Post concussion and dizziness / hard to explain eye issues....

[silverbirc]

Hi

I'm wondering if there is any advice / similar experience here.

I hit my head 9 months ago -Oct. Seemed to be improving around April time, no big symptoms. Realised I had been at home most of this time too.

Last few weeks I've been doing more, although not a huge amount. Discovering that I seem to be really affected by movement and sound/light. E.g walking and talking at the same time, makes me feel sick / dizzy. And walking through the shops and looking at things at the same time. These seem to be getting worse not better and feel exhausted after / need quiet envt to recover. I also definately feel a lag between seeing something and registering it properly. Eyes also get tired really easily and blurry vision.

(I'd had MRI, neuro appts, high st opticians, physio, iron supplements). Will go back to GP/neuro.)

I'd be really interested to hear what investigations anyone has had related to eyes - brain. And also re: guts. Sore recent guts is definately linked to headaches.

Thanks

[pinkvision]

Hi, sounds like standard PCS symptoms.Get referrals, for vestibular therapy/physio to help with movement and balance.

For vision, behavioural optometry (private not an NHS thing, google BABO. For further explaination on this method google 'mindeye' institute). There's no current 'fix' for reactions to LED/screen lighting, it seems to be the flickering effect that causes the problems.

Also get a neuropsychology referral to get a cognitive test.

The gut thing is the fright/ flight reaction in the body. Get omeprazole to stop getting ulcers in the stomach and duodenum.

Have had all these things and followed the methods above and looking to be fully recovered within the next 12 months or so. Good luck, remember symptoms vary for different people.

[silverbirc in reply to pinkvision]

Thanks for your thoughts Pink vision. I am going to explore BABO. I'm wondering why this is only a private provision and not recognised on the NHS. I feel more prepared in speaking to neuro again. Guts are interesting too aren't they. I'm looking at improving gut health via diet more. My stomach hasn't been an ongoing issue. Comes in waves. I'm really interested in the work of Tim Spector, i think he has alot of wisdom and expertise in that field too. Thanks again for your repsonse.

[Bragan]

I would have symptoms quite similar to your. Did the physio assess vestibular function? Balance, gaze stability etc? I have found that most of my symptoms improves over time but when I’m mentally tired or overdoing it they can reappear. By keeping my mental & physical activity low and gradually increasing it I have been able to do more and more without symptoms. The vestibular physio gave me exercises to do to help balance abs dizziness. I would still have vision related problems when it comes to reading, tv & screens which are unresolved. I have seen the opticians and a neuro ophthalmologists who both said my eyes are fine. The physio think there is an issue with the information going from my eyes to my brain and through inner ear as the gaze stability exercises seem to worsen symptoms. By gradually building them up I have been to add more in. I’m making progress but there was no definite diagnosis and it’s not all resolved yet.

The gut thing is very interesting. I have been having acid reflux problems for the last 6 months and am taking lansoprazole. I have a history of gastritis and heartburn occasionally but never anything as long running as this. I didn’t connect it to the PCS though.

[silverbirc in reply to Bragan]

Thanks for your reply Bragan. I cant quite remember what the physio assessed for. I had to self refer and I did ask for a vestibular physio but was advised to see someone perhaps more general who had a lot of experience. I'm not sure of how much training all physios would have on vestibular issues. Their focus was on my neck strength / mobility for whiplash related symptoms which did certainly help .

How did you access your vestibular physio?

Guts are interesting too aren't they. I'm looking at improving gut health via diet more. My stomach hasn't been an ongoing issue. Comes in waves. I'm really interested in the work of Tim Spector, i think he has alot of wisdom and expertise in that field too. Thanks again for your repsonse.

Thanks

[Painting-girl]

Hello silverbirc,

My oculomotor and vestibular post concussion problems caused me problems in supermarkets, and shops - scanning up and down and along shelves and clothes racks was a huge problem - and quite exhausting. Couldn't really cope in large supermarkets ( I only went in with my octogenarian mother, and could only cope by keeping my eyes down and following her around ) the environment really cranked up my nausea and headache. Part of it is that shops are busy, noisy environments with artificial lighting - all of which are a huge drain on our post BI brains, which could easily trigger off migraine - and fatigue, which I also think makes everything else worse anyway. I know nausea and queasiness was very much part of my earlier post concussion world - some of it was to do with migraines I think, but it would also be triggered by exercise.

