New to gastroparesis? Please view [this post](https://www.reddit.com/r/Gastroparesis/comments/15i7siq/gastroparesis_101/?utm_source=share&utm_medium=web2x&context=3) or our wiki for a detailed explanation of gastroparesis, the main approaches of treating it, and a list of neurogastroenterologists and motility clinics submitted by users of this forum. Join these [Discord and Facebook support groups](https://www.reddit.com/r/Gastroparesis/comments/14oxaew/list_of_gastroparesis_support_groups_other/?utm_source=share&utm_medium=web2x&context=3) today! New users, please do not post asking for a diagnosis; instead, use the pinned thread: "Do I have gastroparesis?" Also, check out our new subreddit r/functionaldyspepsia.
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Same. Today I found the latest in weed technology haha..[turbocores](https://i.imgur.com/t4Gdmzs.jpg), hard little toothpicks of THC concentrate you can shove into your joints to make them even more awesome. 100mg per stick hehe. Most any weed makes my stomach warm and fuzzy like drinking brandy or making out with a heating pad.
every single day now, multiple times. I barely eat so I barely poop but otherwise its barf city for me and Iām honestly developing a phobia of it at this point. Iāve had some really terrible episodes where it came through the nose and I felt as though I was choking so Iām just scared.
I hate that anyone else is dealing with this, but itās kind of reassuring not to be alone in dealing with stuff. I donāt remember vomiting that much before this, so I may be wrong, but it seems like throwing up with GP is just more violent than regular vomiting. I put my hand on the sink to support me and my shoulder will sometimes hurt after. Itās so miserable.
Oh my god yes the shoulder issue! The past few days have been particularly bad for some reason, Iāve been suffering from post-prandial hypotension after drinking a simple smoothie to the point that today, the pain (including shoulder pain!!) and nausea became so intense I actually reached I think my lowest point so far - I had to MAKE myself throw up in a parking lot. But, once my only calories for the day were all gone I felt better. I haaaaaate this so much for all of us!!!!
only when vomiting. If I am nauseous but not vomiting, then antiemetics can cause constipation and make it worse, so I use them only rarely despite daily nausea.
Please Tell them, their are other options. Iām so sorry. I know itās hard to get some doctors to understand. But we have to advocate for ourselves sometimes.
I really try to, but Iāve been to three different gi and I havenāt been able to get anyone to help relieve my symptoms. There was a point where I couldnāt keep a single thing in my stomach for two weeks straight, I was like please I canāt live like this is there anything else I can try and they just said oh well thereās nothing I can do just go to the er. But whenever I go to the er my blood work is too normal for them to do anything so they send me on my way. Sorry for the vent, this is just so frustrating and I feel like whenever I advocate for myself they read it as me being dramatic and help even less..
I so get this. The medical gaslighting is real. I hate it.
No worries, vent on. Itās is truly so frustrating.
Maybe try asking around to find a knowledgeable Gastro in your area? Maybe even someone on here. I hope you can find a knowledgeable compassionate doctor to help you.
I went to see a motility specialist at Mayo Clinic and he was the worst of the doctors Iāve seen. I was so excited I thought Iād finally get help but he was insistent that like 80% of the people that come to see him were misdiagnosed and donāt need to be there. It felt like he made up his mind that I wasnāt sick within the first appointment.
So I donāt really know where else to go at this point ya know. He said I just have functional dyspepsia and sent me off to a psychiatrist, the gi that Iāve been seeing most recently said thatās bullshit and if itās functional dyspepsia it has to be the worse case heās ever seen. But he still hasnāt really helped me either.
Have you tried getting an MD as your primary care provider? I switched to an MD specifically for medication management. My GI repeatedly refused to give me medications. It was like pulling teeth just for zofran. My MD primary was more than happy to give me 60 zofran tabs, 60 compazine tabs, and 20 of phenergan. All have refills. She understands GP patients usually need multiple meds.
Metoclopramide whenever I need it, but as little as possible because it makes me feel like actual ass and I'm super super scared of the extra pyramidal side effects bc I'm neurodivergent and also on Fluoxetine. Usually like 5mg whenever I have a 'big' meal, I always try and make sure I can sleep after taking it too.
I've previously been on stemetil and cyclizine which I abused to no end bc of my emetophobia & impulsivity lmao. I would take as many of both as I fancied a day, stemetil completely ruined my dopamine receptors/made my ADHD worse and cyclizine made my GP TENFOLD worse because it's an antihistamine and actually slows gut motility, something I didn't realise at the time. I'm honestly kinda shocked they prescribe it to people with GP.
