Last reply 3 years ago
Optic Neuritis recovery

Hi I managed to develop optic neuritis in my right eye at the beginning of September. Quite a long story but It started with the usual pain when moving eye, not that I knew why at the time I just thought I had bad eye strain. Well after a week I suddenly had what the optician thought was an ocular migraine, basically patches of vison suddenly greyed out as blood vessels constrict leaving holes in vision. This soon resolved after 10 mins, and after optician checked me over I thought all was fine.

I realised something was not right when I woke up the next morning only to find my vision in right eye had got worse. It was like looking through dark grey lumpy jelly, I could see some detail quite well in patches between the darker patches but decided to get this seem to at the oxford eye hospital. The opthmologist who saw me said it was classic optic neuritis and will pass in a couple of weeks, so less worried again I went home. However things did not improve over the next few days the vision got darker and darker, noticeable each morning and I was starting to develop bad pain in head behind the eye and my vision had gone completely by this stage. After many visits to eye hospital they finally admitted me to hospital for 3 day steroid IV treatment followed by oral tablets for about 10 days. I’ve also had CT, MRI and blood tests and all were ok, no signs of contributing factors not even MS, though now the Drs regard me as having a 10% chance of developing MS in future. There was no improvement after IV or tablets, Drs seem disappointed, me more so. Beginning of October i started to make out light but very little and could sort of make out shapes more towards top half of vision, bottom quarter is black as ace of spades though. Its now November, 2 months since it all started and I have seen no change since beginning of October. I have been told vision Usally returns, I’m worried that the lack of progress since October, and that this will be it for my recovery. What are your experiences with optic neuritis recovery and how it changes with time?

thanks
Jay

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
4 years ago

@jaybo78 , I’ve never had this symptom although many others have. Recovery times have been subject to a lot of discussion because of the concerns that you have.

Try the forum search facility, the magnifying glass, top left and search for “Optic Neuritis” and you’ll find these previous discussions.

PS. I removed your duplicate post for you. 😉


aussiekylie
4 years ago

@jaybo78 I got optic neuritis in my left eye in June this year. Classic eye pain and slightly blurred vision and then within a day or two could barely see anything out of that eye. Didn’t have steroids and recovery was really slow for first 6 weeks. Now nearly 6 months later I have central vision but edges are still blurred and I still have occasional eye pain. In currently having pain in my other eye (but not with eye movement) so am worried I might be getting ON in that eye, although I did have it a few months ago and opthomologist said it was all clear. I am having headaches all day/night but don’t know if this is eye pain causing the headache or headache causing the eye pain.
I can understand how fearful you must be, but don’t overanalyse it in your head. Made your doctor again and if you’re not satisfied with your treatment keep pursuing it. A good doctor will take any vision loss as a serious issue.
Best of luck and keep us updated.
Kylie


thadcastle
4 years ago

I got optic neuritis in my right eye at the end of March. I had blurry vision and it was painful to look around. I went on steroids. This did get rid of the pain in my eye and improved my vision. However, it is December now and my vision is still not great. My vision in my right eye is all over the map throughout the day. If I get warm, eg do exercise or stand in the sun. I will not be able to see much out of my eye. Its like I am trying to look through a fog. If it’s a good part of the day I get around 80% of my vision back. I find it frustrating how long and slow the healing process is. I recently had pictures of my eye taken and I was told my optic nerve has thinned and this is normal for people who have optic neuritis. No one can tell me how well my vision will improve. I was wondering if anyone else notices their vision change due to temperature and if this ever fully went away.


beccygreeneyes
4 years ago

I had optic neuritis in May 2012 and it got me diagnosed i lost all vision in left eye. My eyesight is not covering well unfortunately. I had an MRI last year and it said my left optic nerve has now atrophied which means that the nerve fibres have actually completely worn away! I think everyone is different in terms of recovery….. my near was the one who said i just don’t recover well from relapses. Some do some don’t its just the luck of the draw1


gav
4 years ago

I’ve had optic neuritis three times, once in one eye and then subsequently Twice in the other eye. I’ve had full recovery twice and partial once and that’s the thing, everyone has different stories. Optic neuritis is the same as any other symptom, although perhaps more noticeable.


