Hi, I suffered severe CO poisoning in 2016 and was wondering if any light could be shed on this debilitating problem i have.
My eyes won't fixate, when I look at objects especially in the distance greater than a couple of feet, they seem to wobble...
I had an MRI and it showed asymmetric optic nerve sheaths. Will this ever get better?
I'm also suffering hearing loss and tinnitus as a separate issue and body side weakness..
Although catastrophic, I've accepted I have to learn to live with the hearing loss, however my eyes moving is seriously debilitating, is there any hope this can improve?
Thank you
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Keithgray
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Welcome Keith to this forum. Are you not under a specialist ophthalmologist for your eye problems? If not I would suggest that you go to an optician and they will then refer you or at least be able to answer your questions as to the long term prognosis. We are not medically trained on here so cannot answer your questions other than to say that others do have long term problems with vision, hearing loss, etc. Maybe someone who has long term visual problems will share with you what they have been advised or given to help them, but you do need to get advice specific for you.
Hi Keith, I agree with Caroline, this needs t be addressed by an optician, you should be referred to the ophthalmology department to find out what can be done.
Unfortunately the NHS doesn't always come up trumps. There are also ophthalmologists out there that deal with visual problems caused by neurological problems.
I attend one such opthalmologist for vision training. After assessment a course of treatment, exercises, have been put in place to help teach my brain how to deal with, in my case, the vestibular problems I have. They are very challenging at times, but I do notice a change for the good.
The down side is, I have to pay for these sessions as they are not provided, in my case on the NHS. I was discharged by the hospital presumably because my problems were not acute enough. So, first stop is the NHS ophthalmology dept via a GP referral, and be strong and hold out for one. Once people in our position are " walking wounded" we seem to be written off as fine, whereas I've always said I want to be the bes I can be, and I'll fight for it.
Good luck, I'm sure there's help out there for you.
Yes I attended multiple ophthalmologist appointments and they could find no problems, since it's an eye movement disorder and the movements appear to be so small its barely visible and I've just been discharged.... however completely debilitating to me. I can't see to do anything more than basic functioning...
My GP also dismisses as anxiety however eye gaze instability is not anxiety at all...
I was wondering if it could be demyelination? is this repaired by the body or permanent?
If that's not the cause then I'm at a loss, vestibular damage??
I'm seriously depressed almost suicidal over this, I don't know even where to start getting support... Since NHS can't find it I don't know where to start. I'm being pushed into living life normally by family and doctors but I CANNOT function!
With vestibularproblemsm are you doing VRT then? What type of eye movement issues do you suffer?
Hi, it's not eye movement issues with me although I do have a degree of visual neglect which we are going to tackle soon. I have very pale optic nerves! Which evidently shows my optic nerves were damaged by the pressure in my brain.
With me we are trying to improve my balance and we are strengthening the myelin sheath cone ring on the nerve pathways. They told me a tale that the NHS had told one man the only way they coild help his double vision was by removing an eye!!!!! However this optometric practice helped him with eye exercises.
So, Keith I think you need to find a private optometrist who can help you with this. I searched for neurological optometric rehabilitation and was lucky to find one in Stockport, the Greater Manchester area.
They also do a lot of work with children with learning difficulties because a lot of those problems are exacerbated by problems with the eye to brain wiring.
Do a bit of searching on the web and see what you can find.
Hi thanks, I'm based in the Midlands, NHS services arent great here.
So in your case the mylenn sheath is regenerating? Do you have the name of that on in stickport?
Indeed I checked out VRT gaze stability exercises, however sceptical about the effectiveness of these.
Myissue is absolutely debilitating, I just want to be able to look at something and it to stay still.
I'm praying that since my MRI showed asymmetric optic nerve sheaths, then some remyelination might occur over time possibly fixing this, I've had it 5 months now and am losing hope
Sorry about the delay, I tend to post hen go off and do something coming back later. The practice is called John Glover optometrists. Look them up on the web, the website is ok.
It was the only one I initially found around here and I've been happy with them.
My initial assessment cost £200 I think but I got some of that back through a Simply Health, which I've carried for years, and been very grateful for throughout this illness.