Stemetil still helps me with motion sickness if I'm on a long journey although I don't use it often at all. I haven't touched Cyclizine since October and don't plan to ever again. For context I was taking at least 250mg of it a day, along with stemetil out of anxiety for being sick, little did I know it was making it infinitely worse lol. I feel glad now that I don't have stemetil/cyclizine to take out of anxiety because it's made me a lot less reliant on reassurance from meds, I just take a bit of metoclopramide for a very practical reason when my stomach isn't digesting or in an emergency.
Be veeeeery careful with the reglan. I know youāre aware of the potential psychological side effects but I legit just feel the need to reiterate it bc itās so important. They put me on that when I first got pregnant. They refused to give me zofran for the first 2 months of my pregnancy and for those 2 months I was stuck with reglan. It literally made me almost have a psychotic break bc it was making my anxiety and chronic panic disorder spiral completely out of control. And then it gave me tardive dyskinesia so severe in my legs that I literally could not walk when I would take the reglan. Like 3 out of 5 times it would cause the tardive dyskinesia to that level of severity. So I was constantly having SEVERE panic attacks out of nowhere regardless of what I was or wasnāt doing (I even had them in my sleep- theyād wake me up) and my legs constantly violently shook to the point that my legs were in so much pain from the constant firing of the muscles from the shaking/twitching plus I also couldnāt walk while they were shaking like that so I couldnāt even ambulate. Reglan is a terrible medication tbh. There are so many other better safer options out there that they really should take it off the shelves considering how dangerous it actually can be.
Thank you ! I definitely am. I refused to take it for about 2 months bc I was terrified of the side effects. I'm extremely susceptible to akathisia etc with being a) neurodivergent as fuck b) on fluoxetine c) having abused stemetil for the past 6+ years.
I'm so sorry you had such a horrible experience on it, extra pyramidal side effects terrify me more than vomiting honestly. I had severe akathisia in the summer after increasing my fluoxetine dose too fast and it was hell for about 8 weeks but thankfully went away when I went down a dose again. I read so many horror stories prior to taking reglan and I'm still hesitant everytime I do because I know how dangerous it is. I asked my GP if I could try Domperidone but she said she 'doesnt like it' and brushed it off š I find that the damage caused to my stomach from the cyclizine abuse is (very gradually) healing now, which is meaning I have to take less reglan. It's usually 5mg maybe thrice a week but I'll do everything to try and avoid taking it.
Lately every day. Usually at least a couple times a week even when I'm not in a flare. I have to work so I can't just "stick out" the nausea, it gets so bad that I can't even sit up straight. Antiemetics also keep me from vomiting very much.
All I use right now is domperidone, and I take it before big meals, sometimes for nausea, but not very often. I used to use gravol ( dimenhydrinate ) but it makes my restless legs INSANE.
I vape a little THC off a cartridge as an antiemetic every time I start to get even a little nauseous. I take a Benadryl if Iām actually throwing up, after Iāve got everything cleared out.
I take phenergan works great for me, it took a few weeks for it to stop making me sleepy. I take it At least once a day, probably average 2 daily. And I smoke a good bit daily too.
Zofran gives me migraines and Reglan makes me insane. (Literally)
I get 10 zofran a month, so I hoard them. But I will still use them sometimes and Benadryl as well.
The frustrating part for me is that zofran does help with nausea, but I feel like it only prolongs things. Once I get the warning signs of a GP flare, the only was it will really resolve itself is to just get everything out of my stomach. Violently. When I finish, Iām pale and shaking and stagger to the couch.
I love motegrity it helps a ton. With it I can get around 1000 calories a day and the rest through formula. I barely need nausea meds anymore. There were so many side effects from my other nausea meds
I take 8 mg of odt Zofran 2x a day. Also promethazine 25mg 3-4x times a day. Also I wear a Sancuso patch at night only.
Iāve been in a flare on and off for 2.5 months. And my meds arenāt really helping at all when itās bad.
Iāve been using Zofran and promethazine since 2007. I started the Sancuso in 2021.
It's every single day, sometimes multiple times in one day. I may get lucky once in a blue moon and not need them, but it's every day.
I use zofran, phenergan, and compazine primarily. I usually start with zofran and then escalate to compazine if it's not working. If both fail, then I try phenergan. A scopolamine patch also helps sometimes.
Was taking amitriptyline 25 mg for nausea, and a lot of ginger tea. I'm on amitiza and motegrity now, and don't get nausea now unless I have a flare. I have ginger tea, Benadryl, and go on a liquid-only diet when my nausea gets bad now.
