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Ondansetron
Nauseous? You won’t be for long if you take ondansetron.
My wife has been on 8mg twice daily (oral dissolving and tabular at different times) + domperidone and it’s still not altered a chronic nausea that started at pregnancy. Little ones second birthday in a week, not a day without throwing up within minutes of eating or drinking anything at all - paramedics called it a starvation diet.
Not that there’s anything you can do, just getting increasingly desperate and throwing this out there in case anyone has anything to relate to this.
Super glad it’s working for you though - it’s a wonder drug for so many people!
Has she ever tried cannabis, don’t like cancer patients often find it helpful enough for their purposes? Any ideas as to the etiology of her conditon?
?Like, did the pregnancy flip some kind of epigenetic/latent switch of some sort?
Just starting CBD (nondetect THC) oil as of a few days ago, no results yet. Correct, it’s what cancer patients typically are prescribed for nausea. Truthfully no idea on the epigenetic thing, I’ll have to dig more into that tonight. Any idea where I might look for more on that? I’ve mainly accumulated a large Zotero library of white papers on hypermedia gravidarum, POTS, bacterial infections like h pylori, hormonal triggers, dopamine receptor dysfunction, that sort of thing.
I’ve been prescribed medical cannabis for over a year now and neither CBD or THC oil do anything for my appetite. Vaping dry herb does though, even the low THC stuff. Maybe I’m weird though!
CBD oil does wonders for my arthritis, depression and anxiety though. And I slept for over 6 hours for the first time in 2 years when I started THC oil.
I have also found that dry herb is the only thing effective for nausea or appetite. Which is really unfortunate since I’ve got lung issues, but the other formulations just don’t work.
I was disappointed too. I’ve never liked weed - the smell, the fuss, the mess, the taste. Blugh. I’d hoped oils would be all I needed but there’s no denying that dry herb vaping is more effective for my symptoms. The private pharmacy is going to start offering gummies as an alternative to herb, maybe that will work for me? Fingers crossed!
Thanks! Certainly keeping this in mind, I have to respect its not my body and THC is being kept as a last resort. It’s something I’ve come across as well but the hope is we’ll see some result from the CBD alone. Doctors are talking more and more about a feeding tube so this’ll probably come before that. I’ll let you know if and when we try!
I didn’t want to say it if it wasn’t already on your radar, but I have PoTS and know a number of people with jejunostomy feeding tubes due to their gastroparesis. I even know a girl on parenteral nutrition. I don’t think I’ve ever met anyone with nausea as their main symptom though so I didn’t think of PoTS until you mentioned you’d researched it.
I love the acknowledgment that it’s not your body - you sound like a loving, supportive partner 🙂 Sometimes the “answer” seems so simple when you’re not the patient but when you’re chronically ill, you’ve already lost so much control over your body… having to take a drug you don’t want to feels like a step too far. It’s hard to explain and I’m not doing a very good job!
THC is not remotely in the same category of awfulness as a feeding tube so I’m glad she’ll probably try that first. And you don’t need to get high high to feel the anti-nausea/pro-appetite benefits - I use less than 0.25gm a day, maybe even half that and it does the trick just fine. Wishing your wife better soon!
Thanks for taking the time.
I appreciate the mention of it, POTS was brought up early on but neglected until the heart conditions and pre-/syncope starting getting worse.
Paramedics were actually quite sure it’s the opposite of POTS while we were waiting to hear back on that specifically. The heart rate can tank from 80 to 40 in half a second while remaining in a resting position - this leads to fainting spells which is of course crazy dangerous.
On gastroparesis, we tested for this specifically with a radioactive tracer in a meal (that was promptly vomited up) but were able to conclusively determine it’s no gastroparesis. Blast - onto the next thing then!
You’re explaining wonderfully. I’ve got a huge mindmap I’ve been working on with all these conditions and drugs and hormone receptors and sometimes I’ll spend the early morning hours discovering “the most promising neuron receptor!!!” and I have to put myself in her shoes and recognize that’s maybe not all we want to talk about.
Thanks for mentioning the dosage, getting started with the CBD we’re looking at the container going “how the hell do we start this” - we’ve been relying on feedback like that for this sort of thing so I appreciate it.
Just… thanks for taking the time. It’s been almost 3 years now of this and hard to believe that it’s still gonna be temporary. We’ve moved the goalposts on ourselves a lot and hearing these things is such a help. Take care!
The issue is
nauseaspecifically :)Both CDB and THC reduce nausea.
