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Acute G.I. episodes

Discussion in 'Gastrointestinal and Urinary' started by Dainty, Jul 14, 2011.

  1. Dainty

    Dainty Senior Member

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    Thank you for the concern and well wishes, eveyrone!! :)

    Just a quick note for now. My suspicion that my refusal to eat was merely prolonging the inevitable proved true. Things got worse before they got better, but the current crisis is over and I'm returning to my normal baseline.

    GI panel showed a few things but I don't have it in front of me atm so I'll post when I can give you the details. In the meantime I'm just focusing in sleeping, getting caught up with things, and eating, eating, eating...
     
  2. madietodd

    madietodd Senior Member

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  3. Mya Symons

    Mya Symons Mya Symons

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    Dainty, did you read Santi's post regarding the International M.E. Associations site updates. There is some information on ME type seizures that sound a bit like what is going on with you. Evidently sometimes people are conscious when they have these seizures and they don't know they are having one. One of the symptoms is loss of bladder and bowel control. http://forums.phoenixrising.me/show....-Association-site-updates&highlight=seizures
     
  4. Merry

    Merry Senior Member

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    So sorry, Dainty.
     
  5. taniaaust1

    taniaaust1 Senior Member

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    Glad to hear that you are back to being able to eat at least for the time being.
     
  6. Dainty

    Dainty Senior Member

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    Thanks for the replies, everyone.

    So a day or two before the appointment the "episode" I had been holding off hit, minus the extreme pain and diarrhea. The nausea, vomitting, sweating/need to unclothe, the incapacitation, etc, were all the same, and it felt the same, with a few other factors added in...

    First, it was triggered by drinking water. I hadn't eaten in a good 5-6 hours beforehand, and then only a spoonful or two of broth. I had woken up from a nap and was feeling poorly but thought that surely water should be okay. About 10 minutes later things acted up. Now I'm certain that it's something in my stomach that's the trigger, not necessarily food, though it seems to be more irritating than water, but after a time even water will do the trick it seems.

    Second, I had another significant neuro symptom: it began as tingling in my hands, and grew worse until it was felt in my hands and forearms, legs, lips, and the area surrounding my mouth. It wasn't pins and needles - rather, it felt like electricity was coursing through those areas of my body. I was not hyperventilating at the time or anywhere close to it. The symptom grew increasingly intense over the course of about 15 minutes and I had my caregiver call an ambulance. However just before the ambulance arrived I vomited again, this time brown bile, and immediately the sensation vanished. My stomach had been completely empty long beforehand (basically hand't eaten for 5 days or so) and until this point I was only vomiting the water I drank, but this was dark brown liquid that tasted horrible (no, not feces). Anyway, I sent the ambulance away (felt horrible for doing that but better than an unnecessary ER trip) and twice again got the same neuro symptom, both times relieved immediately upon vomiting. Dry heaving would not relieve it. The sensation was quite unsettling so by the end of it I was actually inducing vomitting as soon as it returned so that I didn't have to wait until it escalated to get relief.

    Another thing is that at the end I would be doing fine lying down, but as soon as I sat up nausea would hit again and everything would escalate until I vomited. This happened three times in a row before we realized that no matter how fine I felt, it was imperative that I remain prone for a bit. I did for a few hours, took things slow, and then was okay. It seems I began recovering from that point on, though I remained constipated for several more days (making it something like a week total) and my gut still doesn't feel right.

    GI panel results: there is a parasite, Ameba histolytica. There was also a heavy overgrowth of a gut bacteria detected, pseudomonas species. My doctor said it's normal to have some, but the heavy overgrowth is not normal. I also tested positive for blood in my stool and had a very low total intestinal SIgA, though since my doctor didn't talk about either of these things I'm assuming he didn't think them significant to my current problem. As for the neuro symptoms, my doc has said that those with extreme sensitivities can start reacting to their own gut bacteria, so that it actually becomes toxic to them. He indicated that the neuro symptoms experienced are in line with being caused by gut issues.

    The plan is to go after the bacteria overgrowth first with abx, and target the parasite next. Since I took a pretty powerful parasite cleanse about a year or so ago and it did not interrupt the pattern of progression of these episodes we're thinking the bacteria issue is the more likely culprit.

    We have also received some anticholinergics from my other doctor, one for long-term and others for crisis use. If the vagus nerve is the issue, these should calm things down, possibly prevent another episode or calm things down in the midst of one.
     
