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  • Anonymous
      Post count: 93172

      hi sas,
      thanks for the reply. can’t get in to see optho for another 2 days.
      he thinks it might be an “eye migraine”. if it happens again before
      friday, he’ll work me in. an eye migraine sounds better to deal with
      than the other!!

      peggy

      Anonymous
        Post count: 93172

        I’m sorry to have heard of your painful eyes tonight-I suffer similiar. Are you saying that steroids, irradiation and decompression have not helped any or just not enough to relieve your pain and double vision?
        Thanks for being so giving, my thoughts are with you.

        Anonymous
          Post count: 93172

          Hi Adam, The pulse steroid treatments I had Jan 96 did nothing to bring down the swelling. Apparently they do definitely help some people. I hated the treatments as it was done on three alternate days by intravenous and I am terrified of needles. The nurses at the hospital put a towel over my arm so I wouldn’t have to look at the needle during the drip. The next step was the orbital irradiation treatments. Yes they worked. My Opthal likes to wait for six months to make sure the disease has slowed down and stopped before doing decompression. The reason he does decompression before the muscle surgery is because in some cases the decompression surgery can cause double vision. I had double vision from the onset 18 months ago. The decompression surgery was done bilaterally and I had four stitches on the side of each eye. My eyes are still sore from that surgery. I am told he went quite deep and it will take a while to heal internally even though the swelling and bruising went down quite fast. The double vision has definitely gotten worse since my surgery. I go on Jan 20 to discuss my next surgery. After I have the Strabismus surgery for the double vision I will be having eyelid surgery and then hopefully this long ordeal will be over. It is a long haul. One of the things I hate most is the lack of energy I have now and have had for over a year. We just got back from grocery shopping and I am exhausted. Trying to see prices and find things is tough. My husband is a great help but sometimes I like to get off on my own and do it myself. I haven’t driven for nineteen months so I am stuck in the condo a lot and as a result when I get out for a simple thing like grocery shopping I feel excited but alas pay for it when I get home – I guess it is because I am constantly straining my eyes.

          I don’t know exactly what stage you are at but as far as sleeping goes there are a few things you can do. It is because your eyes are not closing that you don’t sleep. You can try tying a scarf around your head but that often comes off during the night. You can try a mask, I had an airline mask that I used but it often came off too. What really worked (and it is a pain every night) is to tape the eyes shut. My Ophthal told me of an ointment to use (since we can’t put brand names on the BB you could e-mail me for the name if you want) and you put this ointment under your bottom eyelid then take some 3M first aid tape and tape your eye shut. This keeps moisture in your eye so they don’t get dry and consequently tear. The other thing you can do if you want to see and not have your eyes completely taped shut is to cut squares of saran wrap and cover the eyes after putting ointment in them and tape the pieces of saran wrap to your face. All sounds a bit much and complicated I know but if it helps you sleep it will be worth it. I hope this makes sense as I am very tired but I wanted to answer as sometimes if I don’t answer a post right away I go for days before I get back to the BB. I probably should have e-mailed you as I didn’t mean to go on this long but maybe it will help someone else. If I can help you in any way let me know.

          Good luck, take care and sleep well!! SAS

          Anonymous
            Post count: 93172

            I’ve been lucky so far in not having any problems with my eyes, but , although more recently, the last 3 months or so I have noticed a few problems. Could someone tell me what the first symptoms are of the eye disease and how fast it progresses. When it starts does it continually bother you or can you have good days where you have no symptoms.
            Thanks Norma

            Anonymous
              Post count: 93172

              Norma all I can say is that you should go and get yourself a base line eye exam.. Everyone on this BB suggested that to me 2 months ago and I ran to the eye dr.. I have always had good vision but I noticed that things seemed blury,lights hurt my eyes, and my eyes always ached.. well after I saw the eye dr. I was told that I had a bad case of dry eye which is very common with people with graves.. the dr told me that I did the right thing coming in right after I was diagnoised this way they have test results to fall back on.. I have to say this BB is the only way I would have known to go so I hope you will soon…
              your friend JoJo

              Anonymous
                Post count: 93172

                Norma,
                We recomend a good baseline eye exam for all newly diagnosed graves’ warriors. It can help in an early eye disease diagnoses and help you to avoid severe damage to your eyes.

                The early symptoms can vary but generally are: watery eyes(the need to keep wiping them as though you are crying), dry eye, pain, photosensitivity(light sensitive), sensitive to wind,air conditioners,
                red or irritated eyes, swelling, proptosis(lids elevate).

                Natural tears can help with the dry eye, which graves’ warriors tend to get anyway. These will help avoid the corneas from geting dry spots and becoming damaged.

                As far as how fast the disease progresses, that is different in each person. Some progress rapidly, while others it’s is much slower.

                I hope this info helps.

                Wishing you well,
                JAN, NGDF
                online facilitator

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