Thanks I'll try calling them on Monday. What balance issues and solutions are you doing? I've heard VRT may help with my issues however I cannot see how these would help with only a tiny bit of visual fixation instability (yet debilitating) I have.
How is 'strengthening the myelin sheath ' achieved?? I'm hoping you're getting a lot better with this then.
I've literally been murdered by psychiatry here I just want my life back. can't imagine living like this for much longer.
Hello Keith. I live in the USA so do not have a local reference for you. I did however receive treatment at a Balance Center here on the North Shore of Boston MA. gordon.edu/balance
I was treated there for post concussion syndrome. I was amazed at the in depth nature of their evaluation and detailed treatment plan. Though my eye issue was not exactly like yours a great deal of my therapy involved eye exercises. I did get better. Maybe someone at Gordon Balance Center could offer you some information that might be helpful.
Hang in there Keith. I now have a subdural hematoma and feel the recovery is slow and frustrating at times. This forum is so wonderful. It helps us all to not feel alone. Marty
Nystagmus? My understanding is it depends on the cause. I rehab trained my eyes to be stiller and have reasonably good functional vision now.
My vision was pretty bad, had a patch for months and months but persevering with execercise did get the job done, mostly, in the end
I also have quite strong prisms in my specs.
I think you need to see a Neuro physio who knows about eyes. It was my stroke outpatient physiotherapist who sorted mine out. Hospital ophthalmologist was bloody useless.
I was under a nuero physio for gross balance issues, it is significant vestibular loss affecting many systems. I couldn't crawl across the floor initially.
The issue shouldn't be how much your eyes move it's about the impact that has on your functional vision. If you have functional deficits someone should be dealing with resolving it.
This is a neuro issue, in my humble, amateur opinion it should be a neuro physio working with you. Finding one with good experience of visual defeicits might not be easy though. My hospital physios were pretty clueless visually.
Got me walking a treat but I left hospital with very compromised vision. It was my outpatient neuro physio who sorted out my eyes.
That said, I have come home from work today very wobbly as my nystagmus has come back to my left central gaze. It's usually not evident until far left gaze. So it hasn't gone away, I have trained my brain to compensate for the damage. You need someone to supervise the correct visual execercises for you brain to do the same.
Can you describe your vision symptoms, do you have anything like me?
I haven't got a clue anymore what to do. I have a neurologist appointment shortly but what can they do??
VISION is like DIM, COLORS are darker, everything looks close up (like I'm looking through a magnifier - depth perception issue?), there is a haze/visual snow over everything... And of course objects dint really stay still in my gaze especially far away.
If I did have CO poisoning and never got treated could it still be damaging me? It's been 6 months now... Not sure if anyone can answer that?
Keith, hello. I am living with the effects of long-term co poisoning. I identify with what you are saying. I think conversations would be mutually supportive?
To add a symptom, when I look out the window the clouds stutter as they move very very slightly, this shows its just tiny tiny movements of my eye, however enough to be debilitating when trying to do anything practical.
We have certainly come across eye spasms as a result of a brain injury - it's good news that you have had an MRI that has shown the cause of this, as this should give a specialist a bit of a head start to understand your condition.
I think the advice given by members above is excellent - seeing a specialist such as a neuro-opthalmologist would be the best approach at this stage, as the problem needs a personalised assessment and treatment program. These services are based in major neuro-units across the country, so you should be able to find something relatively near where you live.
I'd suggest having a chat to your GP about it in the first case and asking for a referral. As you say it's a debilitating issue so should certainly be taken seriously.
Please feel free to contact our nurse-led helpline on 0808 800 2244 or helpline@headway.org.uk if you would like to discuss with us in more detail.
hi, I too survived carbon monoxide poisoning. are you sure that your hearing loss and body weakness are side-issues? I too have same. I have heard this from others too who have been poisoned. as time goes on for me, I have realized that rather than having lots of different things wrong with me and having presented as such to doctors over the years, that actually things are connected and a more holistic approach may be helpful and less frightening. I'm so glad that you survived your poisoning, sharing information is a really positive way to cope and feel less alone.
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