Coping with sudden vision loss

[HedgeHogHome]

Hello,

I have ocular hypertension and have had SLT and use eye drops. A 8 weeks ago I woke up and had lost some vision. I still have no definative answers . Eye A and E said optic neuritis, private specialist consultant, a ciculatory problem, a mini stroke behind the eye damaging the optic nerve.

I have had no support whatsoever from the hospital . I have periods of great upset and distress. I am wondering how those of you who have lost some vision cope? I am struggling.Does your brain eventually adapt and you don't notice,? Can different lenses clarify the grey, blurry bits? Can specialised lighting help?

Any coping strategies will be very much appreciated

[Sorshup]

Very upsetting for you; is it correct to understand that you have not yet seen your usual consultant, just a new one, at cost, and A&E ? I would have thought at lerast the latter would have referred to your historical notes.

Without knowing the correct reason and the nature and extent of the sight loss it is not possible to advise. Your optometrist will be reticent to suggest anything until you have exhausted the hospital's function and responsibility, but should be able to help if necessary when you have done that. Support in the form of comprehensible explanations of a diagnosis and prognosis by the medics often seems lacking, taking inadequate account of most people's lack of knowledge and understanding of the technicals of our bodies ! Telephone RNIB , they may be able to let you know of a charity near to you dedicated to sight loss which can help - such organisations do not usually restrict their interest to ther severely affected.

[HedgeHogHome in reply to Sorshup]

Thank you very much for your response.It did help me . I still don't know what the cause and true extent of my vision loss is. I have anappointment on the 18thJuly at the Eye Hospital for a test ( don't know what it is),and to see the consultant I saw privately. Hopefully I will getthe results ofthe MRI scan. It will be 12 weeks since I went to Eye A andE and was mis diagnosed.

I saw a very reputable optician on Monday who performed a scan .Optic nerve and retina are fine as are the blood vessels so the problem must be further behind the eye.Like many others I do feel let down by an NHS at breaking point. To be left not knowing what is happenib to you is very upsetting alongside dealing with sudden vision loss.

[JustAmanda]

Having ocular hypertension myself, this scared me a little, so I googled optical neuritis. I’m sure you have, too, but this sounded reasonably encouraging.

…….

Most people who have a single episode of optic neuritis eventually recover their vision without treatment. Sometimes steroid medications may speed the recovery of vision after optic neuritis.

……..

However, if it were me, I would be wanting a little more explanation, especially as you refer to a mini stroke, which might require some dietary or lifestyle adjustments. I know it’s your eyes, and GPs aren’t specialised in that area, but I think I would be trying discuss the possibilities with my doctor, to see if he could either make a fresh referral, or other recommendations. But I recognise it’s extremely hard getting to see a GP these days.

Most of us are more reassured knowing things, than wondering. You may well find this is not uncommon and not serious. Do please update us if you find out any more.

[HedgeHogHome in reply to JustAmanda]

Hi,

Thank you very much for your prompt and measured response. I appreciated it.

I am still waiting for further tests and a consultation. I have an appointment on the18 th July at the Eye Hospital. Hopefully I will get theresults of the MRI scan and have a field vision test to ascertain the extent of vision loss.

I was definately mis diagnosed as suffering optic neuritis and have experienced a mini stroke behind the eye which is quite rare. and worrying especially as there is not much I could have done to avoid it. I have regular checks at the eye hospital, am fit, have good blood pressure and cholesterol. Also 1 and 1/2 alotments! All very upsetting but may have some answers soonish but I am not holding my breath

[RunnerWithPG]

I lost most of my sight in my right eye, quite suddenly, almost two years ago. The pressure had increased, and done some damage, so I needed cyclodiode laser treatment. Following that treatment, my right eye deteriorated to the point where I can just see a very foggy, blurry image in that eye. Thankfully, the sight in my left eye is still good, and both eyes have now had trabeculectomies to control the pressures. It's definitely been very hard to deal with, but I think it's getting easier over time. I think your brain does adapt to an extent - I find it's worse when I dwell on what's happened - keeping myself busy helps to keep my mind off it. Running is very therapeutic for me - especially when running in a group. In my case, so long as my left eye remains good, my sight loss doesn't really stop me from doing anything, so I try and focus on that too as a way of dealing with it.

[HedgeHogHome in reply to RunnerWithPG]

Hi,

Thank you so much for your response. It helped me significantly. I still dwell on what I have lost but hopefully will get closure when I see the consultant on 17th July and getbthe results of the MRI scan as it is still a mystery as to what happened .I have not even had a field vision test so I know how much vision is lost.

On a regular scan the optic nerve and blood vessels are ok so the optian says something has happened further behind the eye. Unfortunately my other eye was in worse shape, detached retina, blow out fracture and very slight vision loss.All about 30 years ago!

Once again your post reassured me I will be able to deal with this albeit eventually.

[Sodalover]

I’ve had the same issue, woke up and I’d lost the upper half of vision in my right eye, so far I’ve seen 3 different doctors who all seem to be baffled and offer differing diagnosis. I’ve been booked in for 3 monthly checks, like you I’m very upset and scared that the same thing could happen in my other eye. They have said it’s glaucoma because they can’t find anything else, although they’ve all mentioned an eye stroke. I hope you get some reassurance from someone on here if not from a doctor

[HedgeHogHome in reply to Sodalover]

I am so sorry to hear about your lost vision.It is dreadful and so hard to come to terms with. Have you had any more tests? I feel that I have been left high and dry with no real concern by the eye hospital about my loss of vision. It has been 12 weeks now since I was at A and E and all I have had are 2 appointments for 2 minutes each where I was asked to read a line on the eye chart!! If I had not seen the consultant privately I would still think I had optic neuritis and not a ministroke behind the eye.I have another appointment 17 July where hopefully I will get the results from the MRI scan. No letter / report from the Consultant about anything.

Please up date me on your condition as I very much empathise with you

[softekcom]

So sorry to hear this. I wish you a full and speedy recovery.

I do not mean to add to your concerns and this is a very, very offchance, but have you ever had any GCA (Giant Cell Arteritis) or PMR (Poly Myalgia Rheumatica) or had raised inflammation markers in your blood tests?

[FoxyHome in reply to softekcom]

Hi,Fortunately I don't have GCA or PMR.No inflammation markers in my blood tests.All bloods very good.A mystery.

I have just contacted the private consultant 's secretary who said letters/ email to me and my GP should have been sent 2 weeks ago.None to surgery or me!!

[Sorshup]

Glad to have your report today, as I enjoy brief midday comfort of the AC of my room in my Rhodes hotel! (it ain't arf 'ot, Mum).

Bit confused by some iof the conversation interspersed with contributions from others with similar names. GCA had occured to me but I rather assumed it would have been the first thing to be considered at A&E. Reassuring to have seen the optometrist. Annoying the wait until the 18th, and if your sight worsens in the meantime, hammer on the hospital door. The VF test should be diagnostically helpful. Look forward to further news.