still, when there are symptoms, things become a bit more specific. My headaches were BAD and they were round the clock. I was waking at 2am in significant pain. I am not really having them now, but every day I feel off. Just off. Pressure changes in my brain, mildly dizzy.

Salt most certainly makes a difference for me, no question. So does water. When I lie down I get new tones so I wonder if there is fluid component. My left ear is now pulsatile, new thing... for about a month. A low level ring that pulses with my heartbeat with normal tinnitus on top. Left side is also somatic. When I turn my head, yawn, left side goes 10/10 for a second or 3. When I get out of a chair and walk, it revs. I went for a walk tonight, every time I stepped my left foot down, the volume increased in my left ear. My left WAS my good ear until about a month ago, now it's a mess.

Greg, I can't thank you enough, honestly... thank you. I am taking all of your advice, since using the compress, the back of brain chirping hasn't returned. I do get a lot of brain hissing, brain glass crackling and more but it is higher at the back of brain than what the chirping was. I do have a diagnosed autoimmune disease but they are telling me this is not related. I have had high blood pressure for years. Since having my 1st child in my 20s and it never went away.

I wish I understood how I developed hyperacusis. I just don't understand the process.

Roy, I was going to return to study this year also and do my Master's. That plan is well and truly shelved. I have 4 kids (ages 2 to 15) who I now barely interact with. If they want to talk to me they have to whisper. I can't be around my 2 year old at all. I adore that child, I love him with every fibre in my body... and I have talked with family about giving him to my sister. They live in another city, this is huge. Yes, giving away my child. He screeches and squeals like 2 year olds do and makes all kinds of noises that cause me significant pain. This is how shit my life got, in just 3 months. I can't talk to 3 of my kids and I have been put in a position where I might need to give my baby away. It's completely fucked. At the moment he is in full time child care which costs me a ton of money, whilst I stay home all day and do nothing but sit on Facebook being miserable and seeing friends live their lives with happiness that I used to have.

It might sound strange because pulsatile tinnitus doesn't seem like it bothers you compared to everything else but there are much less differentials than regular tinnitus. I think @Greg Sacramento definitely has the best ideas about your case.

The only thing I would add is follow up with the C Reactive Protein elevation and get viral titers. I might be biased here but I had very high C Reactive Protein levels at the very start of my vestibular symptoms which came down quickly but were relevant later when I had high EBV levels and my vertigo responded to anti virals. In fact, if my doctor had taken the C Reactive Protein elevation seriously at the time, they wouldn't have given me the high dose Azithromycin instead that destroyed my ears.

 

[__nico__]

The neurotologist did order an MRI with contrast of the inner ear and a CT scan to check the bones to rule out possibilities of hydrops or viral infections or otosclerosis, three other things he suspected I *may* have, but he says even then they're very unlikely. Not sure what to hope for. If those come out clear then I'm going to give myself 2 years of life before killing myself.

 

[Matchbox]

My hearing problems has been determined to be the longterm effects of Cisplatin chemo I received in 2003. Progressive hearing loss as I age and will probably become cochlear implant candidate in a few years. Drugs like FX-322 will not reverse the effects of this.

Yeah no thanks, I'm killing myself. Goodbye.

Isn't Cisplatin damage limited to hair cells?

I mean if there's any chance of improvement via FX-322 to turn support cells into hair cells, this sounds like it would help no?

Who determined it was Cisplatin? Sure that caused damage but why would it continue years later? That makes zero sense.

You aren't 50, the existing hair cells shouldn't "be" dying naturally right now.

 

[AliasM]

The pulsatile stuff is awful. Left ear was my good ear. Now it has a permanent mid level ring that revs up constantly with my heart beat, movement anything. That ear was so much quieter. This is so awful, I can't escape my own head.

I've just been reading MRI threads and I am back to obsessing over an MRI I had on the 10th December. It was of my adrenal gland. I was given a head set for instructions but no plugs. I found it a tough MRI to get through because of all the breath holding. It was a pointless MRI too on an incidental finding found in CT that turned out to be nothing anyway. I am so angry they didn't give me plugs. I heard a quiet hissing in my right ear around that time (days or days after, I don't know) but it went away. On the 23rd December my ringing was really loud but it went away. On the 29th December the ringing was there to stay. I didn't consider it because of the delayed onset of ringing but it seems this happens in many people. I wonder though what their audiograms are like. Would an MRI that produced severe tinnitus and hyperacusis leave very little trace on a standard 0-8 kHz test?

I obsess over this stuff all day long. Tinnitus has me in despair again today and I have been going over my head what I want to say in my note... to my kids, to my husband, to my parents. I am just not getting better. I'm getting worse. I feel like I want to write the note now because I might not have the capacity soon. My left ear is hell and it was the good one. Today it seems so much more reactive to sound after microsuction 2 weeks ago. FML

 

[__nico__]

Who determined it was Cisplatin? Sure that caused damage but why would it continue years later? That makes zero sense.

