Living with Optic Neuritis

by | Sep 27, 2010 | Alleviating Pain & Chronic Health Problems, Optic Neuritis | 56 comments

My Story: Dealing with Doctors, Optic Neuritis, and the Effects of High Dose Steroids

It was March 8, 2010 when I knew there was a problem…  I was starting to lose the peripheral vision in my right eye.  Crap…  So NOT what I wanted to be dealing with again.  I knew that I was starting to have a flare of Optic Neuritis, because ten years earlier I had the same problem with my LEFT Eye.

Ten years ago the protocol for Optic Neuritis was 250 mg of steroids by IV every 6 hours for 3 days, then oral prednisone starting at 200mg and tapering to 0mg within 30 days.

I ran this therapy and it worked like a charm to restore my vision, BUT in the process I gained a ton of weight (went from a size 6 to a size 16-18), was super-puffy and bloated with a serious prednisone “moon face” (along with the added side effects of no sleep and psychotic emotional behavior.)

I was told the first time this happened that Optic Neuritis is usually a sign that you have Lupus or M.S. but based on my MRI results, neither of these diagnoses  were given to me.  Instead I was told that it was “stress” related.  Keep my stress level under control and you’ll probably never have another episode.  OK-GREAT!

Then within a year, I had a second episode.  Still in the left eye.  My body (and weight) hadn’t recovered from the last one, so I really didn’t want to go back on steroids.  I asked my doctor if I HAD to do the steroid protocol or if there were any other options.  He said that it would resolve whether I took prednisone or not, so if I wanted to try alternate therapies, I could.

Off to explore the benefits of acupuncture I went!  My favorite Chinese doctor for acupuncture started working with me, but we were not getting the results I’d hoped for so he referred me to his teacher, who happened to be visiting from China!  This wise little old man spoke no English, but poked needles in my 3 times a week for more than a month.  While the acupuncture helped with pain management (pressure on the optic nerve = extreme headaches)  It didn’t seem to be resolving the inflammation to calm the nerve and get things back to normal to restore my vision.  When I finally lost all the sight in my left eye, I was back to the eye doctor, and gave in requesting steroid therapy to see if I could get my sight back.

Miraculously, within the 30 day steroid run, I had full vision and could read 20/20 on the eye chart!  However, the one thing I did notice, what that the world was a bit dimmer out of my left eye.   I could see just fine, but my light/dark perception never fully recovered.  Again, with this second flare, I was told – Nope, we don’t believe you have M.S. or Lupus.

So  I went on with my life, until March 8th, 2010…

I was a bit worried because for this third go round my problems were with the other eye!  I was blessed the first two times this happened that within thirty days I was back to normal with 20/20 vision.  However, this third flare of Optic Neuritis in 2010 has been an entirely different experience.  Today is September 28th, 2010…  its been 205 days…  and I’m still on relatively high dose steroids, I am unable to see clearly, I bet I’ve had 3-4 full nights sleep in 7 months, my hair is falling out, I’ve gained weight, can’t exercise like I want to, blah, blah, blah…  In a nutshell – Optic Neuritis has put a definite damper on my quality of life!

I’ve waited patiently for seven months for things to improve and “Western” medical doctors to help me find a resolution to the problem.  Unfortunately, not much has changed, and most of the “specialists” I’ve seen have been a complete waste of time.  (More details about this in future posts!) From reading through Forums online describing other peoples experience with Optic Neuritis, I know that I’m not the only patient out there who’s utterly frustrated and finding it difficult to get answers, help, or healing!

We take our sight and health for granted until it’s gone. Since I’m a Pilates teacher and mind-body health practitioner, it’s been even more frustrating since I’ve been unable to practice what I preach (at least for a consistent exercise program) for the past 7 months.

I’ve done most of my blog postings about Pilates and exercise…sort of tried to keep my personal life private, but since I’m all about health, and mind-body health.  I’m going to share my journey for the past 7 months, good, bad, and ugly.  There are things I’ve done that have helped me keep my sanity, and quite a few crazy moments.   Will do a few posts to catch things up, then continue forward to share the new therapies I am going to start in a couple of weeks.  Fingers crossed by November I hope to be off prednisone, and have my vision back with no chronic inflammation of my optic nerve.  If you’re reading this, please keep me in your prayers for a full recovery and speedy healing.  (Perhaps month #8 will be the month things get back to normal!)

Check back on the blog if you’re interested in reading the latest about what’s happening on my journey to get the Optic Neuritis monkey off my back, restore my vision, and return to optimal health!  And if you happen to be reading this and have dealt with your own Optic Neuritis challenges – Love to hear from you!  What’s worked, what hasn’t…  please comment and share!

Aliesa George: Over the past three decades, Aliesa George has helped assist people with their personal health journeys by sharing, teaching, and developing Pilates, Foot Fitness, and other Mind-Body programs.


