The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Annoying stomach discomfort and brain fog

Discussion in 'General Symptoms' started by yurybx, Oct 10, 2018.

  1. yurybx

    yurybx

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    Over the years of my illness, I have tried many different drugs: digestive (pancreatin, bile), prebiotics and probiotics, prokinetics (itopride, domperidone), antacid and acid (esomeprazole, acidin-pepsin), enveloping and anti-inflammatory (flax seeds, bismuth subcitrate, gastritol), helicobacter antibiotics, choleretic and cholekinetics, hepatoprotectors (thiotriazolinum, s-adenosylmethionine), sedatives and nootropics (Hypericum, valerian, ginkgo biloba, alimemazine, phenibut, glycine, hopantenic acid, GABA, salbutamine, 5-HTP), antidepressants (mirtazapine, sertraline, fluoxetine, bupropion), vitamins and trace elements (C, B1, B2, B3, B6, B9, B12, magnesium). I also experimented with naltrexone.
    None of this helps me. I am constantly tormented by discomfort in the right hypochondrium, whatever I do. I underwent all kinds of research and my official diagnosis was chronic gastro-duodenitis and Helicobacter, which I treated without any changes. I also constantly feel tired, brain fog and depression, which are aggravated in the evening.
    Comrades, can you advise something from medicines that I have not tried yet?
     
    Moof likes this.
  2. Moof

    Moof Senior Member

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    I had a similar pain for a long time, especially at night. It disappeared after I worked out (after several years of unusual IBS symptoms) that I'm severely intolerant of potatoes. It was odd, as the pain long predated the weird IBS, but it was noticeable that it went as soon as I stopped eating all potato products.

    I realise that's not terribly helpful, but I posted it in case it's possible that yours could be diet-related too?
     
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  3. yurybx

    yurybx

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    @Moof, I was tested for food intolerance (antibodies in the blood) and it showed only what I already knew: pork, soybeans, onions, and peanuts — I did not eat these foods anyway. I try to stick to diet, but this is not enough. Even after the diet lunch, I feel a heavy stomach. In the evening I have a stomach ache and a constant desire to eat, and in order to calm him down somehow, I eat in small portions for hours. Sometimes it helps, sometimes it doesn't. And despite this, I am thin (60 kilograms).
    Tell me, please, how did you determine the intolerance of potatoes?
     
  4. Moof

    Moof Senior Member

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    @yurybx – it was a bit of a comedy, really! I noticed our supermarket had huge multi-packs of my favourite potato crisps very cheaply, so I bought one. Next day I woke up with a nasty virus, and could barely get out of bed for the following three days. I really didn't feel up to preparing food, so I snacked on lots of potato crisps instead.

    That made my IBS dramatically worse. I didn't even know it was possible to have an intolerance to potatoes, so I looked it up; it turns out that it's fairly common. I stopped eating potatoes, and within four days, all my miserable IBS symptoms (which included feverishness and worse than usual POTs) disappeared completely. I can still eat other nightshade foods such as tomatoes, even though I had a true allergy to them when I was a child.

    So voila! It's horrible having to avoid one of my favourite foods, but I live in hope that one day my gut bugs will decide that they're back on the menu... :rofl:
     
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  5. Howard

    Howard Senior Member

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    @yurybx

    I don't know how helpful this will be, but along the same lines that Moof mentioned, my severe IBS symptoms (stomach included) completely and miraculously disappeared the day after I eliminated high fructose corn syrup from my diet (2014).

    Multiple gastroenterologists, medications, probiotics (VSL#3) and diet alterations failed miserably over the course of four long years. After everything else failed, it was only on a whim that I eliminated simple sugars.

    Note: Mayo Clinic had me on a special diet at the time, for POTS et al.... Lots of electorolytes! The Gatorade/Pedialyte Diet, which unfortunately lead to my excess sugar consumption.
     
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  6. SherDa

    SherDa

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    Calcium helps my GI symptoms, brain fog and fatigue.
     
  7. Wishful

    Wishful Senior Member

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    Easily: eat some and see if you feel worse afterwards. Repeat until you are convinced. I had to give up potatoes and the rest of the nightshades. I'm fairly sure that it's the solanine, tomatine and other toxins that make my ME symptoms worse.

    From wiki: Solanum glycoalkaloids can inhibit cholinesterase, disrupt cell membranes, and cause birth defects.[6] One study suggests that the toxic mechanism of solanine is caused by the chemical's interaction with mitochondrial membranes. Experiments show that solanine exposure opens the potassium channels of mitochondria, increasing their membrane potential. This, in turn, leads to Ca2+ being transported from the mitochondria into the cytoplasm, and this increased concentration of Ca2+ in the cytoplasm triggers cell damage and apoptosis.
     
  8. Sundancer

    Sundancer Senior Member

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    I can't handle potatoes either, I've always thought I'm feeding the baddies in my gut when i eat them, but this is a interesting explanation too @Wishful

    @yurybx about the pain in the right upper abdomen, when i was still bedbound it was bad. It has sort of very slowly vanished. I'm on a very strict diet which has formed itself over the years. I do not take any medication, I do take vitamins and some other supplements.

    two weeks ago i had a very severe histamineflare, so bad that I got to taking antihistaminica ( prescription) even though i know I do not tolerate medication as a rule. After three days of using these pills the pain was back, badly, as if there was a big stone instead of a liver. So I had to stop the antihistamincum pills.

    For myself it is a sort of confirmation that it is my liver that wreaking havoc with what's left of my health.
    I want my liver enzymes tested, but don't think I will find a doctor who will order it, as they think that I have a needless fear for medication...yeah.

    the histamine, happily, is now slowly getting back to normal with keeping my even stricter diet.
     