Cisplatin destroys many parts of the cochlea other than hair cell damage. It's also retained in the cochlea indefinitely, so progressive hearing loss is very commonly observed. I had a slight decline in hearing every year or so since the treatment and then a time bomb went off.

A neurotologist who specializes in the aftermath of what chemo does to the body determined all of this from extensive testing. He still wants imaging done to rule out other possible causes but he says it's very unlikely.

Also, Cisplatin literally destroys support cells, ruining any opportunity for FX-322 to work.

 

[RichieTheKid]

Cisplatin destroys many parts of the cochlea other than hair cell damage. It's also retained in the cochlea indefinitely, so progressive hearing loss is very commonly observed. I had a slight decline in hearing every year or so since the treatment and then a time bomb went off.

A neurotologist who specializes in the aftermath of what chemo does to the body determined all of this from extensive testing. He still wants imaging done to rule out other possible causes but he says it's very unlikely.

Also, Cisplatin literally destroys support cells, ruining any opportunity for FX-322 to work.

Hey Nico, I know your situation is hard, seemingly life or death. What do you think about stem cells?

Rinri Therapeutics, just maybe this may apply to you?

 

[TheDanishGirl]

I can't believe I am back at this point. I really can not f****** believe it. Every day I wake up heart racing panicky. Every day is torment to get through. Spending 3 years habituating 98% to tinnitus, and just to get several new tones that puts me back to square one, is devastating in a way I can not describe with words.

So now what? I can use another 3 years trying to habituate, just for it to get worse again? Plus I don't believe I can habituate to these new tones. They are morse code like and totally unpredictable, and I think the brain needs predictability in order to be able to habituate. I have experience with this because I do have an intermittent buzzing which started a couple months after my normal tinnitus onset, and that one I haven't habituated to. I still need to mask it when it comes.

I'm just done. I'm just so utterly DONE. I want to live, but I CAN NOT in this state... Every day I wake up the rope calls to me.

I don't believe any kind of treatment will come in the next couple of years that will help me enough to be able to live a fulfilling life. I got tinnitus, pain hyperacusis (which is also worsening) and terrible eye floaters. Even if something actually came for tinnitus, I would still be tormented by pain hyperacusis and floaters... what's the point?

I just think I am nearing the end of my journey. I feel it in my bones... This is truly unbearable and it just seems impossible to go on.

Has anybody had contact with Pegasus for VAD? Can you write them questions to find out if you're even eligible for a VAD?

This is what I want. A peaceful death... Can I at least have that, if nothing else?

 

[annV]

Has anybody had contact with Pegasus for VAD? Can you write them questions to find out if you're even eligible for a VAD?

Do us all a favor and send them a message. I'd be interested to hear as well.

 

[TheDanishGirl]

Do us all a favor and send them a message. I'd be interested to hear as well.

I will.

Update: message sent. I don't expect anything will come of it. I'm probably far too young to be eligible for it, but I at least have to try. If I get rejected, then I can scratch that one off my list and turn my attention to other methods.

 

[Gee82]

I can't believe I am back at this point. I really can not f****** believe it. Every day I wake up heart racing panicky. Every day is torment to get through. Spending 3 years habituating 98% to tinnitus, and just to get several new tones that puts me back to square one, is devastating in a way I can not describe with words.

So now what? I can use another 3 years trying to habituate, just for it to get worse again? Plus I don't believe I can habituate to these new tones. They are morse code like and totally unpredictable, and I think the brain needs predictability in order to be able to habituate. I have experience with this because I do have an intermittent buzzing which started a couple months after my normal tinnitus onset, and that one I haven't habituated to. I still need to mask it when it comes.

I'm just done. I'm just so utterly DONE. I want to live, but I CAN NOT in this state... Every day I wake up the rope calls to me.

I don't believe any kind of treatment will come in the next couple of years that will help me enough to be able to live a fulfilling life. I got tinnitus, pain hyperacusis (which is also worsening) and terrible eye floaters. Even if something actually came for tinnitus, I would still be tormented by pain hyperacusis and floaters... what's the point?

I just think I am nearing the end of my journey. I feel it in my bones... This is truly unbearable and it just seems impossible to go on.

Has anybody had contact with Pegasus for VAD? Can you write them questions to find out if you're even eligible for a VAD?

This is what I want. A peaceful death... Can I at least have that, if nothing else?

Same here. Science failed us big time. Please keep us posted on Pegasos.

 

[TheDanishGirl]

Same here. Science failed us big time. Please keep us posted on Pegasos.

Will do.

 

[FGG]

Same here. Science failed us big time. Please keep us posted on Pegasos.

Apparently, it wasn't science but people faking word scores to get into a trial and then mudding up the results.

Which is arguably worse in a way...

I'm so pissed off.

