[EXPERIMENTAL] What are your hidden gem medications/drugs/substances and what makes them ideal for your usecase [Bolded Substance Name (Brand/Street Name) + New Paragraph folks]
[EXPERIMENTAL] What are your hidden gem medications/drugs/substances and what makes them ideal for your usecase [Bolded Substance Name (Brand/Street Name) + New Paragraph folks]
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Ondansetron
Nauseous? You won't be for long if you take ondansetron.
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
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!
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.
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
I think I did that thing when you start a conversation in your head and then your comment posted mid-thought has no context, iykwim?! What I was thinking was: Feeling nauseated can reduce your appetite, as can repeated vomiting and the anxiety associated with it. People with chronic nausea tend not to want to eat, and not eating (or vomiting what you eat) is far more medically problematic than experiencing nausea. Hence, stimulating appetite as well as suppressing nausea is what makes medical cannabis so useful for cancer patients. But OPs wife isn’t going to see the anti nausea/increased appetite side effects from CBD alone. THC is the more important cannabinoid, and if she’s no longer pregnant/breast feeding she shouldn’t have a problem getting it prescribed- even in the UK. But it will be a private prescription here which is expensive af.
Ya, I do that thing way to often but the train usually ends up in the right hangar/airport ;)
Also, ya there's definitely an intimate feedback loop/dance with appetite and nausea
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.
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.
Where do you get it?
It's by prescription only, but is an inexpensive prescription.