Hi I have written many posts on this topic and now finally I know what the last fragment is.
'Bright pulsing lights woke me up one night.' A stream of yellow plasma clouds flowed through my head and picked up my consciousness and took it on a hyper-sonic journey into the cosmos. I found myself looking over the edge of infinity, into the pure lucid blackness of everything. 'Shit, I'm dead, I thought and here I am on the next journey. Oh well, seems ok'. A grid-work of yellow squiggles formed and contorted into impossible geometrical shapes, red dots interlinked and.......'
I've asked doctors, neurologists and a neuro-psychologist about this condition and the looks I've had from them could send you to the psyche ward. I've sent e.mails to 'experts' all over the world and have had no reply. So I started searching the literature myself and came up with the closest description matching the symptoms - Hypnagogia. The place where consciousness lays between awake and sleep. A place where you can 'see' and fully experience your dreams, delve into your own sub-conscious and the characters that depict the facets of your multi personality traits. I'ts a place of madness, pure terror, stunning beauty and fascination and anything you can possibly imagine and so much more. Take a journey and fly around planet earth through rainbow clouds and into the streets of cities and watch the people walk by, sometimes one will look back at you and know what you are.
So you can see why the doctors etc thought I was going mad. So last week a researcher into lucid dream states and consciousness replied very quickly to an e.mail I sent. She was fascinated by my story and put me in touch with some scientists that are interested in this field. So after a bit of a back and fore they all agreed that this was indeed the Hypnagogic state. They seemed even more fascinated that I can induce it at will, all I have to do is relax and bang. Anyway they have asked if I could write an article for a web site 'lucid-dream-research.com'.
I feel a bit sad and mad because no one believed me about this and the 'external (visual processing dysfunction) hallucinatory' states. These on top of the cognitive issues, jeez, it was all so freaky in the first 14 months until I got my glasses that 'cured' the worse of the external visual problems. An LSD trip on steroids.
So I'm not mad at all, I think?
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pinkvision
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It's such a relief isn't it Pink when your 'weird' symptoms get an official label. I had an issue with peripheral hallucinations (post migraine) last year and really, really feared for my sanity.
I know your issues have been a problem for over two years, so I do sympathise. I only had a three month wait before being assured by my opthalmologist that my issue was fairly rare but not unique (my GP hadn't a clue) …….so, as with you, it was a massive relief to know it was neurological and not a mental health problem.
Well done for your perseverance...……...and good luck with your article.... Cat x
‘LSD trip on steroids.’ You are not mad, there is a neurological basis for these phenomena. I have experienced this a number of times (visual and auditory hallucinations) when under extreme stress and fatigue.
Hi, thanks it has all been very complicated and stress will probably play a part and I think minor. There are a number of different visual elements to the whole topic of visual weirdness. I had blurred vision which passed after a few months, with this was pattern glare, where anything that had a pattern just moved about like an optical illusion, I was tested and prescribed coloured lenses that stopped it instantly and helped to steady many things, then on top of that there was horizontal shift, I still have it but I don't tend to look to closely at things now. Then light sensitivity, at first to all light then over 2 years seems to have reduced to really bright sunlight, LED lights and fluorescent light, these cause my body to go into the physical process of a panic attack and cause fainting and blackouts. My 3D vision was gone, it's back now though and also my spacial awareness was bad, it's pretty good now. I had 'Alice in wonderland syndrome' which was probably a combination of the various visual issues. So basically these are all separate visual issues and I have chased them down one by one and dealt with most of them. The one I'm writing about in this post is internal visual and it's a lucid dream like quality, that's realer than real. A phenomenal experience that makes you question your very being, it's terrifying and stunningly beautiful at the same time. The closest description that I can find is the DMT experience, the so called spirit molecule experience. I have found some good people that share the interest in this experience and they are helping me understand it. So hopefully I'll get that under control soon. There's plenty of brain scan material available. The mechanism that causes mine is called hypnagogia, it's natural and not uncommon, it's part of narcolepsy. Oddly I am an excessive sleeper but I'm not narcoleptic which is a genetically inherited trait that causes an auto-immune response.
So the last hurdle is jumped and now I'm waiting to land. The optometrist, non doctor, private, was the only person I saw that had any ideas at all. I have found recently the only NHS department that deal with 'Visual Perceptual Disturbances', it's a long way away in London. My health authority may hopefully pay but then again???
yes, have got there more or less now, I suppose the hardest thing, was that no one believed me, so I had to search it all out myself. How's it going with you and your visual weirdness
The tinted glasses have helped with some things. I csn now watch a little tv. The use of them in artificial light around the house on these dark evenings hit and miss. So tend to be in a very dim room from about 6pm.
My noise sensitivity is less which is good.
As for pattern glare the glasses lessen my physical response.
So still experimenting with the use of them. The profs, have asked for updates and given me a few hints like to use them when room not too dimly lit. Also to try snd read next. I prefer my ckear gkasses for thus phone. Maybe because it has a blue cut out on it.
