How long can u safely use diamox for?
Dimox: How long can u safely use diamox for? - Glaucoma UK
Dimox
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Daytripper56
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I used it for 6 months before my Baerveldt shunt operation for secondary Glaucoma in 2013. Had pins and needles in my extremities and was told to avoid fizzy drinks as much as possible.
Hi, I've been on it for two and a half months, I haven't been told to avoid fizzy drinks, are you sure that's not just because that horrible Diamox makes them taste so bad?
I can't remember, I just remember being told to avoid them.
Thanks will look into that.
Trish_GlaucomaUKPartner
Hello Daytripper56.
Diamox isnt commonly prescribed for long periods of use. It is normally prescribed if there is an upcoming procedure.
Need some help but can't get to see consultant told I have to wait although pain in my eye driving me to insanity yes have been in and a and e a dozen time s this year fobbed on the phone etc can't continue any more still work pay tax etc What's the point being in pain all day
I've been on it for two and half months because the eyes drops don't take the pressure down enough ( worrying ) These tablets are horrible, I gets pins and needles and numbness in different degrees at different times in my hands feet lips and face, even numb teeth, feel tired all the time, sleep very heavy after the night one, sometimes ringing in ears, feel sick, slightly spaced out and generally lethargic. Worst still have to battle through all of this to hold down a full time job.The only way I can make it any easier is to time the tablets carefully when I have to be less productive. If you are on these you have my sympathys from someone who understands how difficult they are to be on.
Hi. I’m sorry to hear that you’re having a horrible time on them. I was on them for 3 months before my trabeculectomy. I’m lucky in that I tolerated them quite well. I did get the tingling hands and feet though.
Thanks for your reply, how are you now?
Hi Frank. I had my trab in early June and after the fairly intense recovery it seems to have settled. I had the trab because the drops weren’t keeping the pressure down. I have a rare form of glaucoma- mixed mechanism - in that I have both open and closed angle in one eye. I have quite a lot of sight loss in that eye because it was missed. The pressure was down on all my follow up appointments post-surgery. I see my consultant again in early December so will find out how it’s going then. I still have a stitch in which is causing astigmatism and I need a new prescription for glasses but the optician advised to wait until the stitch was removed as she thinks that will get rid of the astigmatism so that’s a bit annoying. End of essay. Bet you wish you hadn’t asked now! 😂. Take care & I hope the Diamox settles for you soon.
Thanks for your reply and don't worry it was an interesting essay 😂 I appreciate your response and wish you all the best in your recovery. It's such a difficult thing to deal with Glaucoma, physically and mentally and to me it's all new so this sight is great. Mine is a result of having Uveitis for about 7 years and taking eye drops for that; now just like that I've gone straight from not having Glaucoma to having it severely, so am really learning alot from all these helpful answers like yours.
It’s a horrible thing and to me such a shock to be diagnosed. I was diagnosed last October. My mum had it and it’s in the family but I always thought I’d be OK because I was aware of it & went for regular eye checks (yearly) however, the opticians didn’t pick it up. I have since changed opticians. Sounds like you’ve had a complicated journey too. This forum is definitely a good support although it can get a bit much. I found myself getting a bit obsessed with Glaucoma when I was first diagnosed and had to take a step back. It’s good that your sight is OK. I wish mine was but I have to think that at least they are on it now & I have had very good care so far. Good luck & keep us posted. 😊.
Sorry to hear your story, it sounds like you could have saved lost vision if your opticians had have picked up on it, that sad to hear. Unfortunately my vision isn't ok I think I must have lost about 30% vision in my left eye, also there is a lot of blurry vision that's still there. Despite the fact I previously had regular visits because of Covid I had missed appointments and poor treatment, it's only lately that hopefully I'm gaining some control. Next up for me is Laser Eye Treatment, I pray that helps. Im glad for you that yours is under control now, do you just take eye drops now? Thanks, David.
Ah that is a shame that your vision isn’t good. Yes at first I was very angry but now I think it is what it is and going around beating my chest and shouting about it isn’t going to change anything. Fingers crossed laser works for you, i’ve Heard good things about it. I’m just on steroid drops once a day to stop the scar healing too quickly post op and also to prevent any swelling. I’m hoping in December he will take me off of them & I will be drop free but who knows. Just gotta roll with it.
I think you have the right attitude for sure, so I'll take that advice because it's true it is what it is now, we can only hope for a brighter future. Well I wish you all the best coming off the drops and with your recovery. Keep everyone posted on here and I'll do the same. Best wishes
Yes you too! 😊.
Hi Daytripper
I don't know about 'safely' but I have been taking Diamox 250mg twice a day for 29 years. I have the usual side effects but I put up with them as otherwise I believe my IOPs would not remain stable which is of paramount importance to me.
The only tips I've been given are drink plenty of water and eat bananas...so I do
😀
Hi peg there is a diamox website and there are people on there that have been taking it for a number of years I found the side effects not the best 29 years is the longest I've heard of presume u have had ops and drops same as me?
Hi DaytripperYes I had bilateral trabs nearly 30 years ago and I currently have 3 different types of drops twice a day. I've pretty much got used to it all now and accept that the meds are a vital part of retaining my remaining sight. Apart from glaucoma and the side effects of meds, I am quite healthy so I count my blessings 😀
Take care.
Hi peg looks like my next option is a trab u say u had yours 30 years ago? I'm. On drops at the moment at idomteries and lens, exchange so far
Hi Daytripper.Yes my trabs (one in each eye) were 30 years ago so of course they do not actually work now. They lasted 10 years or so but I have been on drops and diamox ever since the trabs. As I said, I only have glaucoma so I suppose I am a straightforward case of normal tension glaucoma. The diamox does play a vital role in keeping my IOPs low and despite the side effects, I would not be without it. I'll take side effects over total blindness any day.
OK I c trabs healed up and you stayed on drops and diamox amazed docs prescribed it to u for that long but as u say side affects are better than the other option for sure
Hi peg99 what cou try are you in please?
Hi DaytripperI'm in England.
OK nice one here so many bad stories concerning diamox
Hi peg how's your journey going I'm still struggling just had a failed slt so down with it all got me think about going on azlomide long term I remember your story
I've been on Diamox for around 6 months, and I've had no real side effects other than just being tired when I first go up on it. Other than that, I feel fine and my pressures have definitely stabilized and came down a few points. I'm thinking of staying on it, and possibly even going up past 500 mg per day if it can keep me from having surgeries. Not sure yet though, as I haven't had any blood work done yet and I'm paranoid about kidney stones and other damage that could be taking place in my body that I don't know about. Only time will tell, but it definitely beats a third eye drop at this point.
Hello, I have been in the same for 1 month on the slow release and at the moment 2 months on the normal I’m on 1000mg a day…. I’m hoping to bring this down soon as I’m worried about the side effects kidneys etc….