waynexxl
4 years ago

the onset of my MS came in the form of optic neuritis – on my 40th birthday, it began with impaired vision in my left eye. I thought I was just getting old and needed glasses. as my vision worsened, I saw my eye doctor, then an optic specialist, then a premiere optic neurosurgeon. I had vision impairment 90/95% in my left eye & 50% in my right.
I did all the tests, including the painful spinal tap – they could find nothing wrong & determined that my ON was caused by something environmental (although my original eye dr thought it to be onset of MS). I took a very high dose of steroids (prednisone) 80mg daily for nearly a year & a half. Weened down about halfway through, but the impairment came back so right back up to full dosage! Needless to say, I suffered from all the ill effects of the steroids – weight gain, extreme moodiness, etc. However, it did go away. I was told the same as Rebecca above, that my optic nerves had some permanent damage and that I may have some visual disturbances for the rest of my life.

unfortunately, in the summer of 2013, my vision started going bad again, and this time they were able to diagnose the MS. I did NOT want to go back on the steroids, but the MS medicine kept the vision in check, although if it is too hot, or I do any amount of strenuous activity, I can get blurry very quickly. It will subside once I’ve cooled off and rested though.

I guess everyone will recover differently, but that was my experience. it is very scary to feel like you’re going blind, and if you are any kind of a control-freak like me, not being able to drive and having to get help for the most basic of activities just because you can’t see, can be quite daunting. learn to trust those around you and be grateful for their help – you might need it again someday!

good luck to all!
Wayne


aussiekylie
4 years ago

@wayne, I’ve not heard of an environmental cause of ON? Usually the doctors do a tonne of blood tests and lumbar puncture to rule out other causes. Did they do blood tests on you? I’ve only got it in one eye but am terrified of the thought of it starting in the other eye. Stay positive, stay cool.


waynexxl
4 years ago

they did ALL they tests (including that lumbar puncture) and they could never figure out what the deal was. when it first occurred, it took a while to get to the specialist (my fault) so I didn’t start any real treatment until the inflammation affected the optic nerves for both eyes.
one of the things they checked me for was cat scratch fever (a real thing!) – I had been clearing some land where feral cats were known to live, and there was a thought that I might have breathed in some of the dust/debris that included some dried out cat poop. for that first year and a half, there was no definitive answers as to what caused the inflammation & ON. it wasn’t until summer of 13 when the first lesions appeared and they could identify the MS>

if you’re already getting treated, you shouldn’t have to worry about the 2nd eye – they can control/minimize the inflammation. good luck and keep me posted!
W


jaybo78
4 years ago

Well its been 3 months now since it all started and it has been good hearing about your experiences, the general message from comments here, other places and doctors is that is a slow journey but to remain positive. my doctor who is leading the Amiloride Clinical Trial In Optic Neuritis (ACTION) at Oxford says that the recovery time can take as long as 18 months so 3 months is still a relatively short period of time in the grand scheme of things. So i’m trying to stay positive and get on with life as normal as can be, I decided a good way to see the changes is to create an image of how things are at long time periods between, as day by day the changes are hardly notable if any!. so at mid September after it all started my vision was totally blind in my right eye…

This is how it was in October http://i30.photobucket.com/albums/c332/JaySO78/JaysON_Oct2014_zpsf8e7dd44.jpg

and this is how it is in December http://i30.photobucket.com/albums/c332/JaySO78/JaysON_Dec2014_zps0d741061.jpg

Still cannot see much, but seeing this I can tell there has been a slight change in past couple of months.

anyway stay positive everyone and I wish you all a happy Christmas

Jay


craig83
3 years ago

Hi got this stupid ON in October 2013 in both eyes, its worse in my right eye though. I’ve had steroids and still no change. The eye doc has now put me on a tab that is called diamox, has anyone heard of this.


nzer
3 years ago

Hi

I’ve had MS for 16 years and one of my symptoms was optic neuritis – shimmery disturbed vision that would last for several days at a time. Imaging on my optic nerves 8 years ago showed typical MS damage. Five years ago I changed my diet and followed Professor George Jelineks recommendations for a plant based diet with fish. I have seen many improvements to my health but significantly, no optic neuritis symptoms for the past 2 years.

