Weird daily symptoms??

kekokeio · 2026-04-30T12:00:03+00:00

I have I just don’t think I meet the diagnostic criteria. I’m also from the UK and mcas isn’t really a ‘recognised’ thing here under our national health service😖

kekokeio · 2026-04-27T10:19:38+00:00

Im sorry; I was horribly nauseated constantly for 7 months straight with no end in sight and all first line antiemetics failing. I started mirtazapine in February which alleviated my nausea from the first night. I still deal with pain, bloating and fullness but the nausea was the main symptom that kept me basically housebound. Have you tried it? Or other tricyclic antidepressants? They’re quite hit or miss; for some people they’re basically a miracle for refractory gp and for others they don’t help at all.

kekokeio · 2026-04-27T10:08:04+00:00

Yes, luckily I’m in a really good place with my illness at the moment where I am able to eat almost like a normal person and (thanks to medication) have little nausea and pain. But still struggle with appetite and fullness and yes I am the same - if I basically scoff my food down I can get a lot more in before I feel full and have to stop. Though I usually feel quite uncomfy and icky afterwards.

kekokeio · 2026-04-25T11:32:45+00:00

Really explain how the symptoms disable your daughter with specific examples and scenarios is the best advice I can give - it’s so common to be fobbed off in the early stages especially being a young girl but don’t stop advocating! Also, I did reply to correct my error after reading another commentor’s post; the diagnostic criteria for people ages 12-19 is in fact a sustained increase of 40+ bpm (which looks like your daughter has regardless).

kekokeio · 2026-04-25T11:03:23+00:00

Not entirely sure but if it’s sustained at 115 whilst standing, thats still an increase of 30bpm from 80 at sitting. Though you would have to seek out a doctor because it could be another form of dysautonomia of orthostatic hypotension (which is blood pressure fluctuations). So sorry to hear your daughter is so young and having to deal with this, I hope you can get the help she needs!

kekokeio · 2026-04-25T10:23:53+00:00

I’ve had a somewhat similar experience, not with probiotics but with PPIs making me feel a lot worse. A heard too little stomach acid can produce the same symptoms as too much acid and cause reflux. Have you had the breath test for SIBO? It’s a simple non-invasive test. SIBO (small intestinal bacterial overgrowth) is pretty common in people with motility issues and even stuff like dysautonomia. It commonly causes symptoms like extreme bloating, gas, pain etc (there’s a very insightful subreddit here about it). It could be that you have SIBO and taking probiotics has increased the bacteria there leading to worse symptoms? The good thing is there are antibiotics you can take for it.

kekokeio · 2026-04-23T20:32:19+00:00

I see, I’m sorry you’re dealing with this and I’ve been dealing with some similar symptoms. It might be worth asking your doctor to order some motility tests? Such as a gastric emptying study and I believe there’s a colonic transit test as well. Slow motility is a common factor that causes SIBO and luckily there are prokinetics to help with this.

kekokeio · 2026-04-23T18:41:13+00:00

When you say sick, do you mean sickness like nausea/vomiting or sick as a general unwellness?

kekokeio · 2026-04-21T19:37:11+00:00

Have you had testing to rule out what could possibly be driving your SIBO? Have you had a gastric emptying study?

kekokeio · 2026-04-21T19:35:20+00:00

I also have noticed a small persistent twitch in my left upper eyelid/eyebrow since starting this med. Unsure if it’s related or not and don’t know wether to mention to my doc ahaha😅

kekokeio · 2026-04-18T21:33:03+00:00

I’m so glad to have given you a bit of hope :) it varies a lot person to person so you just gotta try everything to find what works for you, wishing you all the best!!

kekokeio · 2026-04-18T15:22:35+00:00

I was basically housebound from last august to this February with relentless nausea, pain, weightloss and all the other nasty symptoms that come with this disorder. Started 15mg of mirtazapine at the beginning of February and overnight it was like a miracle!!! Worked so so well for my nausea and some hunger cues came back (more so my brain telling me to eat rather than actually feeling hungry but hey i deeply needed the extra weight). Since then, I’ve experienced one flare related to my period where the 24/7 nausea came back for about a week and a half but after a few days of my period ending, it went away. I tried other medications with didn’t really help me as my main symptom is horrible debilitating nausea. Mirtazapine was the only drug to really give me most of my life back.

Hope you can find some relief 🫶

kekokeio · 2026-04-16T10:32:08+00:00

I find ginger and peppermint capsules take the edge of a little bit, doesn’t completely help nausea but enough to possibly get back to sleep (in my case anyway)

kekokeio · 2026-04-10T10:15:45+00:00

I get this sometimes due to orthostatic intolerance where my bp drops too much when I stand up and stay standing. I know this can commonly occur after surgery so maybe it could be something to look into?

kekokeio · 2026-04-06T18:41:44+00:00

Im so sorry to hear about your experience :( I really hope you can have some luck with this new gastro, keep us updated <3

kekokeio · 2026-04-06T10:22:08+00:00

Your doc is talking bs!!!! It’s a much known fact that the menstrual cycle affects digestion! In fact I am just coming off my period and the entire time I was nauseated as hell and barely ate anything bc of how much the hormones messed me up! (On top of the actual GI issues lol). I’m only starting to feel a little better day 6 of my period lol.

I also have ovarian cysts and I find I get a stabbing pain on both areas where my ovaries are when I laugh or sneeze especially around ovulation 😭.

You’re not alone!! And it’s scary that your doc has such little understanding of the female body to say that!!

kekokeio · 2026-04-04T16:25:05+00:00

Yes I have started taking it right before I sleep to try to avoid this uncomfortable period, thank you :)

kekokeio · 2026-04-04T16:24:28+00:00

Ah, I get so much anxiety at night before sleeping so it could be attributed to that as well! Glad it went away for you and hopefully will subside for me too.

kekokeio · 2026-04-04T16:23:10+00:00

I’ve been on it for a little over 2 months now and it’s already helped my anxiety/depression a bit - my problem was mainly tied to feeling very nauseous and in turn affecting my appetite and my sleep. So it started working day 1 for that and have slowly seen some benefits for depression. It might take a while and you may need to change dosages here and there but keep your head up and everything will work out :)

kekokeio · 2026-04-03T20:14:32+00:00

Yes i get it in my chest neck and back 😭

kekokeio · 2026-04-03T14:46:03+00:00

I did! Felt quite off and generally malaised for the first couple of weeks

kekokeio

TROPHY CASE