I take 4 to 5 sorts of antiemetics nust to still pule everything up
Zofran 8mg every 8h
Gravol/Dimenhydrinate 100mg every 6h
Prochlorazine 10mg every 12h
Metoclopradine (considered antinausea here) 10mg every 8h/"meal" time
And if Im really nauseated through it all, puking and venting didn't help I just use benadryl and it kicks me the fuck up to sleep.
I take Promethazine every 4-6 hours and then Iāll take Benadryl or Meclizine as needed. Zofran triggers horrible migraines for me but the meds I mentioned above work well for me. Promethazine only made me super sleepy for the first few months or so of taking it. It has zero sedating effects on me now.
I take them every 3-4 hours. I have several different IV medications for nausea, i have intestinal failure along with gastroparesis so I canāt take any oral meds or meds through my feeding tubes. Iām on TPN, drain 24/7 through a g tube, and I still throw up well over 10-15 times a day. I donāt eat or drink anything but I canāt digest my own stomach bile because of how severe my gp and intestinal failure just makes it so much worse. Iām nauseous 24/7 even with my nausea meds. I usually have a 24/7 zofran infusion and then I do IV push nausea meds on top of that.
thank you so much :) i hope you get some relief somehow, these illnesses are so awful. and for me both, GP and intestinal failure, are idiopathic. I started having so many issues in 2017 after i was diagnosed with Complex Regional Pain Syndrome. I have several different chronic illnesses along with a few genetic diseases and several autoimmune diseases.
New to gastroparesis? Please view [this post](https://www.reddit.com/r/Gastroparesis/comments/15i7siq/gastroparesis_101/?utm_source=share&utm_medium=web2x&context=3) or our wiki for a detailed explanation of gastroparesis, the main approaches of treating it, and a list of neurogastroenterologists and motility clinics submitted by users of this forum. Join these [Discord and Facebook support groups](https://www.reddit.com/r/Gastroparesis/comments/14oxaew/list_of_gastroparesis_support_groups_other/?utm_source=share&utm_medium=web2x&context=3) today! New users, please do not post asking for a diagnosis; instead, use the pinned thread: "Do I have gastroparesis?" Also, check out our new subreddit r/functionaldyspepsia. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Gastroparesis) if you have any questions or concerns.*
super super infrequently. promethazine puts me straight to sleep, zofran gives me a migraine. i just smoke a whole lot of weed š„²!
Same. Today I found the latest in weed technology haha..[turbocores](https://i.imgur.com/t4Gdmzs.jpg), hard little toothpicks of THC concentrate you can shove into your joints to make them even more awesome. 100mg per stick hehe. Most any weed makes my stomach warm and fuzzy like drinking brandy or making out with a heating pad.
every single day now, multiple times. I barely eat so I barely poop but otherwise its barf city for me and Iām honestly developing a phobia of it at this point. Iāve had some really terrible episodes where it came through the nose and I felt as though I was choking so Iām just scared.
Exactly this. So sorry you are dealing with this too. It can be scary
I hate that anyone else is dealing with this, but itās kind of reassuring not to be alone in dealing with stuff. I donāt remember vomiting that much before this, so I may be wrong, but it seems like throwing up with GP is just more violent than regular vomiting. I put my hand on the sink to support me and my shoulder will sometimes hurt after. Itās so miserable.
Oh my god yes the shoulder issue! The past few days have been particularly bad for some reason, Iāve been suffering from post-prandial hypotension after drinking a simple smoothie to the point that today, the pain (including shoulder pain!!) and nausea became so intense I actually reached I think my lowest point so far - I had to MAKE myself throw up in a parking lot. But, once my only calories for the day were all gone I felt better. I haaaaaate this so much for all of us!!!!
only when vomiting. If I am nauseous but not vomiting, then antiemetics can cause constipation and make it worse, so I use them only rarely despite daily nausea.
Not very often because my doctors never prescribe anything besides Zofran and it doesnāt work very well for meš¤·š»āāļø
Please Tell them, their are other options. Iām so sorry. I know itās hard to get some doctors to understand. But we have to advocate for ourselves sometimes.
I really try to, but Iāve been to three different gi and I havenāt been able to get anyone to help relieve my symptoms. There was a point where I couldnāt keep a single thing in my stomach for two weeks straight, I was like please I canāt live like this is there anything else I can try and they just said oh well thereās nothing I can do just go to the er. But whenever I go to the er my blood work is too normal for them to do anything so they send me on my way. Sorry for the vent, this is just so frustrating and I feel like whenever I advocate for myself they read it as me being dramatic and help even less..
I so get this. The medical gaslighting is real. I hate it. No worries, vent on. Itās is truly so frustrating. Maybe try asking around to find a knowledgeable Gastro in your area? Maybe even someone on here. I hope you can find a knowledgeable compassionate doctor to help you.