I understand but I was thrown off when you mentioned appetite because it seemed like the issue at hand in this sub-discussion I was engaging with related to nausea not appetite
What specialists has she seen, particularly GI/maybe OBgyn/Endocrinologist?
If so, what do they say? This is kinda way above all our respective pay grades
We’ve been all over! Obgyn, half a dozen family doctors, GI specialist, cardiologist, therapists, endocrinologist, acupuncturist, half a dozen hospital trips to get IVs where we spoke we all the nurses and doctors we could, and paramedics when she was taken to the hospital. I’m sure I’ve missed some specialists. It’s always a “I have no idea what this is, I’ll refer you back to your family doctor”. We’ve taken it upon ourselves to push for diagnoses like h pylori but it’s been dead ends so far. I routinely export the hospitals charts to compile the data on my own to find trends and outlier values but nothing fruitful yet.
Most certainly above our pay grades. Definitely not looking for medical advice, more a plea for similar experiences to see what we could try next!
Thanks for your time and the post.
Does she have any history of eating disorders/body dysmorphia? You didn’t mention psychiatrist or any mental health leaning specialties and I wonder if its entirely physical or if theres a psychic component…Does she have any significant trauma history?
Maybe do an AskLemmy or the Reddit subreddit where medical professionals respond to differential diagnoses/mysteries and sometimes get to something
I am so sorry that she’s dealing with this. I’ve heard of successful treatment of intractable nausea using biofeedback therapy. The idea being that the body gets stuck in a negative feedback loop and trying to reverse that back to previous functioning.
I hope this gets better for her.
Thank you!! I’ve been convinced it’s a negative feedback loop myself but I’ve not been able to find anything worthwhile on this. This is super and I’ll be taking a close look tonight to add this to my Zotero library. I’ve been shut down by doctors before on cyclic vomiting syndrome but this looks very promising and worth a shot for sure especially with that shared etiology.
Take care!
Yeah, medically cyclic vomiting syndrome is usually more associated with cannabis abuse disorder, so you’re probably not going to get far trying to get that diagnosis specifically. But that doesn’t mean these same treatment regimens won’t help. Think of it as physical therapy for the gut and nervous system.
Sorry it’s not working for her! I think pregnancy might be a special type of nausea that’s a little harder to treat… I know ondansetron is commonly given to cancer patients and it’s enough for many of them and not enough for others. For those of us with more mundane nausea, it really is a miracle drug.
I hope she find something that helps her or she gets past the nausea stage soon. And congratulations on the upcoming family addition.
Pregnancy is a beast! We’re lucky he’s already with us, almost turning 2! Still sick however, curiously for a few minutes immediately after birth she felt 100% better but that came back permanently the instant she started to breastfeed the first time.
Thanks for your well wishes! Best to you.
Is there any body dysmorphia/eating disorder history?
None, one hypothesis is that during severe hyperemesis gravidarum in pregnancy the stomach lost the ability to tolerate food. The resulting low nutrition led to a complete lack of complex sugars in the bloodstream and a cycle of being unable to eat.
Heads up to anyone with cardiac issues, especially long QT syndrome or other meds that prolong the QT internal: Ondansetron is so notorious for QT prolongation and cardiac arrhythmia problems that we have to perform an EKG before we’re allowed to give you a second dose on our cardiac unit.
I have scary anecdotes that bias me against it lol
A relatively niche case, to be sure, but thank you for pointing it out.
Yeah, long QT syndrome is estimated around 1/2000 people. Relatively rare. I fully confess that I’m just traumatized by my personal experiences with patients taking the drug lol
Thats why I’m doing this thread, its a labor of love and curiosity but I’m intrigued to hear everyone dish freely about such a mundanely “taboo” subject
Where do you get it?
It’s by prescription only, but is an inexpensive prescription.
Apigenin (herbal supplement)
Insomnia, anxiety
Derived from chamomile flowers (and other plant sources), I’ve found this to be more successful in treating my chronic insomnia than any of the pharmaceutical options. (And believe me, I’ve tried them all.)
Was curious about this since Andrew Huberman mentioned it
It’s really safe even in absolutely large doses. (There are studies performed using doses in the multiple GRAM range.) I highly recommend trying it. Personally I take 400mg/night, which is twice the dosage you’ll see advertised. I only mention because I think the standard advertised range is probably too low for people like me.
Thanks! Is it expensive? How much do you get?
Oh man, you are really challenging my senior citizen brain here. I think I know how to bold things haha
I like Nootropics Depot as a source company. They sell it for $20 for a 30 count bottle of 200mg capsules.
