Distorted Reality - does it eat you up?

I haven't heard normal voices (hallucinations) for weeks now. Only the whispering voices and indistinct music playing somewhere else in the room. What I experience most are visual distortions. The world around me looks like an impressionist painting with smudged bits and bleeding, altered colours. The walls don't keep a constant distance, but shift and move. I get sensations of vast openness in my room, yet at other times it feels cramped and oppressive. Visual hallucinations just fit right in with it, they don't even seem out of place.

I have very little confidence in my perception of reality - of what other people really mean or think, or what is safe to say. I struggle to communicate clearly too, so I have been keeping quiet on PC and avoiding social groups.

Does anyone else find these experiences have this sort of impact on them?

Tsunamisurfer,

You said, "Only the whispering voices and indistinct music playing somewhere else in the room. What I experience most are visual distortions." Thats exactly where I am at now. Thanks for sharing. At least I know I'm not alone.

I think you communicated here, really well. I'm sorry you are currently having so much difficulty though. I hope it gets better soon or your doctor(s) can help.

My visual hallucinations where different. I once saw a ghost like image shoot out of a nurses face when I was in the hospital. I never experience "smudged bits and bleeding, altered colours" or anything like that.

As for auditory hallucinations mine where always voices but when I was in a mental health centre there was a guy there that heard buzzing noise.

I hope you find a medication that helps. I couldn't image my life with it.

Tsunamisurfer: My understanding is that this experience isn't uncommon. It must be very distressing not to trust your perceptions.

When Will Hall interviews Pat Deegan, for example, she mentions that her psychosis started with perceptual changes - specifically visual. She says she was out on the basketball court, and she suddenly lost her depth perception (which would be frightening with basketballs flying all around you! ).

My son has mentioned odd visual perceptual problems, but they seem to have to do with the reduction of his medication dosage. He didn't have these problems before he took medication.

I read somewhere (Origins of Mental Illness by Claridge?) that part of psychosis is this perceptual change, but there's a secondary part which is the brain's way of trying to make sense of the odd perceptions. One of my son's things, for example, is that letters and numbers will suddenly appear very sharp and will "leap out" at him. When this happens he says he feels like there is some hidden message he's supposed to figure out. So, maybe the visual distortion is some kind of purely physiological thing, but the idea that there's significance or meaning in that distortion is just the brain's way of figuring out why the numbers and letters have suddenly jumped out.

It's odd the kinds of things the brain will do in order to make sense of the world. I mentioned yesterday that I'm reading a book by a neuroscientist. He tells a story of a woman who had a stroke. When she was asked to close her eyes, she could only close one because she no longer had control of the other eyelid. If you asked her, she would say that she had closed both eyes. Finally one doctor held up three fingers and asked how many fingers he was holding up. When she told him three, he asked how she could know this if her eyes were closed. She simply didn't answer. Her brain just locked up, because it couldn't sort out the contradiction: my eyes are closed and yet I can see.

the meds I take mess with my depth perception now and then. could be the meds your on

Thanks so much everyone for your input. I really appreciate it.

I should probably clarify this: I do have visual hallucinations, but the visual distortions I refer to above would probably not be classified as hallucinations because what I am seeing is actually there. I suspect it may be described as derealisation because I experience it as unreal. I feel like I'm in a dream or not really there. That makes it difficult for me to be sure whether something is genuinely happening or whether I'm hallucinating. I'll often ask one of my kids if they also heard a noise or saw something happen. Most of the time they confirm that it's real, but that they didn't sound or appear strange.

I came off antipsychotics a month ago. (I'm convinced that stuff was poison!!!) I may still be a bit paranoid, but physiologically I feel a whole lot better.

Like your son, Costello, the perceptual experiences have been while coming off antipsychotics, but they also preceded the start of hallucinations and delusions by several months.

This fits with what my son has described, and I've suspected derealization for him too.

