Person with Schizoaffective Bipolar Disorder here. (I also have tinnitus but whatevs).
Doing this has been what I feel is my greatest accomplishment. You know, thoughts are a sense. You sense thoughts like you sense sounds. You do not think thought, that is just an illusion of the ego. You are not the thinker!
Once I understood this my life became so much easier. Nothing is reality to me anymore, everything is a loosely coordinated social hallucination. So when I see birds flying the corner of my room it makes sense, and I enjoy them. When I see a cat walk across the coffee shop I get to enjoy something no one else can. When I hear peoples thoughts and they are telling me they can read mine I open myself up to them and share my darkest secrets.
We should all realize that our senses are a shared hallucination. It might help solve a lot of problems in the world.
Hi, I realize this is unorthodox, but there are so few people like you, that I'm hoping you can offer me some advice. My wife was diagnosed as BP1 at 18 due to psychosis associated with mania. Many years later in her mid 30s, I believe she's been misdiagnosed, as she suffers from persistent auditory hallucinations even when not manic, which I believe is the threshold for schizoaffective BP. I've actually just only come to learn about this disorder recently. I've thought she was BP1 this whole time, but I think there's more to it now.
The issue is that I cannot convince her that she's hallucinating, even though I'm positive she is. Indeed, she's hallucinated me saying things, and those are just about the only ones I can convince her. But that only happened one time. What's more, she believes she's hearing things from her doctors, so she switches them constantly. I can't get a hold of them either, of course, because as you probably know, family members have next to zero rights when it comes to this kind of thing.
How can I ever convince her to seek help and medication for these hallucinations? How can I get a doctor to listen to me and take me seriously about what's happening to her? It seems impossible to break through. Even when I do convince her that a specific hallucination was as such, she never considers the possibility on her own.
This leads to situations where she's cut out her entire family because she believes they are saying terrible things about her when her back is turned, or through walls. We can't pass strangers on the street because when we do, she's sure they're talking shit about her. She can't hold down a doctor because when she leaves, she thinks he is gossiping about her with the receptionist, and when they talk, of course she never brings up hallucinations she's having. Thank God for remote work because she hasn't had a serious job since 2014 until now. I don't know how to break this cycle, and it's only getting worse.
How were you convinced that you were hallucinating?
I wish I could help you more but the only advice I can offer is that I agree with you that it doesn't sound like BP1.
I was diagnosed with BP1 and had to be admitted involuntarily. Based on my own experience and the experiences of other people described to me who I met in the ward it's not common for BP patients to hear outside voices. Outside voices seemed like a schizophrenic symptom. For me, when I'm manic or hypomanic the "power" always comes from within.
The only way I can describe it is that I don't get "told" things from BP, I feel them. So while a schizophrenic might think a friend, family, God, or a higher power is telling them something, with BP that comes from within as an indescribable feeling. I might wake up in the middle of the night and feel like I have to look through the window and I'm going to find something there. I don't know what's going to be there, it's usually always nothing, and after I do it I'm left kinda confused and frustrated because I know I had a reason to look out the window, but I have no logical explanation or ability to describe why. It's just a fleeting moment I have to act on that instant and the feeling disappears when I carry out the action and I get no satisfaction.
I got a bit lucky because this all happened during the height of covid which resulted in me thinking I had covid because I was so confused with what was happening to me (waking up in middle of the night, needing to go places, feeling like I had to be at specific place at a specific time for some event but nothing was there, wanting to switch careers from software eng to lawyer etc.) that I went to the emergency room a couple times in the same day to get tested for covid and they recommended I come see them the next morning and talk to someone about what's happening to me.
I did that, had a manic moment waiting for the doctor the next morning in the waiting room and then and was stuck in the psych ward involuntary.
Lucky for me being hypomanic or manic is so irrational to me and the thoughts I have get so irrational that I know how to catch it early and avoid full blown episodes. That's the only way you may be able to convince your wife - if she understands her thoughts and feelings are irrational hopefully you can convince her to seek help.
