Aa
Eye Pain- Help Please This is New
Hi everyone. Thanks for reading this. I am having terrible pain in my eyes like nothing I have ever had before. It is not like a headache/migraine. The pain is actually in the eye ball and I have can't read a book at all ( the words are like 2
lines together and I can only watch tv with the lights of for a few minutes. The pain changes but never goes away depending on which way I turn my eyes (not my head).
This has been going on for a few days and when I called the doctor she said she wants to see me on Monday but if it gets worse over the weekend to call her service and they will give me steroids in the hospital.
Help please!! What is it and when will it get better? This took almost 20 minutes to type and now I must lay down and close my eyes.
Erin
Erin,
ITS GOOD TO HEAR YOU ARE GETTING TREATMENT.
NOW GET SOME REST FOR THOSE WEARY EYES!
LULU
ITS GOOD TO HEAR YOU ARE GETTING TREATMENT.
NOW GET SOME REST FOR THOSE WEARY EYES!
LULU
It is official. Thank you all for chiming in and helping me through my first official ON flair.
I have received 3 of 5 days of the Solumedrol and the pain is a lot better already but the vision not so much. I was at the neuro today and she confirmed the flair and gave me particulars (which I don't remember but my sister wrote down, inflammation and something about the blurred edge of part of the left eye)
Anyway, she is now concerned that my meds aren't holding me between the flairs and doesn't like this being a first for me so she has me going to an MS specialist that also deals with connective tissue diseases for a second opinion of our current treatment regimen and any possible missed ideas.
Can't type/read anymore. I will keep you all posted and just wanted to say THANK YOU ALL!!!!!!
Erin :)
Great question and one I think about also. But, we are getting off-topic for Erin's thread. I'll start a new discussion with my thoughts on "Why use steroids?"
This would be a good discussion for Dr. Kantor. I can't ask it as he seems disinclined to answer my questions.
Quix
This would be a good discussion for Dr. Kantor. I can't ask it as he seems disinclined to answer my questions.
Quix
Thanks for responding. Gives me a lot to think about. If this is the case, why not just take pain medication for a week or so and spare oneself "the potential risk of serious adverse effects from this treatment.?"
In your opinion, what is the benefit of the use of Solumedrol during an exacerbation? If any?
In your opinion, what is the benefit of the use of Solumedrol during an exacerbation? If any?
Please - this is a great use of the forum and me. We should always speak up when something goes against what we have understood. Sometimes you get new information and sometimes I get corrected information. Most of what is known about treating optic neuritis we got from the ONTT a study/trial begun in 1987 or so and concluded 5 years later. However, about 65% of the participants were followed up to 15 years.
The "outcome" that I have referred to is the quality of vision.
The Optic Neuritis Treatment Trial was a long-term study using 452 participants and studied, among other things the comparison of using high dose methylprednisolone (Solumedrol) against low dose oral prednisone against placebo. They measured acute relief of pain and acute recovery of vision, quality of life and outcome of vision at 5 years and beyond.
This trial is still considered the Gold Standard for setting guidelines for the treatment of optic neuritis. The results showed that the use of Solumedrol at 1gm per day for 5 days was the most successful at relieving severe acute eye symptoms like pain. It also was faster at restoring some visual acuity than the other two groups. However, in the end there was NO benefit to treating ON in terms of ultimate visual acuity. Generally, Solumedrol is used when the acute vision in the affected eye is very low or when there is significant pain.
Low dose oral steroids were shown to be a bad thing, because they increased the number of attacks of optic neuritis that the people suffered. This finding had been challenged, but follow up studies added evidence to the finding. However, the group that received low dose oral steroids did not have a worse longterm outcome of vision than the Solumedrol group or the untreated (placebo) group.
The ONTT also showed that while use of IV steroids appeared to protect against the immediate conversion from a CIS to full-blown MS (within the first couple years), the protection did not hold up in the long term.
It is commonly misunderstood that use of IV steroids preserves vision in the long run. this has not been found to be true. But, it can relieve acute pain and acute vision loss. Here is a quote from eMedicine - "Optic Neuritis, Adult" from Medscape. (This whole article is great, well written and not too technical)
"""Medical Care
The ONTT was a carefully performed randomized clinical trial and yielded useful information. Despite the ONTT, the treatment of ON remains somewhat controversial. From a vision standpoint, observation without steroid treatment versus intravenous steroid treatment showed no difference in ultimate visual outcome at the 5-year mark.
