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  • Anonymous
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    Post count: 93172

    Shannon, my ophthalmologists seem to accept it as part of the
    Graves’ eye disease. My eyes measure 19 and 21, with some lid
    retraction (worse in the eye pushed out farther). Some days I
    have more puffiness, other days less. I still am very sensitive
    to light, and still experience irritation in my eyes. They tear
    in the mornings, but not all day (as at first). Some days they
    look all red, other days clear. Cold or dry weather (or air
    conditioners) make it worse. And, of course, stress really
    seems to settle in my eyes now.

    What are your eyes like? I had a lot of muscle constriction last
    year and had Botox injections to loosen them up. It worked
    great. I’m beginning to notice a little double vision again,
    but not enough to go back for injections. I’m in a wait and see
    pattern. Will have to decide about Botox one day, and then surgery
    for the lid retraction. Keep putting it off.

    I’ve read here about people knowing their eye pressure readings,
    but I’ve never had a doc tell me mine. Have you?

    Blynn

    Anonymous
    Participant
    Post count: 93172

    Blynn,

    My last eye measurement was at 19/19 which was down from
    a previous reading of 20/21. I had lid surgery done
    a couple of years ago. This pressure that I feel behind
    the eye always scares me because it feels as like
    my eyes are being pushed out, even though they don’t
    appear to be.
    Your experience with your eyes sounds very much like
    my own, sensitivity, tearing at times etc. I have never
    heard of Borox, what exactly does it do?
    I haven’t had an eye pressure reading either. Do you also
    get a slight headachy feeling when you feel pressure in
    the eye area? and did your doctor mention that this problem
    will be long lasting?

    Thanks again,

    Shannon.

    Anonymous
    Participant
    Post count: 93172

    Jake asked me to tell you that, yes, he had that. It could last a few days up to 6 months or longer. Hope this helps you. E-mail us if you need to.

    Hugs,
    JAN

    Anonymous
    Participant
    Post count: 93172

    Blynn have you ever spoken to an Opthomalogist
    about the eye pressure, if so what did h/she say
    about it? there isn’t any Optho here and I was
    wondering how “normal” this pressure is. I find that
    stress can make it worse also.

    Take care,
    Shannon.

    Anonymous
    Participant
    Post count: 93172

    I want to learn one more thing. What is Botex injections? When is it used, Is it in place of strabimus surgery? Please let me know.

    Fran H

    Anonymous
    Participant
    Post count: 93172

    Shannon,
    It’s nice to compare notes. Yes, I get headachy with the eye
    pressure. Kinda like a sinus headache, but directly behind the
    eye, or to the top, inside part of my eye. Botox is botulism
    toxin. It paralyzes the muscle. So, since my eyes were being
    pulled down and inward, the ophthalmologist injected it into the
    lower muscles from the inside (near my nose), so those muscles
    would relax. Then the upper muscles would be able to pull and
    theoretically stretch the lower muscles. The effect lasts about
    three months, during which time I had worse double vision. But,
    when it wore off, I had much greater eye movement. It’s been about
    a year, and so far my eyes have only slightly returned to feeling
    constricted. I’m waiting to see what happens before making the
    decision to do it again. It’s not usually considered a permanent
    solution, buy my doctor feels that if it’s used early enough, it
    may actually be a long-term solution.

    Were your eyes much worse, in all the symptoms, and have they now
    “burned out?” I’m curious about future flare-ups. I’ve heard both
    that once they burn out they usually don’t come back, and that it
    will always be an unknown–able come flare up at any time.

    I’d also love to hear about your lid surgery. My husband is adamant
    that they not cut on my eyes, and I’d like to look like myself
    again. My “stare” isn’t as bad as some photos I’ve seen, but it
    bothers me. And, my more “buggy” eye does suffer more irritation
    due to exposure.

    Take care, and thanks for sharing,
    BLynn

    Anonymous
    Participant
    Post count: 93172

    Hi again Blynn,

    I have had the eye disease since 1992, when I developed
    Graves.
    My main symptoms were dryness, tearing, sensitivity toward bright
    light, especially florescent. I did experience alot
    of pressure on the muscle at one time.
    I’ve always had large eyes and they’ve always been
    quite sensitive. Getting the eye disease made things worse
    though. I had some lid retraction that’s why I decided
    on the surgery. I felt a lot better after it was done.
    Where you decribed the pressure on your eyes is where
    I find it also. This really scares me. I know I’m pass
    the burn out point, but after hearing that the eyes can
    get bad again, even years down the road is very much a worry.
    The pressure I had been feeling is gone now. I never know
    when it may come back. I’m just hoping it does not return!
    Did your Optho indicate that the pressure could mean
    the eyes are getting worse?

    Thanks again,

    Shannon.

    Anonymous
    Participant
    Post count: 93172

    I also have the same eye pressure and aching as all of you described. I asked my Optho if it meant my eye was getting worse. He told me to expect that kind of pain with Grave’s Eye Disease, as long as it only last for a couple of days at a time. If the pain continues without any relief it cold mean the eyes are changing. He also told me that it could be related to fluid retention. I tend to retain fluid and take a diuretic for it, it seems to help me.

    Anonymous
    Participant
    Post count: 93172

    For those with fluid retention and eye problems, may I suggest you sleep on a couple of pillows at night as opposed to lying flat? This will definitely help the swelling.

    JAN

    Anonymous
    Participant
    Post count: 93172

    No, Shannon. He’s not worried at all. I guess they go by the
    proptosis readings. One thing that did help me with the sensitivity
    to bright lights (including flourescents) indoors was to purchase
    glasses with shading on the top half. I don’t need a prescription
    for vision, but these help a lot. I keep them and a pair of very
    dark glasses for outdoors with me almost all the time. The indoor
    glasses also make me feel a little less conspicuous when my eyes are
    red and tearing. I think it makes it a little easier for people
    to look at me.

    My Graves’ Disease was diagnosed in late 1994, and my eye disease about
    a year later. I’d been complaining of eye symptoms for a very long
    time, though. My original eye doctor told me it was just allergies.

    I hope your eyes stay put! Hearing your report may help me decide
    to finally get the lid retraction surgery. Now, if I can just convince
    my husband!

    Blynn

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