The other thing is the cyclical nature of the diseases. I can tell my psychiatrist ahead of time in May to up my meds because June - September are my roughest months for my mania and I can feel it start to come on late May. Bipolar you'll cycle through depression in the winter and mania in the spring/summer generally. Schizophrenia from my understanding has 3 stages. If your wife goes from depression to mania on a dime based on the seasons that sounds more like BP. If she doesn't have the mood swings and hears voices it's probably schizophrenia.
I'm surprised your wife would accept and live with her BP1 diagnosis but not consider the possibility that she may be schizophrenic. I would start with the irrationality of the strangers talking about her. Why does she think strangers would talk about her? Leave the possibility open that maybe the family is, don't dispute that too much, and focus on the strangers and doctors. You can't even get doctors to talk to you about her, why would they talk about her behind her back to other people? Also be sure not take the questions too far. If she's getting upset, confused, or angry with the questions you should stop because you could be aggravating the situation. Don't accuse her of not making sense or sounding crazy, just ask why she thinks what's she thinking.
Good luck with whatever it is, sounds like she has a terrible disease either way :(
> How were you convinced that you were hallucinating?
To be honest, some things were easier to spot than others. I used to have olfactory hallucination and it drove on ex girlfriend nuts cause I was always smelling things that were not there. I just invited she was not smelling anything.
I also have closed eye visions. These appear as faces and scenes when I close my eyes, mostly in the evening that are quite visually crisp. Most of the faces are frightening. I did not know I was dealing with this till I started Zyprexa and they stopped.
The visual hallucinations were easier since I would say "Did you see that cat?" and I would get strange looks or someone else there would not see them. And seriously, watching "A Beautiful Mind" helped me with this.
The thing that helped me most was Buddhism and meditation. Buddhism lead me to thinking more about the nature of perception and meditation allowed me to perceive without reaction so I can judge things better.
A also have perceptual changes, like being on psychedelics, but these are not hallucinations. I feel like I can see around things or everything has light trails or colors are really intense. When I was early in mediation the floor would always start waving like an ocean. When I was young I saw the faces of people on the TV change and I thought I was seeing them as they really were.
I get a lot of the talk that your girlfriend has, and that is hard an I still deal with it but mostly by ignoring it. It is by far the most difficult. Its base is paranoia I feel because those voices are always saying negative things, like I did not pay for my coffee right. Ha! Just happened today!
By the way, COVID threw me into my worst psychosis ever.
I do not know what to say about helping her. I was in her space and I know how it feels. No one could convince me of anything. I thought the water was "too blue" coming out of my faucet that I called the water department twice for them to check it.
1) Don't take things she does personally. That eases your stress.
2) Do not directly contradict her hallucinations but try guided questioning about them. That is what 30 years of therapy taught me. I question everything now.
3) You can call her doctor and leave a message.
4) I do not recommend ever having her involuntarily committed unless she is a serious danger.
But this is not something anyone else can force her into, it is a process of self discovery, a Shaman's journey. And maybe phrase it as that; A Shaman's Journey.
I lost my whole family, but frankly they were not good for me anyway. And I still have episodes, as you can see if you go through my history here, but I am much more stable now than ever and no longer need medications.
Good luck and if your want to email me: followingdao@proton.me
I’ve become very interested in the phenomenon of hyperphantasia recently, or the degree to which people are able to conjure various senses in their imagination. My wife is able to envision spaces well enough to recall where most things are in the house, a friend can nearly taste a flavor she’s only encountered in a dream. For myself, I can recall music or sounds quite vividly, and on occasion this manifests as aural hallucinations (often with fatigue).
If you don’t mind me asking, I’m curious if you feel that your visual and aural imagination are very strong and if so, do you believe there’s any connection with the additional sights and sounds you encounter out in the world?
I have a strong imagination and make connections easily that people have a hard time seeing until I explain it.
I believe most hallucination are the result of a creative predictive mind that is trying to understand patterns. Like I can often feel like I understand the meaning behind some of my schizophrenic friends hallucination. I think that they are speaking in stories and metaphors.
I've never once in my life been able to have a hallucination or truly imagine what something would really feel like.
Even taking psychedelics doesn't seem to help. I just don't hallucinate, I don't get psychosis, and I don't get any symptoms of schizophrenia, despite having a long family history of it.
