So I am on day 20 of my optic neuritis journey and its killing me!! slowly losing the will to live here!! Have nticed a slight improvement but nothing AMazing! Was not given steroids and have to wait it out bt wanted to know your experience with it and how long it took u all to recover? So annoying i cant drive and being out makes me feel so disorientated.
Feedback would be much appreciatedd
xxx
i had meeting with an ms nurse the other day. she says healing time for specific symptoms vary. The message i got is that it can vary from days to months. Ive had this lack of coordination/dizziness/visual fog thing goin on for almost 3 months.
yea i guess she is right!! Soooo irritating isnt it!!! u ever had optic neuritis before?
hey Hun…my experience is improvement is slow but steady. I have not been able to dirive since mid jan so completely understand your frustrations. the actual on in my left eye seems to have resolved ie inflamation is now gone so approx 3 mths for me but you have to be patient as once inflamation resolved yor eye sight will then impove slowly…you may need to get checked at optition re driving. there is o evidence that steroids are much use although they will restore sight no guarantee of preventing a future occurrence. it’s ts I know but stay positive …keep busy where possible and do what you can when you are up to it. I found I had profound fatigue too as the brain tries o deal with the visual changes from on. the majority of people recover their sight fully but am afraid it’s a wait and see approach, xx
jesus thats a long time!!!i actually drove round the block earlier and was horrible lol. now got a real bad eye headache cos think was loads of work for my brain. Well hopefully it will resolve soon cos this is driving me mad. how is ur eyesight now? would it be possible to talk to u about it?x
aww Hun…tis it’s been a long time with the actualON but until I get my new contact lenses I wont be attempting driving re insurance as even with correction I am on,y just legal to drive. eyesight has improved a little over last month but it’s slow. yes sure happy to talk to you about it. pm me if you like take it from there. I certainly wouldn’t try driving just not worth the risk. it can varey allot re on from person to person but coping with the eyes as they are now isn’t easy I know… em
ok hun will pm u now x
My first ON started on Christmas day and in the process of the sight coming back I often felt disorientated and would cover my bad eye as life was easier without it.It was 3months before I drove and went back to work.
I didnt do a phased return which was a bad move as I had horrendous headahes as,how you feel pottering around at home is not realistic in terms of carrying out a full time job.
The first time was def my worst but after the 3 months I thought the vision was more or less ok (no steroids) but Ithink it continued to improve further over the next 9mnths.
The second time it was blurry without complete loss of sight, rather than totally random images and far less painful(again no steroids…I hate them) I do have to say now though it has never come back as well as before but then again my ms in general has progressed so everything goes blurry at the slightest excuse.
I gave up driving in Oct, but you will know yourself if it is safe or not.The slightest doubt and dont risk it…and remember if you do drive somewhere eg shops,then do the shopping,will you still be able to drive back if you are alone? You need to test yourself first to see what happens with your eyes when you are tired.
I guess at 20 days in you have seen for yourself you have a way to go yet.I know its frustrating but there is nothing you can do to speed it up so chill,go with the flow and try to accept its going to take time. It is a good forced opportunity to learn new ways of approaching life and the things you do for when your little MonSter throws its next treat for you to contend with…although hopefully its years away.
Take care
Pip
I got ON on Paddy’s day March 2011. I couldn’t drive or go out (as I felt really dizzy walking) for almost 4 months. It was an absolute nightmare. I still can’t and won’t drive at night, when it is dark, as the glare of the lights make me feel sick. I doubt if my eyesight will ever get 100% better, so I just deal with it an know my limitations.
Hope it improves for you soon.
Ness46 x
i had an ON attack during the first week of june, no improvement till yet… im just 20 years old and it seems as if im half blind from both my eyes… it kills me from inside, no one could understand what it feels like… i am scared that if i dnt recover my vision how would i spend my life like this, i cry about it when im alone… i was about to strt my engineering but couldnt cuz of this… it seems like my life is over… it z so painful… im considering a suicide cuz i cant live like this
I have had Optic Neuritis in my right eye for 6 months. No other episodes just lost my sight in the right eye overnight basically. Went to bed with 20/20 vision and woke up with completely blurred vision. Cannot read, cannot drive, im useless. Gee what a horrible condition and after 6 months of blurred vision, so blurry I cannot read even the largest of print, I now live in a world of basically dark and light shadows only out of my right eye. Zero improvement after waking up with this after 6 months. Doctors have said it is permanent. Hope for the best one specialist neuro- opthamologist said and it “may” improve over 6 months, but that time frame has now passed so any hope I was clinging onto has now gone. I wake each morning hoping I can see something out of my right eye apart from this complete blurry distortion. Posting this to hope it provides comfort to others who have actually had some improvement in their vision as something is far better than nothing at all. Fingers crossed I will see again but gee, after 6 months and no change, things are not looking good.
Hi,
I’m still waiting on a diagnosis but I suspect ON but all my checks with opticians come back as nothing wrong with eyes - is this typical as it’s inflamation of the eye ?