  7. taniaaust1

    taniaaust1 Senior Member

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    Im soo glad to hear that you now have a great plan of action which hopefully will completely fix that issue :) .

    I'd never heard of that parasite before.. http://en.wikipedia.org/wiki/Entamoeba_histolytica

    "Pathogen Interaction
    E. histolytica may modulate the virulence of certain human viruses and is itself a host for its own viruses.

    For example, AIDS accentuates the damage and pathogenicity of E. histolytica.[7] On the other hand, cells infected with HIV are often consumed by E. histolytica. Infective HIV remains viable within the amoeba, "

    I guess that means if ME is being caused by a "virus" of some kind.. it may be also doing that interaction thing with that pathogen.
     
  8. Dainty

    Dainty Senior Member

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    Since I linked to this in another thread, it seems I ought to update it.

    The anticholinergics work, and did stop one episode in its tracks that was well underway. Unfortunately I had a severe reaction to the most effective medication (hands and feet swelled up, then had a very realistic hallucination) and the doctor who prescribed them is in the middle of a cross-country move and out of touch so I can't get alternative options at the moment.

    Last week an episode hit without warning. And, to keep things short, I was too incapacitated to reach sufficient meds and ended up having to call an ambulance again.

    I was quite out of control screaming and yelling from the pain, and not only did they refuse to administer pain medication, they also would not permit me to take any of my own prescribed by my doctor. In fact, I wasn't even asked the basic questions to rate my pain, where my pain was located, and to describe what it felt like. It was only halfway to the hospital (after about 20 mins of this - at first they didn't send an ambulance [despite the fact that I informed dispatch that I needed one] so it took extra time to call for one) that I was asked the question "are you in pain?" (to which I immediately screamed an incredulous "YEEESSS!") and that was all I was ever asked about pain until I was handed off to the ER staff.

    We've got to find a solution to this pain stuff. And the anticholinergics, and ways to make sure the medication is always within arm's reach of me at all times. I do intend to get in touch with the local EMS about this experience. I was told they would not administer pain meds due to "protocol", and yet I'm quite certain that not even asking basic questions about the pain is a breach of protocol. The guy in charge of me mentioned he had been to my house before and I have to wonder if I received biased care. In any case, I need to establish with them what exactly they can and can't do for me. And if I was treated improperly I want to make sure I am never under his care again.

    And I'll be getting in touch with another doctor about more pain meds solutions for at home. The problem is the one I have is sublingual, which doesn't work well with screaming and vomit. ;) Most pain meds are intolerable for me - I.V. or (we're assuming) intramuscular morphine is one that I can do, so there may be more possibilities as well.

    As to the cause, there are some recent ideas. We'll see.
     
  9. madietodd

    madietodd Senior Member

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    Well, my heart popped open for you, and I'm speechless about what you're going through, so all I can do is send love.
     
  10. Glynis Steele

    Glynis Steele Senior Member

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    So sorry to hear you are going through such a rough time, Daints. Here are some gentle hugs to help. :hug: :hug:

    Glynis x
     
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Hope you are feeling better, this sounds like a horrible situation! I know my life is not great, but then I think of others who suffer more than me, gives me some comfort that things could always be worse for me. Hope you get some resolution soon!

    At first I thought of Diverticulitis, but I don't think that is your issue, have not read the whole thread,, sorry.

    GG
     
  12. Dainty

    Dainty Senior Member

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    Always happy to be of service, GG. :D

    No need to apologize for not reading the whole thread; I doubt even I could be bothered.
     
  13. leela

    leela Slow But Hopeful

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    Aaargh. Dainty, I'm so sorry you had to go through this again.

    Can you put together a more useful, helpful, forthcoming emergency "team"?
    i.e. a selection of nearish friends you could call who can come help you through/access your medication for you and administer it without the BS?

    It sounds like the ER/ERT is causing more harm than good. I like the idea of customising your "response team" if ever it happens again
    (and we hope it does not!)

    Also, it occurred to me you could get a little pillbox and fix it to your wrist like a bracelet, or wrap it round your ankle/down a sock or what have you.
    This way, you will never be out of reach of your meds :)
     
  14. LBS

    LBS Senior Member

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    Just catching up and reading about all of this now. It sounds awful :( I'm so sad for you, that you have to go through this, and I hope you can find something that brings relief soon.
     
  15. anniekim

    anniekim Senior Member

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    Am so sorry to hear all that you are going through with this, sounds horrific

    Did the abx for the overgrowth of bad bacteria help at all? I'm thinking that as you've had another attack, sadly no....?
     
