Ischemic Optic Neuropathy

Have any of you gotten this or know someone who has this?

I went to the opthamologist June 28 and both of my optic nerves were swollen. They couldn’t get me in for an MRI for a week b/c since I am diabetic they require blood work before they give me contrast. That is what they said. On July 1, I started losing my vision. I called my opthamologist at home and saw her the next morning when I had no vision in one eye. She didn’t know the apppointment was a week away. She yelled at her staff and said it should have been done within 24 hours.

The optho said that this can happen if your brain swells and you have nerve damage from high blood pressure, are a smoker, or many years of diabetes. The neurologist I saw said that sometimes your brain swells, and we don’t know why, and then the swelling goes down, and we don’t know why. When the brain pressure goes up, the only outlet for that pressure is your optic nerve, and that is what causes it to swell. Whatever! Also, that nerve is misshaped, so that increases the chances of damage.

Vision has started to recover. They say all improvement will be within the first 6 months. We’ll see, I guess.

I am starting to recover, but curious if any of you have had this or know someone who has.had this. If you have questions about what I experienced, let me know.

I have heard of it, but didn’t remember that that was what it was called. It sounds similar to what I experienced in my early 20s. My then ophthalmologist was really concerned about a build-up of (spinal?) fluid around my optic nerves and considered sending me to a neurologist to have it checked out, but once my control improved, it was no longer a problem - like you said, went away and we don’t really know why. I don’t remember any discussion about brain swelling. I had some major vascular damage in the backs of my retinas though and had been running A1c’s over 10 for a good decade despite efforts to the contrary.

My eyes are clean as a whistle now. Had them checked out a few weeks ago, before my 30th b-day. I wish you the best as your eyes recover.

I hope you don’t experience it again. Must have been very scary to experience. I am glad you are better.

I had a definite two-three day optic nerve type headache. When I looked to the sides, I felt excruciating pain, eyes open or not. It then moved to my head - I had a bad migraine the last night, then it all went away. An eye appointment several days later showed no inflammation of the optic nerve, so it is what it is. I don’t know if I had a bad sugar week or not. Random and scary.

I was Dx’d in 1996 with something called "Normal Tension (or Low Tension) Glaucoma with Optic Neuropathy. I had lost about 1/4 of the vision in my right eye - the one with the problem. Treatment was experimental as they had no definite treatment. They did an MRI of my brain because Optic Neuropathy can be a major symptom of Multiple Sclerosis. At that time I had no plaques showing on my brain so the MS was negative. I have a vision field and other checkups for it and all my other eye problems, every 6 months or sooner if a problem occurs. What they did for me was to put me on drops like most with any kind of Glaucoma but not because of high pressure. As I said “Normal tension or pressure” but they experimental treatment was to make pressure in the eye exceptionally low to allow the blood to flow easier to the optic nerve. It has worked fairly well. I’ve had some increase in vision loss but not a lot. I was on two different drops but had to stop one as it began to cut my corneas. I also have to have occasional MRI’s (I’m way overdue) to continue to check for MS. It sounds like your problem is a bit different but thought I’d share to let you know you are not alone. Just make sure you have a top notch doctor who specializes in rare eye disease and/or diabetes. If you have questions, please let me know and I wish you the very best of luck.

Wow Tanya and Karla - I have never heard of this before!

So, Karla and Tanya - were there any warning signs, besides the vision loss? Did you have headaches in your eyes or ??? Just curious, as my optho says my eyes are perfect (after 42 years of diabetes) - but sometimes I wonder if she really knows her stuff and is maybe not doing her job. Can you tell that I don’t trust medical docs sometimes?

Melissa, how did the “major” damage get repaired? I may be heading down that path myself…

Well…I don’t know. This is where you may think I come off crazy. I’m not normally one to go for the homeopathic route, but, at the time, I was seeing a chiropractor who had training in homeopathy. I was already working on trying to control my blood sugars, but he mentioned one day that heart patients and liver patients are encouraged to ingest heart and liver in their diets, so he thought I should try eye. Eww. I know. But I went for it.

He offered me a bovine eye supplement (yes, cow eye ground up into capsules) called Oculotrophin and a buckwheat supplement called Cyruta Plus (which was supposed to be good for capillary health). I took them for maybe 6 months? 9 months? I don’t remember. I was probably 23ish, just out of college. If you google either, the first brand that comes up is what I used.

Within 6 months to a year, my eyes were in much better shape. My retinas were less inflamed, there was no bleeding in them, and the fluid pressure was apparently not a problem anymore. I have no idea if the supplements helped or if it would have happened anyway, but using them was inexpensive and, in the end, my eyes were better. My endocrinologist felt that the resulting improvement was far less important than how it was achieved - whether it was my slightly lower A1c or the nutritional supplements or a combination. What I do know is that I would take them again in a heartbeat.

I wrote this because I was devistated when I completely lost my vision in one eye. I couldn’t put toothpaste on my toothbrush the same way I had before, b/c I had no depth perception. Simple things become frustrating,and driving was no longer safe.

I have no signs of retinopathy. I do not have glaucoma. It is not a problem with the cornea nor retina. It is a dead optic nerve.
My warning sign was when I went into the opthamologist and she noticed that my optic nerves were swollen. Then the next day I started losing my vision. I am not sure they could have stopped it if they treated it sooner or not, but the important thing for me was to take water pills to reduce the swelling of the brain.
The doctor can see that my optic nerve is gray which means the tissue is dead. It was a micro stroke is what she said, that doesn’t show up on an MRI.
They said to take fish oil pills and lose weight. Those things will help me the most.
My research tells me that the most imporant things are to exercize, to promote blood flow to the remaining nerve, and to eat as healthfully as possible and keep my blood sugars as good as I can so my body can get as much help as it can healing. Also, for some unknown reason, after a stroke, which this is, a high fiber diet is helpful to recovery.

We’re here for you, Tanya. hug I’m so sorry that this is happening for you, but wish you a steady recovery. And I appreciate you bringing this up to the community in terms of awareness.

Anna, no headache or anything. I’ve had corrected vision since age 8 so I just went in for my regular checkup. My doc had done a baseline Vision Field on me in my early 30’s due to a lot of Glaucoma in my family and my optic nerves are asymmetrical. He started my test as they all do by covering one eye and with lights off, looking at the chart on the wall. When I covered my left eye, I could not see properly from the right eye. It looked as if someone was drawing a curtain over my R eye when I covered the L. I could see a little bit for a second then the curtain would close and I could see nothing in that R eye. That was the start of the diagnosis. He did a vision field and it showed loss on the nasal side of the eye so he sent me to a doctor in the Houston Medical Center and they did many tests over a couple of weeks. It’s kind of rare and when I researched “Low Tension or Normal Tension Glaucoma”, it said there was no treatment other than experimental. I haven’t looked it up in years now as what they give me is working. Since 1996, I’ve had a small amount of increase in vision loss from it. Being diabetic, I now have other eye problems also now.

I was trying to offer support. Thank you for your support. This community has been great for me.