Yes, those are not necessarily nice things to live with. But it feels terrible and suffocating to have never had a taste of any of it. To be so stuck in this reality that I can't create any reality of my own.
Sure, technically the reality that I see is just part of my mind. But it never gets extended, never gets modified or anything. Not even if I stay up for 4 days straight do I ever see or hear anything atypical.
I've never had sleep paralysis. Never had a lucid dream. Never even had a lucid daydream. What infrequent daydreams I do have, I get stuck inside because I think they're real and forget all about actual reality. Because it's so difficult and so infrequent for me to ever experience anything else with my senses, my brain has been wired to believe my senses as the one and only source of truth.
> To be so stuck in this reality that I can't create any reality of my own.
You are still creating your own reality. It is just more stable.
The point is not for me to live like you or for you to live like me. The point is to be OK with your own life and learn what you can from others. We need each other, but we do not to be each other.
You have a gift of your own. To not be able to trip from psychedelics is a super power. You are just as much a genetic freak as I am.
In the past I would have looked at your life and been just as jealous as you are of me.
> You have a gift of your own. To not be able to trip from psychedelics is a super power. You are just as much a genetic freak as I am.
Weeeellll... I totally can trip. I actually have been, for around the past 7 hours or so. I find it just as wonderful as any other to get lost in pretty art <3
I just don't experience any psychosis or schizophrenia symptoms. And I don't trip for that purpose, but psychedelics just happen to be a thing I've tried that doesn't result in any of those symptoms.
I agree and I would take this one step further. I would challenge that not just our senses are a shared hallucination but how those senses are perceived are just as prone to delusional thinking/beliefs not set in reality as anyone else. Someone can objectively type a neutral statement but you can interpret it as passive aggressive and now have a delusional belief that this person dislikes you, assuming you know their intent and mind.
I myself run into this a lot with people who aren’t on the schizophrenia spectrum of disorders: they tend to believe wholly that their interpretation of stimuli is equivalent to reality, and are highly resistant to the idea that their impressions can be wrong. This is anywhere from “you didn’t text me back after 10 minutes, you don’t like me” to “I like this programming language therefore I end up believing it’s technically necessary” and especially the “I can’t conceptualize someone else’s experiences, therefore they must be lying”.
I never really thought of it that way. I can feel my mood as if it was any other sense. Subconscious paranoia has the feeling of sharks in the back of my mind.
There are three forms of schizoaffective disorder: bipolar (or manic) type (marked by symptoms of schizophrenia and mania), depressive type (marked by symptoms of schizophrenia and depression), and mixed type (marked by symptoms of schizophrenia, depression, and mania).
The issue isn't that، you can't simply rearrange words and omit others the way he used the phrase was nonsensical.
And having a quick look through his post history I suspect it's a self diagnosis and one of several he has given himself, which is at times just "bipolar disorder".
Sometimes people do not put words in the order you want. Sorry.
> And having a quick look through his post history I suspect it's a self diagnosis and one of several he has given himself, which is at times just "bipolar disorder".
Sorry I was not specific enough for random people on the internet who are not into psychiatry and would probably not know the distinction. I usually tell people I am just Bipolar because that is less scary to people than the "Schizo" part.
And you know, in general, I am nonsensical to most people, but most people are not as smart as me.
If you want to call my doctor to verify my condition. But I mean how does one get disability with a diagnosis I made up myself? A lot of people with Long COVID would like to know.
This was an interesting read for me, particularly around the phantosmia.
For the past few decades - since puberty or thereabouts - I started to smell something unpleasant and it wouldn't go away no matter where I was, or how recently I'd had a wash, leading me to assume it must be me and that I simply smell.
After suffering for a while I finally reached out to family and bosses at work and of course their response was that I don't smell, which was news to me. I had assumed I stank and everyone was awfully politely putting up with it.
Spoken therapy and CBT helped a bit, but being the NHS it trailed off in an unsatisfactoy fashion and so I dealt with it myself over the years by becoming a hermit.
Later in life I paid for further spoken therapy and was prescribed an SSRI anti-depressant and that finally put me on the path to not smelling bad smells more often than not. SSRIs of course have side effects which aren't fantastic, but it's better than the godawful feeling that you stink!
