hello, thank you for letting me join.
I have had double glaucoma for 25 years. It is now seriously damaging my optic nerve. The pressures just wont come down with drops. IVe been put on a tablet called Diamex. to try and lower them as quickly as possible. Is anyone else taking this tablet for their glaucoma? Thanks
Prior to my trabs, I was on and off Diamox at various times as I was unable to tolerate any glaucoma drops. They were very effective at reducing my eye pressure, however they were not without side effects. I would feel seriously dehydrated while on them and would get pins and needles and numbness in my hands and feet (moreso when I was on the maximum dose of 4 per day). Also, despite upping my water intake as suggested, I had two incidences of kidney stones while on them (or shortly afterwards), however this may have been a coincidence.
For me, definitely better than the drops, despite issues.
Thanks Alfred. Hope you are well.
I have been on three drops for a long time but they have not brought the pressures down. I am only about 5% away in both eyes from reaching the central line of vision so am in a bit of a serious state. I had a treb in the left eye in 2012 but it didn't work many years. I cannot have one in my right eye as I have abnormal blood vessels in that eye due to Sturges Weber syndrome. New consultant (for me) put me on Diamox while waiting to take out the old treb and put a new one in, next month. He said I might have to stay on it permanently because of the problem with the right eye.
But I am not dealing with the side effects. I take 2 a day and suffer from terrible fatigue, a bad stomach ache every night and tingling in fingers. I have had my bloods checked for potassium level and kidney stones, all clear. was just interested to to know who else was taking this unusual method to bring pressures down quickly. Thanks for responding
Really sorry for your troubles. Since my trabs I experienced other serious health issues, and after some research switched to a clean ketogenic diet. Within a matter of weeks it dropped my eye pressures by over 25%. My consultant was amazed. I'm over 2 years in and they have remained lower. I've also read that it can be beneficial for fibromyalgia. Might be worth looking into.
hi. I’ve messaged you?
thank you for this very interesting information. I will research this diet. Keep well
yes I was on Diamox for me it only decreased pressure a small amount had trabs in both eyes approx 4/6 weeks ago seems to be going ok so far so good . As Alfred V says the side effects can be quite hard ( I also had full face body tingles , rashes , not much in the way of needing to pee more but made me very weak and woozy just sick as a dog ( this was only on 2 tablets a day really wreaked me those tablets I was glad to be done with them .
Hi Pinks. Thank you so much for responding.
I have just written an in depth reply to Alfred which you can see. Yes I'm on two a day too T Horrible drug. Thee worst bit for me s the fatigue, I have already suffered for 20 years with fibromyalgia and chronic fatigue, syndrome so this side effect from Diamox on top is hard for me to handle. I can't get on with my life very much at the moment as I keep falling asleep. But I know I have to bring the pressures down because my optic nerve is almost shot to pieces now. The pressures have to stabilise and quick, but I can't have any procedure done in my right eye due to another radical condition...... Good luck following your own operations recovery. Fingers crossed they will keep the pressures down for a good long time
that is so hard fibro is so painful a friend of mine has it and I know how much she struggles, so sorry ur unable to have a trab in ur right eye , can they do migs surgery ? it’s very expensive though my specialist told me that surgery was up to 10 grand a eye I couldn’t afford it so had trab instead. I really hope ur not on Diamox Forever its very difficult drug to be on long term I only did it for 3 months and the reactions were too much . Please talk to ur dr about the side effects and the impact they are having on u there must be a better solution for u
thank you Pinks, i did tell him last week about the problems I was having with-the side effects but he said he would appreciate it if I could bear it a bit longer. I have no choice I feel. The drops dont work and if the pressures dont come down very soon my optic netve will be finished. He will do a treb in the left but the sturges weber in the right, as ive said,they dont want to touch it. Ive been very unlucky with such an additional eye complication. I am inthe UK by-the way
that’s so sad my dr was the same with the Diamox but it all got too much for me and wasn’t doing much only reduced pressure by 5 or 10 it was still night 20s/30s even with Diamox and 3 loads of drops ur situation with pressure sounds much like mine . Hopefully Diamox will help drop it some more .
Yes I’m in boiling hot Australia . I Know ur in uk we don’t have resources like this in Australia there’s one other gentleman from Thailand that posts here too I think in regards to treatment it’s same world wide . . I really wish u a good result with the Diamox . Please keep me posted with how u going ⛄️ wish u all the best
hi Pinks did I reply back to you? Thanks for your reply. Ive had a chest infection for over 2 weeks ,ihave not yet been given the all clear to have the trab op on the 19th as its under a general aesthetic. Am still struggling with the Diamox. I am not on this site anymore. The replies come up via my email page but in a little box and its too small For me to read comfortably., or reply back. Hope you are well best wishes Salsa Lady
Have you got the option of having a Preserflo Microshunt…. ?
I had mine done last week so still in recovery mode, however now off all drops
hi Moana, I wish you a speedy and successful recovery. Thank you for responding to me
hi. No not in my right eye as apart from glaucoma in both, i have sturges weber intbe right. Abnormal blood vessels. If i was younger it might be ok but imover 70 so that sort of procedure on a sturges weber eye carries a lot of complications and risks
oh ok, take care and keep in contact. Hope all goes well
Just seen this post - I was on Diamox in between surgeries, as a kind of holding pattern. The pins and needles were pretty severe but eating a banana when they came on, really helps stop them in their tracks. At least that's one less symptom to deal with! Wishing you all the best
Hi thank you for your tip. I have only just seen your post. I am still on Diamox while waiting for my op (which now might be postponed as I have had a viral infection....) Will try the banana tip. Best wishes to you too
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