The ONTT showed strong evidence against the use of oral steroids in isolation in the treatment of ON, because oral steroids alone caused an increased rate of recurrence of ON. Intravenous steroids (methylprednisolone 250 mg qid for 3 d with oral steroid taper) decreased the short-term risk of development of MS in patients with CNS white matter plaques, but had no long-term protective benefit from MS. Intravenous steroids do little to affect the ultimate visual acuity in patients with ON, but they do speed the rate of recovery. Some clinicians advocate intravenous steroids in patients with severe visual loss or bilateral visual loss.
Intravenous steroids are sometimes administered in an outpatient setting or at home. Admission to the hospital is recommended for the duration of high-dose intravenous steroid treatment because of the potential risk of serious adverse effects from this treatment.""""
eMedicine period com
Erhan Ergene, MD, Clinical Assistant Professor, Department of Neurology, University of Illinois College of Medicine at Peoria; Medical Director, Comprehensive Epilepsy Program and Clinical Neurophysiology, Illinois Neurological Institute at OSF Saint Francis Medical Center
Jan 4, 2007
***********************************
The study group for the ONTT also published a 15 year final report for the study. this came out in the last couple years. This is also from Medscape
http://www.medscape /viewarticle/576405
"""Visual Function 15 Years After Optic Neuritis: A Final Follow-up Report From the Optic Neuritis Treatment Trial
Optic Neuritis Study Group
Ophthalmology. 2008;115:1079-1082
Summary
Examinations were conducted on 294 patients (65% of the original group). In addition, a quality-of-life (QOL) questionnaire on visual function was administered. Overall, 72% of affected eyes had visual acuity of 20/20 or better, with two thirds of patients having 20/20 or better vision in both eyes. In most patients there was little change in vision between the 10-year and 15-year follow-up examinations. Six patients (2%) had visual acuity of 20/40 or worse in both eyes. There was no significant difference in visual function among the 3 treatment groups. Visual function was slightly better in patients without MS compared with those with MS, and QOL measures were lower in patients with worse vision and when other neurologic problems from MS were present.
Comment
The long-term prognosis for visual function in patients with unilateral acute demyelinating ON is good. Patients who developed MS tended to have worse visual function than those who did not. The findings of the current report also emphasize that treatment with intravenous corticosteroids for the initial acute episode does not alter the long-term visual course."""""
**********************************
I can find another dozen cites if you wish, because I know this is a point of great misunderstanding.
I hope this helps.
Quix
The "outcome" that I have referred to is the quality of vision.
The Optic Neuritis Treatment Trial was a long-term study using 452 participants and studied, among other things the comparison of using high dose methylprednisolone (Solumedrol) against low dose oral prednisone against placebo. They measured acute relief of pain and acute recovery of vision, quality of life and outcome of vision at 5 years and beyond.
This trial is still considered the Gold Standard for setting guidelines for the treatment of optic neuritis. The results showed that the use of Solumedrol at 1gm per day for 5 days was the most successful at relieving severe acute eye symptoms like pain. It also was faster at restoring some visual acuity than the other two groups. However, in the end there was NO benefit to treating ON in terms of ultimate visual acuity. Generally, Solumedrol is used when the acute vision in the affected eye is very low or when there is significant pain.
Low dose oral steroids were shown to be a bad thing, because they increased the number of attacks of optic neuritis that the people suffered. This finding had been challenged, but follow up studies added evidence to the finding. However, the group that received low dose oral steroids did not have a worse longterm outcome of vision than the Solumedrol group or the untreated (placebo) group.
The ONTT also showed that while use of IV steroids appeared to protect against the immediate conversion from a CIS to full-blown MS (within the first couple years), the protection did not hold up in the long term.
It is commonly misunderstood that use of IV steroids preserves vision in the long run. this has not been found to be true. But, it can relieve acute pain and acute vision loss. Here is a quote from eMedicine - "Optic Neuritis, Adult" from Medscape. (This whole article is great, well written and not too technical)
"""Medical Care
The ONTT was a carefully performed randomized clinical trial and yielded useful information. Despite the ONTT, the treatment of ON remains somewhat controversial. From a vision standpoint, observation without steroid treatment versus intravenous steroid treatment showed no difference in ultimate visual outcome at the 5-year mark.