  1. Remortgage

    Can I just say, I have enjoyed reading your post, your blogging style is trouble-free and unfussy to read. I cant say I have the same opinion with all that you have written, but on the whole I agree with you. I will absolutely email your web site to a few of my associates as i am convinced they will also enjoy reading your articles. thanks for a well written read continue the good writing

  2. Catherine Dziedzic

    Thank you for sharing your experience. I was diagnosed with ON in August of this year. The doctors at the Cook County ER were somewhat mystified due to the fact that I did not experience pain. After several tests, they ruled out RA, TB, lupus and finally after an MRI, MS. Now I had to leave the state and have done research online and it seems this condition is mysterious. I have chosen not to take steroids at the moment. I have chosen to remove my mercury fillings, due to fact they are toxic and I had four in January. I realize stress is a factor and hopefully destressing will also help with the removal. Have you looked into mercury fillings?

  3. connie

    hi i was diagnosed with optic neuritis september 2009
    unfortunately i never regained my sight in my left eye i
    find it very frustrating that doctors cant tell you enough why it happens?
    i was put on high doses of steriods for 3 days and started taking 100mg oral. the
    inflammation ended interfering with the chiam which then started to affect my right eye
    in novenber 2009,ive had a drug called cyclophosphate chemotherphy drug to help surpress
    the inflammation ,right eye nearly back to 20/20. Its been a long road though im still on steriods on 7.5mg now its been over a year now and i hate taking my medication but i have too. i have regular check ups every 3mths hoping they will get me off the steriods this time..

  4. Sonya

    Do you use hand sanitizer?

    • Aliesa George

      Hi Sonya!

      Nope… I rarely, if every use that stuff. Would prefer the old-fashioned soap & water method. I am now doing MUCH better. Just haven’t taken the time to add a new post with my detox experience. However, I highly recommend Dr. Brogue’s program at Clearsprings Health Center. He helped me get off steroids and I am now back to 100% with no residual problems.

    • MaeKleinheksel

      Why is there a question about hand sanitizers?

  5. JenFS

    I’m so glad to hear you are doing better! I had optic neuritis on October 31,2010. It was in my left eye and took away my focal point vision; I still had peripheral vision. My vision came back 90%, but I still have a light fog over the eye. It’s a daily frustration. Most of the time I can blink and refocus and not notice it. But when I get tired or stare at something for a long time, the fog comes back and it frustrates me. SOme days I get extremely frustrated. I pray that over time I will get back to 100% as well. I’m glad to see your blog.

  6. Britt Leece

    Hi – In February 2007, I had an acute episode of Optic Neuritis and went totally blind in my right eye. I was given a 5-pill pack of Prednisone and that was it! I could see improvement and asked to do the treatment again in hopes of further restoration but was denied. I am sick at my stomach because it seems that IV therapy was the way to go. I honestly have considered malpractice on the Dr’s part but not really sure if I have a real case. My vision continues to be impaired and I would be considered legally blind. I have asked the Doctors is there is anything I can do at this point but they don’t give any good news. If anyone has any recomendations, I would really appreciate it. Thanks

    • Aliesa George

      Hi Britt,

      My 2010 experience was my 3rd episode of Optic Neuritis. 1st time – IV steroids. 2nd time I asked if I could try acupuncture to avoid steroids and was told OK – that it would eventually resolve on it’s on whether I did, or didn’t take steroids. Well, I went as long as I could without a positive result – and had to go back to the Doctors begging for Prednisone. I did get my sight back, but my left eye doesn’t see light the same as my right (it’s dimmer).

      In 2010 – I was on Steroids for @ 9 months without being able to clear the problem! Everybody gave me the runaround, most of my health care providers were worthless to help. EXCEPT for a few.

      Not sure where you are in the world, but I highly recommend Dr. Bradley K. Ferris at the Dean McGee Eye Institute in Oklahoma City, OK. He is one of a handful of Neuro-Opthalmologists in the country, and for me is worth the drive – I received much more help with my eyes, and assistance with med. management from Dr. Ferris. He actually cares! Is helpful, and runs an efficient office with an amazingly short wait time. (It actually takes me less time to drive 2 hours to OKC, complete my appointment and drive home – than be seen by the eye care specialists in Wichita!)

      The other person I recommend you contact is Dr. Michael Broeg at Clearsprings Health Center in Arkansas.

      Because traditional medicine wasn’t working for me to a) resolve my Optic Neuritis flare, or b) get me off steroids, I went to Clearsprings in October 2010 and went through Dr. Broeg’s detox program. In less than a week I was steroid-free, my eye was better and now 6 months later I am still doing great! Can’t promise it will bring your sight back, but this is definitely the best money I’ve ever spent for health improvement. I’m now also much more conscious of some of the environmental things, as well as foods that my body can’t tolerate which may have accumulated to create the problem in the first place.

      Hope this helps! If I can do anything else for you, please let me know.

      Peace & Blessings,

  7. Michael Broeg, DC


    Thank you for directing people to the Health Recovery Programs at Clearsprings Health Center. Your experience is a good example of what we can accomplish at Clearsprings. In a nutshell, we treat chemical related health disorders and associated modern health conditions. Ths encompasses a wide range of health diorders from fibomyalgia to Parkinson’s Disease. There are millions of Americans suffering from difficulult to treat disorders that have ‘no known cause and no known cure’ that don’t neede to be suffering. Most are being treated for the plethora of symptoms adn health disorders that have an unseen underlying factor of chemical accumulation.

