Living with Optic Neuritis
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!
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.
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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
Daisy, 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! Mary
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
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, Graham
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! Aliesa
Aliesa 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: www.clearspringshealth.com I would also be more than happy to answer questions on this blog site. Michael Broeg, DC Director, Clearsprings
@Michael Brocommen I would like a phone consultation I also have optic neuritis.where can I contact you
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
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, Aliesa
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.
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.
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..
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?
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