I have just had another eye exam, and my optic nerves appear to have healed. Alse my peripheral vision is almost perfect. My ophthalmologist and optometrist have not seen MS damage healing like this before so were surprised, but have both seen other vision damage healing in diabetes patients to whom they recommend dietary/lifestyle changes.


stumbler
3 years ago

@craig83 , Diamox is also known as Acetazolamide. There’s some details here about this medication and how it is used:-
http://www.nhs.uk/medicine-guides/pages/selectorshow.aspx?medicine=acetazolamide


jaybo78
3 years ago

In the last year and a half I made some drastic dietary and lifestyle changes, mostly due to having gastric bypass surgery in 2013. Since then I have lost 15 stone and now a normal healthy weight. One of my main concerns was my optic neuritis could be due to nutritional deficiency, however my MRI scans show that this was not the case as this Usally presents itself as thinning of nerve fibres. And my diet is much healthier now. I also take regular vitamin and mineral supplements and have B12 injections every 3 months. Still mistifyed as to what’s caused my ON, and over the past week my right eye started to get painfull when moving again. my vision had mow gone back to being completly blind again, pain went away on Boxing Day but I’m back to square one


jaybo78
3 years ago

The neurologist said there is nothing they can do and I just have to ride it all out. They are reluctant to giver further steroid treatment as it didn’t help my initial ON recovery and made me quite ill after for a good few weeks. Diamox as a treatment sounds interesting, but does have some rather unplesent side affects but I hope it works for you.


aussiekylie
3 years ago

@nzer I am adopting the Jekinek program. Currently I’m focused on getting the dietary aspect right. I got optic neuritis in my left eye late May this year and it hasn’t fully recovered (maybe 50%) so I’m hoping to avoid any further damage. Any advice re the diet etc? I’m also looking into attending one of his retreats


waynexxl
3 years ago

my neurologist said that there was no real dietary link, but trying to avoid food items that increase inflammation, eating more that decrease seems logical. my ON comes & goes, depending on heat or any, even relatively little, exertion.

Happy New Year, everybody.
W


nzer
3 years ago

@wayne
more studies are being published that show that there is a dietary link
http://www.overcomingmultiplesclerosis.org/News-And-Events/Whats-New-Out-There/Detail/Australian+researchers+confirm+bad+fats+a+key+factor+in+MS+progression/
what do you possibly have to lose by trying it?

@aussiekylie
what worked for me was getting my vitamin D level right first (it was easy and made a huge difference to my fatigue so I knew I was on the right track)
then I dropped dairy (my problem skin cleared up)
I ate a lot more vegetables including juicing which meant I ate less meat.
Within 6 months I was fully on board, feeling and looking really well, dropped a few kgs…. and my MS symptoms were diminishing.
After 2 years I went on a retreat – it was a very profound experience and I highly recommend it. I haven’t looked back since – of my 18 MS symptoms (mental, physical, sensory) – 16 have completely gone leaving just spasticity on my right side and poor balance.

If I had listened to my neurologist, I would still be in pain, falling over, slurring my speech, always rushing to the loo, unable to concentrate etc etc.
Again – what do you possibly have to lose by trying it?


aussiekylie
3 years ago

@nzer was the retreat you went on an OMS retreat by Prof Jelinek? As encouraged as I am I think I need some intense tuition to motivate me to do the meditation aspect.


cazzzzzy
3 years ago

Ooooh I have to say @aussiekylie that meditation soon becomes quite addictive and the relaxation and peace thoroughly enjoyable … I meditate every given opportunity! 🙂

Happy New Year xxx


aussiekylie
3 years ago

What type of meditation do you do @cazzzzzy ? I’ve looked at a few apps but sometimes the voice-over is annoying. Someone suggested to focus on my breathe and count each breathe as this gives me something to focus on (to detract from all the thoughts racing through my head). Another said it doesn’t matter how many thoughts go through your head, as long as you feel relaxed/refreshed afterwards that is enough. Also how long do you meditate for?
Thanks


nzer
3 years ago

@aussiekylie yes it was an OMS retreat by Prof Jelinek in New Zealand, and the meditation aspect was run by Dr Craig Hassed – a lecturer at Monash University in Melbourne, member of the OMS team and one of the presenters at the recent UK retreats.