    Overview: In the last 70 years we have created a new problem on the planet – the harmful effects of manmade toxic chemical on human health. Today we live in a chemical laden environment. These chemicals are desscribed by the EPA as Persisten Bio-accumulative Toxins. Persistent, meaning once they enter the environment or your body, they do break down. They are Bio-accumulative, meaning they build up in human body tissue. Toxins because they damage and destry tissue. The fact is that we have all spent a lifetime stockpiling toxic chemicals in our tissues. These same chemicals reduce health, cause disease and even alter genetic function. The Health Recovery Programs at Clearsprings rid the bosy of deeply embedded toxic chemicals and repair the damaged tissues. As a result, your body can health.

    We live in difficult times and modern health disorders are have reached a crisis level. Aliesa’s optic neuritis is a good example. Even with the best mainstream and alternative medical care her problems were not resolving. By addressing the underlying cause and repairing the damage, she was able to break through the hidden barrier that prvented her full recovery. She is also equipped with the knowledge and ability to prevent future health problems.

    Thanks to Aliesa for having the courage to bare and share her personal life and the details of her struggle with optic neuritis. Hopefully because of her candid disclosure and caring for her fellows, others can overcome needless suffering.

    Many people want to know how to determine what conditions qualify for treatment at Clearsprings. A good rule of thumb is that if you are suffering from a condition that has not resolved after one year of treatment or if you are taking medications on an ongoing basis, you are a good candidate for the the Health Recovery Programs at Clearsprings. If you want to arrange a consultation phone call witih me to determine if our program is the right action for your recovery, please feel free to contact me through our website: I would also be more than happy to answer questions on this blog site.

    Michael Broeg, DC
    Director, Clearsprings

    • Lubluv

      @Michael Broeg, DC

    • Lubluv

      @Michael Brocommen
      I would like a phone consultation I also have optic neuritis.where can I contact you

    • Siva

      I have been diagnosed with optic neuritis during early 2007 and on steroids with other immunosuppressants since 2007. I have to maintain at least 20 mg steroid per day and with one immunosuppresants about 2 g per day. Still it has not gone to MS but I am looking for option of this stem cell therapy or others so that i can come out of this steroids and other drugs.

      I would like to more on the possibilities.



  8. Graham Connell

    Dear Aliesa,

    I hope you’re on the road to recovery and doing well. Thank you for your article.

    I have been recently diagnosed with ON – my experiences here in Scotland is that clinicians are extremely reluctant to prescribe prednisolone (unless your other eye is compromised) – yet very fast to refer for a MRI (The NHS in Scotland is great at certain things!) and essentially I have to “ride out” the symptoms.

    By the sounds of your experiences with steroids, perhaps this is the best way forward. The downside being the recovery time – especially given the nature of my job, helping pharma companies submit new drug data to the FDA.

    I knew this wasn’t going to be easy when the eye specialist emphatically stated “stay away from the internet”, throwing in words like “Lupus” and “MS”. Of course, the first thing I do is search the Internet, and it is indeed not for the faint of heart.

    So I’d like to thank you for your honest and personal account, a welcome contrast to the “whoever et al” clinical type resources.

    Best Wishes and good health,


    • Aliesa George

      Hi Graham,

      Sorry to hear about your diagnosis of Optic Neuritis. Hang in there and I’d definitely be proactive with your doctors! We only have 2 eyes and eye replacement surgery isn’t an option. The first time I had ON they put me on steroids first, and did the MRI second. So my MRI came in clean & healthy – and they couldn’t use the expensive test I had to pay for to help diagnose the problem! The second time – it flared in the same eye and since I opted to try and be steroid free – my MRI DID show the problem. However, because I waited a couple of weeks to start steroids – I did not fully recover my vision in that eye! (Perhaps it would have been the same either way… but the sooner you can get the inflammation off the nerve, the better.) And that’s the benefit of starting steroid therapy quickly.

      Personally, I don’t like taking ANY medicine. But – if and when I have another issue with ON, I will be quickly asking my docs to get me started on steroid therapy, so I can hope to minimize any permanent nerve damage, and strive to restore my vision as quickly as possible.

      I am doing well – last year was really rough. Should have been a month or less on steroids and it was at least nine months! My search for alternative therapies led me to Dr. Brogue at Clearsprings Health Center. His detox program successfully got me off steroids without my ON flaring. And it’s now been 8 months with zero problems. My vision has returned to 20/20 – although the aging process is now making it more challenging to read a menu!

