Dark nights starting. Really hoped I'd cope with more artificial lighting this year.
Anyone get this ? Any treatments?
Or if thay had It did it how many years did it take to improve ?
Still waiting for neuro opthalomogist appointment to see if they have any answers for ongoing 'head problems'
Inject daily. That's what I would do. It won't hurt you.
I'm recovering from a 'reaction' to my last injection 2 days ago. Had this once badly before in March.
I dont feel this is the answer for me . I'm having double the amount I had for a year. starting in June. Before that I was on every other day for months.
Thanks for your view .
I've been having regular injections for nearly 2 years now.
Sorry I can't offer any tips but this may help re. your appointment. As you have not yet been offered an appointment, it could be worth checking with them.
In view of the current situation, a lot of outpatient clinics are affected. I had a podiatry appointment cancelled in lockdown. When I contacted my surgery to re-arrange, they sent me a text telling me to go privately, even with website address.
After injecting every month I got an improvement over 2/3 years but still get from time to time even on dull days
Oh that's reassuring. I've been on a much higher frequency for 2 years now si theres hope. With reacterlight glasses I'm fine in natural light. Its artificial light. All lights have been changed apart from one so my husband can shave! I can avoid there in the evenings. In food shops I wear a big hat still tinted glasses . I keep my vision to the floor mostly as cant look up. Then they move everything!! The single queuing system good but my shop next to the surgery with a pharmacy as well chose the brightest aile to queue for the tills which i normally avoid. I've tried a sun visa in the house but I just start to stagger and feel awful . Tinnitus head pains. Wish I knew what was going on??
So it took a long time for you but improvements were made.
Ive just filled a bag with busy and striped clothes to go as cant wear them either . Pattern glare I think its called. I loved those clothes and love bright stripes clothing. Winter clothes easier . If I see anyone I have to remind them to wear plain clothing . Even one if my daughters thought I was joking !! I have the landing light on and dull illegal bulbs as I've read you must keep trying otherwise it makes it worse
You can buy lamps with different light frequency that mimic daylight. They may help but be advised that if you sit in artificial daylight you may not become tired at bedtime so need to switch it off an hour or so beforehand. This is one such:
Thankyou
Hi, I too have these syptoms, was diagnosed with BPPV. My GP said it was Menieres, but I was determined to find out the cause, definitley NOT menieres. A private hospital diagnosed the BPPV, I spent a long time on vestibular rehabilitation, with no success. If you close your eyes and try to balance on one leg you quickly lose your balance. I had no idea it was a symptom of B12 def.
Funnily enough, the hospital I visited has the artificial lights and very stripy card, I was like a drunk person just walking to the consulting room. The consultant reassured me I wasnt mad and that others had the same issue with the carpet.
Visiting our sugery is very difficult with the artificial lights and roof windows.
My local supermarket has a Saturday morning shop with low lighting and music, what a difference, a visit to a shop without all the stress, I think it was aimed at people with epilepsy and I had not realised how unwell I felt in a shop until I visited during that hour, may be worth looking when shops have their quiet hour, apparently many shops signed up to this last year.
I use a sun visor, like the golfers, when in the garden, it definitely helps
Good Luck, it is a long process finding tactics that work. It is hard for someone who has not experienced this to really understand the impact of artificial light and stripes.
Thank tiy for your reply. I totally identify to what youve said. I too was told bbpv I paid for a vestibular pysio after a failed epley manouvre at the doctors I did 2 at home. Second worked I got to pysio she was good . The light sensitivity wasnt as bad at the beginning it really set in after I started b12 treatment.
I stopped pysio as it brought on more migraines at the time. I conti used with the eye ons and gentle ones daily. Really helped with my balance and walking. So scary isnt it strangely it's only artificial lighting g with me .
Daylight okay and I only have the stagger walk in artificial light. Yes the quiet hour I've found thank you. I think it's also for autistic people.
Another bag of stripey clothing went with a neighbour to a charity shop yesterday.
So its sounds as though youve found coping mechiinisms rather than it improving.
