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Had to call an ambulance because potassium got so low...

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by snowathlete, Feb 23, 2012.

  1. snowathlete

    snowathlete

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    It was my daughters first birthday today so went to Bristol aquarium about an hour from our house. I forgot to take my tablets this morning before I left, including my 99mg of potassium. I figured it would be okay until evening when I usually take my second dose.
    I WAS VERY WRONG!
    On the way home about four o clock I was driving and started to get tingling in my stomach. Then my chest. I pulled into a layby. Then my arms and hands tingled, then my nose and then my face.
    I tried to speak to my wife but my words came out slurred-I couldn't control my face muscles properly.
    Then the pain started. In the backs of my shoulders. It got worse quickly. My wife phoned 999 (911 to my American cousins). By the time the ambulance arrived I was in a lot of pain, and I had twigged what the cause was-low potassium. We had a banana with us so I quickly ate it. I was hitting my head against the steering wheel because the pain was so bad. It was like cramp I have had after heavy exercise many years ago, but you couldn't stretch it out.
    The paramedic gave me morphine and gas and air. It didn't help.

    After a while the banana did, a bit. On arrival at hospital my pain had gone from 9/10 to 7 or 8/10. Over the next hour it dropped to 6. Much more bearable.
    I explained what was happening and that I had ME. The doctor said he thought I had had a panic attack. I te him I didn't. He then told me that they didn't call it ME anymore, but CFS. I told him again that he was wrong. He wanted to discharge me.
    I told him to run a potassium test first. Grudgingly he did "it will come back high" he told me.
    Five minutes later he came back sheepish, it had come back low.
    He took more blood to get a formal reading and to test some other stuff. Two hours later a much more pleasant doctor came in and apologised that they had lost my blood and needed to take more. Rather than wait so they would give me potassium I got her to take the blood then discharge me so I could go take some potassium. Got home took some and feel a lot better. Pain now 3/10. I get the eesults of my test tomorrow.

    Conclusion: do not go anywhere without potassium and don't forget to take it. Even if on a relatively low dose like me and haven't had any significant low potassium symptoms before. It hits hard and sudden if you stop respecting it.
  2. Calathea

    Calathea Darkness therapy

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    Yikes, are you OK? And are you sure that you're getting enough potassium, anyway? 99mg tablets don't get you that far, a lot of recommendations for potassium are in the region of 3500mg.

    Being a woman equipped with a handbag, I have a small tube with low-sodium salt in it. I generally put it into tea. I've never actually tried taking potassium during a collapse while out, they occur rarely and I haven't been on potassium all that long, so I'm not sure how practical a powder would be in emergencies.
  3. SOC

    SOC Moderator and Senior Member

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    Gosh Snow, that's awful! How are you now?

    Maybe there's a good side to this crisis -- perhaps you educated a couple of doctors, if only a little.
    Valentijn likes this.
  4. snowathlete

    snowathlete

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    Thanks for asking how I am - I'm ok. Not back to 'normal' yet but basically ok. Hopefully I will wake up tomorrow feeling better.

    I don't blame the doctor really he was just following what he's been taught, but it's a shame they are taught the wrong stuff on the first place. What I don't get is, since when has cramping pain in the shoulders been a symptom of panic attacks? I guess he assumed I was imagining it. I also don't know why I only got the pain in my shoulders-why not my other muscles?

    This is actually great news in a way because it's a solid sign, along with recent colds , that methylation is working, doing what Rich and Fred say it should.

    After today Calathea I don't think I'm taking anywhere near enough potassium. I expect i will at least triple the dose.
  5. ixchelkali

    ixchelkali Senior Member

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    Wow! Good thing you figured out what was wrong and good thing you pushed for them to check your potassium. Yet another story of ME patient not being taken seriously by emergency room doctor.

    Could you tell me more about your low potassium? Do you always have a problem with it if you don't take the supplements, and do you know why?
  6. Dreambirdie

    Dreambirdie work in progress

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    Just shocking what ignoramuses these doctors were. Arrgggggh! Makes me angry to hear another story like this.