Five guided meditations here from Craig and some other useful downloads too – Craig’s podcasts are at the end. Interesting that the University of Auckland Medical School in New Zealand recognises the value of mindfulness for good health and well being.
http://www.calm.auckland.ac.nz/18.html

An easy was to start is counting your slow deep breaths – in for one, out for two, in for three, out for four up to 10, then start again for as many repetitions as you want. I do one count of 10 before I get up in the morning – only takes a minute and sets me up for the day.


juliea
3 years ago

Hi I am new to all this. I got diagnosed with optic neuritis in Dec 2014 and still have limited vision in my left eye. I’m still on steroids at the moment and experiencing some horrible side effects. How long does it take for the vision to return and can anyone give me some hope ? Really feeling low about it as I have no one really to talk to about it and who understand


aussiekylie
3 years ago

Hi @juliea i know exactly how you feel. I got optic neuritis in my left eye June 2014. I didn’t have steroids as they say they don’t improve the outcome they just speed it up. It is a very stressful time,however i was very lucky in my GP making many of the appointments with specialists etc for me, so this took away a lot of stress and Ive been under great care ever since.
The good news is it DOES get better. Mine took about 3 weeks and then started improving really quickly,I even worked full time right from onset of optic neuritis (i took 2 days off to get over the initial shock that it could be MS). I think this really helped me psychologically as it gave me time to stop thinking about it constantly as i was busy at work….although,hello, how can you stop thinking about it when you can’t see out of one eye?! I guess work was a distraction and helped in that i was going about “normal” life when my whole life seemed to have changed with a single diagnosis.
Once my vision started to return (around 3 weeks it started to recover) it began to heal quite rapidly for several weeks and then plateaued. Currently my sight in that eye is like looking through a foggy window,but most of the time i don’t really notice it as my good eye compensates,its only when i cover my good eye that i realise how bad it is.
It can take up to 12 months to get full recovery and statistically most people recover very well.
Hope this helped you, stay in touch if you need a chat 🙂


juliea
3 years ago

Hi aussiekylie,thank you for the reply. My work were really good about the problem. I work at an opticians so I was in the best place when my sight disappeared. They have me in admin now as I can’t see well enough to dispense. I was registered as partially sighted in the summer so when my left eye went, it was terrifying and still is. It’s lovely to have other people to talk to.


stumbler
3 years ago

@juliea , steroids are normally given at a very high dosage over 3-5 days, either intravenously or orally. Do you know what dosage you’re on?

The steroids can leave a metallic taste in your mouth, so it’s wise to keep some mints to hand.

If they are “high dosage”, normally prescribed by a Neurologist not a GP, then you should get over these side effects pretty quickly. High Dosage Steroids will work with your body over the next 6-8 weeks to help you recover, although recovery from Optic Neuritis may take longer.

Let us know about your dosage and we can be more specific for you? 😉


juliea
3 years ago

Hi i’m on prednisolone 6 tablets at 5mg in the morning and have done for last 3 weeks.


stumbler
3 years ago

I hate to say this, but 5mg just isn’t a high enough dosage to do anything. You need a quick shot, over 3-5 days, at between 500mg or even 1gm of Methylprednisolone.

I should assume that your GP may have prescribed these steroids.

Here’s some details about the use of steroids :- http://www.mstrust.org.uk/atoz/steroids.jsp

Have you been referred to a Neurologist for these problems?


jaybo78
3 years ago

Mine started in September, I had steroid treatment both IV then tablets. I had very bad side effects from steroids about a week into my oral tablets. Mine was extensive stomach problems, made worse as I had gastric bypass 18 months ago. I’m still not 100% but I’m no longer suffering sever stomach pain I was on 60mg prednisolone tapering down to 20mg over 10 days. Anyway, My optic neuritis has been very slow to show any improvements. Unfortunately over Christmas it flared up again and sent me straight back to being completely blind, the neurologist opted not to put me on steroids again following my last troubles with them. Its been about 2 weeks now since the flare up and the vision is improving, slightly quicker to get to the stage I am at now compared to last time. I was only just perceiving light at about 6 weeks after my 1st ON episode, so 2 weeks to get to same stage is not bad. However I think its going to be a long recovery for me judging on how its currently going. But keep positive, everyone experience is different and most people seem to say a full recovery is the norm despite the severity of the ON episode. Key is to not stress about it if you can.


juls
3 years ago

Optic neuritis for me, is treated with Dexamethasone 4 mg x 2 tablets daily. I have had probably 10 courses of this in about 20 years and it seems to work fast and improves the fatigue and numbness, my numbness is on both sides of the body as are the lesions. I have only had 2 noticable bouts of optic neuritis in this period of time, with blurred vision and pain, but outside on bright day my eyes ache. Normally my symptoms entail extreme fatigue and widespread numbness, whole body except for head. Having had methyl prednisone intraveanously once, I have found for me the dex works so much better. The side effects I had early on were increase in appetite, chronic constipation, worst heart burn imaginable. Now the neuro prescribes pantoprazole 40mg tablet once a day,while I am on steriods. It relieves the constipation which in turn stops the heartburn.