I feel for the author who dealt with this on top of tinnitus.
It's not often that I get to talk about this, if anyone has any similar experiences I'd love to hear about them :)
To say that I experienced a mental breakdown would be putting it lightly.
However, in this time I experienced altered smell. I haven't spoken about this much. Nearly all food smelled rancid, putrid and rotting. Despite visually appearing to be free from decay - it was normal food. Humans stank, including myself and it was a horrible time.
Eventually, also with medication, I was able to regain a more normal sense of smell. I suspect that human smell is something like a radio - capable of perceiving far more than we imagine, but that neurochemistry dictates where that smell frequency is dialled to.
Perhaps as humans we are ordinarily on the evolutionarily optimal frequency, a kind of middle ground, despite much more being possible.
I used to love milk. Used to drink milk all the time. All different kinds of milk. But one single time someone made me a bowl of cereal with spoiled milk. One single taste of spoiled milk and it was over.
Well, my ability to drink milk. Was over. Now all milk tastes and smells spoiled. All milk. No matter how fresh it is. No matter where it came from. I can't drink it. It's so strongly rancid even though absolutely nobody else can tell what it is I'm tasting.
I don't understand this. I can put any flavoring like vanilla or strawberry in the milk and it'll be perfectly fine. But for some reason, perfectly fresh, healthy milk just... tastes spoiled. Always. And it always will.
Why? I loved milk. I love milk. There's no reason for it all to taste so terrible. I know what I'm tasting isn't the milk. I know milk is supposed to taste fresh and nice. I even know exactly what I'm supposed to taste, because it's what I taste if I mix anything else with the milk.
This feels like a silly idea but if you take a glass of fresh milk and a glass of spoiled milk, would you be able to distinguish them? Would smelling them side-by-side maybe recalibrate things?
I smell the spoiled inside the fresh milk. Somehow. Like, I'm detecting whatever ingredient causes spoiledness, far before the milk has actually spoiled, but it just smells/tastes like the exact pure concept of spoil.
I've had runny nose, blocked nose, in between all my life. Result?
My sense of smell is highly diminished. Like, I can "remember" taste of what a dish is so my brain makes up for it....
I can smell hot vapours or strong odors but not normal everyday stuff.
The person next to me has smelly feet, I can't be bothered 'cos I can't smell it. Same for fruits and veggies. I can't go to a shop and choose by smell.
This isn't that bad, it often feels my nose isn't there so there is just an absence of sensory impulses. Sometimes it causes issues but generally its okay
>Also, the surgery seemed to introduce dark maggot-size shapes in the periphery of my vision. Switching from near sight to far sight brought on a bout of the maggots, which were hard to ignore at first, but I learned to forget about them. If I’d had this surgery as a child, I probably would have explained the maggot shapes by assuming the scalpel had implanted them in my eyes.
I know someone who recently started to experience visual noise - spots all over their field of view like TV static. After some research and testing it appears they have a thing called Visual Snow Syndrome, sort of the eye equivalent of tinnitus.
So far no idea what to do about it though - has anyone here come across this before?
In my case, anecdata warning, it was caused by nose injury due to dry air 24/7 causing swelling inside the skull and impairing circulation combined with overall circulation problems, mainly neck tightness due to stress building up over time. It's now gone
No alcohol, more rest, more coffee with cinnamon, more sugar to help relaxation of muscles, more magnesium, b12,
extra water and salt, temporarily, to accommodate more fluid capacity of relaxed body and it's vessels
Eye movement. Eyeballs have a little opening at the back that acts as a drain for eyeball fluid, but it's only able to drain in "wall eyed" position for me, so looking at something very far away
Eyeball massage. Gently pressing down on your eyeballs with palm of hand or squeezing one's eyelids tight shut for few seconds repeatedly
That's... not normal? Like, not a huge amount normally but a faint overlay that's there if you look for it, and much more visible in low light?