I was sorting my clothes to get rid of patterns and stripes. I woke that night with a headache . That was a Shane as u had a low wattage halogen bulb in with an enclosed shade with my tinted glasses on. Was a headache and not a nasty migrain sort
I've had a shift as in less headaches. Scalp and head nerve pain mainly when using my eyes. Still stagger walk and have pains at the back of s lmy head as a reaction to shop/surgery lights. Have had another brain and upper neck MRI. Neurologist said noting 'sinister ' going on. Of course that is great.
He had no explanation for current symptoms. He annoyed me by saying in letter to go to treat me for anxiety. I'm treating the shift ad positive. Still a long way to go.
Thanks for asking
Never a short answer.
You have done so well with all your reserch a d eventually getting believed.
I so hate that blank expression medics give you if they don't understand and then send you down the mental health route.
I'm on B12 injections and pain relief when needed so nothing heavy to confuse things.
Hi, it sounds desperate to me, I remember those feelings. Vision treatment in this country is a disgrace. Ok I'll be straight with you, I don't think you are helping yourself either, I don't mean to be rude or hard on you but I have been through this and have come through mostly. You need to stop watching TV and reading. Your visual processing just can't deal with it and you will never recover unless you give it a chance to. I lived in the dark mostly and went out at night for a wander.
It's so hard doing this, you have to basically put yourself into solitary confinement, in the dark. So how do you stop going insane? you may ask. (What are you like outdoors?)
I found that I had to accept myself as a consciousness trapped inside a body. I have senses to see, hear, touch, taste and smell. My seeing sense was damaged and life somehow had to go on. Temporarily losing a sense is not bad, it's the adjustment that's difficult. You need to find something to occupy your mind while your vision heals, and it will.
I was lucky I suppose because I had an excessive sleep problem, at least 18 hours a day for the first 6 months or so. I occupied my mind by searching out the mechanisms of brain injury and how to solve the problems. So I went onto youtube and found the good brain injury coaches and sites that dealt with the subject. I have a biochemistry background and understand many of the concepts discussed in relation to neuroscience etc and basically learnt and applied what I learned to fix myself.
Sorry that's about me, we need to try and get you to accept that you have these visual issues and you have to learn to deal with them so you can recover. Somehow you have to stay away from all the activities that cause a problem but that means changing your life to do it. No TV, no reading, no LED lights, no bright sunlight etc, you will know what causes the problems. Accept yourself and the situation and develop a new you and a new life. Rather than TV have you got access to talking books, it's amazing how you can relax to a talking book and your imagination just plays the scenes out in your mind. Then there are pod casts that are also amazing, listen to topics or life experiences or anything you can think of. Then there are the lecture series on youtube, basically any subject you can think of is there and so many more you have never imagined existed. Keep a pile of paper and pens and write down your thoughts. Let your imagination run wild, free yourself up any you will become a new person.
There's no harm in trying.
Another thing you said about the headaches and head tension, I still get this if I get too much light. Anything that brings this on avoid, I think it was the TV. My head was gripped in a vice for 14 months but when I got my glasses it dissapeared overnight, it came back in certain senarios, I just avoid them and don't get them. So adjust to environments that suit you.
Please try something, I know it's so hard but once you get into a routine it gets better and soon you will forget the previous you and go on living.
The important thing is accepting yourself and the situation, then understanding the situation.
I'm sorry if this comes across wrong, but I seem to have got to know you and I really feel for you and I know you can get out of it, I really do. Please just have a little think about it.
I've not watched tv for 10 months. I just thought it was time to try things. I only read on this small mobile. Day light has never been a problem. It's always been artificisl lights.
All florescent and led lights have been removed from the house. I'm using the lights and a small lamp concealed in a corner.
I can't use the landline or indeed talk much on a mobile either. I can't tolerate audio books (last time I tried) I can't listen to anything on u tube phone? ?
Thank you for your thoughts.
I'm definitely staying with staying in the dark in the evenings which are si long at prevent. I will certainly think about stopping tv again. The tinted glasses have let me watch 30 mins every few days. I've really had to be disciplined with this. Have or recorded programmes si i can pick it up again.
I go to bed hideously early so awake in the dark again and gently ease into light.
I feel I'm making progress about very slowly.
I'm very practical and do try to give with the flow. Yrs get very frustrated at tines as don't travel on a bus or train yet. I've lived mainly within 2 miles. Apart from orthoptics trip twice.
I'm treating light like an allergen with increasing exposure.
I've had vise like head ongoing but that although there is much improved but still daily and you ate right thst it is worse with artificisl lights.
I only go on to food shops with dark glasses and a big hat.
Talking can bring on headaches! !
I am /was a talker.I remove myself which I find very hard as mostly socially isolated.
Byou you writing this though I will stay disciplined as I know it's slow slow and steady.
Must find more pysio to do as stick in a room in get so achey all over as not able to move /walk enough.
I like the outdoors and fortunate to have a garden. I did try walking on grass with bard feet. Couldn't di it fot long though. I have stopped thst. As for walking at night I csnt bear the car lights so walk in the day .
What a to do!!
