this post was submitted on 06 Dec 2023
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[–] Drusas@kbin.social 5 points 1 year ago* (last edited 1 year ago) (2 children)

Ondansetron

Nauseous? You won't be for long if you take ondansetron.

[–] shibbityshooby@feddit.uk 2 points 1 year ago (3 children)

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!

[–] cheese_greater@lemmy.world 3 points 1 year ago* (last edited 1 year ago) (1 children)

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?

[–] shibbityshooby@feddit.uk 2 points 1 year ago (2 children)

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.

[–] SomeoneElseMod@feddit.uk 3 points 1 year ago (3 children)

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.

[–] Drusas@kbin.social 4 points 1 year ago (1 children)

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.

[–] SomeoneElseMod@feddit.uk 3 points 1 year ago

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!

[–] shibbityshooby@feddit.uk 3 points 1 year ago (1 children)

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!

[–] SomeoneElseMod@feddit.uk 3 points 1 year ago (1 children)

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!

[–] shibbityshooby@feddit.uk 3 points 1 year ago

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!

[–] cheese_greater@lemmy.world 1 points 1 year ago* (last edited 1 year ago) (1 children)

The issue is nausea specifically :)

[–] SomeoneElseMod@feddit.uk 3 points 1 year ago (1 children)

Both CDB and THC reduce nausea.

[–] cheese_greater@lemmy.world 1 points 1 year ago* (last edited 1 year ago) (1 children)

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

[–] SomeoneElseMod@feddit.uk 3 points 1 year ago (1 children)

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.

[–] cheese_greater@lemmy.world 2 points 1 year ago* (last edited 1 year ago)

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

[–] cheese_greater@lemmy.world 2 points 1 year ago* (last edited 1 year ago) (1 children)

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

[–] shibbityshooby@feddit.uk 2 points 1 year ago (1 children)

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.

[–] cheese_greater@lemmy.world 2 points 1 year ago* (last edited 1 year ago)

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

[–] Drusas@kbin.social 3 points 1 year ago (1 children)

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.

[–] shibbityshooby@feddit.uk 2 points 1 year ago

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.

[–] cheese_greater@lemmy.world 1 points 1 year ago (1 children)

Is there any body dysmorphia/eating disorder history?

[–] shibbityshooby@feddit.uk 2 points 1 year ago

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.

[–] cheese_greater@lemmy.world 1 points 1 year ago* (last edited 1 year ago) (1 children)
[–] Drusas@kbin.social 3 points 1 year ago

It's by prescription only, but is an inexpensive prescription.

[–] tomi000@lemmy.world 3 points 1 year ago* (last edited 1 year ago) (2 children)

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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[–] Drusas@kbin.social 3 points 1 year ago (2 children)

Sumatriptan

Rapidly cures migraines.

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[–] cheese_greater@lemmy.world 2 points 1 year ago* (last edited 1 year ago) (1 children)
[–] can@sh.itjust.works 1 points 1 year ago* (last edited 1 year ago) (2 children)

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)

[–] cheese_greater@lemmy.world 1 points 1 year ago (1 children)
  • 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?
[–] can@sh.itjust.works 2 points 1 year ago
  • roughly the same with added suicidal ideation

  • no

  • no

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[–] cheese_greater@lemmy.world 2 points 1 year ago

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.

[–] cheese_greater@lemmy.world 1 points 1 year ago
[–] cheese_greater@lemmy.world 1 points 1 year ago* (last edited 1 year ago) (1 children)

Trazodone (Desyrel)

[in relation to deep sleep promotion]

[–] Drusas@kbin.social 2 points 1 year ago (1 children)

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.

[–] cheese_greater@lemmy.world 1 points 1 year ago* (last edited 1 year ago) (1 children)

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

[–] Drusas@kbin.social 2 points 1 year ago (1 children)

That's the one. Very effective for people like me, but not very available.

[–] cheese_greater@lemmy.world 1 points 1 year ago* (last edited 1 year ago) (1 children)

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?

[–] cheese_greater@lemmy.world 1 points 1 year ago* (last edited 1 year ago) (1 children)

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

[–] Drusas@kbin.social 2 points 1 year ago (2 children)

It's also used for opioid abuse disorders. Truly a miracle drug.

[–] cheese_greater@lemmy.world 1 points 1 year ago* (last edited 1 year ago)

I want to more rigorously experiment with it and other compulsive things I have challenges with, it seems the opioidergic system mediates liking and 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

[–] cheese_greater@lemmy.world 1 points 1 year ago* (last edited 1 year ago) (1 children)

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...

[–] Drusas@kbin.social 2 points 1 year ago (1 children)

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

[–] cheese_greater@lemmy.world 1 points 1 year ago* (last edited 1 year ago)

[not snarky ;)] Pretty sure my understanding is correct, I've read about it before

[–] Today@lemm.ee 1 points 1 year ago (1 children)

CBG For migraines Works as well as my prescriptions work less side effects. Many people use it as a preventative.

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[–] cheese_greater@lemmy.world 0 points 1 year ago* (last edited 1 year ago)

D-Phenylalanine

["endorphin reuptake inhibitor"?]

[–] cheese_greater@lemmy.world 0 points 1 year ago* (last edited 1 year ago)

Memantine

[smart drug/tolerance prevention]

[–] cheese_greater@lemmy.world 0 points 1 year ago* (last edited 1 year ago)

Phenmetrazine (Preludin)

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