What about edges, do people normally see them as having a kind of 'invisible glow'? It's hard to describe but they seem emphasized. I guess it looks a bit like ringing (in the signal processing sense, like https://en.wikipedia.org/wiki/Ringing_artifacts)
Wow, yeah that sounds annoying. I wouldn't characterize mine as 'bad', it's always been like that so it's just what things look like. It's not annoying and doesn't make it hard to function. I do get an interesting number of the listed associated symptoms (in small amounts), though. Photosensitivity, lens flares at night, tinnitus (not the hearing damage type, just a permanent high pitched hiss like an old CRT, basically sounds like what this looks like.)
I think it's common for people who develop this condition at an early age to assume that everyone perceives the world in the same way as they have no objective reference frame - a bit like those stories of people who grow up thinking bananas are spicy when in fact they're mildly allergic to them.
It may be that you have a mild version of VSS, or maybe your vision is atypical in some other way? The comparison with tinnitus is appropriate in the case of VSS, as I understand that it's theorised to be the visual equivalent.
That sounds severe and so unlike what I’ve experienced. But some amount of noise in vision is normal, you just don’t notice it unless you focus on it, or have a background that really makes it apparently. Light is inherently noisy. If you look at a blank sheet of paper and all you see is #FFFFFF, you’re not paying attention.
One theory I've heard is that we normally filter out the noise but in some people that's not happening and thus they experience VSS. Likewise for tinnitus.
All five senses have this static noise in background: they are mediated by a number of discretely activated neurons, and in case of light, the photons themselves are discrete.
This is very common in recreational polydrug users, particularly in users of dissociative anesthetic drugs and psychedelics. So if you do those, stop for good. The effect will slowly mitigate.
I'm reading this thread intently after a friend who was in a clinical trial for psilocybin went for a ketamine treatment only a few days later. She has that floaters and brain fog. She recently started on an epilepsy drug that seems to be helping
I'd say the first thing to do is go to a doctor and rule out any more serious cause of the visual phenomenon, e.g. MS, brain tumor, and so on.
If that's all clear, then you kind of have to just get used to it. Taking care of your overall health, like getting enough sleep, exercising, and eating well, seems to help people with their symptoms either directly or indirectly.
There are a few neuro-opthalmologists working on treatments that seem to produce some degree of improvement in patients.
Sometimes I get weirdly self-conscious because I can't tell the difference between merely perceiving entropy and having "visual show".
I can still see everything perfectly clearly. I can just also see entropy. Does that make it visual snow? Can I even describe the experience of "entropy" in a way that properly allows someone to tell whether what I'm describing counts as visual snow?
Although the condition is not well understood, I think the consensus of opinion is that the phenomenon is neural rather than opthalmic - i.e. perceptual in nature. If you are perceiving entropy in a similar way to the website I linked, it could be VSS (obviously you should consult a medical professional for a proper diagnosis though).
Isn't that... just entropy? At least, the default settings. Like... that's almost what I see (on the website it is greatly exaggerated). I see it because physically, light literally doesn't take the same path twice. Exact same reasons why path tracers take a long time to converge.
I can see solid colors and make out shapes (even very small shapes) easily. Nothing is obscured. The noise isn't obnoxious or distracting or annoying. Neurologically I smooth it out and perceive a world without noise. But it's there.
I would be more surprised if this is not a thing that happens to everyone. If someone can look at a surface, and see a completely solid color, with no sign of noise at all ever. With no entropy or anything. Completely and totally static and unchanging.
However you describe it, that's not how I experience vision, and as far as I know, not typical. If you've had this all your life then it's reasonable that you would assume everyone's vision works like that; maybe you could try using that website to compare your experiences with some friends and find out.
> If you've had this all your life then it's reasonable that you would assume everyone's vision works like that
I just can't possibly imagine vision that has zero noise at all. That can't be physically possible. Surely people who think their vision is completely 100% noise-free are just unable to tell that it's there? Or am I just crazy? I mean this is literally the same reason why photos taken by digital cameras have noise in them...
> maybe you could try using that website to compare your experiences with some friends
The website just isn't accurate to what I see for some reason. It's not nearly that obvious. It's just how solid colors are constructed. I'm fairly sure that everyone has this and just doesn't notice.
But... "fairly sure" isn't completely sure. I would be so surprised if I'm wrong, but I have no idea, honestly.