The specialist explained that orally I was getting is the same dose, as intraveanously. So dex orally is now my treatment, for flare ups, of choice. I have had 1 course,once, of prednisolone with tapering at times, I have not found this to as effective as Dex. 2 tablets twice daily and then stop.


aussiekylie
3 years ago

@juliea I don’t know anything about dosage but from what I do know I think @stumbler is right. My opthomologist (eye specialist ) and neurologist both said oral steroids will not help in initial stages, only intravenous steroids have an effect. I’d be seeking further medical attention if I were you.


juls
3 years ago

What I meant to include in that email is recently I went to see an eye specialist because I have floaters in my eyes and the first one presented in primary school, the eye specialist that I saw at that time, explained to mum it was OK and that it is the liquid of the eye, and does not effect eye sight. They have got worse over the years in fact interestingly, after the first attack, that led to the diagnosis, they were much worse.

Visit number 2 at eye specialist, tested my eyesight even doing a visual field test, which was full. Today my eyesight is fine, only needing reading glasses as most people my age, 52, do. But the damage I have in eyes from inflamed optic nerves is old damage. Floaters still there annoying only when looking at a blue sky or wall, because I know what it is, and will not cause eyesight loss I no longer worry about it and seem to ignore them.

An optometrist on last visit, noticed the damage done by optic neuritis advised when it is active, steroids, in his opinion is necessary and that optomertrists can and do somes prescribe them


jkfamily
3 years ago

How is your vision now


jaybo78
3 years ago

No better for me I’m afraid, only got 5% of vision in right eye I’d guess. Chances are it won’t improve anymore than this. It’s also causing me to get visual migraines in my good eye and I’m getting daily discomfort from eye strain in the good eye as its trying to compensate. Anyone got any tips as to minimise the eye strain? Should I get an eye patch to block the visual disturbance au though minimal, from the bad eye?


jkfamily
3 years ago

Steroids should help with the eye pain huh? At this point the IV and tablets isn’t bringing my vision back like it did couple of months ago. I’m treating to taper off my steroids now. I hope my vision comes back. This has been so frustrating. I hate being on steroids but scared once I get off them I will Tatar having headaches and eye pain and lose more vision.


sardines
3 years ago

I was diagnosed with optic neuritis and ms in Fall 2003. I had pain, limb numbness, vision problems including a blind spot. What helped me with my body was regular cardio. My eyesight remained blurry and I developed color blindness and gray vision. I took my fish oil and drank my green smoothies but the color blindness remained. I felt lucky that I had not developed full blown ms. I am very fit and often walk 5 miles a day. When I skip my walks and my vegetables I feel pretty lousy. I am writing this to tell you all two things-be positive- don’t lose yourself to despair, it can get better! And also that after 12 years my color vision returned. It isn’t perfect. I still fail the Ishihara test. I have trouble with green. But I am seeing color again! Vibrant reds and pinks I thought would be forever gray. The thing that (I think) made my color vision return ( and my blurry vision sharper) was eating sardines packed in oil daily on sesame seed breaf. I also eat avocados for breakfast and munch on almonds and cashews everyday.This was discovered purely by accident of bulk shopping and needing to pack a lunch! I started working in a location with very limited lunch options and started packing my lunch. Sardines on sesame bread became a favorite lunch (I really do love it) and nuts a 4 pm snack. After about 2 months of this routine I started noticing major improvements to my vidion. You can only imagine my surprise when the drab awnings I passed everyday suddenly turned bright red! Forget the fish oil. I tried that. Go for sarfines in oil. I use Brunswick from Poland.


sardines
3 years ago

Clearly sardines don’t help with spelling. 🙂


mj8121
3 years ago

My story is just about identical to Jaybo78’s. I was diagnosed with optic neuritis in late September 2014. I received IV steroids for about 5 days, then oral steroids for about 10 days (I think – it might have been 2 weeks). The photos that Jaybo78 posted to display the vision are spot on for me. I started with complete vision loss and now it looks about like that second photo – it’s been stable since about December. I have tested negative for everything with the blood tests and my MRI and lumbar puncture were clear. I am curious as to ways to avoid eye strain with my good eye too and the diet info is always very interesting to me. This is a great forum!

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.