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  9. Wishful

    Wishful Senior Member

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    Are any other people here on PR sensitive to solanine or other nightshade toxins? One of the theories about ME involves calcium transport into/out of mitochondria, so sensitivity to solanine would support that theory.
     
  10. Mary

    Mary Moderator

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    This is how I felt when my liver was overloaded with toxins. No, nothing showed up on bloodwork. Also, one glass of wine would make me sick for an entire day, 2 glasses would leave me sick for 2 to 3 days. My chiropractor who does muscle testing picked up that my liver was stressed. I had a job at age 19 where I had heavy exposure to chemical solvents and that appeared to be part of the problem some 30 years later.

    I did a liver detox under the supervision of my chiropractor (it took 30 days, was unpleasant), but afterwards my digestion was much better, and I also started taking milk thistle for liver support and also found I needed to take betaine HCL with meals. I really haven't had any liver issues since.
     
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  11. yurybx

    yurybx

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    @Moof, @Howard, @SherDa, @Wishful, @Sundancer, tell me, please, did you have a constant feeling of hunger? Did you have to eat in the evening for hours so that you could sleep at night? Did people tell you that you are thin, even though you eat quite a lot every day?
     
  12. kangaSue

    kangaSue Senior Member

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    There's a lot of things that can cause RUQ (right upper quadrant) discomfort and GI issues but one thing I know of that can fit for your symptoms when it is mild and often overlooked is MALS (Median Arcuate Ligament Syndrome), impaired blood flow through the celiac artery because it is being compressed by the diaphragm. This in turn causes Chronic Mesenteric Ischemia which can cause malabsorption issues. It can also be a cause of significant autonomic dysfunction (POTS in about 20% of cases) but that mechanism is not well understood.

    Get any doctor to listen to sounds in your epigastrium for any indication of a bruit (not everyone has this with MALS). A Doppler ultrasound test to check the mesentery artery flow velocities is a good screening measure for MALS but not too many ultrasound tech's know how to do this test properly.

    The celiac artery is compressed during exhalation so the test should be done while supine, doing deep inhalation and exhalation and measure the celiac artery velocities during both inhalation and exhalation. It's not often done but then repeating the test while upright should show normal celiac artery velocities.
    http://www.medultrason.ro/assets/Magazines/Medultrason-2012-vol14-no2/12-Ozel.pdf (an example)
     
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  13. Moof

    Moof Senior Member

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    @yurybx, I have this at times, but not constantly. My GP thinks it's due to dumping syndrome, and advised me to avoid drinking at the same time as eating (difficult because I have a dry mouth!), and keep my sugar intake down. That has helped quite a bit.

    My BMI is normal now, but from early teens through to the menopause I often struggled to keep my weight up – however, it's quite common among women in my family, so it may just be a genetic oddity.

    I've known a couple of people over the years who had constant hunger but were losing weight. One was later diagnosed with T1 diabetes, the other with an adrenal tumour. I was tested for T1 several times because of my symptoms, but I definitely don't have it.
     
  14. Judee

    Judee Senior Member

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    WOW, @kangaSue, you blow me away with that post. Where did you learn about that?

    @yurybx, that might be what is making your hungry all the time.
    Also did they do an ultrasound of your gall bladder/pancreas and bile ducts?

    If that was all clear, have you tried artichoke? I use it once in a while when I get a pain in that area and can feel it make my gall bladder release bile and then the pain goes away BUT it is not recommended if you have any stones or bile sludge as it can create blockages by moving the bile into tighter areas.

    Also have your adrenals been checked? As @Moof mentioned, I think they can cause some of the symptoms you are experiencing.
     
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  15. yurybx

    yurybx

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    @Judee, yes, I did an ultrasound of my gallbladder, pancreas and bile ducts. I did the usual ultrasound and ultrasound of the gallbladder in dynamics. Also I took blood tests for bilirubin and other liver tests. I even did MRI of liver, gallbladder and bile ducts with contrast. Everything is normal.
    I did not hear about the artichoke, but I took Silybum marianum, choleretic herbal preparations, mineral waters and pills. Nothing helps. And in general, I doubt that the matter is in the gall bladder, since I can eat lard (raw-salted) without consequences (but only in the afternoon or evening).
    As for the adrenal glands, I passed blood tests for adrenal hormones, and they are normal.
     
  16. yurybx

    yurybx

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    @kangaSue, it is interesting! I just called my gastroenterologist and he said that it was beyond his competence. Tomorrow I'll sign up for a consultation with a vascular surgeon. Let's see what he says.
    Thanks for the information!
     
    Mel9 likes this.
  17. Wishful

    Wishful Senior Member

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    No to all the questions. I don't seem to have any significant digestive or hunger issues, nor does meal timing affect my symptoms. Keep in mind that ME seems to be composed of many subgroups, so a negative response may have no meaning for a different subgroup.
     
  18. Sundancer

    Sundancer Senior Member

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    not hungry, but remember that I ate 5 or 6 times a day because bellly could not handle much food. At the time i hardly slept at all.one night 2 or 3 hours, one night none at all, then a night with a benzo of 2 plus 3

    repeat,

    gosh I'm glad that's behind me.

    Later I started to eat more and then indeed, it was strange that even though I did eat quite a lot, I did not fatten up.
     
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  19. jesse's mom

    jesse's mom Senior Member

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    High fructose corn syrup is in FACT the devil in a sweet package!:devil: I cannot tolerate this nonfood food. :ill:
     
  20. jesse's mom

    jesse's mom Senior Member

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    I just started taking the amino acid NAC today for some of these symptoms.
     

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