Only just saw this, sorry - you'll have to ask around I guess but no, I genuinely do not notice any noise in my vision even if I really concentrate, except possibly a little at night time. I think for most people, the noise is filtered out by the brain, but that's perceptively equivalent to a total absence, which is what I experience.
There other effects like persistence of vision - staring at anything for a long time will create strange visual artefacts but I don't think that's what you're referring to.
> no, I genuinely do not notice any noise in my vision even if I really concentrate, except possibly a little at night time. I think for most people, the noise is filtered out by the brain, but that's perceptively equivalent to a total absence, which is what I experience.
That's... really weird. For me it's everywhere all the time, especially in darkness. I filter it out... subconsciously, or something? but not perceptually. It never distracts and never obstructs but it's never just genuinely missing.
Could be caused by being autistic, I know autistic brains can be bad at filtering out stimuli.
> There other effects like persistence of vision - staring at anything for a long time will create strange visual artefacts but I don't think that's what you're referring to.
That's indeed not what I was referring to, but I do also get this.
If I stare at something even for as short as 10 seconds, and close my eyes, some "impression" of it will stick for a few seconds. Usually just the edges or vague layout of it, and faint enough that I don't notice it unless I try to trigger it on purpose, but it's there.
And if I stay perfectly still for long enough, everything will fade to grey until I move my eyes again.
Why would you want to heal it ? I have some heavy visual snow but it seems to disappear if I stop focusing on it. It seems like the grain of an old movie except that it doesn't seem to impair my ability to see details. kalm. I can of course focus on the snow and there is suddenly thousands of little rgb stars exploding everywhere and running along constrast lines. panik.
Could also be a Visual Migraine (a.k.a Retinal Migraine and Ocular Migraine). AFAIK it is theorized that Visual Snow Syndrome and Visual Migraine are related.
Reading this was like reading my biography with the exception of covid nose. I on the other hand gained better sense of smell after a routine gallbladder removal surgery. I smell some fragrances for hours or days after the person has left after just a brief interaction. I am smelling things I never smelled before.
I have pretty bad tinnitus, a very high pitched ringing seemingly coming from one ear. It seems to have gradually gotten worse and worse over the past few years.
It's kind of driving me crazy. I am normally the kind of person who likes to sit quietly thinking and listening to the wind.
I've been really busy with work, but one thing that's been keeping me going is a plan to go see some specialists about this when I have time.
If there is a way to cure it I would give up everything I own, all my money to do so. Even if I had to go deaf in one ear or something.
Your last paragraph doesn't compute for me, friend. This issue is so bad that you would give up everything to cure it, but you haven't seen someone yet because you're busy with work? What's the real priority then? Don't let healthcare be some sort of reward -- are you working to live or living to work.
Yeah I agree, but I know how to work and have been doing it every day for most of my life. I dunno how healthcare works and how to even begin this tinnitus investigation process. It's a domain knowledge thing, Its very easy to just keep doing what your doing no matter how much it sucks.
Also one thing I have picked up is that healthcare is extremely expensive. I said I'd give up all my possessions for a cure, but lets say there is a cure, I realistically may not have enough wealth to afford it. And food and shelter is actually a higher priority than the tinnitus.
I also have bad tinnitus in one ear, as well as hearing loss and occasional balance issues (Meniere's disease).
In my case, managing my blood sugar levels has probably been the most helpful thing. Specifically, I've started using sugar substitutes that don't spike my blood sugar, such as stevia, xylitol, and allulose, whenever feasible. I've also found that keeping a regular meal schedule (i.e. limiting snacks) and not overeating does a lot to keep my tinnitus in check.
Reducing your alcohol usage could help as well, as alcohol is known to be ototoxic. For me, red wine is probably the worst, as it dependably exacerbates my tinnitus.
If you're experiencing hearing loss as well, you might also consider reducing your sodium intake if it's above the suggested daily limit.
None of these solutions completely get rid of my tinnitus, but they do help keep it to manageable levels.
I've had hearing loss and really loud tinnitus in one ear for more than 40 years, after getting mumps as a teenager. But if I'm not thinking about my tinnitus, I simply don't notice it. As soon as I think about it, it's there, really loud, like high-pitch radio static on maximum volume. Over time my brain has become accustomed to separating real sounds from the tinnitus. I can still really appreciate a quiet place, despite the roaring static in my ear. I'm sure that it helped that my hearing damage happened when I was relatively young, and that it only affects one ear, but the brain is amazingly plastic, adapting to cope with your limitations.