      Even having had 3 Optic Neuritis flares, I am thankful that the doctors continue to rule out MS, and Lupus. After my detox experience – I am very conscious of how the foods I eat, products I use, and things I have to smell & breathe affect my vision! I believe my body reached chemical overload which was why the steroids weren’t resolving the inflammation for my ON to resolve more quickly, and chemical toxicity may be why my ON flared in the first place. It’s funny, last year every time I went to the store, my vision got worse! I now know it’s because of all the products and plastics that are off-gassing in a contained environment. Even now that I’m better, I notice my vision change when I go into any store or mall. (So I’m as speedy as possible to get in & out!) I’ve also stopped eating all foods I knew I was allergic to, have discovered a few others that my body doesn’t want either, am avoiding all processed foods, dyes, high fructose corn syrup, soy, fast-foods… I’m not perfect with my eating habits – but definitely have made some big changes and know it’s helping keep me and my eyes healthier. I’ve changed most of the skin & body care products I’m using too – soaps, shampoos, lotions…the fewer chemicals I slather on my skin to be absorbed into my body the better!

      I know that it was frustrating for me to get good care here in the US and find doctors that were willing to really help me! I went through a couple of “specialists.” Not sure what the medical system is like in Scotland, but either keep on your docs to get the care you need, or keep looking for the right medical specialist who can help you!

      Best of Luck, drop me a not and let me know how it’s going!


  9. Daisy

    Hi Aliesa,

    Thank you for your article and hope you are doing well.

    I found your personal account both informative and helpful. I was diagnosed with ON on 29th April this year when I lost total vision in my left eye. I was then told that I would have to wait for the inflammation to go down of its own accord, before I would know how much of my vision would return. Not prescribed anything.

    I was very hopeful at first of regaining my vision and things getting back to normal. However, as the weeks have gone by, some of my vision has come back but nothing like what it used to be. I had an MRI scan that I had to wait four weeks for the result of which came back clear, but has done nothing to allay my fears of having MS.

    I am now waiting for a neurologist appointment. I am feeling very depressed and still unable to come to terms with my sight loss.

    How do you manage to stay so positive as I am really struggling, mainly with the uncertainty of knowing that it could strike again.

    Best Wishes

  10. Mary


    Don’t loose hope, try to focus on all the good things theer are in your life.

    Let us know how you get on with your neurologist appointment.

    Stay positive!


  11. Millie

    Hi Aliesa,

    I was diagnosed with ON May 2011 and no steroid therapy was offered or recommended.

    I am now 5 months down the line and there is little improvement with my vision. I had to go to the eye casualty department last week as I was experiencing “pin-pricking” type pain in my other eye. The ophthalmologist couldn’t find anything wrong with my left eye, but on inspection of my right eye, informed me the optic disc was chalky white in colour and the damage is irreparable. I am angry because I wasn’t given the option of steroids.
    I have been off work since all this happened and depression has set in.
    I live in England.
    Kindest regards

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  17. MaeKleinheksel

    The optic neuritis trial was a study that looked at steroids vs no steroids for optic neuritis.  The outcomes were similar for both groups.   I got optic neuritis in my right eye Sept of 11.  The optic neuritis trial results were pretty new and so I did not receive steroids.  I am an RN and did all the research I could for the condition.  I was ending up with a lot of dead ends.  I see an opto neurologist and he had no solutions for me either.  Optic neuritis hit both eyes by June and had left me with no right peripheral vision.  I called a naturopathic practitioner  friend and she  recommended I see Dr Tennant in Dallas  TX.  I flew to TX with no guarantee of results, 2 weeks later I was back home with no major improvements.  I was driving down I 70 and started to cry because I could see my Rgiht elbow for the first time in 4 months.  This is the therapy I have chosen, and am grateful to Dr Tennant and his amazing research and journey,  Please check this option out, for your own sake.  It has worked for me and I have learned a ton from him.  Dr Tennant is an optometrist that also went blind put him into google and you should find his website.  It is expensive, but so is being disabled from not being able to see.  Hope this info helps someone.  Feel free to contact me on facebook.  I was  his first known optic neuritis case. that he tried the therapy on.  It is a type of energy work (which sounds crazy to the western medical side of me ) .  Best of luck to all who have traveled the same road as I, it is not a fun journey to be on. 
    I have maintained full vision and wear a contact Rx lower then before optic neuritis.

    • MaeKleinheksel

      Update May 2013
      Saw neuro optho. He says he has no idea why I have vision from looking at my tests. My energy has returned 100%. No relapse or change since last July.

      • MaeKleinheksel

        Optic nerve remains light pink. Same OCT score. Rx on contact has stabilized. Changed contact brand to remove halos with night driving.

    • Joanna

      Hi MaeKleinsel, I would be very grateful if you could tell me more about your trip to see Dr. Tennant for optice neuritis. My daughter has a severe case that is confusing doctors so far. We are in Germany but we are willing to travel if there is a chance that it would help. Thanks, Joanna.

      • Aliesa George

        Hi Joanna, I do not know Dr. Tennant so cannot tell you anything about him. However my personal experience with Optic Neuritis is that steroids really do work best to quickly combat the inflammation. However steroids are working on the symptoms not the cause. For me, doctors could not find a “cause” so I was only told to watch my stress level. I have since learned on my own how critical removing any form of inflammation from my life is to help maintain my health and eyesight. From managing stress, to the foods I eat, to the products for soap, shampoos, lotions, ect. Even cleaning products in the house, make a difference. Food allergy/sensitivity testing helped me discover the things I had been eating that were causing inflammation in my system. If your daughter has been on steroid treatment, she will also need assistance getting her body back in balance chemically. I didn’t realize how dramatically the steroids had affected my digestive system and ability to process food, as well as my brain chemistry. If you’re not getting the help you think you should be getting from your doctor, continue seeking additional expert opinions. Good Luck to you and I hope that your daughter is better soon!

