So I’m 2 Years in from my accident with 2 small brain bleeds. Still struggle with dizziness and a pulsating head, fatigue and short term memory loss, all normal but frustrating and still unable to work. This isn’t constant but recovery is incredibly slow. I seem to struggle with reading glasses feel swimmy and slightly dizzy but sometimes it’s better than others. Just wondering if there is anyone medically that could help. Also wondered if anyone has had Hyberbaric therapy and it helped with TBI?
Thank you
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Catchya
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Hi, you could try a behavioural optometrist for your visual issues, private service. Also look into vestibular therapy for balance and dizziness. These will help reduce your fatigue levels enormously. Depending on where you go some providers will offer both treatments/therapies. Think John Glover in Stockport provides both. You will have to pay for it. These are not available on the NHS.
Thank you. As you say fatigue is something I’m dealing with due to the visual problems. You don’t expect this once you’ve got over the actual injury as such. The neurologist I saw privately twice the second time 6 months after my accident said I’d be fine in a few months and I’d forget the accident even happened, I wish!
I begged my GP to get referred to my local NHS brain injury unit (after a year) and had Neurophysio to work on vestibular therapy, it was stopped due to covid but I made great progress with the dizzies and wobbles. Google local brain injury units, go to your GP ask/beg for a referral - innocence or ignorance...they don't know of all the NHS services that exist.
Had great success with vision therapist/ behavioural optometrist (private) while I was able to see her, she was absorbed into the NHS to provide emergency eye care last March. I'm on second prescription for nystagmus, blurry vision, headaches, nausea, following motion issues, visual processing blah blah blah...your bog standard Specsavers can't help you.
After what can only be described as a breakdown through work stress, I've been lucky to work with an NHS Neuropsychologist through the brain injury unit. I'm discovering the medical terms for what I have problems with like procedural memory- unable to move like I want to or used to be able to, working memory- unable to hold things long enough to use them, I struggle with visual memory processing auditory memory...the frickin list goes on but, the Neuropsychologist is helping me figure it out.
I empathise with you 🤕 recovery is painfully slow... especially when you are recovered enough to recognise your symptoms or that something is wrong, but you are unable to fix them because you don't know what is "wrong".
Brain injury is very complicated. I'm 2yrs 3 months in and still not understanding how my brain has changed and/or how it affects me physiologically, psychologically and whatever other "ogically" there is to be affected 🧠❤
Thank you. I’m speaking to a behavioural optometrist next week. Also waiting for vestibular physio but due to Covid everything has stopped. As you say all painfully slow and very frustrating. I’m still unable to work due to my visual problems.. so good to talk to people on this blog who understand!
Also what Pinkvision said! And have you been referred to endocrinology? Apparently they check your pituitary gland function, as thus can make you dizzy, amongst other things. My husband is waiting to go into hospital for the day to have this looked into properly, after the initial test proved normal.
Hi Catchya, I went private under my health insurance after my concussion. Neurologist number 2 referred me to a specialist concussion sports physio, and he found I had oculomotor and vestibular problems - plus neck problems causing an issues with the nerves that go straight to the brain - basically he could prod a point in my neck and trigger the headache. (Quite painful physio - not like normal stuff. ) Lots of exercises for the ocular and vestibular stuff. Plus a program of graded exercise to resolve the effects of the concussion on the autonomic nervous system - you might be able to find someone similar? He's a uni lecturer - so other people are learning how to do this stuff in the UK - which is encouraging -
I think the neuropsychiatrist also recommended by neuro 2 said that people quite often didn't get in front of them for three years - so it was just fluke that neuro number one (who was stumped) happened to know neurologist number two....I got lucky basically.
A pulsating headache is usually migraine though. You need a neurologist and/or neuropsychiatrist who specialises in concussion, because my neurologist stated that post traumatic migraine was quite different from normal migraine and wasn't chronic. Don't be put off/freaked out (I was!) by the psychiatry angle - it turns out they are just very good at the drugs that affect the brain. And coaching on managing fatigue - as was Theo and the neuropsychologist.
Neuropsychologists are good for the assessment tests that flag up what's not working properly, and how to handle that - plus a lot of support on the emotional side.
The Headway helpline 0808 800 2244 will be able to advise you in referrals too. Hope this makes sense? X
Thank you so much for this Information. I have been diagnosed with post concussion migraine syndrome and am on meds for that but the visual stuff is really getting me down. I’ll look into another neurologist. X
Hi Catchya, It's rough you've still got the migraines - I had them on top of the 24/ 7 headache. Managing the fatigue has helped to manage the headaches. How are you on the meds? ( I tried three pre neurologist #2, only a slight dent in the headache, and grotty side effects ensued.)
What's your balance like? Neuro #2 asked me to walk heel to toe across his office and it was mortifying - I just couldn't do it and stay upright.
A neuropsychiatrist might be more useful? And was what Headway mentioned at the time ( neuro #2 referred me to him to manage along with the physio) - and mine also had a physio and psychologist he worked with. And it's really not about it being in your head by the way - the neuropsychiatrist spotted that I'd had a good few hours of post traumatic amnesia, and was more blunt with me than anyone that I'd had a brain injury.
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