Hi had a head injury just over 2 years ago, diagnosed with post concussion syndrome and visual processing and light sensitivity issues. 6 weeks or so post accident I started experiencing, (as I recorded it at the time) sinking into a black hole, 'fantastical imagery', can't move my body.
After the first time it happened multiple times daily with excessive sleep patterns. I have recovered quite a bit from all the initial symptoms of post concussion syndrome and some of the visual processing and light sensitivity. The excessive sleep pattern continues along with the 'fantastical imagery', but the 'sleep paralysis' (can't move my body) does not seem to happen much.
I have been trying to find out what this is, my neuro-psychologist at the brain injury unit goes a bit wide eyed when I mention the 'fantastical imagery', as if she is saying 'don't go there'.
I have searched for months to try and solve this issue and I have come to the conclusion that it sounds like Narcolepsy, with the excessive sleep, 'fantastical imagery' (hypnagogia), and occasional sleep paralysis. These are shared symptoms, however narcolepsy is an auto immune disorder that is genetic in nature. I have never experienced anything like this before the head injury. No one in the Headway Community (Brain Injury site) shares any of these symptoms. Most brain injury sufferers have insomnia.
I'm really baffled, can anyone in the Sleep matters offer any suggestions please or point me in a direction that could shed some light on what I have described please.
Hi pink, I'm sorry that you're experiencing these problems. I'll bet it's frustrating! I have no definite answers for you, but I have a possible theory: Because you share symptoms with people who have narcolepsy, but you do not meet the autoimmune/genetic factor, I believe your brain injury has occurred in an area or manner that mimics narcolepsy closely. You no doubt are familiar with this knowledge: Brain injury is not a precise science; we know too little about the brain and each area of the brain's functions. We've come a long way but have a very long way to go.
Consider this: My Dad had a serious head injury as a young child falling from a very high point in a tree. In his mid 30's he developed the symptoms of Parkinson's but was not diagnosed or considered to actually have Parkinson's. He was given the exact treatment and drugs for Parkinson's for decades. Other doctors and other people thought he really had Parkinson's because of this. But for the last decade or so, at the age of 85 now, his diagnosis and treatment was changed with science's updated knowledge. His current Dxes: spasmodic torticollis and essential tremor. If he lived another decade or two, those Dxes may easily be changed yet again as we learn more about the brain and brain injuries.
I think you are in a similar situation. Your injury occurred in crucial areas of your brain that are producing apparent narcolepsy symptoms. So treat it like narcolepsy unless your symptoms change, which they just might in time. You're in a situation where you must observe your symptoms and then act on them, hopefully convincing your doctor to assist you in this as needed. It really doesn't matter what label is accurate as long as you get help for the symptoms you are living with. I wish you the best of luck and health as is possible!!
Hi Bonnie Sue, thanks for the comment, it was good and on the spot I think. The hypothalamus region is identified in narcolepsy and also in body regulation where I also have a problem with the sympathetic system. I will discuss this with my GP.
Great! I also have an acquaintance/friend that went through some really dysfunctional years following a brain injury but has now recovered much of her many abilities and faculties and is functioning very highly both back at work and as a volunteer counselor! She's amazing and encouraging for others with brain injuries to see! Don't ever rule out progress! 🏆😊👍💜
Hi thanks again, I keep chipping away piece by piece, was told not long ago at the brain injury unit that I will never recover. I think differently. Again thanks so much.
Hi pinkvision amber tinted glasses are recommended to wear two hours before sleeping. crhomatherapy glasses and tinted glasses for light sensitivity are available on amazon.com.
I jhave light sensitivity with cataracts and even ordinary daylight can hurt my eyes so I have to wear sunglasses. I have special grey tinted lenses for computer and another tinted pair for television. I also use tinted perspex which can help colour background with writing on backgrounds. I cannot see white writing on a pale background so I use a combination of aqua grey pink and yellow depending on the light put up against computer screen.
Other ideas are to change your décor to darker colours such as olive green dark grey or earthy colours. This can help you feel rested. In Mediterranean countries often rooms may be painted in darker colours to stop the dazzle of the sun may be?
