Since my tbi I cannot go any where there are fluroscent lights. After a short while I loose control over my right arm and head to the right continuously. It moves involuntary and I have no control over this. This does not happen under all bright lights, just fluroscents.
I was told it my last neuro appointment that this is all pschological, but he refused to listen when I said it was only under fluroscent lights. This was amongst other stuff he refused to listen to. The movment directly corresponds to the bleed I had which was on the left. It stops me going to a lot of places and I am unable to go back to work, because they refuse to change the lights even though Access to Work said I had a very good change of getting a grant (my work would not cooperate with them). I can have many seizure type events in this environment which make me very tired. The docs don't seem to care that all I pretty much do is sit at home because of it. I feel pretty much like I am rotting away. I am so tired with trying to get help and trying to get better, but everything has got worse since January and my speech is going down hill as well. My beautiful partner has kept me going through out all of this.
Doctors will not listen to this and a variety of other problems I am having post tbi. They make me feel like I am making it all up, oh but wait I landed inverted on top of my head at 35mph. I was told by one doctor to forget about this, I really wish I could.
What do you reckon?
Does anyone else have similar problems?
How do you get the docs to give your care?(my partner had to complain when I was in hospital as they were refusing to treat me after the lumbar puncture they performed started to leak and there own A and E said they could fix it. It seems, you complain about one doctor, you complain about them all).
Tens months on I want to get back to life, but most days I can't get out of bed. I don't know how to get help, so I can move on.
It seems like a brilliant site on here. I would appreciate any of your thoughts..
Really sorry to hear what a lousy time you are having. I do have problems with lights. Fluorescent or flickering lights make me feel sick and dizzy and disorientated. Flashing lights like the blue ones on a police car are the worst. I'm very lucky as I don't have to work under fluorescent lighting - if I did I think I'd have to stop work.
Two suggestions for you. One is, ten months after a TBI is a very short space. I finally saw someone from Headway a year after my injury, and she said, 'oh a year, that's nothing.' I guess this could sound really depressing but actually I found it helpful to know. You just have to give it time. Three years later I am functioning really well, by the way!
Another suggestion re. the lights and other symptoms. Find your most sympathetic doctor (if not the neurologist, maybe try your GP?) and ask about being referred to a clinical psychologist. They might be able to help untangle your symptoms, i.e. what is caused by neuro damage and what is caused by post-traumatic stress or whatever. It really helped me.
Oh and a final encouraging thought. Whenever I went through a bad stage (like when all your symptoms seem to be getting worse instead of better) I realised that my recovery usually jumped forward afterwards. So a bad stage might mean that your brain is working hard on a leap forward. Here's hoping for you.
Hi, just a thought based on my experience with spatial awareness difficulties. I was having particular difficulty when focus would change, mainly walking up and down stairs, in busy places (supermarkets were the most apparent.) I had my eyes tested fairly quickly after leaving hospital and everything was fine. Two years later I was prescribed corrective vision glasses as I had become short sighted. With routine sight tests, the opticians became worried about a long list of potential problems although luckily none ever came to anything. With further specialist tests the problems were found to be caused by the build up of pressure on the brain during the initial stages which effectively distorted the shape of my eyeball.
I also have problems with flashing lights, but I think that I group this with the changing focus as in the spatial awareness. So in addition to the excellent advice given above I would recommend a visit to the opticans also.
As a more general do you have a headway locally that you can register with. They can provide excellent support and have been a real life line along my journey. Hope and wishes to you.
Ryan
Hi bikerlifestyle, Aelfwyn and Ryan,
Thank you very much for taking the time to reply, much appreciated.
Aelfwyn I have problem with police cars as well, any anything that flashes/ flickers or is fluroscent! It is immensly worrying that the docs refuse to listen to this. It pretty much confines me to home.
The docs diagnosised my seizure type events as epileptic, for which I am on meds for (horrible they are to). Now they say that they are not epileptic but psycological even though the movment corrsesponded to where my subdural was. My meds have helped to reduce it alot, but still bad. The docs then went on to loose my 20min eeg test and failed to report on the second and failed to test me for light sensitivity on the second. I cannot trust a word that they say, so I want to see evidence, that they don't want to show me. My solicitor has tried to get my records out of my main treating hospital, but to now avail. He started five months ago. If they have given me outstanding care why will they not release my records?! I am worried they are going to try and take me off my meds even though they have helped. I prefer not to be on them, but I was so bad when I was without them. I did not have the problem before my accident.
So I the plan is to go and get a private eeg test done I am not happy about it (about to loose my job), but feel I have no choice now so I can elimate the epilepetic bit or not. I am also planning on putting a big complaint in about by hospital care through ICAS. I am so tired but I don't feel I have much choice as they complete refuse to give me appropriate care. I am very shocked at the lack of care in the care profession. This seems only with the top consultants, I have met some wonderful caring doctors and nurses, but when you get to the top it all goes wrong and they are the decisions makers.We have literally have had to battle for everything. When I was in hosptial I layed there with a broken wrist (which was later operated on), which they did not do anything about and a severley bruised hip which they thought was fractured (luckily it wasn't just torn), but we have had to present every different body part to be fixed, to the different departments. I just want to hide now from the docs, but know I can't because I need to get sorted. I am very allergic to doctors now!
We asked for me to be referred to a neuro physiologists but the neurologists said he can't do, the GP has to and vice versa. The neurologists said he would contact my GP. Last time he wrote to her he completely lied in his letter, said stuff that didn't happen in the consultation and couldnt even get my medication right! So I am sure between appointment and contact with GP some fabrication will be made up. He even was saying I was trying to argue with him at one point, I wasn't, I was just trying to ask questions. My tone does get loud occassional, but I do not know I am doing it. I never shouted at any point.
Ryan excellent suggestion about the optioniancs, fingers crossed it may shed some light on it. When I came out of the MRI scanner once they had me face down (for my wrist) and when I got up, everthing was really blurred as though I had lots to drink and lasted for about twenty mins. The MRI technian said it was nothing he had done when I told him. I was not saying it was!
I have been speaking to Headway over the phone quite regularly and they have been fantastic. Not quite confidence yet to venture to my local Headway, but I do need to meet new people. Being ill is a very lonely, isolated world.
Sorry very long post. Another thing I noticed since tbi I write so much.
Thanks again for all your kind advice.
Hope you are all ok today.
i do,but as only 7 months since injury,have been told still part of concussion,and it will dissipate.does not help whilst suffering it,as get disorientated,and hospitals seem to have the worst light,when you need to be your most composed. i don't know
since brain hemmorage i couldnt stand light before op , but im in dark with only small lights on if there a flouresent light above boy carnt bear it and pain in head be carefull 2 of the tiny spot lights you get in kitchens i dont watch tv now as flash on screen hurts to feel sick and have to shut eyes pc screen low light big print still not long tho
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