The ONTT showed strong evidence against the use of oral steroids in isolation in the treatment of ON, because oral steroids alone caused an increased rate of recurrence of ON. Intravenous steroids (methylprednisolone 250 mg qid for 3 d with oral steroid taper) decreased the short-term risk of development of MS in patients with CNS white matter plaques, but had no long-term protective benefit from MS. Intravenous steroids do little to affect the ultimate visual acuity in patients with ON, but they do speed the rate of recovery. Some clinicians advocate intravenous steroids in patients with severe visual loss or bilateral visual loss.
Intravenous steroids are sometimes administered in an outpatient setting or at home. Admission to the hospital is recommended for the duration of high-dose intravenous steroid treatment because of the potential risk of serious adverse effects from this treatment.""""
eMedicine period com
Erhan Ergene, MD, Clinical Assistant Professor, Department of Neurology, University of Illinois College of Medicine at Peoria; Medical Director, Comprehensive Epilepsy Program and Clinical Neurophysiology, Illinois Neurological Institute at OSF Saint Francis Medical Center
Jan 4, 2007
***********************************
The study group for the ONTT also published a 15 year final report for the study. this came out in the last couple years. This is also from Medscape
http://www.medscape /viewarticle/576405
"""Visual Function 15 Years After Optic Neuritis: A Final Follow-up Report From the Optic Neuritis Treatment Trial
Optic Neuritis Study Group
Ophthalmology. 2008;115:1079-1082
Summary
Examinations were conducted on 294 patients (65% of the original group). In addition, a quality-of-life (QOL) questionnaire on visual function was administered. Overall, 72% of affected eyes had visual acuity of 20/20 or better, with two thirds of patients having 20/20 or better vision in both eyes. In most patients there was little change in vision between the 10-year and 15-year follow-up examinations. Six patients (2%) had visual acuity of 20/40 or worse in both eyes. There was no significant difference in visual function among the 3 treatment groups. Visual function was slightly better in patients without MS compared with those with MS, and QOL measures were lower in patients with worse vision and when other neurologic problems from MS were present.
Comment
The long-term prognosis for visual function in patients with unilateral acute demyelinating ON is good. Patients who developed MS tended to have worse visual function than those who did not. The findings of the current report also emphasize that treatment with intravenous corticosteroids for the initial acute episode does not alter the long-term visual course."""""
**********************************
I can find another dozen cites if you wish, because I know this is a point of great misunderstanding.
I hope this helps.
Quix
A mild episode of optic neuritis and later double vision is what got me my first MRI and Solumedrol IV. (and FINALLY dx of MS) My neuro explained that even microscopic involvement of the optic nerve can cause pain and vision problems. My vision returned to normal. I would not hesitate for a second to take steroid treatments for vision involvement.
My understanding is that this treatment temporarily dampens the immune system, thus greatly slows the inflammation that does damage. Therefore, does it not hinder potential vision loss? And with any luck shorten the attack? I'm asking no one in particular, except maybe Quixotic where she wrote "steroids won't change the outcome." This is not my understanding of high dose Solumedrol when used to "rescue." My intention is not to argue here, but rather to learn what others know or have been told.
On a lighter note, when I took the Solumedrol I could not stop thinking about and eating large quantities of food. It was a food orgy of sorts. LOL Endless thinking of ice cream and what I could sprinkle or pour on top of it, then thoughts of cheeseburgers!......tasty fries with salt!.......hmmm with ketchup!.......might as well get some onion rings too!........ah yes with ranch dressing! I wasn't thinking about steaming vegetables like I usually do.
My understanding is that this treatment temporarily dampens the immune system, thus greatly slows the inflammation that does damage. Therefore, does it not hinder potential vision loss? And with any luck shorten the attack? I'm asking no one in particular, except maybe Quixotic where she wrote "steroids won't change the outcome." This is not my understanding of high dose Solumedrol when used to "rescue." My intention is not to argue here, but rather to learn what others know or have been told.
On a lighter note, when I took the Solumedrol I could not stop thinking about and eating large quantities of food. It was a food orgy of sorts. LOL Endless thinking of ice cream and what I could sprinkle or pour on top of it, then thoughts of cheeseburgers!......tasty fries with salt!.......hmmm with ketchup!.......might as well get some onion rings too!........ah yes with ranch dressing! I wasn't thinking about steaming vegetables like I usually do.