The wikipedia article describes it this way:

"Derealization (sometimes abbreviated as DR) is an alteration in the perception or experience of the external world so that it seems strange or unreal. Other symptoms include feeling as though one's environment is lacking in spontaneity, emotional coloring and depth.It is a dissociative symptom of many conditions, such as psychiatric and neurological disorders, and not a standalone disorder. It is also a transient side effect of acute drug intoxication, sleep deprivation, and stress." (The whole wikipedia article is good btw.)

I've had the experience myself, if only for a few seconds at a time. I've always attributed it to lack of sleep and/or strong emotions. I can imagine that it would be extremely distressing to have it last for more that a brief time.

That was what I was wondering.

Here are my thoughts for what they're worth, and they're a hodge-podge, so take anything that's useful and leave the rest.

1. Time is a great healer. The only certainty in life is that everything changes, and I strongly believe that your body wants to move toward health and it often will if you just leave it alone.

I used to have terrible low back troubles. It started when I gave birth at 23 and got worse from hauling the little tyke and his paraphenelia around. I remember the time when I lifted my son, his stroller and all his assorted necessaries and carried him up a flight of steps. At the top I leaned over, set the stroller down, and then ... I couldn't stand up again! It didn't hurt; I just couldn't stand up. I had to sit down on the step and try to work out what I was going to do about this new development. (While I sat there, the spasm eased, and I could go on.). That began over 2 decades of back troubles and pain. Then one day a couple of years ago I realized that I hadn't had a back ache in ages. I'm still pain free. So what did I do to solve the problem? Nothing. I went about my life despite the pain and the frickin' inconvenience of walking like an elderly woman half the time. And it went away.

Sometimes things just get better. We've all experienced this. I don't know why we think mental illness is any different.

And sometimes things don't get better. But even here time is your friend, because given enough time people can adjust to anything. People adjust to such horrors as living in a refuge camp or being a quadruplegic. What was awful at first becomes the new normal. That doesn't necessarily mean they like it, but they accept it and move on the best they can.

2. Marsha Linehan's idea of radical acceptance can help. I once watched a video of Marsha Linehan herself explaining radical acceptance. She described it so beautifully. I know I can't do it justice, but I'll try.

When you're confronted with something you don't like, that causes you pain, you have four choices. You can fix it. You can change the way you think about it. You can accept it. Or you can continue to suffer. Pain is the negative thing that's happened to you, and it's unavoidable. We all have some pain in our lives. Suffering is how you react to the pain, and it's a choice.

So if you can't fix this problem you're having, and you can't find a way of thinking about it that makes it a good thing, and you don't want to continue suffering, you must accept it. Accepting it doesn't mean you like it or approve of it, it just means you aren't going to rail against it anymore.

I've never found anything on the Internet that does as good a job of describing radical acceptance as that first video I watched, but this at least sums it up accurately: http://dbttherapy.com/dbt-radical-acceptance.html

3. I've noticed that what happens to me isn't as important as what I tell myself about what has happened to me. We all come up with stories about ourselves and our lives. They aren't necessarily true, but we believe our stories as if they're reality. I've found that if I can change the story - or at least challenge it - I may make myself feel better about a given situation.

Narratives in which you're the victim or helpless in the face of your trouble will tend to weaken you. I'm a single mother, for example. I've never been married. I have two sons, one biological and one adopted. When my older (bio) son was very young, I fell into the role of single mom. That's how I saw myself - part hero, part pathetic victim. Finally I realized that viewing myself this way wasn't helpful. I would feel sorry for myself and think, "How can that person do that to me? I'm a poor single mother." I had to reject that role. It's true I'm a single mother, and it's true that that makes some things very much harder, but taking that as my identity was limiting me. It was hard to shake off that persona, because other people would invite me to step back into it. They would tell me how "brave" I was or comment on how hard it must be. Also there are programs and scholarships for single mothers. There are pluses to accepting that role. But I've learned to be matter-of-fact about it - "Yep, I'm a single mom" - and move on.

