Drug side effects pilocarpine, dorzolamide/timolol, diamox generic acetazolomide

[Crafted]

Narrow angle glaucoma cataract surgery in a few weeks. Taking pilocarpine, dorzolamide/timolol for over a month but recently seems to make me dizzy especially when lying flat. Also slowly withdrawing diamox 250mg. How can I lie still for surgery with this. Does anyone have advice or experience of this. All comments appreciated.

[Trish_GlaucomaUK Partner]

Hello Crafted.

Pilocarpine does not normally cause dizziness but Dorzolamide/Timolol and Acetazolamide can cause dizziness although uncommon. When you put your drops in it is important that you close your eyes and press on your tear duct (the inside part of the eye by the bridge of your nose) for up to a minute. This can stop the drops from getting through the tear duct and getting to the back of the throat into the blood stream and cause side effects. If you don't do it already please try it as this does help. It is important that you tell your consultant about your dizzy spells too as they would need to know. Surgery unless it is laser or cataract is normally done under local anaesthetic but if a person is very fidgety and can't stay still the consultant would consider doing the procedure under general anaesthetic.

[Crafted in reply to Trish_GlaucomaUK]

Thanks Trish, I have been holding the bridge of my nose for about 2 mins in between the drops and it does help. Just found out I am vit d deficient maybe it could be that or withdrawing from acetazolamide my body is trying to normalise? Also having ectopic beats and tinnitus too but maybe I am getting uptight about it all too. Absolutely freaked out by the thought of surgery and am a carer with responsibilities. Just not feeling good or able to cope at the mo.

[Trish_GlaucomaUK Partner in reply to Crafted]

Make sure you are drinking plenty of water too. Not just for the dizziness but also because you are taking acetazolamide. Pressing on the tear duct is a better way rather than holding the bridge of your nose as this won't cover the tear duct as well. Surgery must be such a worry especially as you are a carer too. Remember also that if you would like to speak to someone who has had the surgery you are due to have you can always call us and we can arrange it for you. Its called our buddy system and has proven to be very helpful to people especially those with worries about having the procedure done. Give our helpline a call if you want to finds out more about it. 01233 648170

[Crafted in reply to Trish_GlaucomaUK]

That's great thank you I will try this. As you say I have been holding a little too far away from the tear duct. I didn't know about the buddy system but would definitely like to speak with some one who has had surgery for narrow angles

[Wales99 in reply to Crafted]

Hi Crafted I was on Pilocarpine but really couldn’t tolerate it. I didn’t like what it did to my vision. So I take my hat off to you for tolerating it. I am now on Acetazolamide not sure if that is also affecting my vision but it isn’t right. I think it can cause tinnitus. I think the Dorzolamide/Timolol can cause ectopic beats as I am also on that and get them. Good luck with the surgery. I’m due to have a trabeculectomy in June.

[Crafted in reply to Wales99]

Thank you Wales. It is very difficult to work out what side effects belong to which drug when you are on more than 1. Acetazolamide I believe, for me has many, many side effects and messes with your whole body. I get the tingles, dry mouth, stomach aches, pains and upsets, disturbed sleep and more besides. It also messed with my electrolytes and caused potassium deficiency. I am weaning off it at the mo but surgeon wants me back on it before surgery. Oh deep joy! Thanks for your reply, information and good wishes I very much hope that your surgery goes well too.

[Wales99 in reply to Crafted]

Yes I’m convinced it’s making me anxious. I didn’t suffer with anxiety until the Pilocarpine 🙄. Well all drugs have side effects I guess but they are a necessary evil. Good luck & hang in there. 😊

[Hidden in reply to Crafted]

Hi Crafted, sorry to hear you are still feeling dizzy and experiencing so many side effects, no wonder you aren't feeling great and moment. The thought of going through surgery on top of all this obviously is a great deal to cope with. I also worried about how I would be with lying still during cataract surgery but I didn't have the added worry of feeling dizzy. One of my friends recently had his op under general rather than local as he told his surgeon he was very squeamish and knew he would be sick if awake, so I would like to think in your situation your surgeon would do the same.

My surgery was also to open the angles in my eyes to help with drainage. Waiting for the actual operation was so much worse than the surgery itself, I was genuinely absolutely terrified.

All the best with your surgery and take care x

[Crafted in reply to Hidden]

Thanks for the suggestion but surgeon is not keen to go down this route as I don't have someone to look out for me for 24hrs and the tachy, BP goes low and hb slow at other times. She is proposing a cannula around the eye? But this was before the dizzy issue. I would rather just be able to lie still as I don't want twilight stuff either I need to have my wits about me an get home ASAP after.

[Hidden in reply to Crafted]

My friend did spend the night in hospital after surgery which is not an option for you as you need to get home. I was out the hospital an hour or so after my op once they had gone through all the post op checks,the do and don'ts and given me my eye drops. You do really need to take care for 4 weeks after surgery with no heavy lifting or bending over.

[Crafted in reply to Hidden]

Did you have sedation or just drops and is the surgery any longer or different due to narrow angles do you know?

[Hidden in reply to Crafted]

I just had drops no sedation. Surgery only took 5 to 10 mins and I assume it's the same regardless of angles . My surgeon spoke to me entire way through, telling me how well I was doing and giving reassurance. I felt totally fine afterwards and blurry vision went within an hour or so. It's a horrible thought I know lying there awake with your eyes being operated on but it really is much worse in your head. I've had both eyes done and a trabeculectomy all with local and if someone told me a couple of years ago I would have coped I would never have believed it.

[Crafted in reply to Hidden]

That sounds ideal. I think I will be fine if someone talks to me rather than them just talking to each other. It takes your mind off what they are doing. Thank you for sharing just need to get the dizzy spells conquered now and summon up all my braves!

[Hidden in reply to Crafted]

I would like to think if you tell the consultant how nervous you are he or she will do their best to put you at ease. When I had trabeculectomy one of the nurses even offered to hold my hand. I hope your dizziness does get better before your surgery and that it all goes well. You are much braver than you think I'm sure.

[CC08]

Hi, I was on Acetazolamide tablets for about 9 weeks on two occasions last winter before surgeries and suffered a lot of the side effects you have mentioned in your post reply to Wales99. However, on research I discovered the tablets could affect the minerals and electrolyte balances in your body. So I used to drink Coconut Water and also use Dioralyte sachets (these contain rehydration salts, which consist of sugar (glucose) and electrolytes (sodium chloride, potassium chloride and disodium hydrogen citrate) not sure if they helped me but psychologically they may have given me a focus. It took about 6 -8 weeks for most of my side effects to clear. Keep looking forward you will get through this and feel better soon even though it can be a slow process - one day at a time xx

[Crafted in reply to CC08]

Thank you for letting me know. I have been drinking the nestle water which has potassium, calcium and bicarbonate in it and think that seems to help a bit. Funnily enough I have just bought some coconut water today and will give that a try too. So pleased that I have found this forum for support.