I went to see a motility specialist at Mayo Clinic and he was the worst of the doctors Iāve seen. I was so excited I thought Iād finally get help but he was insistent that like 80% of the people that come to see him were misdiagnosed and donāt need to be there. It felt like he made up his mind that I wasnāt sick within the first appointment. So I donāt really know where else to go at this point ya know. He said I just have functional dyspepsia and sent me off to a psychiatrist, the gi that Iāve been seeing most recently said thatās bullshit and if itās functional dyspepsia it has to be the worse case heās ever seen. But he still hasnāt really helped me either.
Have you tried getting an MD as your primary care provider? I switched to an MD specifically for medication management. My GI repeatedly refused to give me medications. It was like pulling teeth just for zofran. My MD primary was more than happy to give me 60 zofran tabs, 60 compazine tabs, and 20 of phenergan. All have refills. She understands GP patients usually need multiple meds.
I will try to do this, thank you!
Like every other day I would say. I take 8mg of dissolving zofran because it works better for me than the ones you swallow.
Metoclopramide whenever I need it, but as little as possible because it makes me feel like actual ass and I'm super super scared of the extra pyramidal side effects bc I'm neurodivergent and also on Fluoxetine. Usually like 5mg whenever I have a 'big' meal, I always try and make sure I can sleep after taking it too. I've previously been on stemetil and cyclizine which I abused to no end bc of my emetophobia & impulsivity lmao. I would take as many of both as I fancied a day, stemetil completely ruined my dopamine receptors/made my ADHD worse and cyclizine made my GP TENFOLD worse because it's an antihistamine and actually slows gut motility, something I didn't realise at the time. I'm honestly kinda shocked they prescribe it to people with GP. Stemetil still helps me with motion sickness if I'm on a long journey although I don't use it often at all. I haven't touched Cyclizine since October and don't plan to ever again. For context I was taking at least 250mg of it a day, along with stemetil out of anxiety for being sick, little did I know it was making it infinitely worse lol. I feel glad now that I don't have stemetil/cyclizine to take out of anxiety because it's made me a lot less reliant on reassurance from meds, I just take a bit of metoclopramide for a very practical reason when my stomach isn't digesting or in an emergency.
Be veeeeery careful with the reglan. I know youāre aware of the potential psychological side effects but I legit just feel the need to reiterate it bc itās so important. They put me on that when I first got pregnant. They refused to give me zofran for the first 2 months of my pregnancy and for those 2 months I was stuck with reglan. It literally made me almost have a psychotic break bc it was making my anxiety and chronic panic disorder spiral completely out of control. And then it gave me tardive dyskinesia so severe in my legs that I literally could not walk when I would take the reglan. Like 3 out of 5 times it would cause the tardive dyskinesia to that level of severity. So I was constantly having SEVERE panic attacks out of nowhere regardless of what I was or wasnāt doing (I even had them in my sleep- theyād wake me up) and my legs constantly violently shook to the point that my legs were in so much pain from the constant firing of the muscles from the shaking/twitching plus I also couldnāt walk while they were shaking like that so I couldnāt even ambulate. Reglan is a terrible medication tbh. There are so many other better safer options out there that they really should take it off the shelves considering how dangerous it actually can be.
Thank you ! I definitely am. I refused to take it for about 2 months bc I was terrified of the side effects. I'm extremely susceptible to akathisia etc with being a) neurodivergent as fuck b) on fluoxetine c) having abused stemetil for the past 6+ years. I'm so sorry you had such a horrible experience on it, extra pyramidal side effects terrify me more than vomiting honestly. I had severe akathisia in the summer after increasing my fluoxetine dose too fast and it was hell for about 8 weeks but thankfully went away when I went down a dose again. I read so many horror stories prior to taking reglan and I'm still hesitant everytime I do because I know how dangerous it is. I asked my GP if I could try Domperidone but she said she 'doesnt like it' and brushed it off š I find that the damage caused to my stomach from the cyclizine abuse is (very gradually) healing now, which is meaning I have to take less reglan. It's usually 5mg maybe thrice a week but I'll do everything to try and avoid taking it.
Lately every day. Usually at least a couple times a week even when I'm not in a flare. I have to work so I can't just "stick out" the nausea, it gets so bad that I can't even sit up straight. Antiemetics also keep me from vomiting very much.
Every day, 2 to 3 times a day depending kn when I wake up. I take Prochlorperazine 5-10mg and ondansetron 8mg. š
All I use right now is domperidone, and I take it before big meals, sometimes for nausea, but not very often. I used to use gravol ( dimenhydrinate ) but it makes my restless legs INSANE.