    I am so glad YOU knew what to do, Snow, and that you made it through alright.
  7. gu3vara

    gu3vara Senior Member

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    Sorry to hear that, must be scary!

    How much methylfolate and b12 are you taking btw?
  8. snowathlete

    snowathlete

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    I've never had a problem before, so didnt think I would because of that even when I realised that I'd forgotten to take my tablets. I thought I would just take it later. No problem.

    Fred can explain much better than me why you need the potassium but as I understand it when your methylation cycle starts working your body starts replacing a backlog of cells and needs potassium for this. So you become quickly depleted. Even if your levels of potasium was normal because the backlog of cells you builtup with me and an locked methylation cycle is not a normal state that healthy people find themselves in. Your body I think is trying to do months of work in a day to catch up. Fred will definitely explain that better and more correctly than me.
  9. Gavman

    Gavman Senior Member

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    Yeah wow that sucks big time. Great that you got a test done that showed low potassium though, upping your intake now? Potassium/Magnesium really made a difference in me.
  10. Freddd

    Freddd Senior Member

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    Hi Snowalthlete,

    Sorry to hear of your troubles, glad it was only a close call. I think it is important to know what is happening as you did so that the ER folks could treat you right instead of wrong. They won't recognize low potassium. Since they think that ME/CFS/FMS people are headcases of course they will call it a panic attack or something. I had a hell of a time getting a gall bladder attack recognized as such. It took 3 hours screaming in pain to be treated.

    That is a scary experience. What was your potassium level after they measured it? Don't you like how they are always sure we are wrong "It will come back high". When I said that it took 45 minutes to crawl from bedroom to kitchen I wasn't kidding. You need to have awareness of earlier signs before it gets to such painfully disabling ones.

    If I miss a meal with my vitamins, I start having a problem within hours of when I normally take some. I have to take some "specials" whenever I am more than 3 hours late. I should keep some in my car now that I think about it. I hadn't realized how intense annd steep the drop in potassium can be for some people. How much were you taking daily beofre this?
  11. Freddd

    Freddd Senior Member

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    Hi Snowathlete,

    Part of the time they are used to getting things that don't make a lot of sense to them. "Detox" as we have discussed here isn't specific enough to tell them. As far as the medical industry is concerned "detox" some kind of imaginary reaction by food and vitamin faddests. So imagine, somebody gets carted into an ER without the knowledge you have and says "I'm in detox from some methylation vitamins ...".


    What happens to this person?

    With the active b12 protocol we know when potassium drop will likely occurr, at around the 3rd day or later. We don't know that clearly when it will occur with the SMP but if you look at all the old posts of years gone by there are all sorts of people in "detox" at least some of which is low potassium and at least some of which is folate deficiency


    I te him I didn't. He then told me that they didn't call it ME anymore, but CFS. I told him again that he was wrong. He wanted to discharge me.
    I told him to run a potassium test first. Grudgingly he did "it will come back high" he told me.
    Five minutes later he came back sheepish, it had come back low.



    Suppose he refused to run the test and you became loud and upset becasue nobody will listen to you. They might decide you should have a psyc med to "calm" you down or have security escort you out. I've seen something like this start to happen with a person I took to the ER when I intervened. I stopped them for a moment and said "You know, when I testify in the court case that is about to get started here I will describe exactly how you baited her into misbehaving to provoke the incident you were about to cause. Now do you want to cause an incident that will end up in court or do you want to treat her decently and give her the medical care she needs.

    Remain calm. Explain calmly. Make sure the person with you can do the whole explaination too. You may be emotionally unstable due to the same low potassium. Maybe we need to come up with a carry-in sheet to hand over when we suspect such.


    You have no idea how fast this can go bad. A person knowing what it is will seem desparate, like somebody in accute withdrawal, always a good reason to mistreat a person.


