• DillyDaily@lemmy.world
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      8 months ago

      As someone with chronic idiopathic hyperemesis, this is a mood.

      I vomit too often and for too long to find anything zen about it. I spend the entire time heaving anxiously worrying over the state of my tooth enamel and trying to remember if I ate beets or chocolate last night to explain that colour or if I need to call an ambulance.

      I vomit while using my phone. I’ll play a podcast, video, music, etc

      If I’m going to be heaving for 20 minutes 2-4 times a day every day for a few months, I’m not doing it in silence with my own thoughts.

      I’ve been dealing with this on and off for about 7 years now, twice a year I’ll just have a 1-2 months straight where I can’t keep anything down, not even water unless I’m vigilant about stretching out my water intake over a whole day one tiny sip at a time. Then just as suddenly as it starts, one day I’ll wake up and I just magically won’t feel nauseous, and it’s like I was never even sick!

      Because it goes away on its own I’ve never been able to get to the bottom of it. When it starts happening, I book in with a doctor, by the time I finally see the doctor, the “flare up” has passed and any tests the doctor runs when I’m not sick are always normal. So doctors will just blame my migraine disorder for it, and move on. I recently learned about Cyclic Vomiting Syndrome so that’s something I’m going to be talking to my doctor about when I see him next.

      • gandalf_der_12te@feddit.de
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        8 months ago

        Then just as suddenly as it starts, one day I’ll wake up and I just won’t feel nauseous, and it’s like I was never even sick!

        Because it goes away on its own I’ve never been able to get to the bottom of it. When it starts happening, I book in with a doctor, by the time I finally see the doctor, the “flare up” has passed and any tests the doctor runs when I’m not sick are always normal.

        Yeah, this part hits with me. Every single time I go to the doctor, the symptoms disappear, and I question whether I really need a doctor. Then they reappear again :-/

        It’s like the sickness is avoiding being detected or sth… Like honestly, it stops the exact day of the appointment. And it’s worst on friday evening and saturday, where there’s definitely no impulse doctor visit. I’m being played.

    • zip@lemmy.blahaj.zone
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      8 months ago

      It sounds like we’re dealing with super similar things, except sometimes I can manage to eat some solid foods, and sometimes I can even keep it down! I survive on Ensure and electrolyte drinks like Gatorade/Liquid IV/Pedialyte, too. I’ve got a low weight but kinda bloated or distended (for lack of a better word - I’ve got intense brain fog, I’m sorry) gut area, too. I’ve got some theories* but I don’t have the money or resources or energy to try the chaos of doctors throwing things at me to see what sticks, or suggesting stupid shit I already tried a million times, or blaming it on me somehow, lol. So I’m just kind of dealing with it because of a mix of lack of money/resources and being burned out by the experiences of being ‘mysteriously’ chronically i’ll and trying to seek medical care. I hope and pray you figure it out soon and don’t get burned out!

      *I’d like to suggest looking further into one of my theories/something someone else mentioned in that thread, because I’ve found that the way it affects a lot of people isn’t super well reflected by the stuff you usually find when reading about it, but I don’t want to disrespect your wishes! If you’re interested, let me know, and if not, I’d totally understand. I know how people can get with their unsolicited advice and how annoying and exhausting it can be, even if they’re just trying to help lol.

      I wish you all the best and I’m sorry you’re dealing with this. I hope the Mayo Clinic can help figure something out. I totally suck at replying and stuff because of my health issues, but you’re welcome to message me (or I can give you my email or number to text or discord or something, if you’d like) whenever you want to vent or anything to someone who has some understanding and overlapping experiences. Also I hope this all makes sense and isn’t too much of a mess to read - burn out and brain fog and stuff makes it tough to gather and convey my thoughts. But I wanted to at least try to say something because our experiences our so damn similar!! I really feel for you.

      What’s your favorite flavor of ensure? I usually go for the Milk Chocolate (of the Plus variety since it has more calories and protein and all that.) Also I don’t know if you can stomach Pedialyte, but there’s a variety that has prevital prebiotics (or something like that - brain fog again, I apologize) and I don’t know if they make any difference, but I figure it’s probably good for my stomach issues. I dunno, just throwing that out there.

      I wish you all the best and I’m sorry this comment is such a mess!! Please don’t feel any obligation to reply 💕

      • gandalf_der_12te@feddit.de
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        8 months ago

        I’d like to suggest looking further into one of my theories/something someone else mentioned in that thread, because I’ve found that the way it affects a lot of people isn’t super well reflected by the stuff you usually find when reading about it, but I don’t want to disrespect your wishes! If you’re interested, let me know

        I would like to know. I’ve experienced a similar thing.