What lighting do you have in the house? I have a huge sun visor.All fluorescent light all taken out I struggle with LED even in low wattage in a corner . I mainly retreat to my bedroom by 7pm as I can then relax. If my head gets ' set off' can then lead to awful tinnitus and headaches .
It will get earlier though and I found that miserable last year.
Can you watch any tv?
Are you able to read A4 ?
Just wondering if all related?
Yrs difficult to get people to understand any of it really. Including Gp. In February she asked me to take off my hat and dark glasses. I got up and went sideways across the room. She turned the light off!!
One neurologist thought post concussion as I'd had a fall but it woukdve been very delayed as first ever virtigo episode happened 5 weeks after. 2 other neurologists didnr think fall. ??
Thanks again
Have you been seen by a neuro-otologist?
I was referred to Imperial College, London.
As a result of that consultation, I was then referred to various other consultants.
The conclusion is, in my case, that my problems are hereditary.
No I havent. My gp not doing any referrals that are not urgent! Will look that sort of specialist up thanks.
You have my deepest sympathy Nackapan and I can certainly identify with you.
I've got a lot worse with Sensory Processing over the last few years. Light, noise sensitivity and balance problems. Light and noise are worse as the day goes on and winter sun is a worse problem than summer sun. It's like my brain has had enough by afternoon. Going from darker interior into bright light also causes me to see shimmering. I've got used to that now. I'm waiting to go through ENT yet again as that is the only way I can access someone to do the Eply treatment round here and see if that helps the pressure feeling in my ears.
I've got dry macular disease and that causes some of the problems.
Indoor lighting in supermarkets and hospitals is terribly difficult to deal with. So I try and avoid at all costs. Computer/tv use has to have a time limit for me too now.
Sometimes I can break the episode by wearing dark glasses and sometimes watch tv with sunglasses on. Opthalmologist explained that light hitting the rods at the back of the eyes aren't able to deal with it like healthy eyes. My left eye gets very tired too and he suggested putting some clear tape over the lens, so you can still see through it but it difuses the light or something. Sorry I can't quite remember how he explained it and I haven't tried it yet.
Woke up the other morning and swayed my way across the bedroom and down the stairs very gingerly. It lasted all morning. Think I've got used to odd things happening now.
After years of severe migraines I'm now left with what I call a 'grumbling migraine' which never really goes away and it affects all my left side. I'm sure it's all connected and I've always said that to my GP and various consultants.
I'm also back with yet another neurologist, GP's idea. Everything is so specialised now that when symptoms cross over 'specialities' the patient can fall down the gap and its left up to the patient to try and join up the dots! Well thats how it leaves me feeling.
You just have to keep on trying
Hope you get somewhere in your search Nackapan. Take care xxxx
Thank you.
Yrs the go wanted to refer me to an ENT specialist. At the start one gp refused , then lock down.
I have a fullness in my ears and tinnitus and ears pop quite regularly. Like you describe I have an ongoing low key headache all of the time. Random pains at the back of my head . Behind my ears and behind my eyes
I want occipital neuralgia ruled out or in.
Like you late afternoon I really start to struggle.
Good you can ar least watch a bit of tv now. Can you read a book. ? U have had my eyes examined ed by three different levels of optometrists. All report my actual eyes ate healthy.
I do have coloured tints in one pair. Green and grey I think. They do help with the glare on food shops. Designed to help to read. Not helped me there.
Like you say have to keep going to find some sort of explanation and remedy of relief.
Certainly tests whos a friend when I csnt actually sit in a cafe or restaurant. Lights noise . I remember sitting with a friend in duvet coats in a cafe garden in November last year!!
What frequency of b12 injections are you on?
Hope you find more solutions. T C
Hi Nackapan sorry I'm late in responding. It's hard to put things in a nutshell. Sometimes I think it's all caused by years of low levels of body's vitals like B12 and adequate thyroid treatment and poor nutrition because of my digestive problems. At other times, the neurological problems, I could logically put down to neck and spine degeneration, childhood tumbles like falling off horses, tripping and banging my head as children do. I also believe that severe chronic migraines cause permanent damage (speaking for myself). I have unexplainable Cerebral Small Vessel Disease 'a brain of someone 20 years older than I am) but 'they' aren't concerned - I am though. My word loss is has got worse.