      • Mae Kleinheksel

        To Joann sorry for the late reply and to the group. Is my email unsure how to private message you. You can do phone consults with Dr Tennant. I would also look at removing grains and going paleo on anyone who has a current flair up. The treatment is not a “cure: per Dr Tennant, if you stop treatment it will
        return. The initial cost is 5000$ for the bio modulator as well as the transducer which both are necessary. After that there is no cost. Treatment protocol is 15 minutes each eye with transducer 5 x per week for 3 months and then once a week. Dr Tennant should be able to hook you up with someone in Germany or do a phone consult to look at alternative routes of inflammation. Main routes of inflammation are chemical, food allergies, viral, bacterial, and fungal. I do think Sonia is on to something with the hand sanitizer for my personal case.
        I will have blurry vision 4 days after ingesting gluten. If I think this is left over from initial ON hit,
        If I lived in Germany I would look into essential oils ( I prefer the results I get with BeYoung but am assuming Europeans use them more widely then we in the Us do. ) as well as an alternative Dr. or allergist with an interest in food allergies and causes of inflammation.
        My phone number is 720 708 8131. I have 20//20 vision with correction.
        Update on NeuroOpto appointment with Dr Bennet in Denver Colorado . Dr. Bennet seemed very excited to see me because he got a new machine. He ran the tests on me and came back his shoulder sagging stating “your optic nerve is so bad and I still have no idea why you can see and others cannot.” ANA test repeated because it is more specific and came back negative. He is sending me to an allergist, which I thought was interesting because I have been looking at that side of things for a few years in my own. If anyone is in Denver and has a flair up feel free to call me and I can have you come over to my house and we can try and treat you
        Hope this helps someone

  18. OpticNeuritisCanada

    Optic neuritis five years ago led to an MRI scan an a confirmation of MS.  Five years later, I have just recovered from a second attack of acute optic neuritis in three weeks.  An ophthalmologist that I will trust with my life, treats ON with a retrobulbar steroid injection in the eye.  The procedure sounds much more scary than what it is and believe me, without those injections I would have lost my eye sight five years ago already.  The pressure behind the eye disappears almost immediately and one’s vision starts to stabilize the very next day.  This is a much more palatable treatment regime than oral steroids.

  19. Lu

    Hi anyone tried mms to treat on?

  20. sonia

    Hi I was confirmed with a diagonisis of on from my MRI scan but my vision was 95 % accurate. This was in 1st week of Oct 2013.Neurologist advised me to go for solumedrol iv for 5 days. On the 4th day of iv I found my vision decreasing more as if a foggy coating is in front of both the eyes. Opthalmologist also confirmed color impairedness to some extent and significant less in vision field test. Am on oral steroids now. Its been more more than 2 weeks no improvement. Neurologist is advising me to go for a second round of iv streroid. Can someone pls help. Me understand why my eyesight detotiated after I had iv steroid and shd I go for the 2nd dose now. And most importantly when will I come out of this foggy vision. Its quite frustrating.

    • Aliesa George

      Hi Sonia, I know it’s frustrating… My experience has been that IV steroids helps the most in getting inflammation to calm down to help restore eyesight. However, on my last optic flair after 2 rounds of IV, I had to stay on 30-60mg for almost 9 months, while trying to get doctors to switch me to a non-steroidal anti-inflammatory. My vision during flares has ranged from complete blindness, to the fogginess you describe. Until the nerve calms down, you’re vision may be impaired. I have not been diagnosed with MS or Lupus, so there’s no “medical” reason for the flares I’ve had. I’ve found that steroids help the most, but for long-term health, talking a look at everything else in your life matters. Healthy food choices, the soaps, shampoos, and lotions you use. Consider allergy testing to see what you’re body might be sensitive too, so you can work on reducing the use or ingestion of any inflammatory substances for your body. It might not solve the problem, but it will certainly help! I never got switched to non-steroidals, ended up going thru detox to get off prednisone and have had no problems for the last 3-4 years. Hang in there. My last bout was 9 months living in the fog.

      • sonia

        Thnx Aliesa. I think I she go for a 2nd round of iv steroid dose. My worry is steroid shdnt detoriate my situation more like 1st time. Also can you suggest if working on laptops 9 hrs will worsen the situation.

        • Aliesa George

          I’m not a doctor, so best to consult with the experts, I’m not sure 9 hours a day looking at a computer screen will help the situation, but I doubt it’s the reason for the problems. It’s my understanding that the vision loss experienced is due to the pressure that’s created from the inflammation on the optic nerve. More inflammation = a greater loss in vision. The last flare I had I was on high doses of steroids for MUCH longer than I believe is healthy for the body, but it was necessary to keep the optic nerve inflammation in check. Every time we attempted to wean me off and lower my dose, my vision got worse. But even on a consistent low dose of prednisone which helped offset my headaches and discomfort – I still had vision impairments. It’s a balancing act. Optimally, the IV dose should knock out the inflammation, calm the system down and by the time you wean off everything the nerve is better. If it’s not – then it’s a balancing act of finding the lowest dose of steroids possible to keep the nerve calmed down while you make additional lifestyle changes to reduce all sources of potential inflammation in the body.

