Pilocaroine side effects: Hi everyone I have now... - Glaucoma UK

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Pilocaroine side effects

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12 Replies

Hi everyone

I have now been off diamox about a week just taking pilocarpine 4 times daily and dorzolamide/timolol twice a day. Having huge problems sleeping, stomach issues, tinnitus, stuffy nose and now immense waves of anxiety/panic? Waking from sleep with this. Anyone know if this can be connected with drugs or something else. Have been holding in corner of eye after drops which seemed to stop side effects but now ocular effects and dim vision again. Am I pressing the correct place. Feeling worried about the whole thing is too much drug for me? Thanks for listening

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Lynne-H profile image
Lynne-H

Hi Crafted

Could it possibly be withdrawal symptoms from coming off the Diamox. Perhaps your GP or Pharmacist could advise you.

Lynne

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Crafted in reply to Lynne-H

Sure could be, although I thought it would be better if I didn't go cold turkey and did it gradually with the help of a willing pharmacist. I had lots of side effects when using it but didn't realise my. Body might not yet have normalised. Thanks so much for your reply. It's often in the middle of the night when I seem to awaken from a dream to this awful anxiety/panic and don't know what to do with myself to try to calm down.

Lynne-H profile image
Lynne-H in reply to Crafted

Yes it could possibly take more than a week for things to settle. I recently reduced propranolol from 2 a day to 1 and it took probably a fortnight before I felt `normal`.

Hope you start to feel better soon.

Crafted profile image
Crafted in reply to Lynne-H

Thanks lynne, I have just checked and I think only been off diamox for 5 days so far and I weaned for 10. Glad to hear that you are feeling normal again and very much looking forward to feeling my normal again

JSid93 profile image
JSid93

Hello! I was on Diamox for a couple months leading up to my surgery a couple weeks ago and the first week after coming off them was horrible for me to! Had trouble sleeping and it was really tough for me to go back to feeling normal! Speak to your GP and get help but most likely I would say it a withdrawal symptom! :)

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Crafted in reply to JSid93

Thanks for that - I have been on them for 6-8 weeks so I guess my body is used to having it. I am also deficient in vit d and I think that this could cause anxiety too. I will try pharmacist as it is not unusual to have to wait several days to speak with GP and closed this aft anyway. Thanks for your thoughts on this. Could I ask what we're your side effects and how long was it before you felt normal again. I have surgery soon but can't keep still at the mo. My body seems so finely balanced and all these drugs knock it out of whack. I hope your surgery went well and you are now feeling good.

JSid93 profile image
JSid93 in reply to Crafted

No problem at all & thank you for the well wishes :)

My only other side effects (apart from the sleep issues) were extreme fatigue for 2-3 days after putting them in the bin and slight nausea, other than that there were no other complications thankfully! If it persists any longer seek professional advice :) there are also many possible side effects cause my the drops that we all take but again, that's something that your GP should be able to help you with :) I do completely sympathise with you and everyone on Diamox, it's horrible and did actually strip me of my personality as it was such an intense drug. Chin up & stay positive :)

nat10 profile image
nat10

Hi, I have been on pilocarpine for over 5years, I have never actually thought of the side effects but you have just described most of my problems except anxiety /panic. But today I have been taken off them so will be interesting to see if the problems are related, but one positive is whilst on them my pressures didn’t increase.

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Crafted in reply to nat10

Well I guess that's the most important thing that pressures were stable. I hope all goes well for you.

Wales99 profile image
Wales99 in reply to nat10

I have to say that Pilocarpine caused all those side effects for me too.

Crafted profile image
Crafted in reply to Wales99

I checked this out this morning and the opinion was that Diamox should have left the system within 36 hours and should not be affecting my potassium levels or anything else now. Also asked about pilocarpine and was told that it's short acting and unlikely that it is causing these problems. Suggested That it would be sensible to have all recent bloods rechecked and vit d again as it's probably something else causing it.

Wales99 profile image
Wales99 in reply to Crafted

Oh well at least you got a response. Always good to have a plan methinks!

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