Navigating the world when your senses conjure up phenomena others can’t perceive
theamericanscholar.org
theamericanscholar.org
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.
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 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 :(
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
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 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.
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.
It feels so claustrophobic. I'm so jealous...
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.
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.
Oh well~
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.
This is a wonderfully simple, profound insight. Thanks for sharing it :)
They have been telling me that all my life. What is your point?
"Schizoaffective disorder and Bipolar Disorder are two separate but similar disorders"
Yes, and Schizoaffective Disorder Bipolar Type is it's own thing.
A Misdiagnosed Case of Schizoaffective Disorder With Bipolar Manifestations https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8394638/
What's your point?
There is a relation to them all, some of us do not fit into neat little diagnostic packages. Actually, most of us do.
https://academic.oup.com/schizophreniabulletin/article/40/3/...
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).
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".
> 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.
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 :)
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.
But milk by itself is just undrinkable.
:(
> I can put any flavoring like vanilla or strawberry in the milk and it'll be perfectly fine.
Could you use this to train yourself to taste milk normally again?
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
we're not supposed to talk about those.
So far no idea what to do about it though - has anyone here come across this before?
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
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)
There's more information here so you can get an idea what I'm talking about: https://visualsnowsyndrome.com/
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.
If it hasn't bothered you so far, don't let it bother you now.
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.
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?
Hm.
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.
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.
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... 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.
But both of these have no effects on the noise.
It's also not the only symptom, there's light trails, strong after images, very noticeable floaters and BFEP.
Like basically more intense versions of visual phenomena that most people experience but it's persistent.
For what it's worth, it doesn't really bother me anymore but developing it or noticing it for the first time can be hard for people.
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.
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.
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.
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.
[0]: https://www.painscience.com/tutorials/trigger-points.php
This is how I feel every time I replace an old set of scratched up lenses!
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.
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.
For a while I was following the development of the drug FX-322 and was really disappointed when it failed in trials.
Does anybody here know anything about https://www.lenire.com/? I’m on their waiting list for the US and am hopeful.
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).
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.
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 :)
This reminds me of that quote mocking old timey doctors "You've got ghosts in your blood and should do cocaine to fix it."
(the mistake of the solipsists is the assumption that they themselves are real)
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...
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 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.
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.