Erin, that is the usual and normal dose for MS flare ups. Within the normal range of medicine it is a HUGE dose, so if they hadn't dealt with MS before they probably freaked. Don't worry. That's the dose. 1 gram or 1000 milligrams of Solumedrol IV each day from 3 to 5 days typically.
I'm so glad you got the process started.
Quix
I'm so glad you got the process started.
Quix
Erin,
We are all glad you went in and have started the Solumedrol. This may seem like a large dose to those ER docs who don't encounter MS flares, but it sounds reasonable to me . It takes a larger does to quiet this down.
Rest better tonight,
Lu
We are all glad you went in and have started the Solumedrol. This may seem like a large dose to those ER docs who don't encounter MS flares, but it sounds reasonable to me . It takes a larger does to quiet this down.
Rest better tonight,
Lu
Thank you all for your comments and the push that I needed.
I called the doctor and went to the hospital. They have me on 5 days of Solumedrol IV 1gram each day. After today's long ordeal it will be out patient and won't be so bad.
Does anyone know if that is a big dose? The doctor's made such a big deal about the dose being "huge" that I got a little paranoid until they got my neuro on the phone.
Thanks again - I will keep you posted when the eye pain quiets down - Hope you are all well.
Erin :)
I have been in your situation a few times and my best recommendation is that the sooner you start with the steroids the faster the pain will go away or at least improve. Sometimes we wait too long for treatment, and the eyes could damage and we would have to wait for a long time for our vision to improve. I had to wait for a whole year to improve double vision.
PLEASE DON'T WAIT ANYMORE AND GO TO THE HOSPITAL!!!!!!!!!!!!!!!!!!!!!!!
BEST OF LUCK.
ZULMA
PLEASE DON'T WAIT ANYMORE AND GO TO THE HOSPITAL!!!!!!!!!!!!!!!!!!!!!!!
BEST OF LUCK.
ZULMA
Erin,
My husband bought me a book called 2008 Bottom Line's Healthy Breakthroughs. I red an article on MS and there is a new controversial drug for MS called Tysabril. It claims to reduce vision loss. I know nothing about it but maybe someone in the community does.
My husband bought me a book called 2008 Bottom Line's Healthy Breakthroughs. I red an article on MS and there is a new controversial drug for MS called Tysabril. It claims to reduce vision loss. I know nothing about it but maybe someone in the community does.
I agree with everyone else...go to the hospital, don't stay in pain!
Sending you hugs
terry
Sending you hugs
terry
That pain sounds awful; I think you shouldn't wait until Monday. I don't want you to be in this much pain all weekend!
I won't write much, since it will hurt you to read it, but I want you to know I care and am hoping for a quick resolution to this episode of ON (Quix knows what she's talking about), and that you'll be able to come see us without pain.
Hugs,
Kathy
I won't write much, since it will hurt you to read it, but I want you to know I care and am hoping for a quick resolution to this episode of ON (Quix knows what she's talking about), and that you'll be able to come see us without pain.
Hugs,
Kathy
Hi Erin,
I'm so sorry your eyes are doing this!! You know Quix is right, and maybe you need to go on and have the steriods.
If you wait til Monday, hope things get better quickly.
Take care,
doni
I'm so sorry your eyes are doing this!! You know Quix is right, and maybe you need to go on and have the steriods.
If you wait til Monday, hope things get better quickly.
Take care,
doni
Erin,
I agree with Quixotic 1 Please just go ahead and go to the hospital. There is no use for you to stay at home all weekend in pain. Your so kind to everyone and I just want the best for you. Let me know how your doing.
I agree with Quixotic 1 Please just go ahead and go to the hospital. There is no use for you to stay at home all weekend in pain. Your so kind to everyone and I just want the best for you. Let me know how your doing.
that pain sounds horrible...I get eye pain, but it's more of a dull ache behind my eyeball...usually my right one, but it can change to the left side too. I sometimes cover one of my eyes to help see better.
I hope you get some meds to help with this... Good luck on Monday and take it easy this weekend.
take care
wobbly
undx
I hope you get some meds to help with this... Good luck on Monday and take it easy this weekend.
take care
wobbly
undx
You are describing optic neuritis. No need to wait it out. The steroids (IV) are best for quieting the pain. Now, the steroids won;t change the outcome, any loss of vision, but they usually will relieve the acute pain.
Take care of yourself. When you see your neuro she will order the steroids anyway, likely.
Quix
Take care of yourself. When you see your neuro she will order the steroids anyway, likely.
Quix
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