Glaucoma: How do you cope?

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A little background. I was living with horrible headaches that would temporary blur my vision, they got progressively worse, then a day came where my left eye stayed blurred. Symptoms days before diagnosis were awful. Complete blurred vision in left eye, pupil opened no dilation, throwing up, fever, HORRIBLE headache. To the point of wanting to rip out my left eye out. Urgent care doctor stated I need to see an Ophthalmologist ASAP. I go to an Ophthalmologist and doc stated left pressure was at 70 and the right was at 55. I needed to have emergency surgery the next morning or I would be permanently blind. I was shocked, I was only 29 and had zero family history of Glaucoma. Life has been a rollercoaster of good and bad since then. Left eye is the evil eye, pressures have gone down and up over the years. 5 surgeries so far in the left eye, including Cataract and TWO Ahmed values. Around the clock drops in both eyes, and a droopy left eye due to the valves, which has really crippled my self-esteem. Thankfully my right eye has been my good eye. I was doing fairly good this whole year but the pressures are crept back up in BOTH eyes now. Laser treatment in right eye appears to be helping so far. I'm am now being referred to another specialist as my left has gone up to 30. I must admit there are days where I just wanna give up. But my family has been an amazing support system. I've never gone on forums before and thought I'd give it a shot. Perhaps interacting with people who have this disease and how you all cope may help a bit.

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  • Posted

    That sounds awful.   How long has it been going on for, and can you still see anything from your left eye?   We must live in hope that they will develop better treatments to keep the pressure down!   Best of luck!  
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    • Posted

      Hello Alcantara!

      I have been fighting this disease since 2013. I was diagnosed on my boyfriend's birthday (April), of all days. First surgery worked temporarily but the pressures went back up. I was then informed on my bday (May) that I would need my first Ahmed valve. My left eye is left with permanent vision damage. It's completley blurred but I can still see a little. Scar tissue from all the surgeries have obstructed it further. Docs can only say me having "bad genes" as the reason for it's severity, which is not a satisfactory response. But yes, I agree in regards to new up and coming medical breakthroughs helping us. It stops me from feeling defeated and hopeless. My goal now is to stabilize my left and continue to monitor my right. Thank you for responding! How long have you been fighting for?

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  • Posted

    My first eye test at the age of 48 in 1990 discovered high pressures.    About 27 in both eyes.   No symptoms and examination showed no glaucoma either.    They did not put me on eyedrops until 1997.     Since then, pressures have wandered up and down between about 18 and 34, but still they say no glaucoma, as field tests are perfect.    SLT laser treatment on right eye to lower pressures a few years ago.    It made no difference to pressure, but the vision in it improved considerably, although it was good to start with  (although they said the SLT had nothing to do with it).     Last check up several weeks ago revealed pressures of 18 and 22, full visual fields and no glaucoma, and I am now 77.     But I got something called a CSR in left eye a few months ago where a bit of liquid gets under retina and causes some slight distortion of straight lines when looking at things close up.    I had it 20 years or so ago.   They said it would eventually get better of its own accord, and it did, until returning in the summer.   It is now improving again, so I hope it will soon be gone.    It isn't really noticeable when out and about, and I still don't wear distance glasses except when driving.    I do a lot of very fine work, (See attached)  and I find that helps.   Maybe it takes the place of eye exercises.     I don't worry about it anywhere near as much as I did in the first few years.     I know it helped to talk with others when I first found out about the pressures.   

    Bob

     

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  • Posted

    Your story rings bells. I discovered I had glaucoma after 5 years of horrendous pain behind my left eye - felt like someone was stabbing me from inside. Brain scans, neurologists, you name it... it took them 5 years to work out the problem. Vallium was a friend of mine. Once I was referred to an ophthalmologist, like you, my pressure was high, in the 60’s in left eye and 45 in right. I was 27 when the headaches started and 32 when diagnosed. Laser surgery, which didn’t work, more laser, stretches, iridioplasty, iridotomies, my eyes are like a patchwork quilt,countless drops, fast forward 15 years and a clear lens extraction in March this year in my left eye left me with the complication of a macula odema. Fluid swelling on the retina. Can barely exercise now due to an immediate impact on my vision when my blood pressure increases. It seems to never rain but pour. Pressure is now between 14-18 either eye, and I’m taking 4 drops plus 2 anti inflammatory and one oral suspension. I know how it feels to be around the clock. The type of glaucoma I have - narrow angle, you can’t do an Ahmed valve op, or any of the new discoveries, they are all for open angle. I’m basically left with the option of a trabecularetomy operation if it gets worse.we know it’s not easy being a glaucoma patient, but hopefully we all have good experienced doctors. For me I have to take the view, at 47, that they have kept my vision to a level where I can see and drive still for the last 15 years, hopefully they can slow down the progression for the next 30-40 (I live in hope). Where are you based?
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  • Posted

    I'm sorry you're going through all that. I have narrow angle glaucoma. The eye drops are keeping the pressure good, BUT.... I am so upset, and scared. I had the laser iridotomy surgery a yr and half ago, I found it like torture, electric pain over and over. And it didn't help the narrow angle. Now she wants me to have it again, and if it doesn't work then cataract surgery, which I don't know if I could face, or if I'm even willing to have the cataract surgery. I pray the laser works this time.

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