Follow up from trab

[Petrolblue]

Hi there, I had my first appointment with the surgeon who did my trab yesterday. The pressure was 12, which is good fo me, and he said everything looked good so far. Though he said there was still a long way to go - I presume he means it has to drain consistently and the pressure remain stable.

The more worrying thing is my other eye, had a pressure of 30 and I have tried virtually every type of drop. I'm aware it will need a trab in time, so in the meantime he's put me on pilocarpine 4 times a day. Does anyone have experience of this? The information leaflet says it's only used in emergencies and the side affects are worrying, but am trying not to get hung up on these.

So now I have one massive dilated pupil and one tiny constricted one for the time being! 🥴 The journey continues! X

[nat10]

Hi, petrolblue, good news about your trab op. I was put on pilocarpine 4x a day before my trab and then had to continue using it in the other eye for 6 years, only taken off them after an op on that eye. I had terrible side effects from them at the beginning but it does get better. Just be careful about driving after having them, I also found other jobs difficult around the house so had to be more organised to do these when some of effects of drops had worn off. All the best.

[Petrolblue in reply to nat10]

Thank you for your reply. Do you mind telling me which side effects you had and how it affected your driving x

[nat10 in reply to Petrolblue]

I had an ache around the eye , when I first started using them I can only describe it like being drunk and feeling wobbly, was told it was because one pupil large and one small. Have you had any side effects yet? If not you may be lucky and not get any.

[Petrolblue in reply to nat10]

Have only had the drop 3 times so a bit hard to tell. Feel a bit heady and wobbly today, and my eye is a bit sticky with the drops. Not too bad so far. Thank you for your advice x

[CC08]

Glad to hear recovery is on track good news on the pressure, sorry I’ve only had experience with Acetazolamide so can’t help but hope that you can cope with side effects in order to keep the pressure and ultimately damage to the retina to a minimum, one day at a time is all you can deal with sometimes x

[Petrolblue in reply to CC08]

Hi thank you for your reply. Think I am getting used to the side effects and its no so bad so far. You're right, one day at a time x

[Wales99]

Hi I was on Pilocarpine for a while and really didn’t like it. It affected my vision very noticeably and caused me crippling anxiety. My consultant took me off it and put me on Acetazolomide or Diamox (easier to spell!) which are tablets. It’s so much easier taking a tablet than putting drops in your eyes (IMO) Acetazolmide has side effects too & some people can’t tolerate them but I didn’t have any problems with them but I hated the pilocarpine drops. We’re all different- see how you go. I was told that it takes around two weeks for a drug to get into/out of your system. Keep us posted 😊.

[Petrolblue in reply to Wales99]

Thank you for replying. I have been on acetazolomide before and didn't like it. My feet were very sore and I felt very tired and not myself. Must admit, I'm not liking the pilocarpine much either so far. What they describe as 'browache' feels more like sustained brain freeze for about half an hour after putting the drop in. I think I have tried just about every drop by now and the consultant has put me on this until I can have a trab in the right eye. Not sure when that will be. Am hoping it settles down a bit. Keen to get back to work and get on with things x

[Wales99]

Ah yes I know what you mean. Drops alone didn’t keep my eye pressure down either. I had a Trab in June. The pressure went down but I haven’t seen my consultant since July. I’m due to see him in a couple of weeks so we’ll see how things are then although I fear the pressure has gone up again but those of us with Glaucoma are obsessed with eye pressure 😂. I phoned Glaucoma UK helpline and Trish_GlaucomaUK was extremely helpful & calmed me down, explaining exactly what the drops did which then made sense of how my eye was feeling. It might be worth sticking it out & seeing how you go. After all they are lowering the pressure & that’s what we want. Good luck & take care. 😊.

[Petrolblue in reply to Wales99]

Good luck with yours too. You do worry when the pressures haven't been checked for a while. I do hope your trab has been successful. My consultant said today that he had seen some work for 20 and even 30 years, so I'm hanging on to that! 😀

[Wales99 in reply to Petrolblue]

Yes I’ve heard that too. I’d be happy with any years! When I was due to have the op I spoke to a Glaucoma UK “buddy” and she said that hers had lasted 15 years so not bad at all.