So sorry to hear about the problem . There is a colour wheel guide for visual stress and light sensitivity sufferers with black writing on different colours. colour2c.co.uk
It does a test so you can choose tinted A4 Perspex to suit your eyes. Hope you continue to improve. I have a sleep disorder so have to take tablets to sleep but have found cutting down the light in the bedroom does give a better nights rest. I also avoid thrillers and danger before bedtime as they are noisy and can affect your eyesight with shooting scenes and bright flashes.
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Hi thanks for the info. I go to an optometrist for my vision issues. I wear blue tinted lenses in sunlight to stop pattern glare and colour fluorescence, basically patterns move like those optical illusion pictures and waves of colour come from coloured objects. In LED and fluorescent lighting my lenses don't work and cause a panic attack and fainting episodes. Anyway it's over 2 years now and I have learnt to manage my environments.
The excessive sleep does not cause me problems as such except that I sleep for 15 hours a day on average, a long sleep at night with short bouts in the day. I am conscious for periods of time while I am sleeping which gives lucid, weird, beautiful and terrifying dreams. The closest description I have found to this is Hypnagogia and the DMT experience and various meditative practice experiences such as kundalini. I think they are pretty much the same thing via brain chemistry mechanisms.
I'm just trying to get to the bottom of why this is happening so I can find a way to deal with it either treating it somehow or just accepting it.
Thanks again for your comment
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The sunglasses which are pink and green may work to cut town the glare. The brain waves might be stimulated by alpha wave therapy to help anxiety with nightmares and vivid dreams which may be linked to the visual cortex or the auditory cortex. There is a product called Alphastim which is an electronic device which can calm the nervous system. The company sells the product with back up information and help in the Uk I believe. There is also a special PEMT - a mat with electrical impulses which you lie on. The US seems to be better informed as to alternative methods of helping the nervous system recovery. There are some interesting videos on the use of coconut oil on how it can help the nervous system as well as build the immune system.
Suggest you find a neurologist who specialises in your type of sleep problem.
Expect you have had the computer test for eyesight which can show the brain circulation and how it affects your sight and can detect abnormalities.
Hope you find the right answers but keep asking you may understand what part of the brain is affected and drugs might help.
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The US is decades ahead compared to the UK nhs system, most of my brain injury information comes from the American VA and a couple of brain injury coaches on youtube.
Doing mindfulness based cognitive therapy at the moment, only just started but hoping for results.
Thanks again
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Agreed. There are different foods which can help you stay awake during the day and help you sleep. Coffee is known as a stimulant and may help some. Foods with Gaba in them can make you calm. Exercise might be helpful too as it helps build the mitochondria and muscles too. There are some which help build mitochondria in the brain and body and other therapies such as alpha waves, can help this too. The mindfulness therapy is helpful, but how it can help the symptoms of narcolepsy, and the vivid dreams where you are awake, I am not sure. There are special courses on how to sleep. I feel a bit of coward as I take a sleeping pill, but when I forget to take one I am up all night driving my husband potty. I have to go bed late, otherwise no sleep at all. Overhead lighting, also prevents me sleeping so have to keep lighting down. I hate sleeping in pitch black but it does help many people with the melatonin hormone production which helps you sleep soundly. Thanks for sharing your experience. The rose tinted glasses/sunglasses are meant to help people with light sensitivity , but I find wraparound tinted glasses in dark grey or dark blue helpful in doors.
just a advice for better sleep , do proper exercie on daily basis, leave your phone when go to bed and use posture belt , you can find it at posturebracecorrector.com
Hi, thanks for the comment but have you read the post? I get excessive sleep, I can sleep anywhere and anytime.
You could be me! Have you really thought back to your younger years and looked at the symptoms of Narcolepsy? I realized that I had been living with the diagnosis my entire life and didn't know. My physician disagrees with the genetics theory. I'm being treated and I'm improving dramatically! But it is VERY IMPORTANT to find a good specialist who has been in practice for a few years.
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