In 2016 when I was shopping and a shop display fell on my head. I was concussed and dazed and my GP expected me to be okay in a week. This changed to a month, then 3-6 months, then a couple of years and the unwelcoming tip from my GP that "you will return to normal, it may just be a different type of normal".
I have been struggling to get advice from my GPs because they do not know enough about post-concussion syndrome. I am struggling to find a neurologist who specialises in this area.
I have been unable to work since the accident.
My head (scalp) is on fire. This gets worse when I am stressed or when I exercise. I get extreme headaches which keep me awake at night.
I find it difficult at night with bright lights (in the home, headlights and brakes) so I cannot drive and hate being around traffic. Any LED light seems to set off migraines. I wear FL-41 glasses which help. Summer is better for me.
Since starting new drugs (Candesarten) I am able to cope better with patterns, but at times these set of migraines too.
I am working on eye-tracking exercises but my eyes are very sensitive and increasing the exercise can result in weeks of headaches.
I have been recommended to do an intensive treatment of psychotherapy, personal training, neuro physio, pilates, massage and I am exhausted from the regime. It is too much for me.
I am hoping to find people who have suffered similarly and who can give me some support and encouragement.
I should point out that I am slowly improving but (as my teachers would write in my school reports) "should do better".
Written by
LondonGee
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Sounds very familiar, various visual processing problems, have been down this road. Firstly the mainstream health system have no idea at all about visual processing after PCS. You will need to go private and see a neuro-optometrist or an optometrist that has a clue. Can you afford to go to the USA if not there are some in Holland and a few in the UK. Try John Glover in Stockport or Janet Green in Wigan (I saw her and I can recommend her, she is not neuro trained but she knows her stuff. Be really careful because there are many 'optometrists' that only do dyslexia testing with coloured sheets, this is not what you want).
The South Maudsley hospital in London is the only 'visual disruption' place on the NHS, it's at a psychiactric hospital and is meant for people 'who see things'.
You may want to google the 'mindseyeinstitute' and the 'padula institute' both these deal with visual processing issues. Also functional brain damage can be treated via the visual system. Also google 'loveyourbrainfoundation', there's some info on the visual issues.
You may want to read the book 'The ghost in my brain' an AI scientist writes about PCS and how he eventually recovered when he found neuro-optometry, (which was Deborah Zelinski from the mindseyeinstitute).
I don't know if anyone has explained to you that your visual issues are causing sensory overload and consequently fatigue. I had and still have some of the visual issues that you describe. The problem with patterns is called pattern glare, your sensitivity to bright light is a different thing and may be of 2 types, bright sunlight or even light in general, then there's frequency lighting ie LED and Fluorescent, basically it's the rapid flickering of these lights between 60 and 100 times per second. Do you notice that your cognitive abilities get much worse in these lights? What will be happening is that all these are affecting you at the same time so you need to deal with the worse thing first, pattern glare was the worse for me, I got tested and was prescribed specific coloured lenses which were two types of blue layed over each other. They had such an impact, it was truely astonishing, all the bricks in the walls stopped moving, the road markings stopped moving, the stones in the tarmac stopped moving, the man hole cover patterns stopped moving etc etc. Carpet patterns were a real trip.
I've written loads in my posts.
Oh there is no lenses for LED and fluorescent issues. It's best to totally avoid these lights at all cost for now.
Get back to me if you need specific info and I will do my best to help.
There is hope so don't worry too much, it just takes a bit of time.
Thank you so much for your detailed reply. It will take me time to absorb everything.
I saw a neuro-opthamologist in Moorfields who was amazing. She prescribed Candasartan which has helped with stripes and patterns. She recommended FL-41 lenses which have helped on the LED and flourescents - doesn't stop them but helps me cope. Yes, my cognitive ability gets worse. I was able to notice it this weekend when somebody photographed our group using a flash. Afterwards I couldn't get my words out. This happens when I'm in the car (I can't drive at night) but even as a passenger trying to avoid the lights I lose my words and can't finish sentences. It's frustrating both for me and my husband.
Bright sunlight also hurts my eyes.
I will read your reply again tomorrow. Thank you once again
You need to stop driving right now, you are not covered by your insurance with these visual conditions. You will be prosecuted if you have an accident even if it is not your fault. It's up to you but!!!!!!! you could kill someone.
Yep, it's your responsibility not your GP's or anyone else in the health system. Sorry, I did'nt drive for 2 years.
On another note I have just tried to find a good optometrist in Holland from a contact on another site, apparently they are really good. Would probably be cheaper than going to Manchester or Wigan.
