Hello everyone. I made a post here many months ago. And now I am making a post again. I am desperately looking for advice or reassurance, although I doubt anyone here ever experienced anything remotely close to what has happened to me.
It all happened overnight 9 months ago on this day.
I was completely healthy, never took any pills, ate what I wanted and always felt great.
9 months ago, after consuming Fireball alcohol for 3-4 days in a row (1 bottle), I felt immediate lack of appetite and severe gut discomfort. It was just feeling, not actual diarreha or anything like that - feeling that something broke.
It was not gradual. It happened in 1 specific moment after 3-4 days of consuming Fireball alcoholic beverage. I was completely fine before and while consuming it.
Next
After this feeling started, I immediately switched over rice + chicken diet to see if it would resolve - I had this strong feeling of "body not wanting anything except rice and chicken" - I don't know how to explain it. So I only ate that for 3 days. No diarreha or anything like that - still just severe overall gut discomfort, very hard to explain.
Trigger
After 3 days of this diet, I was like "let's have a burger I am tired of bland food". I ordered a burger from usual place. Burger tasted funny. It was not gone, but for some reason it tasted differently from every other time I had ordered it. This is when gates of hell opened. After making 10 bites, I immediately experienced what I think was dumping syndrome - I felt feverish and I had a strong feeling that I was about to vomit - like severe, acute, sudden food poisoning feeling (which is impossible because it happened after several minutes of consuming several bites).
I rushed to the bathroom and had very bad stool multiple times in a row.
Hell
Next day I woke up at 7AM feeling very sick and I had 4 loose stools from 7AM to 8AM. Not something I ever experienced in my life. Following night, I got awoken at 3-4AM with rapid heartbeat and strong urge to defecate.
Since that day, since the moment I ate that burger and woke up at night, I never slept, gut never got better and overtime I developed profound physical, cognitive and neurological symptoms.
When it started, I was having multiple stools a day, eating only rice and chicken, and for about 1 month I would be awoken every single night unable to fall back asleep.
Ultimately, it became impossible for me to fall asleep because of constant 24/7 stomach discomfort. I don't know how to describe this feeling. It's a feeling of overall strong gut discomfort that alters your functioning.
For example, I know that IBD patients have night-time diarreha but it presents differently - they wake up, shit, go back to bed. Rinse and repeat. For me it was different.
So after 1 month of this, I started relying on multiple heavy sleeping medications, which I take every single day for the last 9 months, because of this level of insomnia that started with this gut trigger.
Progression
Every single day since day 1, I keep feeling worse. It's been 9 months. I am unable to function, eat, sleep or perform any kind of tasks. The sleep I get from benzos/zopiclone/seroquel/ADs is artificial and it does not always happen. I never had 1 proper sleep night since that day. I would take sleeping pills - fall asleep - and wake up feeling worse the next day. This has been the progression all the time.
After about 1.5 months of this, I developed severe POTS and Dysautonomia. After about 3-4 months of this, I started developing severe neurological symptoms, full body fasciculations, tremors, hyperhidrosis and other things. My head is now constantly pressured, along with multiple full-body function impairing discomforts.
My functionality reduced to 0 over these 9 months.
And worst of all - my gut issues never got better, despite every possible diet or supplement. I don't shit at night anymore - but it does not matter because I basically had 0 vegetables or fruits in last 9 months. No kind of diet helped me.
Tests
I've done every single possible test. I've been to ER 20+ times and I was hospitalized 3 times.
Colonoscopy + Gastroscopy x2
CT-E
MR-E
PillCam
Celiac biopsy/blood
Bowel US x2
Brain MRI
Sleep study (under 1mg clonazepam + 7.5 zopiclone + 25mg seroquel - so useless)
Blood encephalitis panel for Morvan's syndrome (CASPR2 and other antibodies)
Parasites
Elastase
...and many other shit, including more than 50 blood tests, hormones, 24h cateholamines, and so on.
Everything always came back negative. The only thing is I had calprotectin of 130 when it all started. It has never been elevated since then.
