[azroses2322]

in reply to: how bad is bad- eyes? #1072162

Hi fellow TED sufferers, I am new on the bulletinboard but not new to Graves and TED. I have had RAI (6/07) and been thru 5 eye surgeries (starting 3/08) so far and am due for the 6th one this month (4/20). For those of you still in the hot phase of graves or struggling with TED until you can pursue relief by surgery or the wonderful possibilty of natural healing — I feel your pain when I read your words and remember, and I hope just maybe some of my experience and survival tips may help. When Graves hit and all through the hot phase I kept wanting help for my eyes — I begged and pleaded — no one could help then. I lived with varying degrees of vision impairment and I was so scared. I thought I was going blind, I cried often (it actually helped lubricate) and I was so stressed I thought I would explode. On the worst days anything 3 ft in front of me was blurry (I had better than 20/20 before Graves). My first symptoms were puffy eyes in the morning and within about a month it progressed to one eye starting to bulge and the other was not far behind and then all of a sudden (5 weeks after the puffiness started) I could not look up and then I could not track both eyes side to side and when I came back to center I was dis-oriented, had double vision in some directions and lots of pain, dizziness and nausea. Once I was diagnosed with Graves, I was suffering physically very badly but all I cared about were my eyes. Then, I started getting some eye-protection advise from my Opthmalogist — he taught me about lubricants — we went over a list — he said this one would last 5 min. this one 15, here is the name of the ointment for nights (neither eye would close). He told me to force my eyes to blink as much as I could — he said "do not stare at a computer or read for more than 15 min without looking away for a few minutes" and to try to blink because when I read. He taught me that we do not blink when we read (book or computer is both reading) but that we do blink watching TV. He told me go get a humidifier and stay over it whenever the weather is dry (I live in AZ and Graves struck me at the start of the DRY summer — oh the constant pain, grittiness, dryness and redness and the worst thing was getting eyelashes in the eye and my eyes already hurt too bad and I couldn’t get them out and would poke myself in the eye because my eyes were not where they used to be. Out of all of this though, I began to learn how to control my environment. No FANS, no heat or air vents blowing anywhere around my eyes. My doctor taught me that if I did not protect my eyes, the cornea could become scratched and then it is cornea transplant time. ” title=”Sad” /> So, I learned to stay out of wind and all air movement. When the eyes are dry they will water (tissue in my hand always), when dry they will hurt so keep lubricants in them at all time even if it is every 15 minues or more — I got to that point — lubricants every 15 minutes (waking hours) and ointment and mask at night and if you break the seal re-apply the ointment — I got to the point I was spending $30-50 a week for lubricants and ointments to save my eyes. This to me was more important than food. On top of all of this when they are dry (when they were bulged and the lids receded) they were sensative to light.I quickly realized I had night blindness and couldnot drive at night until they got fixed. Also, I could not be in a lit doctors waiting room without my sunglasses. I learned to check for the air source and light in any room I entered and position and protect accordingly. So from the onset of Graves TED, I moved within one month to having to live in a controlled environment — I lived, worked, ate, slep out of the master bedroom with a humidifier nearby and the curtains drawn for about 1 year until I could get enough eye surgery to not be sensative to light and ever so gradually re-enter the world. With each surgery I could do more and have less problems, I was becoming whole again. One thing I found on my own that all my doctors have praised me for discovering is SAFTEY GLASSES (this is in addition to the opthomalic sunglasses). The safety glasses are OCHA approved safety glasses that I found in the hardware section of my local drugstore chain — they are clear and they wrap around and fit close (so close that they fog when you sweat – that is the draw-back) but they fit under they optomalic sunglasses and together in the sun cthey block most of the air movement. Then when I entered a building I removed the sunglasses and left on the safety glasses. My eyes would dry out just walking across a room with no fans on or any air movement — even opening an oven door was devatating. Even now that my eyes close once again and are lubricating normally — there are time I still have to whip out my trusty saftey glasses. There are several brands so find ones that fit you face. Another thing that helped was PUNCTUM PLUGS — I wished I had gotten them sooner. I saw an eye surgeon for the first time after almost a year of suffering — this was when they were ready to start my SURGERY JOURNEY (and it is a journey). This eye surgeon, the first thing he did, in the office, was introduce me to PUNCTUM PLUGS — he inserted them and my life began to change. Even on the drive home I could feel the relief. I still have them in. This is non-surgical and if you are suffering and not ready for surgery maybe it is something to help get you through — it may be worth asking your doctor.
Liz, you mentioned using genteal gel — I too started with it — it is a wonderful product — but as you mentioned your eyes are blurry for 5-10 min. I remember while using it as my only lubricant had to watch my watch to make sure I had time to wait if I was going to use it to allow enough time before driving — I was so afraid of getting somewhere and using it and then my eyes staying blurry. I found 2 other products that worked for me and evolved from Genteal Gel to them (I still keep Genteal Gel around). The ones I use most are Optive drops — it will blur for up to 1 minute and but it feels good (to me it seems to be more soothing than even Systane). The other is Systane Ultra — there is no blur (maybe a second or 2 — enought to wipe the excess moisture with a tissue) but that is all. I also changed to the ULTRA SOFT tissue as I was going through a box a day. I found that both of these kinds of drops, gave me good coverage. I used these 2 products during my worst eye phases (lubricating every 15 minutes — waking hours) and then used on of the PM ointments at night as long as the eyes did not close. I also used the ointment if I needed to nap or shutdown other than nighttime (with the mask). My RT eye was much worse than the left and at first I did not think I needed to ointment it at night but my doctor told me that even though the eye is "almost" closed when I force it, when I sleep it is probably wide open when the muscles relax — so use the ointment –I had to basically blind myself with it (all I could see was a blur)– the tube says 1/4 inch in the lower lid — I had to use a ribbon at least (an inch) of it along the total length of each lid for each shutdown (I averaged 2 tubes a week) — Then if you wake up and can see, it is time to put in more. My doctor assured me to use as much as I needed of these OTC products–rather safe than sorry. The hardest point for me was to not accidently fall asleep when watching TV — I did once for about 15 min and when I jerked awake I thought I was blind I could not see other than blur everywhere — I freaked and spend the next hour or so pouring lubricants and artificial tears in my every 5 minutes. I have 3 eye doctors/surgeons now and they have all been wonderful to supply me with handfuls sample lubricants of my choice on each visit (so ask for samples,) that allowed me to find what worked best for me and to get sample sizes to keep in my purse and pocket for my trips to the store and church. The other thing that set in was Graves related Glaucoma, so I am also on perscription drops for that and my Doctor gives me lots of samples because it is soooo expensive. At first I could not put drops in my eyes — kept missing, I have gotten so good at it, I can do it at a red light (the non-blur kind), in the parking lot, in the checkout aisle and even during offering at church (I just slouch in the see and do my thing). This is all survival — from the start I said I do not care about the rest of my body (the impact of Graves overall to me physically was severe), but PLEASE save my eyes and I don’t care what I look like just so I can see (I found I kinda do care but it is OK — I look a little different than before Graves, I lost my deepset eyes — but I can SEE AGAIN ” title=”Cool” /> . What I had to learn was that until they could correct the disease defects to my eyes with surgery — saving my eyesight was going to be my 24/7 responsibilty and the greatest priority in my life — time-wise, and financially. I wanted my life back but I had to go through this — I am glad I did what I did — it was the hardest and most important journey of my life. On my last Endo visit last month he told me my eye impacts were the worst he had ever seen and he was so please with the progress my surgeons have made. I am coming out on the other side and I hope my journey can support and help others.

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