 

[Gee82]

Apparently, it wasn't science but people faking word scores to get into a trial and then mudding up the results.

Which is arguably worse in a way...

I'm so pissed off.

It sucks that people faked their tests to get into the trial.

I am no expert in science, but it looks to me like it's taking one step forward and two steps back.

We have faced so many disappointments lately: Lenire was a failure, Otonomy delayed and failed, Ebselen for COVID-19 delayed... I just feel hopeless.

 

[FGG]

It sucks that people faked their tests to get into the trial.

I am no expert in science, but it looks to me like it's taking one step forward and two steps back.

We have faced so many disappointments lately: Lenire was a failure, Otonomy delayed and failed, Ebselen for COVID-19 delayed... I just feel hopeless.

My only hope with this is in the severe group turning up good results because though the mild to moderate could fake testing, the severe group would have a much harder time with it.

The comment from the company was that looking through long term records it was clear people faked word scores. Maybe they should have done that better to start with... (the testing centers, not Frequency Therapeutics) but they didn't ask for long term records when I went. Only the last year or so.

 

[Marin]

I have 4 kids (ages 2 to 15) who I now barely interact with. If they want to talk to me they have to whisper. I can't be around my 2 year old at all. I adore that child, I love him with every fibre in my body... and I have talked with family about giving him to my sister. They live in another city, this is huge. Yes, giving away my child. He screeches and squeals like 2 year olds do and makes all kinds of noises that cause me significant pain. This is how shit my life got, in just 3 months. I can't talk to 3 of my kids and I have been put in a position where I might need to give my baby away. It's completely fucked. At the moment he is in full time child care which costs me a ton of money, while I stay home all day and do nothing but sit on Facebook being miserable and seeing friends live their lives with happiness that I used to have.

My heart hurts so badly for you and your children, and your story has me in tears. I am so fucking sorry that you are suffering so much and having to go through this. It's absolutely gut wrenching to be taken away from your children.

I don't have anything helpful to add to the discussion of your symptoms, but I just wanted to let you know that I feel what you wrote so hard. If time away from your youngest is what you need to do to try to heal, then that's what needs to happen so you can hopefully return to him later on. I completely understand what an impossibly hard decision that is to make and how hard it can be to put your needs first when you're used to taking care of everyone else.

I also pay a fortune for my two kids, 6 and 9, to go to after school care while I sit in my quiet room in pain all day. I hardly see them when they come home and when I do it's all hushed voices. I can't help my husband out with the cooking or cleaning anymore. I'm a ghost of who I used to be. My 6 year old has started waking up in the middle of the night again and crawls into my bed where she clings onto me so tightly for the rest of the night because she misses me so much. I'll hold her back and silently sob while wondering how can this even be real life and thinking that there just has to be some way back from this...

 

[dan]

Apparently, it wasn't science but people faking word scores to get into a trial and then mudding up the results.

Which is arguably worse in a way...

I'm so pissed off.

So Frequency Therapeutics is off the radar now? Fake?

 

[FGG]

So Frequency Therapeutics is off the radar now? Fake?

The audiologist said in group data there is evidence that patients faked word score data to get in. Which makes the data unreliable for word scores. There is some question of EHF too (you'd have to read the thread for more details).

So the possibilities are:

1) The drug works, but multi dose fucked it up (you don't walk on seeded lawns...). The company says this is possible because they saw results single arm but not multi dose.

2) Phase 1 super responders were lying (which would be odd considering no incentive to as they'd have to pretend to be close to CI range and that wasn't required).

3) The entire company is a fraud. I just can't make myself believe this with the people involved. But it's not impossible.

4) The drug restored words because it preferentially targets IHCs in vivo which are important for speech, which means you would need repeat dosing for OHC/audiograms but not a week apart.

Their unblinded data later this year will shed light.

 

[dan]

The audiologist said in group data there is evidence that patients faked word score data to get in. Which makes the data unreliable for word scores. There is some question of EHF too (you'd have to read the thread for more details).

So the possibilities are:

1) The drug works, but multi dose fucked it up (you don't walk on seeded lawns...). The company says this is possible because they saw results single arm but not multi dose.

2) Phase 1 super responders were lying (which would be odd considering no incentive to as they'd have to pretend to be close to CI range and that wasn't required).

3) The entire company is a fraud. I just can't make myself believe this with the people involved. But it's not impossible.

4) The drug restored words because it preferentially targets IHCs in vivo which are important for speech, which means you would need repeat dosing for OHC/audiograms but not a week apart.

Their unblinded data later this year will shed light.

And Bomb Blast Pill is even MORE fake than FAKE, I can't believe people on this forum actually donated $$$ like 100 bucks in some cases to Hough Ear Institute.

 

[dan]

Single dose worked (barely), but multi dose didn't? Let's face it, there will never be a cure in our lifetime. This is not something they can cure because they can't see it, they're not sure what causes it, etc.