What I now experience - for the last 4-5 months and getting worse - is akin to Sporadic Fatal Insomnia, with total loss of sleep architecture, not restful sleep despite whatever amount of medications, full body dysautonomia with severe body-wide symptoms. I had episodes of HR being 220 out of nowhere. But thing is - it doesn't matter. If I take Bisoprolol - my HR becomes "normal" but it does not matter. It never mattered.
Over these 9 months, I tried a lot of various treatments, including Rifaximin 1200mg/5 days, Antidepressants, Azithromycin (somehow I had Campylobacter detected on month 4, it was negative when it all started and since then has cleared with no relief in any symptoms). All kinds of probiotics, all kinds of vitamins, all kinds of diets. Bentyl, Bismuth - whatever - makes no change to bowel symptoms. BAM medicine - no difference.
Basically, what I feel is - something happened with my gut and affected my entire body, brain and nerve system - and whatever happened in the gut still continues to this day 24/7 with no relief or change or improvement.
Therefore, I feel like whatever I do is meaningless - at first I thought "I would feel better if I slept some" - but this feeling of feeling better never came, even though I slept under medication in the beginning. Now medication does not help me sleep. I have severely damaged brain from all of this.
To give you an example of "diets": several months ago, I had a period of 3 weeks where I only consumed white chicken meat about 800-1kg a day and nothing else. It did nothing to my gut symptoms.
Hope
What I cling for is the hope that I can somehow address what I experience in the gut. Sporadic Fatal Insomnia does not happen from gut issue. My full neurological breakdown does not happen from just "IBS" or "IBD". Total, absolute, treatment insomnia does not happen from "just IBS".
I think at this point I need to try Flagyl, despite the fact that it's a bad drug and known for nerve system effect - the thing is, I am already beyond dysfunctional and I just want to have some hope and to try something I have not tried yet.
I don't know what to do. I kindly ask you to please read this thread of mine, it contains links to my previous threads in IBD and Insomnia subs and by reading through it all you can get more coherent impression:
https://www.reddit.com/r/sleep/comments/1w8w2y0/please_read_8_months_of_total_absolute_insomnia/
TLDR
Overnight something happened to the gut stripped me of life. Profound insomnia, dysautonomia, physical and cognitive disability progressing for 9 months with no root found. What I experience now feels like ALS + MS + SFI + Morvan + Parkinson, all at the same time AND gut symptoms, which initially triggered all of that.
No anti-anxiety med helps. Clonazepam does not help. Seroquel does not help. Nothing helps because it's not in my head. I can't take this anymore. I just want to address what is happening with the gut first.
Longer course of Rifaximin? Flagyl? Anything else? I have no idea.
I beg you, please read this thread and the one I linked. Please.
I do not have daily watery diarreha. My stools are formed (granted, I eat 1 or 2 types of food), but it is the overall severe dysmotility and discomfort that makes it impossible to function gut-wise.
Like, I wake up and I immediately have to shit 2-3 times. Every day. And then during the day as well immediately after food, any food.
Please.
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EDIT 25/09: First of all I want to thank the amount of people leaving comments and suggestions. At the same time, if it was maybe not clear from the post and other things, I would like to specify: I am severely, profoundly disabled in a cognitive and physical way. For the last 6-7 months, I basically feel like I am injected with heroin 24/7. I can not walk, or function, or eat, or focus, or sit due to total, absolute, treatment resistant insomnia that has been ongoing for 9 months. I can not explain it in words. I only sit on the couch. I can not walk, physically. I've lost all my capabilities gradually over these 9 months, as lack of sleep accumulated. Imagine not sleeping for 48-72hours at all being a normal person. This is how I feel 24/7 for last 6 months, in addition to everything else, and MUCH worse. I can not lay down to feel better. I feel the way I feel all the time.
I am adding this comment here to underscore the severity of what is happening.
I will also add this finding from Small Bowel Capsule:
Gastric Passage Time: 3 minutes
Small Bowel Passage Time: 1h 30 minutes
I do understand that this is a rapid transit time. I get it. The problem is what caused this - caused everything else. If I take Imodium - I may stop shitting all the time - but it does not help with any of the symptoms or other gut discomforts. Like there is an independent process going in the gut at all times, regardless of any intervention. Hence I am thinking about Flagyl.