One benefit of finding a positive way of explaining this perceptual problem to yourself is that it will likely ease your stress over the situation. And easing your stress will likely decrease the frequency and intensity of the experience. In other words, stressing about it probably makes it worse.

********

Note: Now that I re-read what I've written, I see that it isn't a "hodge podge" as I said earlier. It's all of a piece, and it's my general approach to any crap life throws at me: wait and see; learn to live with it and get on with your life; tell yourself a different story about it.

Also I hope it doesn't sound like I'm lecturing or minimizing the problem. That certainly isn't my intent.

Also from the wikipedia article on derealization:

I point it out, because my son associates these experiences with panic attacks, almost like a prelude or warning. In fact, the few times the panic attack didn't follow the perceptual changes he was surprised and relieved.

Do you have panic or anxiety along with it?

I've also seen the avoidant behavior. He's mentioned being afraid to leave the house for fear having an attack. I've had to insist he go out anyway. I don't want his world to grow smaller because he's afraid something bad might happen.

I don't think I've ever experienced the physical symptoms of a panic attack. But I am often anxious, I guess. I have a constant barrage of distressing thoughts I don't want to think about day and night. I suppose it could be what is setting the scene for derealisation.

The funny thing is I also get these unreal experiences when I don't feel anxious.

I hear a hum and usually see a man wondering about. Most of the time it's just his silhouette and he stretches and moves around making a loud hum that sounds like a room full of people talking at a distance. Sometimes the rooms in my house seem to change shape in length or height. It's really difficult to deal with because it almost feels like you're always asleep and dreaming these things. I get really angry and anxious when the noises start to be a knocking or one voice is clearer than the rest. I'm not sure how others cope with this, so any advice is much appreciated. I hope my experiences also help you feel you're not alone..

I've been experiencing these perceptual distortions for years now & I only found out through this thread what it was called... I've never seen a full bodied visual hallucination, but I see sort of "silhouette clouds" of people's bodies along the walls or I misinterpret shadows that are already there as being something else. Frequently, I hear noises differently than someone else & from different directions EX: My boyfriend & I were sitting in the livingroom. I thought I heard that noise from "the Grudge" right up against my ear, meanwhile the actual noise was someone mowing their lawn downstairs. I live on the 17th floor. And also, I see the walls pulsating or rotating a lot. Sometimes this makes me, as a result, very dizzy & panicky. I'm just glad I'm not the only one...

I hope this doesn't happen very often to you. It's very distracting. I find I go to pieces when this happens, and I can't work.

Do you find these perceptual distortions occur only when you are experiencing some major stress or episode, or do they happen any time, even when you are feeling healthy?

Here's why I ask.
Today I felt free of depression and psychosis. I have been enthusiastic, chased the dog around the garden for fun, sang and whistled. Looking very promising. In fact, I'm almost sure this illness has been a hoax - a bad joke played on me by some kind of hypnotist.

My wife and I visited an art gallery today. I came across a painting of what looked like a dark monster enveloping an unsuspecting and defenceless naked woman in its evil grip. I was horrified and filled with revulsion and fear. When I showed it to my wife, she pointed out that it was a painting of a nude holding some dark fabric as a simple drape around her. Despite being able to see what she explained, I still feel that the monster image is stronger and I have difficulty seeing the drape. A sign that I am still not free of my damaged mind?

Personally I don't think your mind is damaged.

[For some reason I accidently call you 'Tsunamimaster' when I mention you to my son. I'm utterly confident you can master the tsunami. ]

Thanks for your encouragement, Costello. It means so much.