But doing exercises set by the physio for my oculomotor and vestibular problems has meant I can cope in shops and other busy environments a lot better than I did originally - I don't go willingly into supermarkets now, because it's still a bit of an issue, but really tons better than it was, I can at least buy stuff and leave without keeling over! I wrote up one of the exercises on here recently if you want to try it? It was my last post on here a week ago - you'll find it under my profile if you're interested

Jen 🌸

Bragan

[silverbirc in reply to Painting-girl]

Thanks so much. Your symptoms sound very familiar. How did you access your vestibular physio? I had to self refer to physio. I asked for a vestibular but this didn't seem a quick option. And saw a general but experienced one quite quickly. She helped with neck strength/ mobility for whiplash related symptoms - 3/4 months after my fall, which I think also helped reduce nausea. It ebbs and flows though still.

And in terms of the exercises, I don't really have this indoor space available. Do you think outdoors is as effective?

Thanks for your time

[Painting-girl]

Hello S,

Yes outdoor is good as well, I slightly suspect they suggest hallways so that you have a wall in reach early on. I think it's possibly slightly harder when a wall is in closer focus - like a supermarket aisle I suppose - but I did practice outside in the garden as well ( because my hallway isn't that long really).

My neurologist referred me to the physio he worked with - was clear he considered it part of the treatment. This is him -

myhealthspecialist.com/spec...

puresportsmed.com/team/theo...

my insurance paid for quite a long time, and then I picked up the tab until lockdown started. I don't think I've heard anyone here talk about oculomotor issues, but I think it accounted for quite a lot of my post concussion symptoms.

( I've just had an object lesson in how much I've improved in the last couple of years - I went back to an art class I haven't been to since before I was referred to that neurology team - and can't believe how much better I coped today - and I'm driving again, which makes things easier!)

Jen 🌸

[march21]

Hi,

Your post reassured me, so thank you.

I have PCS complicated by PTSD. I recognise much of what you describe. I find it difficult to describe/know how I'm functioning. Last year my co-ordination issues meant my right hand almost cut off my left finger. So my advice is don't have an accident.

What's helped me is the gym, where you can exercise without balance/things moving. The exercise helps my sight/hearing instability. Also swimming in outdoor salt Lido. Even if you hardly move its helped me feel different parts of my body more, (didn't realise couldn't feel them much before). Neuro-physiologist suggested all this.

I need 3 hours of sitting still after either of these activities. Everything gentle, increasing things by tiny amounts & avoiding doing anything when tired.

It doesn't mean a great life style but I'm making progressive after 2+ years which is heartening.

[Leaf100]

Hi silverbirc,

I had the symptoms you describe, plus I got (and still do) tremors that would start up. My limbs would also stop working, and if I tried to push through I would fall.

I saw a vestibular therapist, but all the exercises did was make the symptoms worse. I was about a year into my recovery at that time. I was told later that though the symptoms were vestibular like it was not actually the cause, so no point in that sort of therapy. (I am wondering if I should ask about it again.)

Do try the medication recommendations as throwing up is really hard on the body. (I went through some episodes where I was on the floor with the room spinning, and if I moved I heaved.)

I found having a 4 wheeled walker helped. Somehow the extra information about where I was in physical space it gave me, plus the lag from the walker moving on terrain to when I had to walk on it helped a lot. (Yes, I know... reluctant to use one at first but glad to have it when I got used to it. Side benefit is people are nicer to you as the walker tells them you have a disability and just aren't some drunk or druggie on the down slide.)

I also got hearing protection in the form of the kind of headphones worn by construction workers. I tend to lose things so I haven't tried noise cancelling gear yet. ( I hear it annoys some and can make being dizzy worse.) Cutting sound down helped a lot.

Dark glasses also help. There is greyish glass which reduces contrast and a more amber one that reduces glare. I used to grey ones in the day and the glare reducing ones outside at night. I got cheap sunglasses to try - over glasses mostly is available if you wear them.

There is a specialist optomistrist here guy here who does some kind of neuro optical exam . I was just there and will get glasses he will put some sort of prism in. One pair for close work and a different one for walking around. He has a good reputation. He also does a rather expensive visual therapy, but it work for some and not others, so I won't be doing it. I live in Canada so not sure what this would be called in the UK. (People I know with the glasses says they help a lot and can speed up kr sl8w down the perception of movement around you.)

I sat on the walker so I could look at things on the shelf, or took in a list and get a clerk to help me. After time it got easier but I still do get triggered.

Then there is the obvious, but hard to remember to do. Do not try to do two things at once when you know it bothers you. Things like not trying to listen to music or the radio inthe car, do not try to walk while you are talking - stop walking first, etc.

Do also get checked for asymptomatic migraines. Sometimes those effect your vision but you don't get the standard headache, or if you have a headache all the time ot may not register. In my case it felt like I was burning.

Feeling dizzy also often comes with gut issues.

9 months out is still early days, it takes time and a lot of healing is still possible.

In the meanwhile it is about coping best you can and getting good medical advice to deal with symptoms and have guidance so as not to overdo it.

I am 12 years from date of concussion.