Neurological and sleep issues after gall bladder removal

Posted by gariston @gariston, Feb 18 10:14am

Surgery went well, but about four weeks later, I started experiencing severely decreased cognitive functioning, muscle twitches all over my body, tremors, tension in my muscles, and insomnia. I also had significant changes in my digestion, with floating and oily stools, gas and bloating. I found out I was deficient in B12, B1, and D. Cognitive symptoms, twitches, and tremors improved but not entirely gone after those were addressed, but tension and insomnia are still there. I've been getting 4-6 hours for a year post surgery now. The tension is mostly in my hips and glutes, and I can't relax those when I lay down to sleep.
Has anyone experienced anything similar and found what was wrong? The latest blood tests indicate that my protein digestion is off, which would affect the tryptophan metabolism and serotonin pathway. Lots of symptoms I've had overlap with serotonin deficiency, and that would affect sleep.

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@germangal

I regret every day I had gallbladder removal. I had constant pain in my upper stomach area. Doctor said my gallbladder had sludge and needed to be removed. Fell for that. It never got better and digestion is a million times worse. Still have pain only more. If I would have gotten another opinion, I probably be fine. What the issue is, is I have a hiatal hernia. Now with the gallbladder gone, acid is backing up so much worse. New Gastro Doctor said the problem will get better, but will resurface and need more meds. Lifestyle as far as eating has to change. Sleeping on a bunch of pillows for elevation created neck issues. I bend over to do anything the acid is up in my throat. I bought a $5,000 bed to sleep elevated. So, GET SECOND opinions. FYI, Medicare allows it. A few hours of investigating other opinions may save you a lifetime of misery. Now I have a lifetime of extra issues now. My later years of my life are tossing and turning, getting up all night drinking water and expensive pills.

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I have a hiatal hernia as well. I got it after my gallbladder was removed from vomiting so much. I was throwing up a lot of bile after. Anyway, for over a year I struggle...taking a PPI, sleeping with my head elevated and all that. I even bought the $5000 bed to sleep elevated too. It is uncomfortable as heck. The GI doctor kept telling me to treat the acid. Meanwhile, I NEVER had acid issue prior to removal.

Finally, after struggling for a long time, a doctor suggested I try cholestyramine. It is bile binder. I stopped the PPI entirely and started taking cholestyramine. I take a half a packet right before laying down for bed and a half packet in the morning. That clears the bile out of my stomach. THAT has given me my life back a little. It was bile refluxing up...not acid. And a PPI actually relaxes the sphincter between the stomach and the intestines, which increases the bile moving into the stomach making the problem even worse.

If I were you...I'd give that a go. I can now sleep flat again. That awful reflux is mostly gone. And things are a lot better. I really hope this helps you.

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@gariston

"Have you had any success with figuring out how to handle this? Any updates on your health? Have you found any doctors that actually care to take an interest?"

Along with the other issues, my athletic ability also rapidly declined. I was in the best shape of my life heading into this. Three days after my surgery, I walked five miles. Six months later, I was unable to stand without staggering. I couldn't run because my knees felt weak and would buckle while walking. I also lost sensation in my muscles and did not get that calm, satisfied feeling after exercise. I too wondered if this was how old age felt. This has improved with training, but two years postop, I am still not as strong or coordinated as before.

I suspect that the surgical procedure, or changes to digestion and nutritional deficiencies , or all of the above, had some sort of effect on the central nervous system. There is still so much that's unknown about how the brain works, or even the mechanism of how the anesthesia and a few other drugs I received prior to and during surgery work. So figuring out if this was the cause may be fruitless.

My cognitive issues have improved the most, but I continue to lose my train of thought. Finding words on the fly, as well as motivation and focus, are still challenges. I attribute those to persistent insomnia, and I'm hoping that if that improves, the remaining cognitive issues will as well.

After being gaslighted on several occasions, I believe I have found a physician who is as perplexed as I am and is working with me. I've had numerous blood and hormone tests, and almost everything appears to be fine. My brain MRI revealed nothing that could explain these issues. The Indican test was abnormal, which prompted me to suspect that tryptophan metabolism is broken. That might explain insomnia as a functioning tryptophan > serotonin pathway is a precursor for proper sleep.

I should mention that in the time period prior to and after the surgery, I was experiencing chronic stress due to some personal issues with my family. Stress makes everything worse, but I was able to manage it prior to and immediately after the surgery. Only after the cognitive symptoms began in earnest was I unable to handle any stress at all. Also, I can't tolerate caffeine afterward because even half a cup makes me extremely jittery, sweat profusely, and unable to sleep at all. I owned a coffee shop before and had a pretty high caffeine tolerance.

Also, the contrast MRI I did prior to surgery discovered some lesions on my pelvic bone that they wanted to further investigate, so I underwent a full body PET scan and another contrast MRI about a month post op. The lesions were benign. My cognitive symptoms started after these two tests, but I don't necessarily believe they are the cause, although I can't rule them out either.

Were you experiencing chronic stress at the time, and what specific scans did they perform on you?