          Sending healing prayers to you that this resolves quickly. Hang in there…

    • Claire

      Thank you so much for writing this blog, I’m in my 3rd week of optic neuritis and havevlostvtgevsightnin my left eye.i am awaiting results of an MRI and your blog is thevonlybthing I have found on the internet that gives me some hope that I won’t have ms. I’m interested to hear that it could be caused by stress this year has been difficult to say the least. We lost my grandad in January, then a close friend of mine was killed age 30 in a car accident, my parents are having some issues which I have been dragged into and I have 2 young sons to look after. The ophthalmologist did not prescribe steroid treatment but said it was more of a wait and see what happens. I am interested in alternative therapies that may help. I’m from Wales

      • Len D.

        Your condition might just be stress related. Try to relax and destress and do some eye exercise, up-down left-right, several times a day. I’m not sure if this will work but that’s what the naturopath doctor advised my husband to do.

  21. dan

    Hello ,

    I was diagnosed with ON at my right eye . It s been 3 months now , i have regained most of my vision … but i have an issue with the way i see luminous LCD screens an white in general I see white too bright and i cannot read from LCD screens and the contrast is a bit off .I have made a lot of tests and excluded for now MS, Borellia ,Lupus etc … . . Did anyone experienced this ? any chance it goes away ? i would really would like talk to someone who went trough this !( )

    I know there is no treatment but my ophthalmology doctor prescribed me the following meds i think it has helped me a little .

    Milgamma 2 a day
    Thiogamma 1 a day
    Sermion 1 a day
    Epinerv 1 a day

    • Aliesa George

      Hi! I can tell you that from my experience with now 3 flares of Optic Neuritis that the brightness/darkness and clarity is different in each eye. I have had flares at different times in BOTH my right and left eye, but one eye seems to have a little more residual damage. In one eye, everything is a tad more fuzzy, and in the other eye while objects are clear, I don’t see as much light. Sometimes this is more noticeable to me than others, but I think my brain has figured out how to compensate. I’m still able to work on the computer. It may continue to improve a little with time. I remember going through a phase when my ON was active that I didn’t read or do much on my computer because it was too stressful on my eyes. You may be able to adjust the contrast on your screens to make it easier to see, or right now is an opportunity for you to shift your focus to other things for a bit and not push your eyes to be in front of a computer screen. Best of luck to you for a full recovery!

      • dan

        10x for your reply Aliesa George .

        What do you think about this , i ve done methylprednisolone 1000mg 3days 2 months and a half ago . I am tempted to go for another round 500mg methylprednisolone for 5 days ?! it ‘s been 3 months and the last 2 months the vision has not improved much , i still see blurry , colors are overexposed , contrast is bad !
        Anyone done the ONTT twice ? in 3 months ?! would you go for it ?!

        • dan

          I forgot to mention … i am desperate 🙂 though the first push of corticosteroids broght me from no vision to seeing something …it s not satisfactory . I willing to risk it with a second ONTT shock treatment . Any reasons why i should not do it ?!

        • Aliesa George

          Hi Dan, The very first time this happened to me I did a round of 250mg by IV every 6 hours for 3 days and then whittled down to 0mg in 30 days. The second time, I attempted natural therapies to avoid the steroids, but after a few weeks with no positive results from my efforts, I went in begging for steroids so I could see, and it was another round as above… The 3rd time this happened to me, the protocol changed, and the taper time was cut in half. 3-days after my taper, I rebounded back to where I started… And we immediately did round 2 of IV. I then was unable to taper completely off… so spent about 9 months trying to wean away from oral steroids, but could never get below about 30mg. Have to tell you this trashed my body, but restored my sight… It actually took a DETOX program for me to get off my oral steroid dose and not rebound with a flare. But my guts are shot, my adrenals toasted, I lost most of my hair during that 9months. My weight… well you know what happens on steroids! I’m still working on getting everything back in working order. I understand the desperate part. And I know how much steroid use helps reduce the inflammation. I don’t think there is any guarantee that if you get the inflammation out your vision will be restored to 100%. During my long flare, even on 30mg a day, my sight was not great, it just wasn’t getting worse, and didn’t hurt quite as much. Hang in there! Not sure where you live, but hopefully you’ve got a good doctor to help guide you with this.

  22. maxine smythe

    Hi. I have had optic neuritis 3 times in the past 2 years and now I think that I may possibly be getting another flare up. I am totally petrified of being blind but have not really received any help other than being diagnosed with RRMS. Have seen a neuro who is also an eye specialist and all I have been told is that they don’t know how bad it will get and how much it will heal or when
    Not received steroids as I was told it makes no difference in the long run. And quite honestly the side effects appear to be worse than the disease particularly if not started early. Being in UK doesn’t help as the don’t regard MS flares as an emergency and last year when I requested steroids by the time they found a bed it was beginning to slightly improve !

