What's happening with my body in middle of night?

I missed reading this part of your post.

It is interesting, because over the last year I have been taking a tiny amount of baking soda in milk when I feel like I am bordering on getting those awful episodes and I personally think it helps too but I will keep making a note of it. I don't know how different Pepcid/Tagamet is to baking soda.

 

I don’t know what causes this @ScottTriGuy but I hope it gets sorted out really fast. It sounds horrible, I’m sorry you are going through this.

 

H.Pylori test sounds like a good step. Another test to consider would be a would be a breath test for SIBO which can be done in the doctors office, or with a home kit.

A delayed food reaction could also be another common cause, typical with MCAS especially if you are prone to IBS (I don't know if you are). Sweating at the same time, or hot flashes, can also indicate an allergic/MCAS reaction. Having a positive response to pepcid/tagamet both H2 antihistamines would indicate MCAS is a possibility and doctors often recommending adding an H1 antihistamine as well. Doctors often recommend trying both together for MCAS, so if your doctor concurs you could try before bed to see if that helps as a preventative measure. Surprisingly I found H1 helped my night-time/morning nausea somewhat. Anyone who experiences these types of severe reactions knows that it is almost impossible to get a lab for an MCAS blood draw within two hours of such an event happening. [FYI Cromolyn Sodium is also prescribed for IBS that is MCAS driven, but that is much more expensive].

However if it was MCAS, I would expect you to have those types of reactions at other times too, not just in the night after you get up. Puzzling.......

@ScottTriGuy When I became severe I started having to get up at night to pee. One contributing factor I found is electrolyte imbalance - I run low on salt levels. So if I find myself having to get up at night I increase my salt intake with meals and that often takes care of it. No idea how that relates to others but my blood work does routinely show low salt levels even with supplementation.

 

@ScottTriGuy "Motility issues" was the first thing that came to my mind, too, reading your symptoms.

So besides having a test for SIBO and H.Pylori a gastric emptying study might be another test to pursue. Depending on the test (breathing test, scintigraphy) it can be very exhausting and take up to 4hrs though. Meds that are being prescribed for delayed gastric emptying are Domperidon and MCP.

I haven't experienced your symptoms but struggled with severe nausea at night and was once diagnosed with gastroparesis.

For me, Mirtazapin (Remergil, an antidepressant) helped a lot. It has antiemetic and antihistaminic properties but itsn't anticholinergic (doesn't further slow down the GI tract which some other antihistamines can do).

These are just my experiences/thoughts on the topic, not recommendations.

I would also check all meds and supplements you are already taking if they could contribute to those symptoms in any way.

I hope you'll find something that helps your symptoms, they sound very exhausting.

 

Yes, I forgot to mention that: it is more likely to occur if, when I return from going pee, I lay on either side -- the gurgling will start immediately and I'll turn onto my back and sometimes that can help and it won't advance, and sometimes not...

 

Thanks @wigglethemouse and @Leila - I copied the pertinent bits into my notes for when I see my doctor - I have a H1 blocker too that has helped with nausea and sleep, but didn't think about taking them together.

I can only imagine how low my quality of life would be if not for the collective wisdom and experience of the ME community sharing with each other -- with the exception of a few things my 'ME' (integrative) doctor has suggested, my regular GP and all the specialists I've been sent to have not been helpful much, sometimes not at all, and sometimes harmful.

So big thanks to everyone in our community who shares their experiences: they are invaluable.

 

I can't offer anything except my sympathy, @ScottTriGuy, but you certainly have that! It sounds so uncomfortable and distressing. I hope you find answers soon.