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This article is an interesting read:

https://www.sciencedirect.com/science/article/pii/S2161831322002952

"The gut microbial influence on tryptophan metabolism emerges as an important driving force in modulating tryptophan metabolism. "

"Tryptophan is an essential amino acid being utilized for protein synthesis and, thereby, affecting the growth and health of both animals and humans. In addition to serving as a nutrient, accumulating evidence has revealed that changes in the gut microbiota composition affect the GBA by modulating the tryptophan metabolism (10., 11., 12.). "

"On the one hand, tryptophan serves as a sole precursor for the biosynthesis of the neuroendocrine transmitter serotonin and, subsequently, a pineal hormone called melatonin (21)"

"The tryptophan availability can be altered in a vitamin B6–dependent manner, as evidenced by an impairment of the tryptophan metabolism after a vitamin B6 deficiency (24)."

One thing it says is that tryptophan is cleared from the body via the liver by it producing an enzyme called IDO. People with inflammatory bowel disease often OVER produce IDO causing more tryptophan to be cleared from the body than it should be.

Another interesting this is the B6 issue. Funny enough, I was diagnosed with high B6 after a blood test, yet I am low in all other B vitamins. So I think that's some hint that this is the right tract.

In short, I think that our gut microbiome was affected and it did mess with the tryptophan pathway, which also affects melatonin and serotonin, which is causing most of the symptoms. But that's just a theory and I can't prove it. I thought I'd share the article though.

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@terri9

This article is an interesting read:

https://www.sciencedirect.com/science/article/pii/S2161831322002952

"The gut microbial influence on tryptophan metabolism emerges as an important driving force in modulating tryptophan metabolism. "

"Tryptophan is an essential amino acid being utilized for protein synthesis and, thereby, affecting the growth and health of both animals and humans. In addition to serving as a nutrient, accumulating evidence has revealed that changes in the gut microbiota composition affect the GBA by modulating the tryptophan metabolism (10., 11., 12.). "

"On the one hand, tryptophan serves as a sole precursor for the biosynthesis of the neuroendocrine transmitter serotonin and, subsequently, a pineal hormone called melatonin (21)"

"The tryptophan availability can be altered in a vitamin B6–dependent manner, as evidenced by an impairment of the tryptophan metabolism after a vitamin B6 deficiency (24)."

One thing it says is that tryptophan is cleared from the body via the liver by it producing an enzyme called IDO. People with inflammatory bowel disease often OVER produce IDO causing more tryptophan to be cleared from the body than it should be.

Another interesting this is the B6 issue. Funny enough, I was diagnosed with high B6 after a blood test, yet I am low in all other B vitamins. So I think that's some hint that this is the right tract.

In short, I think that our gut microbiome was affected and it did mess with the tryptophan pathway, which also affects melatonin and serotonin, which is causing most of the symptoms. But that's just a theory and I can't prove it. I thought I'd share the article though.

Jump to this post

"Another interesting this is the B6 issue. Funny enough, I was diagnosed with high B6 after a blood test, yet I am low in all other B vitamins. So I think that's some hint that this is the right tract."

B vitamins are used in combination in metabolic processes so a deficiency in some can result in buildup of others. Sadly, I didn't get a complete blood test while I was having the worst symptoms, but several months later. A regular blood count test didn't show anemia or anything else. Months later, when I got a test that included vitamin B12, B1 but not B6, I had a buildup of folate and homocysteine. Both of these require B12 to be metabolized to other essential amino acids, so their buildup would indicate a long term B12 deficiency that interrupted this process. It's possible B6 was high, but I'll never know that. The neurological symptoms I've had match B12 deficiency as well as B6 toxicity, but also serotonin and dopamine imbalances.

When I mention neurological issues to my gastro, he says he doesn't know anything about them and that for those, I should work with a specialist who does. When I asked him which specialist would that be, he didn't have any suggestions. When I tell the neurologist about the nutrition deficiencies, she tells me that I should discuss that with gastro. It's been discouraging, and I've had to rely on my own research and experimentation for the most part. Gastro neurologists exist, but I haven't been able to find one yet.

I have learned so much about vitamins and digestion in the past two years, sometimes I feel I know a lot more than the specialists I'm talking to. Gastro wants procedures, like colonoscopy, and not complex digestion cases. Neuro has imaging and EMG and if nothing shows there, well, nothing's wrong, and these symptoms must be psychological. I understand to some extent as what we know about our bodies is just the tip of the iceberg at this point in time.

The problem in my case is that I had so much going on during that period of time, so I can't say it's POCD due to anesthesia, or it's metabolism, or some of each. At least I know it's not Parkinsons, MS, or ALS :-). I've gotten a lot better, and if I hadn't gone into this as strong as I was, I think my life would have been over.

I noticed an unusual symptom immediately after the surgery that seems uncommon, and I can't find any reference to it. Normally, when we empty our bowels, we have a feeling of satisfaction, most likely some surge in serotonin or dopamine. It feels good. Well that went completely away. I brought it up with Gastro, and he said it could be due to the bowels not emptying entirely. I am going to hunt this down and see if I can do the pill camera test that measures the function of the entire digestive system, starting with stomach acid, time to empty, bowels motility, etc.

That's where I am today. I am still not losing hope that we can figure it out and that I will get my life back.

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