Optic neuritis pain strategies/suggestions?

[LibbyZ]

Hi everyone,

I am a lurker. A year ago, I woke up with a numb, pins and needle pain in my ankle. After a few days of tripping, being uncomfortable, I went into the Dr. I had strange moments of imbalance, tremors, items were slipping from my grip and breaking on the ground. I then had a discomfort in my right eye and visual disturbances. Back to the Dr, then was seen by a Neuro and Neuro opthamologist and went through Brain/Spinal MRI's and a VEP test.

4 Syrinx's were found on my MRI's, but no lesions. My VEP came back abnormal with latency in the anterior portion of the optic chiasm and history of demyalination of the optic neuritis.

The neuro said, lets give it some time and come back in 6 months.

It has been about 8 months. I had still experienced fatigue, cognitive changes, etc but made many lifestyle changes--mostly raw diet, increase in exercise. I love my job as a pediatric occupational therapist and my life. Everything was pretty manageable.

Two weeks ago, my right eye pain came back with a vengeance. I went to the Dr hoping for possibly a steroid or some sort of thing for relief, but was told it was probably migrainal and not ON. I filled the prescription for tramadol and fioricet and have used them in limited doses since I am not a fan of medication. I am going to the Opthamologist tomorrow--yay!

I bought an eye-patch last week to help me be able to try and engage in activities around the house and it helps--sort of.

Anyone have any tips, suggestions? Any tips on questions or ways to advocate for my care at the opthamologist?

[Redwings]

Hi LibbyZ:
It's going to be difficult for you to "advocate for your care" at the ophthalmologist when what you what violates the established treatment protocol for optic neuritis.

The protocol for treatment of ON, which arose from the 15-year Optic Neuritis Treatment Trial (ONTT) doesn't allow for the use of steroids to treat eye pain without significant vision loss. The protocol allows for high-dose steroids -- the level used to treat significant vision loss and organ rejection -- which is too high risk and overtreatment for pain only. The ONTT found that study subjects who were treated with low-dose oral steroids were more likely to develop another episode of ON that were subjects who were treated with high-dose IV steroids AND those who weren't treated with steroids at all.

So even if your eye pain is from low-grade ON, pain from ON doesn't call for high-dose steroids, and the contraindication against low-dose steroids is how it came to be that they aren't used for ON pain only. You won't be "advocating for your care" if you want something that's been shown to put you at greater risk of recreating the very thing you're trying to avoid.

Here's the part you're not going to want to hear. If your doctor prescribed pain medication that you're not taking as prescribed, then you can't reasonably expect to get pain relief. And to not take medication as prescribed but then want to switch to another med because it isn't working doesn't show that you don't like to take medication, it shows that you don't like to take medication that you didn't choose yourself. Steroids do their own harm and can cause terrible side effects of their own.

The eye patch isn't helping you with pain because the pain is mostly caused by eye movement, and the eye behind the patch is still moving in full unison with the unpatched eye. So the tip I would give you here is to not bother with the eye patch if your only goal is to eliminate pain -- it really isn't working.

If the ophthalmologist agrees that your eye pain is from low-grade ON and agrees to prescribe low-dose oral steroids for your eye pain, you must understand that -- even though it will probably work and you'll be happy in the short term -- s/he will be doing that in violation of the established treatment protocol and putting you at risk for another episode that could be much worse.

But you also have to be prepared for the possibility that the ophthalmologist may not do that.

[Strhuntrss]

Optic Neuritis pain

Redwings .... I am glad I read this post. I too have the ON, was my first symptom. Opthamologist/Neuro did the wait and see approach with me. I had no other symptoms at the time. I got a second opinion from my hubby's college friend who is an Opthlamologist(which I love) that was trained at the cleveland clinic. He said I should have been put on IV steriods at the first sign. He gave me oral steroids since I still had swelling. Weaned down week by week through the month. Said we need to get the swelling down asap. But that not to expect anything different and to pray. (also had blood work out of the wazoo. all normal)

Three months later I had severe fatigue, spasms in the legs, trouble with memory and words. These symptoms come and go. The leg and ON sx have stayed with me. Had an MRI done and couldn't show much because of my braces on the teeth.

Now a year later, ON was getting worse, found an extra blind spot forming in middle of eye. Dr ordered another MRI this time with contrast. Now my dx for my ON could be that I had an eye stroke. They found hemorrage in the subarachnoid. I was told my vision sx is permanant and that they are watching to make sure it doesn't get any worse or that it doesn't go to the other eye.

I too have pain in back of eyes that at times is so severe. Driving is an issue. My periphrial vision is broken and i have the smudge along the lower part of the eye. Reading with right eye is hit and miss. Thank God for my left eye which is perfect 20/20.

When you told the previous post about the ONNT study I was shocked. I wonder if I was given IV steroids at first sx would the outcome been the same. I am a little mad but I am just learning to live with this.

Neuro has my dx as possible MS. When he sees the result of this past mri i wonder if my dx will change and that the other sx I have will be something I will have to learn to live with. I take neurontin for the legs 300mg 3 x a day.

I don't like taking meds either but I know the importance of the help and prevention they provide and also the risk they potentially can give. Medicine is a science, it's not perfect.

It is what it is and the only thing I have a definate on is my faith and good people like you who share their experience and knowledge with others so they too might find the help they need.

[LibbyZ]

I was asking because I know little about the treatment for ON, other than pain med's. My friends mother with a Dx of MS stated that steroids helped her make it through an attack. I do not know much about steroids. I am taking fioricet and tramadol for pain, but the side effects of those are also unsavory. I suppose my response to your reply, is "bummer". I go to the opthamologist this morning. We'll see how it goes.

Have a good day everyone =)

[Strhuntrss]

Hoping appt with Opthalmologist goes well

Good luck LibbyZ with your appt at the opthalmologist. Let us know how it went.

Reading this site has helped me with the kinds of questions I needed to ask my Opthalmologist and my Neuro. I had no clue. Searching the web has, too. That is how I found MSWorld.

I was given great advice from this site about a daily diary. I now have a diary of my day to day symptoms(sx) and tests and meds. This way I can keep track of all that has been done to help my ON and my other sx. It also helps my other drs. They can see when my flares appear and for how long. Whether I take my meds correctly. I am blessed that my Neuro and Opthalmologist keep my PCP up to date in my care. They all know what is going on. It might help you as well.

We are the keepers of our body, our doctors are the helpers in keeping the body sound. God Bless