GP. What wasn't apparent shorty after your accident might have changed. Concussion can take a long time to settle, but any increase could be a sign of other causation. It more than likely is just concussion running its course, but if you are worried enough to ask about it here, it is probably worth asking your GP, and don't accept the "what do you expect", you expect further investigations to be safe.
Also contact Headway, they have a lot of information, and can maybe suggest what to ask for from your GP.
My advice is to yes see a neuro, but *not* a neuro psych. You only have a head injury, and unless you had a mental health issue prior, a head injury can not & will not cause a new mental illness. I spent 20 years doped on psyche meds, and only after deciding to quit them, did my cloud finally lift. Then & only then did I learn that I had healed much more then I had originally thought. Man made medication is never the answer for a head injury. Some scientists may claim that SSRI's can help the brain heal, but these same scientists and doctors have little suggestion on how to get off of them. My doctor told me to go cold turkey, after I told him the negative effects the medicine was having on me. I'm glad I didn't because stopping some medicines like that, often can cause a seizure. I instead quit them using a three month water titration method that I had found on youtube. It wasn't easy, but I am so glad I did it.Natural remedies including exercise, good diet, plenty of water, pressurized oxygen, listening to music, reading & the powerful antioxidants found in both Methylcobalamin (MB12,) & Cannabis's Cannibinoids (most important or CBD & THC,) will do absolute wonders. I'll never recover those 20 dazed years, but I can help others avoid losing themselves to medication.
Eh..."you only have a head injury"???!!! Yea it's only a head injury 🙄 🤬
I'm off on a 2 1/2 hr train trip to continue vision therapy which costs me £70 for 30mins. It involves vision exercises to help me control my eye movement and gain better processing, gross/fine motor control and primitive reflex movements to "put back" the bits that I learned as a kid but I knocked out of myself when I hit my head.
The reason I take issue with it is I spent the guts of a year telling myself it was "just" a head injury. Also the ignorance and lack of treatment/recognition in Northern Ireland seemed to confirm it was "just" a head injury.
It is a detrimental way to describe it and fosters the above. All head injuries are BRAIN injuries no matter how "minor". There's nothing "minor", "mild" or "just" about my brain injury.
I have a brain injury also. Mine was severe, and at the time no-one thought I would even survive. I had a subarachnoid hemorrhage & severe hypoxia for a 1/2 an hour. When I said only, I wasn't discounting the tremendous impact injuries have. I am all aware of it. I was just stating a fact, that brain injuries are *never* the cause of a mental illness, and although a neurologist and and therapy, are fine, they should not be treated by a psychologist. Mental illnesses have an internal genetic cause, whereas a TBI has an external cause. If I can save another person from the years I lost, perhaps the wasted time might be worth it.
I never thought for a moment that you were being dismissive and understood exactly what you were trying to say. Thank you for your input, I have avoided SSRIs. I suffer from headaches. If these bring me down it’s because my head hurts and I’ve explained this to the doctor. I was in the past in a complete fog without drugs! Now I just get foggy spells so things are getting better.
I’m trying to find a neuro in my area who understands post concussion syndrome (NW London / Hertfordshire)
I don't know how severe your headaches are, but try and notice if your cognition changes during or shortly after having one. Luckily all that I have are mild headaches nowadays, but I always notice improvement when I have one. In fact I call them healing headaches, and because there relatively mild, I actually look foward to having one. My injury was global, and the best kind of healing headaches occud on the less effected side of my brain. I think that synapsis are forming, and because it is a hit or miss operation. mistakes occur. When mistakes happen, the bad synapsis are destroyed (causing pain.) Still correct synapsis also form during building, but the brain is unable to form them w/o taking chances. The first time I noticed this was at an outside musical festival. Usually my directional finding skills are simply terrible, but during a headache, everything dsuddenly seemed clear and sharp. I knew exactly where I was sitting, and the location of every stage, I'm just curious if there are others wt a TBI, that also experienced improved cognition from a headache.
It took me 20 years before I noticed improvement after a headache. Your headaches might still seem too distracting too notice, but still try and keep it in mind. The really bizarre thing about mine, is although my injury is largely right brain, headaches on the side seem to have the most impact.
You should get checked, it sounds worrying to me. Go to your gp and ask to get referred to a neurologist and you must get a scan ASAP. This will then determine what treatment you need.
I banged my head and my aneurysm burst years later. I then had a SAH. So I would strongly recommend to get checked x
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