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Living with Optic Neuritis

Posted Sep 27 2010 10:41pm 2 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!

Comments (2)
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Good Evening,

I was just reading your post and found it very interesting, because I too have had reoccurent Optic Neuritis. My first episode happened June 2010. I opted not to take prednisone due to my neuro-opthamologist giving me the statistic on the prednisone. Fortunately, my first episode only lasted about 5 weeks and my vision basically returned to normal without treatment. During those 5 weeks I visited a neurologist who ruled out MS and Rheumataligist who suspected Lupus even though I have not enough markers to rule Lupus. I do have a "significantly" high Ana rate which is showing Auto-immune activity. My second episode happened about two months after the first eye completely recovered. This time is occured in my other(right)eye, this eye was much less severe and recovered in two weeks again without treatment. Like you mentioned, even though my vision is totally back something just does not seem the same(dimmer). The specialist seem to have opposing views. Neuro-opthamologist is not in favor of steriods because she says we do not know what we are treating. The Rheumatologist is pushing drugs. Actually, I just had a visit today with him and wants to put immune suppressent drug, which scares me half to death. He basically told me my body is sending off warning signs and if I do not treat them I could possibly be blind. Not sure how I am feeling about the immune-suppressent due to test they have to do to see if I can tolerate the drug to begin with. Another thing they have teated me for is Devic's disease which is closely related to MS, but fortunately my test for that came back negative. So I too am frustrated and emotional about what is going on with my body. Came across your blog looking to find answers, glad that I came across you message. 

Frustrated in Va



I also have optic neritis.  I starting having the problems the end of feb. of this year and i was in the hospital march1-4 for the steroid iv.  Was put on the prednazone and  had bad problems with it.  Well it went away and now i have it in the other eye.  I had an mri and that was clean, bloodwork  and everything is normal but i keep getting this and no one knows why.  I go to the nerologist again tomorrow and i hope to find something out.  It is driving me crazy and i dont know what to think anymore. I will pray for you and hope you get better.  I just cant believe that no one can figure out what is the casue of this and what we can do to stop it. 
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