    Now I am wondering if I actually have Devics ( but maybe I should stop going on to Dr Google!) Is there anything else I can do or do I just have to sit it out again?

    • Aliesa George

      Hi Maxine,

      I’m not a doctor so can’t really give you any sort of a solid answer, but can share my experience from having flares, dealing with docs, taking long-term steroids, and alternative therapies… If you’re not getting the help you need from the doctors you’re seeing, find new ones! From my experience I think it is pretty accurate that they can’t tell you when, or if you’re eyesight will return or in what condition it will be. While I am not happy with how the steroids have wreaked havoc on my body, I also know that they are the reason I still can read 20/20 on the eye chart. I attempted acupuncture instead of steroids for one flare, but finally had to give in and take them anyway… And that is the flare that has left my vision most noticeably impaired – for me I just don’t see as much light with that eye. The benefit is the mega-doses quickly get the inflammation off the nerve, which helps restore sight if the nerve is not damaged. The longer there is pressure on the nerve the higher the risk of more permanent damage.

      I think INFLAMMATION is the critical part of the equation. And it can be created by many things… exercise, stress, they types of foods you eat, things you drink, food allergies and sensitivities… Any imbalance in your body’s system can create inflammation – hormones, blood pressure, ect… If something is out of whack long enough to create a problem for your body to function normally, it may be setting you up for flares.

      For years I was told my flares were from “stress.” And there wasn’t any other reason for my ON. I don’t agree with this answer… there is always a reason and a health problem is the body’s way of letting us know that we need to take care of something – the challenge sometimes is figuring out exactly what needs to be addressed! If you’ve never been tested for food allergies/sensitivities, that might be something to ask your doctor about. At one point I had a Rheumatologist tell me that what I ate didn’t matter at all in regards to my Optic Neuritis!!! But I’m here to tell you that since I’ve been diligent about sticking to a diet that doesn’t contain foods that my body can’t process well (that I know create inflammation in MY system) I have not had another flare. You can use Dr. Google to research anti-inflammatory diets which might be a step in the right direction. My experience is that even some of these foods I’m allergic to! They can check food/chemical sensitives with a blood test. For me – This information has made a dramatic difference in staying healthy.

      Best of luck to you to get through this flare and hopefully figure out how to calm your system down to keep your system healthy and inflammation-free.

    • Len D.

      If you want to know if you have Devics or NMO, you have to request for a blood test. My husband was diagnosed with Devics through that though luckily it hasn’t affected his spine.

  23. Maxine Smythe

    Thank you for your reply Aliesa

    What you have said really makes sense. Unfortunately western medicine just treats symptoms and doesn’t view the body/ mind as a whole.

    I am sure that diet plays a massive part in a lot of diseases and I have cut out wheat and cut down on dairy/ red meat and sugar. But what I do notice is that my symptoms get worse before s during menstruation so there must be a large hormonal link.

    I am so pleased you have not gone on to develop M S but it still must be worrying and frustrating if you are like me you probably want answers . If the specialists out there do not know the cause they certainly won’t be able to find a cure. But I still live in hope !

  24. Natasha

    Just wondering, when they told you- no MS- Did you have a lumbar puncture done and were there any abnormal proteins found in your fluid?

    • Aliesa George

      Hi Natasha,
      I’ve had 3 ON flares and so far no MS diagnosis. Each time they’ve said it’s “stress.” Which is, we have no idea why… I have not had a lumbar puncture procedure done. (Can’t say that’s something I’d want to volunteer for.) Think during my last flare the neurologist suggested that they might want to do this, but when he’d completed all the other tests he wanted to run, they didn’t see a need for it.

  25. dan

    I’m 6 months since my first ON attack now … i still am very sensitive to heat , every time i get a hot shower or my body gets heated my vision gets worse(then it normaly is ) . How much time does it take for the heat sensitivity to go away ? My vision is slightly better … but far from how was before ! In the RMN done with a 3 tesla machine says i have a 3mm/2mm demyelination on the optic nerve will it get better… my vision ?!

    I ve read very good things about helmithic therapy has anyone tried it ? it suppose to combat inflammation … i have started Avonex i am considering doing helmithic therapy also.

    PS: lumbar puncture doesn’t hurt i have done it without anesthesia .