Tsunami: I was going to message you back last night, but it actually got REALLY bad. Like, the worst it's ever been. I just took my pain medication early in the day & evidently it triggered me into severe psychotic mania.
During the day, I felt the most normal I've been in months. Optimistic, but not overly so, & finally out of the depression I had suffered for 2 weeks now. Then, as soon as night fell & my boyfriend woke up (& I have NEVER had "hallucinations" in front of him before), it all started in.
Perceptory distortions as well as true hallucinations. The lightbulb's buzzing sounded like a bee was in the house & I spent 10 minutes looking for it & cowering. It sounded like there was a train speeding through my head & another time like there was a bull stomping & snorting behind me (the bull was actually the coffee pot). I layed down on the couch, but I saw shadows around me & felt like I was on an operating table...
It was also the first time I've ever had really paranoid delusions, as well. I'm up on the 17th floor of a building, but for some reason, I was convinced that people could see right through the windows at what I was doing & criticize me. I felt like I was in serious danger. And for some reason, I had this pervasive fear that I was going to choke on my tongue & die in my sleep.
All of that happened in the same half hour. I had to take a Benadryl, lay down in bed, & put some music on to get me to sleep as soon as possible. Jesus. But all is well today, thus far, & at least the medication worked to keep my pain away today.

Shay, its sounds like a really nasty experience. I'm glad you managed to get it subdued quickly. I hope this sort of thing doesn't creep up on you too much in the future.

My son takes Benadryl for this problem. He insists it helps him. In fact he would od on Benadryl if I didn't control it. I just leave 4 pills when I leave the house in the morning and take the bottle with me.

Take care of yourself.

Thank you Tsunami. I've been feeling chronically weird since, so I'll be keeping a close eye to see if there are any warning signs. Have you been okay??

A single Benadryl will knock me out in less than 30 minutes! So that's why I take it to get to sleep... Not to mention sometimes my hallucinations are compounded by my vertigo & antihistamines help the dizziness. Hope your son takes care of himself & hope you're doing well!! : )

Isn't that weird. For a while my son was taking 20 to 22 Benadryl a day, and it didn't make him sleepy at all. Of course, he started seeing colored spots before his eyes but he wasn't sleepy!

EEK! I can't imagine taking more than 20 of something unless it's something like... Idk, rice? Hahahaha perhaps the delirium of Benadryl made him forget the issues ailing him! It's generally not a good thing when an antihistamine makes you wide awake vs. sleepy. It says so on the box :P

Yeah. It was pretty scary when I realized how many he'd taken. The psychiatric nurse was alarmed and told me to call poison control. The poison control guy was almost scolding me, saying he was going to kill himself with the Benadryl if we didn't do something. That's why I'm the gatekeeper. Usually I leave 4 on top of the microwave when I leave the house in the morning. That's his limit for the day. I noticed when I got home last night that he hadn't taken the four I left yesterday. So it seems like as the dosage of the Zyprexa goes down, he doesn't need it. I think somehow the Benadryl was counteracting the side effects of the Zyprexa?

Hmm!! That would be something interesting to ask a pharmacist or a doctor about. While I don't understand how histamine receptors affect psychosis, it does say on the Olanzapine wiki page that it does affect histamine levels. So perhaps the antihistamine prevents some negative side effects associated with that particular neurotransmitter??
How's he doing going off of his medication btw?

He lowered his dose to 10 mg (from 15 mg) Monday. So far so good on the new dose.

His pdoc hates Zyprexa. At our first visit with him he said that he had a few patients who take a very small dose, 2.5 or 5 mg. So I suspect he's anticipating settling my son at one of them doses. My son, however, is determined to get off the meds completely. We'll see what happens.

I have to admit to being a bit fearful, but so far he's actually improved with each reduction. He seems a lot happier and more relaxed. His therapist commented on it at their last visit.

He says the pdoc talked about lowering his dose to 7.5 mg next month if things go well with this reduction.

Perhaps at a lower dose, he'll feel better about being on the meds & opt to stay on them. Your other post indicates he realizes the trouble he could get himself into off of the meds, so... That's really good that he realizes the danger he could pose to himself. That realization is definitely of sane mind & I think will lead to more recovery than meds. But... Best of luck, really! He deserves to be happy & relaxed, meanwhile relieved of his psychosis. I'd like to be relieved, but I'd also like not to be a zombie, so I'm searching for my own balance.