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  • SomeoneElseMod@feddit.uk
    2·
    11 months ago

    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
      2·
      11 months 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!