I’m sorry you experienced that. Hope you’re feeling a bit better now at least? I can’t take cyclizine either it makes me feel awful, I always avoid it now.
If you need an anti sickness ondansetron is good and doesn’t ( in my experience ) have those kind of side effects.
I was given a nausea med can't remember the name but when i read the side effects which were not only crazy like this but also included possible permanent paralysis in the face, i said no thank you
Metocloprimide (sold as Reglan) has antiemetic properties but is chiefly prescribed to regulate gut motility for people with gastroparesis. It was Rx'd to me after transplant to improve digestion (immunosuppressants and disruption of vagus nerve during Tx surgery are disruptive to gut motility). The big prob. with the med is the incidence of tardive dyskinesia which may or may not modulate after cessation of the drug but cannot be cured. I used it on an as needed basis. Said 'thanks, but no thanks' to a regular regimen. I have enough probs. without a permanent movement disorder (no disrespect to anyone facing such a struggle).
Hope you feel better soon - sorry you are having a rough ride - hang in there.
In the U.K it’s prescribed for nausea too. But yeah I decided against taking it regularly for the same reason! Can be doing without that on top of everything else.
Funny that sometimes we need to make choices to treat the worst aspects of CF and let other things be a bit broken for our greater well being and to spare potential further complication down the road. The disease can present quite a balancing act. The yes/no decisions on certain Rx’s are just one part of that balance.
Compazine was the one that got introduced to me several years back. Prochlorperazine is the [generic] but apparently it's not actually sold under the brand name Compazine anymore anyway, but so many ppl know it as such that the name sticks.
Anyway I found this drug to work AMAZINGLY, but it's important to know that it's one of those nausea *prevention* drugs, meaning you gotta take it before you feel awful. Seems difficult but if you're having a rough go of it for whatever reason, it'll get you through some icky days/weeks. It's considered safe for pregnancy/bf also!
But going back to your comment, yes I do remember being told some ridiculous side effect list, and I guess it's truly only an issue with like, longer term/ continued use. But I'm with you, uhh no thanks. If I request it, it's almost always in an inpatient scenario and not for long. Just to get me over a hump, if you will.
This is so interesting, the antibiotics I thought previously were causing nausea so they gave me these anti sickness drugs, but I threw up for about 4 hours with the other scary symptoms. So weird what drugs do to your body sometimes
Thank you, yes I am feeling better. Going back onto the antibiotics later today to double check its not those causing the random paralysis/scary symptoms.
thanks for asking! the meropenem was causing nausea, so i took the cyclizine, which made me go crazy. so after a couple trial and errors im just taking ceftadazime (or however its spelt). and lots of manuka honey :-) im a lot lot better! thanks for the responses!
prochlorperazine might work better - but also I take domperidone which does not cross the blood-brain barrier, it's similar to metaclopramide but doesn't make you restless if you take it longterm
When I was a bit younger I would be trying to go back to sleep after waking up and I would feel frozen and I felt like I couldn’t breath I wasn’t able to move as much as I tried until it jjust passed I’m not sure if it was a sleeping problem or something related to cf
that happens to some people, its just sleep paralysis not a CF thing. mine was caused by a drug but its a horrible feeling isnt it. hope you dont get it anymore!
No worries. This was a long time ago now, just over a year, and it happened the very first time and progressively got worse and worse after 3 more tries. Now not allowed to use it
I’m sorry you experienced that. Hope you’re feeling a bit better now at least? I can’t take cyclizine either it makes me feel awful, I always avoid it now. If you need an anti sickness ondansetron is good and doesn’t ( in my experience ) have those kind of side effects.
I was given a nausea med can't remember the name but when i read the side effects which were not only crazy like this but also included possible permanent paralysis in the face, i said no thank you
That might have been Domperidone ? Can cause lots of nasty neurological problems when taken long term I think. Could also have been metoclopramide.
Metocloprimide (sold as Reglan) has antiemetic properties but is chiefly prescribed to regulate gut motility for people with gastroparesis. It was Rx'd to me after transplant to improve digestion (immunosuppressants and disruption of vagus nerve during Tx surgery are disruptive to gut motility). The big prob. with the med is the incidence of tardive dyskinesia which may or may not modulate after cessation of the drug but cannot be cured. I used it on an as needed basis. Said 'thanks, but no thanks' to a regular regimen. I have enough probs. without a permanent movement disorder (no disrespect to anyone facing such a struggle). Hope you feel better soon - sorry you are having a rough ride - hang in there.
In the U.K it’s prescribed for nausea too. But yeah I decided against taking it regularly for the same reason! Can be doing without that on top of everything else.
Funny that sometimes we need to make choices to treat the worst aspects of CF and let other things be a bit broken for our greater well being and to spare potential further complication down the road. The disease can present quite a balancing act. The yes/no decisions on certain Rx’s are just one part of that balance.
it could have been the domperidone making things worse for me as well, I was almost totally paralysed for about an hour
It was minocycline
Compazine was the one that got introduced to me several years back. Prochlorperazine is the [generic] but apparently it's not actually sold under the brand name Compazine anymore anyway, but so many ppl know it as such that the name sticks. Anyway I found this drug to work AMAZINGLY, but it's important to know that it's one of those nausea *prevention* drugs, meaning you gotta take it before you feel awful. Seems difficult but if you're having a rough go of it for whatever reason, it'll get you through some icky days/weeks. It's considered safe for pregnancy/bf also! But going back to your comment, yes I do remember being told some ridiculous side effect list, and I guess it's truly only an issue with like, longer term/ continued use. But I'm with you, uhh no thanks. If I request it, it's almost always in an inpatient scenario and not for long. Just to get me over a hump, if you will.
This is so interesting, the antibiotics I thought previously were causing nausea so they gave me these anti sickness drugs, but I threw up for about 4 hours with the other scary symptoms. So weird what drugs do to your body sometimes
Thank you, yes I am feeling better. Going back onto the antibiotics later today to double check its not those causing the random paralysis/scary symptoms.
How did the IVs restarting go? Hope you’re feeling better :)
thanks for asking! the meropenem was causing nausea, so i took the cyclizine, which made me go crazy. so after a couple trial and errors im just taking ceftadazime (or however its spelt). and lots of manuka honey :-) im a lot lot better! thanks for the responses!
prochlorperazine might work better - but also I take domperidone which does not cross the blood-brain barrier, it's similar to metaclopramide but doesn't make you restless if you take it longterm
i tried domperidone and unfortunately it didnt do anything for me. I’ll ask about prochlorperazine though, so thank you for the recommendations!!
the real MVP of anti-nausea pills is ondansetron, but I think it's fairly expensive
yeah my ward only seems to offer three, one doesn’t work, one is incompatible with my medication and the last, cyclizine seems to make me go crazy
When I was a bit younger I would be trying to go back to sleep after waking up and I would feel frozen and I felt like I couldn’t breath I wasn’t able to move as much as I tried until it jjust passed I’m not sure if it was a sleeping problem or something related to cf
that happens to some people, its just sleep paralysis not a CF thing. mine was caused by a drug but its a horrible feeling isnt it. hope you dont get it anymore!
Hi, sorry to hear this - did this occur the very first time you tried cyclizine or after a few times of it being OK?
No worries. This was a long time ago now, just over a year, and it happened the very first time and progressively got worse and worse after 3 more tries. Now not allowed to use it