It often gets better with time. You don’t notice your clothes on your skin right? Even though objectively you know that the clothes are touching your skin, your mind learns to tune that out. The best thing you can do is to preoccupy yourself with something else and let your mind do the work of learning to ignore it.
If you keep focusing on it then you are reinforcing the stimulus which makes it worse. And you get into a vicious cycle.
Perhaps unhelpful advice to follow but the best thing that helped me was getting a crazy girlfriend, my mind was so preoccupied with other things that I just forgot about the tinnitus.
Yes, at least some are. From personal experience I know that stiffness of the neck & back and, e.g., trigger points[0] can cause tinnitus, too. Fixing those has cured me of tinnitus various times. Though I should add that that neck issues and those trigger points will have a habit of coming back if you don't also fix your overall posture and balance spending hours in front of a screen with plenty of (back & neck) exercise.
I find momentary relief by opening audacity, generating a sine tone that is roughly the same frequency. Wear headphones and set the volume to sort of loud, play for roughly 5 seconds. This relieves my symptoms for a few seconds, after which they come back again (but weaker, and not as intrusive as before).
One of my most vivid memories of adolescence is walking back from the optometrist wearing my new glasses, after finally accepting that I can't continue to function without them.
The "senses conjure up phenomena that others can’t perceive" reminded me of stories I've seen of compass implants that give you some innate ability to know which way is north.
I'm skeptical about the actual devices that are available now, since they seem to come from a very fringe subculture. But, the general idea is pretty interesting. Whether that's a compass, or IR sensing, sounds out of normal human hearing range, or something else. Any sort of of additional sense you don't have already.
I'm curious about how well a device like that over time might get sort of "wired" in a way that it works on a subconscious level. That it would add a new signal that your brain would incorporate without you having to mentally consider it.
> compass implants that give you some innate ability to know which way is north.
This is one of the most fascinating things to me, just giving the brain extra senses by sending it signals that it just learns how to process. I love this. I want to do this.
I think some experiments have managed to create the experience of extra senses just by using things like a grid of electrodes on the back. And of course there is the "bio-hacking" phenomenon of implanting a tiny magnet in your fingertip, and suddenly you can learn to read electromagnetic fields. It's amazing.
I don't know how severe yours is, but I meditate and I either developed or started noticing mine; then I found out many many meditators have it too. It is possible to not notice it in your day to day unless I focus on it.
I’m not 100% sure, but I think systems like the one I linked to help you train your brain to react differently to the stimulus (or lack of stimulus) that may cause tinnitus. I really don’t know though and finding people who have tried the system is hard (I think they are mostly in Ireland).
There's another system being spun out of research from University of Michigan that seems similar but they seem to be very slow getting anything to market (which may be a good thing).
I empathize especially with the author's account of "covid nose." For me, Coca Cola now tastes like patchouli. When I say that out loud, it's easier for others to believe I'm simply a hypochondriac, or that I've forgotten what Coke tastes like, or possibly it's made differently where I'm from. As far as I can tell, it's nerve damage. How could I forget the taste of summer vacation?
Back when smell loss was a common side effect of Covid, the NYT ran a series of articles on retraining one's sense of smell, by e.g. smelling all the jars on the spice rack. I found those articles patronizing. I can instantly recall what both Ceylon and Korintje cinnamon are "supposed" to smell like, but those memories are now mismatched with my olfactory system. All I can do is decide whether to accept the new sense, or just avoid the taste altogether.
We don't discuss smell like we discuss our other senses. Perhaps it's due to the difficulty of producing smell on demand, unlike within the visual or auditory domains. Despite being one of our most basic senses, smell seems to lie behind an inherent veil of subjectivity. My experience with continuous olfactory "hallucination" made me second guess that.
> All I can do is decide whether to accept the new sense, or just avoid the taste altogether.
