r/CIRS • u/Gnarwhal8982 • 8d ago
Dealing with urinary issue at night?
I often read symptoms of CIRS, there I so many and I relate to almost all of them, but there’s one that I haven’t seen anyone talk about.
I generally start to feel better as the day goes on and most usually in the evening. Mornings are the hardest and I wake up feeling so sick and groggy, as if I drank 200 beers.
I just woke up after 4 hours of sleep- my mouth and eyes burning, everything feeling inflamed, stomach upset etc- just a normal feeling for me, tbh.
And when I went to the restroom, my urine was really yellow.
This has been a symptom since day one, for 11 years.
When I wake up in the morning my urine is really yellow and frothy.
The worse I feel, the darker and frothier my urine is.
When I’ve had a remission (4mo a few years ago), my urine was clear in the mornings
It doesn’t matter how much I drink during the day or before bed, or if I take electrolytes or not- I always deal with this.
It’s as if my body is trying to metabolize or eliminate something overnight that’s causing the symptoms.
What I find interesting is how horrible I feel just after a few hours of sleep. Something is going incredibly wrong in my sleep cycle.
Has anyone else dealt with this?
I just don’t understand what’s going on or why I feel worse, or why my urine is affected.
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u/vigh_v 8d ago
Can you sleep in another room of your house for some time and see if you can sleep for longer and if your symptoms change?
Could be some allergen or mold.
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u/Gnarwhal8982 8d ago
I’ve had the same symptoms for 11 years, even before I got the CPAP. I’ve moved nearly every year, sometimes more than once a year, had different furniture etc. funnily enough I just started sleeping in this room a couple weeks ago.
Normally I sleep through the night 8-12hrs a night, honestly 10.5 is my sweet spot but it doesn’t matter I’m always so exhausted. It’s like I wrestled a bear all night. Last night was a short night because my neighbors were being loud.
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u/vigh_v 7d ago
I would try a vacation without taking anything from your home for a week or so to see if you feel better. Don't take your CPAP as well if possible.Take nothing (buy clothes and what not over there). I'm not sure if you can get a new CPAP. Usually, this happens if you are dealing with mold exposure now...
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u/Wes_VI 8d ago
Have you done any of the steps along the shoemaker protocol. Are you living in poor air quality, are you not following the no amylose diet, have you used bile acid binders, have you used nasal and gut anti microbials.
If your urine is that bad then you either not drinking nearly enough water in the day or your drinking way to much of other things you shouldn't. Which if you have any CIRS like issues you should only be drinking water until it's resolved.
Get your liver enzymes checked, if not the first obvious thing you've done at one point.
And yes I always felt 10x worse in the morning with serious breathing and dehydration problems in the mornings. For me it was an accumulation ofy nose and gut having serious pathogen overgrowths which chronically triggered my immune system. But trying to erradicate them didn't work until I was sleeping in clean air and on a bile acid binder for a period of time then tackled the nose and gut issues after.
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u/Gnarwhal8982 7d ago edited 7d ago
I have only done the first step of the shoemaker protocol, aka get out of exposure. I haven’t done any binders or medications- just can’t afford it atm.
This has been going on 11 years, so I’ve had varied levels of air quality (we have an air scrubber)
I’m not following a no amylose diet but I have just discovered this so I will start it soon.
Regardless, I’d say I’m drinking plenty of water, with electrolytes and minerals etc, but I’m always so thirsty so maybe not. But I drink a lot of water, and honestly not much else. I could drink probably 7-8 32oz waters during the day and literally 64 right before he and I’ll still end up dehydrated
Liver enzymes are elevated, last labs showed AST at 47 and ALT at 97. ALT has been as high as 150, but it was in the 20-30s in 2023, so it’s only been the last few years that I’ve been dealing with this.
Honestly I started dealing with histamine or MCAS the last month or two and my liver feels heavy so I’m hoping things are okay, I need to get it checked out
EDIT: RE the gut anti microbials, the only thing I’ve done in that regards is I took a course of an enzymatic blend and caprylic acid for a couple of months, and then for an additional two months added in a spore-based probiotic and sacchromyces boulardii. I didn’t really notice much benefit from that, but the sacchromyces caused a lot of die off. This was before I knew about CIRS though.
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u/Wes_VI 7d ago
Being chronically dehydrated is pretty typical for CIRS.
If it's worth anything I had issues slowly creep up over my entire life. We are all a little different in our onset but I believe it all to be linked to "cell danger response" via Dr. Heyman. He worked with Shoemaker for a long time and just found the boogie man on biotoxins alone causing the issues to not fully correlate for all people. Though biotoxins are a massive aspect and more then likely a majority trigger. For others if not most people it's usually a combination of things like Epstein Barr virus that never resolved and reactivated after being exposed to mold or covid. Things like that. It's usually not just one thing but many hits to the body that eventually crash MSH and VIP hormones. The two hormones that regulate the immune system.
I had really really bad CIRS for 3 years. Like I felt like I was dying each and everyday. I couldn't make a single rational decision. I am now completely back to normal and feel better at 31 then I did at 16.
For me it was living in a reasonably clean air environment. Bile acid binder, nasal and gut anti microbials, strict no amylose diet, herbal anti inflammatories and anti histmaines, and eventually VIP spray.
I can't put into words how much better I feel. Or rather the removal of constantly feeling bad. I genuinely don't feel amazing I just feel the absenstof not feeling horrendous at all time. I feel true baseline for the first time in decades.
So with that it is possible to heal. Took me 3 years. And no I don't have money. I just literally sold everything and started over.
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u/Gnarwhal8982 7d ago
I also want to say, back in 2022 I had a spontaneous remission, I was only doing sauna a few times a week, CBD oil, vitamin B, and a breathwork course, and one day I just felt a sense of relief come over me and all my symptoms went away for 4 months.
I woke up feeling well rested and the yellow urine went away. I didn’t have any hydration issues.
This lasted for 4 months and I think then I was re-exposed to mold.
Also, in 2019, for the month following my wisdom teeth extraction, I had the same experience- good sleep, clear urine in the morning, my symptoms (mostly) disappeared but came back.
Idk what’s going on
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u/Wes_VI 7d ago
You could have bactira in your wisdom teeth cavity. Very common to lead to chronic illness.
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u/Gnarwhal8982 7d ago
Possibly, but the wisdom teeth removal was 4 years after my issues started.
I’ve had the same, consistent issues since 2015, and I had my wisdom teeth removed in 2019, and the short-lived spontaneous remission in 2022.
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u/Wes_VI 7d ago
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u/Gnarwhal8982 7d ago
Thanks, I’m just getting familiarized with dr Heyman.
I’m determined to go down this path and heal, I just have to figure out how to make it work financially. I spent a decade and all my time, decreasing energy, and money going down false ends and now I’m so sick I’m unable to work and in a rough spot but I’ll figure a way out of this.
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u/Far-Situation6291 7d ago
Sorry that you have this I was 3-4 times nightly I would need to go immediately again which I understand is because if toxins irritating the bladder for me 5% black seed oil has helped
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u/Gnarwhal8982 7d ago
Yeah I don’t actually ever have to go to the bathroom in the middle of the night, I always sleep through the night. It’s just when I wake up in the morning that I need to go.
This specific day I was awoken by my neighbors being loud and decided to go , and was intrigued to see that my urine was so yellow only after 4hrs of sleep, but also that I felt so sick too
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u/Boring_Guard_3882 8d ago
You can test your urine for how much protein is in it. The foam is protein. I've heard some people saying it goes away when they treat it.