  26. Amanda

    I was diagnosed with MS after going to the Docs with a sore eye and ‘funny’ vision a month ago. I was sent straight to hospital for a cat scan and MRI. That day I also saw an Opthomologist who basically said after talk of hospitalising me for IV steroid treatment etc that I had MS and to go home and he would ring the following day. I never received a call so went back to my Docs somewhat upset with the news and no follow up. It was confirmed it was MS, and my Doc made another appointment with the Opthomologist for the following week. I went to see him again, by this time my eye had gone from still having 20/20 vision with a few blotches to almost blind! He looked at it, told me to go home and come back in a week and in this time he would book me a neurologists appointment. I went back, still no improvement, he took another look, hadn’t booked the neurologist and advised he d call the following day with details for the nuerologist. Again, no phone call and two days later he finally returns my call saying he is onto it but no date set. I went back for another appointment (4 weeks after my diagnosis of MS) with still no nuerologist appointment. He takes a look at the eye, still no improvement, advises for blood tests and to come back in two weeks… The following day I get a call from him leaving a voice message advising I dont have MS and he has now prescribed a two week course of 100mg of prednisolone per day (even though he originally told me if it is MS this speeds up the MS) and to pick it up from reception and to make an appointment in another two weeks…. I tried calling back for more info and it took him 5 days and 4 messages from me before calling back to advise if it was MS the swelling would have gone down by now (even tho when it was MS I was advised it could take up to 12 months to go down) In the last month I have been told so many different things by the same Opthomologist I just don’t know what to do… Take steroids or don’t take steroids? With all the different things he has told me it is now hard to believe I dont have MS, I have already changed my life to suit the fact I had it (job change as I lost my conditions on my drivers licence etc) and now this ?!?!? I still don’t understand how within 4 hours of me being In hospital the diagnosis of MS was made?!?!? I’m frustrated, confused and just don’t know what to do!

  27. Len D.

    My husband was diagnosed with Optic Neuritis in Dec 2010 on his left eye. The doctor suggested steroid medication but didn’t go for it. Through research I read that Nordic Naturals Omega Vision has helped some people with eye problem including ON. As such, my husband started taking it and his vision was fully recovered in a year’s time. After 3 years, in March 2014, the right eye got affected also and this time he went completely blind. Due to severe pain, my husband went for intensive steroid treatment via IV for 3 days and prednisone for the succeeding 2 weeks. MRI showed massive inflammation of the optic nerve but no lesion. However, blood result shows abnormally high number of NMO (neuromyelitis optica). Thus, he was diagnosed to have NMO or Devics disease. So far, the MRI showed that the spine has not been affected yet. With the steroid treatment, the pain was gone but the postnasal drip and the vision came back up to 20% only. After 4 months, so far the vision is back to 40% only.. The Neurologist prescribed Mycophenolate or Cellcept to prevent the NMO from attacking the spine but this medication didn’t seem to help bring back the vision anymore nor the Omega Vision. We are looking at an alternative medicine, which is acupuncture, but not sure if this can actually help.

    • Aliesa George

      Hi Len,
      Hang in there and keep searching for alternative solutions… Personally, I tried acupuncture on my 2nd flare, hoping to avoid steroids – but was unable to get relief with it. I can only hope that you’re results with it will be better than mine. Acupuncture is a wonderful therapy, and works very well for many issues. They best help I’ve had getting off steroids and getting my ON to resolve was going through a full detox program, that involved many supplements (and IV supplements,) to feed my body better nutrition, as well as lots of sauna time to get whatever toxins were holding onto inflammation out of my system. From there, learning what foods and chemicals my body is sensitive to, and eliminating them from my diet, and skin care regime has helped immensely. Wishing your husband the best for a full recovery.

  28. Marc

    Iv had ON since December 2013 so 10 months. Trying to find anyone with ON without MS on the internet iv found difficult. The doctors tell me they don’t know why I got it. For me my vision just got worse everyday for 4 or 5 days until I could just see a yellow blur with small vision round the outer corners. Iv only had that one flare but my recovery progress is so slow I can only tell with colour blindness charts or certain objects if its improving. My vision now is 75% ruffly. For me the reason why i think I got it is malnutrition, because I cycle a lot and wasn’t really eating a proper diet and it was cold because of the weather but I have been cycling for over 10 years so its just a guess. I do sometimes and always have thought iv got a weak immune system but that’s also a guess. Does anyone know the recovery times and does it vary with different people?. Do the strengths of flare ups vary with different people?

  29. Marc

    Iv had ON since December 2013 so 10 months. Trying to find anyone with ON without MS on the internet iv found difficult. The doctors tell me they don’t know why I got it. For me my vision just got worse everyday for 4 or 5 days until I could just see a yellow blur with small vision round the outer corners. Iv only had that one flare but my recovery progress is so slow I can only tell with colour blindness charts or certain objects if its improving. My vision now is 75% ruffly. For me the reason why i think I got it is malnutrition, because I cycle a lot and wasn’t really eating a proper diet and it was cold because of the weather but I have been cycling for over 10 years so its just a guess. I do sometimes and always have thought iv got a weak immune system but that’s also a guess. Does anyone know the recovery times and does it vary with different people?. Do the strengths of flare ups vary with different people?

    • Aliesa George

      Hi Marc, I still don’t have a reason for my ON flares. All the doctors can tell me is to keep my stress level down! Not really much help for avoiding future flares. The vision loss I’ve experienced with each has been different, (it’s actually affected both my eyes, but thankfully not at the same time!) And my recovery time for each has been completely different. Hang in there, and keep working on ways to improve your health, and reduce inflammation in your system.



  1. “We take our sight and health for granted until it’s gone.” - [...] lesson we all to often choose to forget until it happens to us.  Aliesa defines her struggle with Optic…
  2. cafe minceur - cafe minceur... [...]Living with Optic Neuritis | Centerworks Blog[...]...

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