I've accepted that my sense of smell will never fully recover (been about 1.5 years now). It's not as bad as when I first got it, where things smelled really weird and chemically/burnt, some things are closer to what they used to be, but overall my sense of smell is greatly muted from what it used to be. Kinda sad since I used to think I had a pretty "refined" palate :)
If you get really good at meditating you can temporarily cancel out tinnitus. Well, the input still appears to be there, but you can shift it outside of your awareness. Have you ever tried using tinnitus as a meditative anchor?
My strategy for dealing with tinnitus is to just listen to it, and imagine it’s coming from a machine in the corner of the room. It’s interesting that when I get a stuffy nose, I can do this and my sinuses clear up.
I suspect you have the common misconception about how hearing loss works. Impared hearing doesn't mean the volume is turned down and needs to be increased. Often times, impared hearing means you can hear some frequencies perfectly fine, but are deaf to some frequencies (usually higher frequencies)
If you are missing hair cells in your ear for a certain frequency, hearing aids can't make you hear them no matter how much they increase the volume for those frequencies. Best they can do is pitch shift them so you hear them at a different frequency.
I suppose I was unclear, i ment in the article they mention some breathing techniques to try to help hearing... But i was curious if any other steps were taken? And if they helped whatsoever.
I asked because their brief discussion on vision quality was " i lied to my doctor as a kid, and in my 30s got eye surgery that was scary and messed with my perceptions!"..... Yet they seemed to skip just using plain old glasses to aide their vision throughout their formative years or even young adult years .... Or maybe that was just a narrative omission.
I was born premature at 2 lbs which caused retinopathy of prematurity. I've used glasses since age 2 and my eyes are prone to complications; having just had cataract surgery in my early 40s .... It seemed to me from the writing the author has an aversion to doctors throughout their life and seeking informed treatment ... But maybe I read the piece wrong...
If they were able to, the author wouldn't have written this article, or would've added it at least.
Tinnitus is a challenging problem because there can be physical causes (like hearing damage from loud music) but there's also a brain component. Certain diseases like MS, concussions, or some types of brain diseases can cause it even if your hearing organs are perfectly fine.
It's possible the author has had damaged hearing from a very young age but based on the wide variety of sounds they're describing, I'm guessing there's more going on than just ear issues. It's possible that these noises are just strange hallucinations of the auditory cortex, like someone hearing voices or sounds that aren't there but expressed less concretely.
As anecdata: an acquaintance of mine was cured of his tinnitus when he got therapy and made life changes to benefit his mental health. It turned out stress and other such problems were causing his hearing issues all along!
As far as I know, there is no known cure to tinnitus as bad as this article describes. In some cases the problematic symptoms can be reduced (people sleeping with a fan on or some white noise generator running to reduce the ringing of the ears is a common example) but the symptoms often come back soon after turning off the noise.
I think one of the best treatments for tinnitus is, not experimental drugs, nor surgeries, but a book: Marcus Aurelius's Meditations. Stoicism.
I have tinnitus. It's particularly bad in one ear at the moment. It's not ideal. Not pleasant. But I get over it, and I continue living my life. What's strange is, practically every time I've seen someone bring up their experience with tinnitus, it's accompanied with a deluge of whining and commiserating. It's weird because there are far more grave medical conditions that I don't think have even a fraction of the commiserating and depressiveness that tinnitus sufferers have.
So, as a tinnitus "sufferer", that's my personal recommendation: Stoicism. Deal with it and move on.
have you considered the possibility that other people have a more severe form of tinnitus than you.
besides, putting suffering in scare quotes -- i.e. macho posturing where you pretend the suffering is not real -- is not what stoicism is about at all.
Doing this has been what I feel is my greatest accomplishment. You know, thoughts are a sense. You sense thoughts like you sense sounds. You do not think thought, that is just an illusion of the ego. You are not the thinker!
Once I understood this my life became so much easier. Nothing is reality to me anymore, everything is a loosely coordinated social hallucination. So when I see birds flying the corner of my room it makes sense, and I enjoy them. When I see a cat walk across the coffee shop I get to enjoy something no one else can. When I hear peoples thoughts and they are telling me they can read mine I open myself up to them and share my darkest secrets.
We should all realize that our senses are a shared hallucination. It might help solve a lot of problems in the world.