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  • Anonymous
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    Post count: 93172

    Debby,

    You mentioned that you got your info from bulletins #6 and #42. I have been reviewing bulletins #1 through #5 today. The eye specialist gave me them as they were included in the NGDF newsletter, June 1990 (premiere issue) that he told me to read and then come back to discuss getting surgery. The bulletins really cover everything. WOW!

    All of your tips sound great but trying to remember them after the darn pain starts up is like driving into a brick wall and then realizing I should have used the brakes. I feel like I am learning a new language.
    I have learned to put the drops in way more often. That is one good thing! I have been sticking on a pair of glasses since I was 12 and I always knew I was good to go. Having this kind of eye pain is a big pain since it is not the same all the time. I think my allergies even effect my eye problems and it is that time of year again.

    Until I got these eye pains there would be no way I could understand
    how really awful it is. I thought I was going to walk around the rest of my life with a wash rag on my face trying to comfort my eyes. Boy did that tick me off!

    My new puppy hit my glasses which hit my left eye. The pain is almost impossible to describe. It felt like a knief was going through it. It has taken me two episodes of this to learn not to let her get near my face! It only takes that one slight bump on the glasses to hit my eye and it is all over for me. Thought I was going to die.

    That last tip about making a conscious effort to blink, the more the better, the longer the better I did not know about. I just assumed I still blinked normally. This tip sounds like a plan. Thanks!

    Michele

    P.S. I think I might have had every eye symptom! They should give me a prize. I get the feeling that the literature tries to minimize how awful the problem is. So many days when I am at work I wish they would let me get disability just so my eyes could have some peace!

    Anonymous
    Participant
    Post count: 93172

    Hi! The progression of the eye involvement in Graves’ Ophthalmopathy
    varies from person to person. According to what I’ve read, eye
    symptoms and hyperthyroidism symptoms usually appear within 18 months
    of each other. The natural course of eye changes in the soft tissue,
    eyelids, and orbits occur within a six month to two year period.
    However, in very rare cases, eye symptoms have been known to show up
    many years after the thyroid problems have been stabilized.

    Although Graves’ can cause many different eye problems (redness,
    swelling, excessive tearing, sensitivity to light, burning, gritty
    or pulling sensations, impairment of eye movement, abrasions,
    double vision, decreased vision, eyelid retraction, and/or eye
    protrusion), it’s important to remember that Graves’ patients do
    not have every eye symptom, or experience them with the same severity.

    It seems that the eyes go through a “hot phase” and a “cold phase.”
    During the “hot phase” there is an immune attack on the eye muscle
    tissue, which causes the inflammation. In most people this
    inflammation is slight and it goes away on its own. In more rare
    cases, others see the inflammation get progressively worse and have
    to decide on treatment. Steroids are usually used first, then
    radiotherapy, or decompression is recommended for severe cases after
    the inflammatory phase has subsided. (Radiotherapy is becoming more
    viable in reversing or arresting the progression of the eye
    involvement.) Six months of stabilized eye changes along with
    stabilized thyroid levels are indicators that you are in the inactive
    or “cold” phase. At this point residual changes of increased tissue
    and scarring can remain, and you may be faced with other treatment
    options – eyeglass prisms or strabismus surgery, and/or eyelid
    retraction.

    Most of this info I summarized from very informative bulletins from
    the National Graves’ Disease Foundation: #6 “Eye Changes With Graves’
    Disease – Continuing Concepts,” and #42 “Thyroid Eye Disease and the
    Role of the Thyroid Eye Specialist.” I recommend joining the
    foundation and ordering these bulletins and others! Go to
    http://www.ngdf.org/member.htm and print out the application.

    Dryness, irritation, excessive tearing, and aches are due to retraction
    of the eyelids that do not close completely at night. Here are some
    tips that may help relieve your discomfort:
    *Use lubricating ointment (LacriLube, Refresh PM, Tears Renewed) at
    night. You may also want to tape your eyes shut with first aid tape
    for sensitive skin (3M – one inch or wider), or use a scarf/bandana
    to tie around your head and cover your eyes.
    *Use artificial tears (Celluvisc, Tears Naturale, HypoTears) during
    the day.
    *Elevate your head with pillows, or put wooden blocks under the
    bedposts to raise the bed.
    *Use a humidifier in your bedroom to keep the air moist.
    *Avoid drafts, i.e.ceiling fans, open windows.
    *Use hot or cold compresses, whichever feels better.
    *Make a conscious effort to blink, the more the better, the longer
    the better.

    Anyone else have tips to add to the list?

    Wishing you health, happiness, and comfort for your eyes, Debby

    Anonymous
    Participant
    Post count: 93172

    Debby was right on with her asessment of eye problems. I know because I have most of them. Now that the sun is lower in the sky in the midwest it is literally painful to have to look anywhee near where the sun is.
    Although my eyes are extremely dry they both close at night. One tip I might add since swelling is a big problem with my eyes particularly with the left eye, is to sleep on the side opposite of the problem eye if you are lucky enough to have one eye better than the other. I’m allergic to ragweed also so have severe itching right now and use over the counter eye drops for allergies also. Thanks, Debbie, I’m going to try one of those ointments you put in your eyes at night – hopefully, they are OTC.

    Sue

    Anonymous
    Participant
    Post count: 93172

    Great tips, Debby. the only thing I want to add is a note of caution
    on the use of artificial tears. Because I have so many allergies, my
    opthamologist has me use artificial tears with no preservatives. They
    come in little vials that you use once and then throw away. They seem
    to be a little more expensive, but it is worth it to me. I had so many
    allergic reactions to antibiotic eyedrops when my G.P. was trying to
    get rid of my “pink eye,” which turned out to be “Graves eyes!”

    Anonymous
    Participant
    Post count: 93172

    I have wrap around sunglasses that I wear anytime I am outside.Also, I avoid floursecent lights when possible. The flax seed eye pillows help too.But the biggest thing is keeping the eyes lubricated.

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