I could also put the blame for neuro problems on years of anti-depressants that they urged me to try and in the end admitted that none had ever helped me. I had a very bad reaction to one that caused me to have a seizure and put me in hospital and after that my balance was never the same again! I'd say my problems with light, noise and spatial awareness problems began after that. But its not proovable, only my word for it, but I think I am right. Also the chronic fatigue etc started after that and my body has continued to deteriorate no matter what I do and I have tried all sorts over the years.
I manage largely by avoidance but it can become isolating and frustrating not to just do what I want when I want.
I self inject B12 once every 4 weeks but if i think I'm dipping I will go back to once a week for a while. Had to knock thyroid treatment on the head while heart is being investigated as its racing away and again 'they' don't know wny as blood pressure is fine.
I Keep the basics up like D3, Magnesium, Iron, Folate and trundle on from day to day - but its not what I call a life.
So in a nutshell I think they are all inter-connected. All I need is a inter-connected doctor.
I think perhaps we all need one of those. Keep pushing for tests to rule things in or out because I have had firm diagnoses of some things which I didn't know I had. The best thing I do now which I couldn't afford to do before, is to pay for private thyroid tests and once a year Medichecks Well Woman UltraVit which tests everything in one go. Just so I know as much as my GP. Information is all powerfull.
I've rambled on a bit. Keep on posting Nackapan and take care. xx
Hi Nackapan,
Have you heard of Irlen syndrome? It's a visual processing disorder mostly concerned with light sensitivity.
It can cause all kinds of perceptual problems; depth perception and oversensitivity to light are what cause most issues for me.
I wear a baseball cap and sunglasses when I go shopping to reduce the glare as some shops use overhead strip lights. I probably look like a plonker but if I don't I'll end up with a migraine type headache and then feel rough for the rest of the day.
Don't cope well with overhead lights at all so side lights/table lights at home.
I also use sunglasses to watch tv if I feel a bad head starting.
Also escalators are difficult to use as I can't judge the distance to step so I avoid them unless I'm with someone that I can hold onto.
Crossing a road can be a bit problematic as I struggle to judge distances/how fast a vehicle is approaching.
Stripy patterns don't agree with me either.....
I was identified as having Irlen's when I was a mature student. I use presribed tinted lenses and acetates to help with the glare. There were only a few places then (a few years ago!) that could help identify if you have a problem but I think now many opticians have trained in how to identify it.
It is connected to dyslexia but it is a separate condition; I have problems with both.
I think optician's refer to it as visual stress and use colorimetry I think to work out what colour lense would help if you have a problem.
Hope you get some relief?
Take care
Yes Buster_ uk mentioned Irens syndrome . I have had a colour metre test done by a professor that invented the system along with another professor. Also seen an optician and a hospital optician I think more specialised. That just said health of eyes okay.
The professors make the lenses more for dyslexia but can work for people like me. I've found some use for them but not any help in the home with lights on.
I've asked about this syndrome but await for neuro opthologist appointment.
It came when I started b12 injections along with migraines and chronic tension headaches.
Thsnk you for your reply. Symptoms are very similar .
I went on an escalator for the first time in 2 years and it went okay. Im okay crossing a road also.
The pattern glare artificial lights using a landline phone trying to read it tv still nog possible.
Can tolerate the noise of plastic bags and paper more
Just so debilitating. Like you my 'cowboy '' outfit of hat tinted glasses and mask now dohelp. I use reacterlight varifocals all the time.
Glad you're aware of Irlens. Yes it is very debilitating.
I think my neighbours thought someone famous had moved into the area; with me mostly wearing dark glasses and a hat when out and about...
It does sound terrible for you; hope you get some answers soon and start to feel more comfortable.
Best wishes
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