shibbityshooby @ shibbityshooby @feddit.uk

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2 yr. ago

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!

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!

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.

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.

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!

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.

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.

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!

Another thing to consider is it might be worth getting a cheap $50 Wacom tablet to plug in for that, I’m running a non touch laptop and that’s what I’ve grown quite satisfied with however I mainly use it at home.