Ondansetron
Nauseous? You won't be for long if you take ondansetron.
this post was submitted on 06 Dec 2023
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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
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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!
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.
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!
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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
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.
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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
I actually WOULD recommend this for seniors. It does not have any anticholinergic side effects like a lot of pharmaceutical sedatives do, and it doesn't interact with the most common blood pressure or cardiac meds that older folks often take.
I have the same problem with magnesium supplements. Mag glycinate has less of that laxative effect than mag citrate, so she could try that as well.
The only two caveats I would add are: she should definitely tell her doctors she's taking it, as with any OTC supplement. And if she's specifically on a drug called warfarin (Coumadin), she should be very cautious. (Even Tylenol can cause warfarin to build up in the body. Warfarin sucks, so we don't use it as much anymore, but it's not unheard of.)
Hope that helps! (I'm a cardiac nurse. I work with older folks a lot.)
Thanks, I'm in talks with the right expert hehe :)
More specifically, is it genuinely helpful for quality of sleep, all other things being constructive towards that end in turn?
Hahaha, I love working with older folks. They're my favorite patients.
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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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.
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.
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