  16. liquid sky

    liquid sky Senior Member

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    This may not be of help, but I will just mention it. It could be a condition called dumping syndrome (I know, not a nice name). It involves a problem where the contents of the stomach empty into the small intestine too quickly causing the type of symptoms you describe.

    It is noted in those that have their stomach stapled for weight loss, but don't discount it because it can and does happen in other situations. I had it for about six months after having my gallbladder removed. I could tell it was coming, but could not prevent it and was helpless once it started. Fortunately, mine resolved after my body adjusted.

    Another thought, I have seen people present with diabetes in a similar way. They would have really high blood sugar levels like 400-500, but didn't have a clue. This is how their bodies reacted to the continuous, extreme hyperglycemia. Just a couple of thoughts. Hope you figure it out and improve soon.
     
  17. Dainty

    Dainty Senior Member

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    Thank you for the kind thoughts and suggestions, everyone.

    I've had two episodes since I last posted; one of them was yesterday, another was the 17th of last month. Looks like they can be expected to hit about every 6 or 7 weeks, now.

    There is some good news, though. The past two times I was able to manage them at home with adequate and semi-adequate pain management, respectively. For the December one I took pain meds right as it got underway, so it went into full swing (screaming, flailing, etc) for a while before the meds kicked in, and while I still writhed uncontrollably the entire time the pain was not unbearable once the medication took the edge off. Still, I didn't get quite as much as was needed due to difficulty administering it when in such high distress. I weathered the worse of it alone due to a technical communication error with my caregiver, but that turned out swell because I felt quite proud of myself but during and afterwards. :D

    This time around I took pain meds the very moment I suspected something might be up. There was about 5 seconds between "not sure but something might be happening" and the first dose, then about 15 seconds later I was pretty sure it was happening so I took the next, and within 30 seconds I was collapsed and managed to complete the last of the dosage and call my caregiver for assistance. So there was never even an initial shock of extreme pain, because I took it early so it kicked in quickly enough. Requiring every ounce of my concentration, I managed to keep my body relaxed and still throughout the episode, taking additional doses of pain medication as needed. There were only a couple times the pain began to spin out of control, and that just had to do with the mechanics of access issues and waiting for it to kick in.

    Both my caregiver and I feel like this is a victory, and I actually felt empowered afterwards rather than traumatized. Previous episodes would last for an hour of severity, and even after the pain felt gone and the episode was over I'd continue to writhe uncontrollably for a while yet. This time it only lasted half an hour and I was not vocalizing or throwing myself around at all, either during or afterwards. Which means I maintained as much dignity as is possible when one is naked and covered head to toe in their own filth. :rolleyes: But seriously, recovery has been so much easier since much less energy was expended, and I feel that this is finally something I know how to deal with.

    After dozens of calls it looks like we'll soon have my pain meds properly formulated to ensure I can always take them in time as well as self-administer during an episode. If so, then the next time one of these happens I might even choose to go it alone; now that I'm not completely driven out of my mind from the pain it's just a matter of concentrating on letting my body get through this intense experience as calmly as possible.
     
  18. taniaaust1

    taniaaust1 Senior Member

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    Hi dainty. Im wondering what form of pain meds you are taking (sorry if you've already mentioned and Ive forgot, Im not up to reading the whole thread again).

    You probably already considered following but if taking tablets, I'd think it would be good idea (only if it was safe of cause) to take them in a powered form for faster absorption into the body. (I suppose you are already doing that thou or on injectable pain killers for this).

    Its great to hear that you've found you can do something which helps some.
     
  19. Dainty

    Dainty Senior Member

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    Thanks for the suggestion, Tania. My current pain meds are in sublingual form, so they enter the system even faster than orally taking powder. The problem is it requires contact with mucus membranes, so if I swallow it instead then it doesn't properly absorb. And it's very difficult to hold liquid under your tongue while simultaneously screaming at the top of your lungs and puking your guts out. :p

    I'm working to get it in a nasal spray so I don't need to deal with that.

    The latest attempt fell through...turns out there's a new law in my state regarding the distribution of pain meds. I'm going to have to see an entirely new specialist; the appointment is in a couple weeks.
     
  20. ottiebow

    ottiebow

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    Just a thought could it be stomach epilepsy, or a stomach migraine? these are quite rare and difficult to diagnose but do exist.
     

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