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Eye pain / headache/ light sensitivity

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    Eye pain / headache/ light sensitivity

    ON was probably the deciding factor in my formal MS dx 20 years ago. I never recovered full vision after that, but 90% was good. I do not think that is what is going on now because I can still see red, but for the past several months I have had pain in my eyes (right side mostly). Also having extreme light sensitivity and sever headaches - could be caused by squinting from the light?

    I saw my ophthalmologist when this started in May, and he found nothing wrong at that time. He suggested that artificial tears may help some with the pain and mentioned cataracts (which are small at this time).
    I saw him again yesterday and asked if the cataracts could be causing the light sensitivity and the pain in my eye. He said yes, so I suggested that maybe it was time to get them removed. He was all for that, but the more questions that I asked the less sure I am that it will be the answer. I did ask him specifically if there was anything else that could be causing this and he said that there was nothing that he saw.

    He 'reminded' me a couple of times that I had a history of ON and that I do have MS as well as being diabetic, so the results may not take care of my current problems. In his words I would probably have SOME improvement in eyesight, and SOME relief from the light sensitivity.

    Add to that that medicare will not pay the entire expense, and limit the lens they will cover ...
    Well I am feeling more and more unsure of forking over a couple of thousand dollars per eye for a procedure that I am not thrilled about the idea of doing even before I heard that the prognosis for actually "fixing" my problems was so low.

    Wearing glasses is annoying, and I see well enough that I don't wear them unless I am reading, so vision isn't my problem. But something is wrong! I shouldn't be this sensitive to light (was overcast today and raining some and I still had to wear wrap around shades ), and these headaches and the pain in my eyes are driving me crazy. Since the ophthalmologist is not finding anything to cause this can it be "Just MS"? (GRRR I HATE that phrase!). And if it is, is there anything that can be done for it? I go back to MS neuro in November (one week after suggested date for first cataract surgery), but that seems like such a long time to wait.

    I have pretty much decided to postpone the cataract surgery until they are affecting my vision, but Suggestions anyone? Any ideas on what could be going on?

    #2
    I know your post was some time ago, but I have pretty much the same thing going on. I simply know I will need to put on sunglasses when I go out. And if I can, a brimmed hat helps too. The pain comes and go, and I have discovered it may be enhanced by computer/phone screen time. There is a way to reduce the "blue" light on the screen and that has helped the most with eye/head pain for me. Hope this is helpful.

    Comment


      #3
      Do you have dry eyes?

      This can cause pain and glare sensitivity is bad. The eyes don't usually appear sore (redness etc)
      This isn't something an ophthalmologist can see.There is a test that can be done to rate dryness.
      And if its a problem a regime of drops etc can be worked out to help. Just artificial tears isn't enough.
      I have had severe dry eyes for years as well as mouth etc and docs tested me for Sjogrens syndrome- neg. But i believe all the meds i've taken over the years has impacted on my sebaceous glands working correctly. It took several years and a lot of pain before I got this sorted.

      The surgery (RLE) that has been recommended for you may mean you could do away with glasses altogether if you had a corrective lens implanted rather than a plain one.But cataracts don't usually cause pain (especially smaller ones like yours and in both eyes) so I tend to agree with you.

      I would recommend a second opinion and a discussion and testing for dryness with another doc.
      if you have any further queries just ask and check out the threads- re dry eyes.
      Hope this helps.

      Comment


        #4
        Thanks all for the suggestions .

        I WAS told dry eyes but also told to use OTC eye drops .

        BUT the culprit was Gilenya. I stopped taking it and all of these symptoms slowly disappeared . 6 months later I was back to 'normal' and was actually felling pretty good until last week - this in spite of some major stress going on since September of last year .

        Neuro decided that I MUST be on a DMD and decided that Aubagio was the one I should take . Well, being a 'good patient' I started it last week. Now it is like OMG - How am I suppose to live feeling like this ?

        The headaches are gone (oh I still have a slight one at times but motrin stops it) and the light sensitivity is back to the "blue-eye curse" type .

        Comment


          #5
          Extreme Light Sensivity Using...

          While taking Aubagio I developed extreme episodes of Photophobia? which caused loss of vision, blinding white light. It occurred daily, and while eliminating any light sources helped relieve the vision loss, my vision did not usually return to base line for the remainder of the day. I was having multiple episodes per day.

          My MS neuro and I went round for round 'debating' the possibility it was related to Aubagio. Because photophobia is not listed in the official side effects my ms neuro discounted it, but I'm convenience it was related. The other side effects, plus no sign of improvement, along with the onset of photophobia and I stopped Aubagio. It did take about a year for the photophobia to completely resolve.

          BTW, next I tried Tecfederia, which I developed Allodynia while taking, plus again no improvements and side effects weighing me down, (MS is not enough weighing down/sarcasm), led to me to stop taking it. I've come to the conclusion that the current oral meds are not for me.

          I'm now waiting for insurance approval for Rituxan . FYI, I was on Tysabri which was a life changing med for me. But after 2yr mark and higher JC titer than ms neuro was comfortable with, my dream DMT was no longer available to me.

          I also have a long ago history with ON, frequent episodes over a 5yr period of time. Followed up with Diplopia for about 2yrs, but not as frequent episodes as ON.

          Hope this helps you figure out the light sensitivity issue you're currently dealing with.

          Comment


            #6
            Originally posted by msgijo View Post
            Thanks all for the suggestions .

            I WAS told dry eyes but also told to use OTC eye drops .

            BUT the culprit was Gilenya. I stopped taking it and all of these symptoms slowly disappeared . 6 months later I was back to 'normal' and was actually felling pretty good until last week - this in spite of some major stress going on since September of last year .

            Neuro decided that I MUST be on a DMD and decided that Aubagio was the one I should take . Well, being a 'good patient' I started it last week. Now it is like OMG - How am I suppose to live feeling like this ?

            The headaches are gone (oh I still have a slight one at times but motrin stops it) and the light sensitivity is back to the "blue-eye curse" type .
            Same experience, just the other way round. Aubagio is AWFUL.

            No happy skipping, like in the ads.
            Felt just hideous the whole six months.

            So on to Gilenya. Better in that I don't need to set up camp in the lavatory - much worse in that my eyes ache, I can't stand light, and everything hurts.
            Depressed and sleeping 12 hours a day.

            Copaxone may not have been as effective, but I never felt as horrible as I do on the "better" drug.

            What is the point of it? Fewer exacerbations, but I get to feel sick all day, every day.

            Comment

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