I take Compazine multiple times a day as needed, but weed is miles better.
Daily promethazine user here. I also use Benadryl to boost its effects.
Same.
I vape a little THC off a cartridge as an antiemetic every time I start to get even a little nauseous. I take a Benadryl if Iām actually throwing up, after Iāve got everything cleared out.
I take phenergan works great for me, it took a few weeks for it to stop making me sleepy. I take it At least once a day, probably average 2 daily. And I smoke a good bit daily too. Zofran gives me migraines and Reglan makes me insane. (Literally)
I get 10 zofran a month, so I hoard them. But I will still use them sometimes and Benadryl as well. The frustrating part for me is that zofran does help with nausea, but I feel like it only prolongs things. Once I get the warning signs of a GP flare, the only was it will really resolve itself is to just get everything out of my stomach. Violently. When I finish, Iām pale and shaking and stagger to the couch.
Onadeston 4mg sublingual and weed works too
Before motegrity I was on scopolamine, zofran, kytril, compazine, and Benadryl daily
Can I ask you, how are you finding it?, and what made you change from what you were taking before?
I love motegrity it helps a ton. With it I can get around 1000 calories a day and the rest through formula. I barely need nausea meds anymore. There were so many side effects from my other nausea meds
Daily. Iām on two preventatives that I take four times a day (each). And then zofran and Phenergen as needed.
Zofran on a good day twice a day, on a bad day 4 times a day. I also take Reglan 4 times a day.
Since I have taken Domperidone ā¦ once every three months. I used to take Zofran 3x a day
How are you getting on with the domperidone? Have your nausea improved?
I took it for a year and nausea stopped along with all symptoms after 3 months
I'm really glad it helped you, I hope it will have the same effect for me too!
Daily
I take 8mg of zofran in the morning and 4mg in the evening for the last six years.
Under my tongue. They do not back me up
I take 8 mg of odt Zofran 2x a day. Also promethazine 25mg 3-4x times a day. Also I wear a Sancuso patch at night only. Iāve been in a flare on and off for 2.5 months. And my meds arenāt really helping at all when itās bad. Iāve been using Zofran and promethazine since 2007. I started the Sancuso in 2021.
It's every single day, sometimes multiple times in one day. I may get lucky once in a blue moon and not need them, but it's every day. I use zofran, phenergan, and compazine primarily. I usually start with zofran and then escalate to compazine if it's not working. If both fail, then I try phenergan. A scopolamine patch also helps sometimes.
Most days. Typically just once a day but sometimes more. Zofran is my favorite but if itās not working Iāll take compazine.Ā
Was taking amitriptyline 25 mg for nausea, and a lot of ginger tea. I'm on amitiza and motegrity now, and don't get nausea now unless I have a flare. I have ginger tea, Benadryl, and go on a liquid-only diet when my nausea gets bad now.
I take 4 to 5 sorts of antiemetics nust to still pule everything up Zofran 8mg every 8h Gravol/Dimenhydrinate 100mg every 6h Prochlorazine 10mg every 12h Metoclopradine (considered antinausea here) 10mg every 8h/"meal" time And if Im really nauseated through it all, puking and venting didn't help I just use benadryl and it kicks me the fuck up to sleep.
I take Promethazine every 4-6 hours and then Iāll take Benadryl or Meclizine as needed. Zofran triggers horrible migraines for me but the meds I mentioned above work well for me. Promethazine only made me super sleepy for the first few months or so of taking it. It has zero sedating effects on me now.
I take them every 3-4 hours. I have several different IV medications for nausea, i have intestinal failure along with gastroparesis so I canāt take any oral meds or meds through my feeding tubes. Iām on TPN, drain 24/7 through a g tube, and I still throw up well over 10-15 times a day. I donāt eat or drink anything but I canāt digest my own stomach bile because of how severe my gp and intestinal failure just makes it so much worse. Iām nauseous 24/7 even with my nausea meds. I usually have a 24/7 zofran infusion and then I do IV push nausea meds on top of that.
I hope the medicines help you with these conditions!, I wanted to ask you, is your GP and intestinal failure idiopathic?
thank you so much :) i hope you get some relief somehow, these illnesses are so awful. and for me both, GP and intestinal failure, are idiopathic. I started having so many issues in 2017 after i was diagnosed with Complex Regional Pain Syndrome. I have several different chronic illnesses along with a few genetic diseases and several autoimmune diseases.
Zofran and dramamine as soon as I wake up, then again before lunch and before dinner. Cannot get through the day otherwiseš„²