Is that the dose, 1/night before bed?
Yep, that’s the usual recommended dose - 200mg like an hour before bedtime
Would you recommend it for other seniors particularly? My grandmother might like something like this? She liked Calm Magnesium Sleep except for the GI effect of magnesium citrate and I wonder it this might be easier on the system to the extent she’d be into it
Sumatriptan
Rapidly cures migraines.
Whats the dosing regimen, is it daily or as needed?
Best taken as soon as you feel a migraine coming on.
Coenzyme Q10
Energy, mitochondrial support, antioxidant
Personally, I think everyone should be taking this. Extremely safe, improves cardiac outcomes, some evidence that it can reverse damage in chronic kidney disease. Most people won’t feel different, but I take high dose CoQ10 for mitochondrial dysfunction, and I can tell you it definitely has a huge impact. Love this stuff.
Phenibut
Helps relieve anxiety and eases social contact. For me personally its just a mood enhancer and makes listening to music so good. About 500-1500mg is a normal dose, lasts for up to 24h and should not be taken more often than once a week.
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DMT (dimethyltryptamine)
Allowed for a sense of peace with my own mortality.
Is it necessary to leave empty replies like this though? I would like to have more replies to read too but I think it’s better to just let people come up with them.
(speaking as a user, not as a mod. Forgot lemmy always shows the icon)
- What was your particular orientation with that previously, like we’re all sort of shifty about death but I don’t think much about it (like before I was born, that doesn’t scare me so I kinda dont get the inverse of that)
- do you have a condition that makes this all the more prescient or timely
- any articulable messages you can share that encapsulate the experience we can try to glean from?
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roughly the same with added suicidal ideation
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no
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no
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Naltrexone
I will start with naltrexone, which can help people who have difficulty regulating their drinking have a more natural and sustainable relationship with alcohol should they choose to not cut it out of their lives entirely.
I consider this the closest thing to a “cure” for drinking problems but it required discipline and it doesn’t prevent actual impairment, only the buzz and liking/compulsion to keep overdoing it that day/session
Low Dose Naltrexone is amazing for all kinds of chronic pain and inflammation.
It’s also used for opioid abuse disorders. Truly a miracle drug.
Can you expand on its actual use (like Vivitrol?) My understanding is its primarily used to treat alcoholism/AUD but maybe Vivitrol is used for both…
I can’t comment on it personally, no, I’ve just heard and read about it some.
This article, for example, mentions dosage guidelines: https://www.mayoclinic.org/drugs-supplements/naltrexone-oral-route/proper-use/drg-20068408
[not snarky ;)] Pretty sure my understanding is correct, I’ve read about it before
I want to more rigorously experiment with it and other compulsive things I have challenges with, it seems the opioidergic system mediates
likingand the compulsive attachment that flows from that so I’m curious to what extent its effect is extensible to other problematic habits, chemical or otherwise
CBG For migraines Works as well as my prescriptions work less side effects. Many people use it as a preventative.
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Tianeptine
Trazodone (Desyrel)
[in relation to deep sleep promotion]
As a user of this whose primary problem is frequent waking at night rather than falling asleep, I don’t find it that helpful. It does help falling asleep, but it doesn’t help one stay asleep.
I’ve spoken with my sleep doctor about this and apparently basically the only thing that’s good for helping somebody stay asleep as opposed to fall asleep is a common date rape drug so it’s not commonly prescribed.
GHB
It really is too bad people misuse it like that. I’ve heard the sleep is insanely deep and refreshing and its a damn shame you’re automatically sketch if you want that for your own benefit
That’s the one. Very effective for people like me, but not very available.
I wish I could get diagnosed with narcolepsy so I could have it for that purpose, but it also sounds like an enormous bureaucratic headache and I also wouldn’t want someone to be able to take advantage of that knowledge/the rarity with which its prescribed to get you sucked into some bullshit sitch.
Edit:
people like me [you]
u narcoleptic dude?
Yep
Pregabalin (Lyrica)
Fascinating medication that I have found to annihilate anxiety (excellent anxiolytic) and promote social cohesion/sociabillity/oversharing beware. Takes the edge of stimulants as well
Almost like a pharmaceutical slightly sedative-leaning version of ecstasy but obviously quite distinct pharmacologically and not a replacement for same.
Phenmetrazine (Preludin)
Guanfacine (Intuniv)
D-Phenylalanine
[“endorphin reuptake inhibitor”?]
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