I do chant of am improving every day and I will get better
Good I'm glad you have recognised the visual elements but from what you say you seem to have talking/hearing problems, is it a problem with both? is the talking problem different from the hearing, or is it a problem with the hearing only and the situation is uncomfortable so you don't talk. I had/have an issue with noise/speech but I think 3 things are involved, the processing of sound itself, (it is strangely an issue with vision also), verbal memory and holding attention/concentration. Have you been seen by the ENT (Ear Nose Throat) department, it may help. A neurologist recommended this for me but my GP did'nt make the referral, so I don't know how it would work for you.
Sorry I pictured you as I saw myself from your comment earlier, It was such a desperate time and I felt the dread of being like like again and thought you were living that nightmare. I feel quite jealous that you can go outside in the daylight, that was the thing that beat me down, the outside world disappeared. Oh dear I don't want to think about it.
Glad you have got a grip with it and yes it takes time.
Talking ,some noises like paper or plastic unwrapping,taking lids off jars, cutlery on plates , doors shutting,telephone ringing. All still a problem but pain not nearly as bad now . Electric shocks uo the back of my head and Sizzling in my head. Numbness snuffly nose . Irritable. Vibrations in my mouth. Now know all nucha muscles and nerve pain. Thrn a headache/migrain. The old boiler pump become part of my illness and the noise still in my head at times. As is the sound of a fan in that heat. Pump now replaced!!
Right at the beginning when I had virtigo I asked ti be referred to ENT . The doctor refused as I'd not taken the first line of treatment medication. It was for nausea. At that time I wasn't sick or had nausea?? I had vestibular pysio I paid for to try and stop it and get walking. I did 3 Epley manouvres at home as the one on the surgery didn't work. CT scan and brain mri.
This was all before b12 defiency found.
I forgot about asking for that and didn't pursue it. Never saw that doctor again. Fortunately 4 others in practice.
Thar must've been awful not being able to tolerate daylight. I initially wasn't strong enough or enough balance ti sit in the garden
But when I could it was a breakthrough. I started by walking uo and down the garden without having to hold on to anything.
Like you it's horrible to think back and must think forward.
TIME is a healer . I do feel like I'm 'waking up' but are present going through the motion s of living.
Boy do we take health for granted when we have it.
I've had conflicting thoughts from 3 neurologists.
PCS and variant migrains seen 4 Months in .light sensitivity part of migrain
A mixture of post concussion and b12 nerve damage. 2 months in
Every thing b12 related and not migrains but ongoing chronic headaches spasms (nuchal muscles) but that was the last one and a shift had happened. 9 months in and 13 months in. No reason given for light sensitivity
Hope you continue to move forwards to enjoy life agsin
Hi did you have the B12 deficiency before, I have come across B12 deficiency affecting vision however it was related to a failure of the intestines to uptake the B12. There is confusion about the B12 issue in regards to brain injury, You are probably a guinea pig as part of a wide study. Gut problems are an issue after head injury and is related to the para sympathetic and sympathetic system, this seems to be affected by stress and anxiety and panic attacks. My stomach was bad because in LED light I get the panic resonse that affects the sympathetic system, blood is pulled from the stomach/intestines (readying for fight or flight) acid builds up and burns out the duodenum (ulcers), causes a sliding hiatus hernia.
No I had several falls . One nasty fall hitting my head on concrete. I imagine it was the Undiagnosed b12 defiency. I was so tired and also had an enormous amount of stess for a few years. Too much happened in one weekend. I collapsed in the garden being pulled ti the right by a force. Couldn't get uo si crawled indoors. Then had virtigo for the first time in my life.
Horrible neurological symptoms. Being thrown back . Vision really down. Headaches ect. A and e first a ct incase of bleed from falls. Told I was having a panic attack. !
Back to Go. Bloods done . B12 106 (200-900) injections s started. Then nearly stopped as I was getting worse. Previously on no medication. Cycled walked went swimming.
Fatigue I put down to too much going on and the menopause. Big big mistake. Several opportunitit's missed to test b12.
Chicken and egg.
One doctor saud b12 low a red herring. One doctor said all B12 related? ??
I don't think I will ever know.
I've had concussion before. Some things very similar but I was only 10. Scalp sensitivity being one ofor them and severe loss of weight.
But then on the PA forum all sorts of neuro tints happen .
I've not had gut problems.
Mostly head . Pain. After virtigo. Fatigue and body spasms and aches and weakness . Exhaustion at one point heavy legs planted to the ground suddenly falling asleep with littke warning g. . The list goes on.
My eyes are healthy so can only be nerve neuron messages. Occipital neuralgia describes what went on . And some of what I have now. Thankfully in a diluted fOrmskirk
I sway from what has caused it frequentry
I'm still shocked it happened and ive lost a year so far. Akso shocked from those aroundays me.
I've always been the 'carer' broth taker.
I've just remembered my guts did show symptoms at the start.
Mustard poo whatever I ate. I thought iron really relevant but doctors not interested . I thought the day it returned to normal I was cured lol . Another shift but not cured.
Sorry ti be so basic. My mind is racing. I will stop now.
I have come out of thst horrible place but alot further to go.
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Stroke that caused brain hemorrhage, 22 days & still not fully conscious. 
Astonishing improvement after almost 3 years