    I only hear the horror stories. I only went with people as patient advocate for those with a history of problems of various kinds and needs a friend. If it goes wrong for any reason this ends up as a dissatisfied customer report at best, as a court case and/or death at worst.
  12. Freddd

    Freddd Senior Member

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    Hi Snowathlete,

    Actually you got the gist of it. Becasue you body hasn't had what was needed to heal, it didn't. Then when everything was suddenly available all the pending projects started and there were not sufficient supplies for everything to heal at that rate. And there it is. It's why so many run out of folate, potassium, other vitamins and minerals and other things. As the healing progresses these needs will vary, over and over.
  13. snowathlete

    snowathlete

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    How much methylfolate and b12 are you taking btw?

    I'm taking the three types on Fred's protocol, one each a day in the evening.

    Having had no Potassium related symptoms before, and being on a low dose, i just didnt imagine that it would hit me like it did. Ten minutes before i was in agony i was driving along talking totally normally. I had no indication that i was about to have the problem i did.

    I was very surprised by it. I thought that if low potassium did hit it would be mild at first and i would have hours to go get some potassium and start feeling better. I imagined that it would take days of missing my dose before i would get the level of pain i got.

    As you suggest Fred, i think a page of info about the treatment and why it causes low potassium, and the symoptoms of low potassium would be an excellent idea, and people should carry with them. It would have helped alot yesterday. Had i not had a banana with me, i would have stayed in the 9/10 pain range and i wouldnt have been able to get across the information that i did and pushed for the test. I could easily have become the person in the scenario that Fred describes above.

    I also think a general ME/CFS sheet would help too - not just in this circumstance, but in any doctor visit. Short and simple facts like it being an officially recognised nerological condition by WHO and the recent statement by the health agency that it is not a phycological condition. These sheets probably need to be country specific.

    by the way, as another example of poor treatment yesterday, the paramedic in his handover said to the ambulance staff, "he thinks he has low potassium because he is on some supplements. They are making him urinate frequently"

    The paramedic then ran this all past me, and i said "No, he just guessed that bit. I havent even mentioned urinating, i am urinating normally. The supplements are not diaretics."
    She was just as perplexed as me as to why the paramedic made this up. Basically he just concluded this in his own head without any factual basis. It could have derailed my treatment right there and then.
    I might well complain about this comment as it goes, because it was so bad.
  14. alex3619

    alex3619 Senior Member

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    Hi snowathlete, not complaining means the problem can happen again, either to you or to the next person. Bye, Alex
  15. Calathea

    Calathea Darkness therapy

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    I wouldn't bother complaining, they always blame the patient as far as they possibly can. In this case, they can, as it's subjective. It took me six months of solid complaining to get a complaint recognised about a hospital failing to meet my dietary needs after promising to, and that only went through because it was a basic factual event and I had paperwork to prove that I'd requested the special meals.

    I wouldn't use the term "detox" to a medical professional unless you are experiencing detox as defined by the medical profession. This means withdrawal from alcohol or illegal drugs, and incidentally is a completely different situation to feeling bad due to coming off supplements as it can cause hallucinations, major brain damage, or death. Doctors do not appreciate having terms like that thrown around inappropriately. They won't even use "withdrawal" unless it is a drug which is universally accepted to be addictive; if it's only generally-known, they may refuse to use that term. I experienced this with gabapentin withdrawal: officially it is not an addictive drug, so the doctor called it "withdrawal" and then hastily amended that to something else, and every other time I spoke to a doctor they called it something else, very deliberately. Remember that the purpose of your visit it to get medical treatment, not to convince doctors that they don't know about a certain subject.
  16. Sasha

    Sasha Fine, thank you

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    Hi snowathlete - sorry to hear about your awful experience. I hope you're still improving.

    99mg of potassium is very low indeed, I think. The RDA is about 4,000 mg and the average diet provides about half of that so you're probably nowhere near even the RDA. Fred has previously recommended a test dose of 500mg if you think you're getting low potassium symptoms, to see if you feel better within about half an hour of the dose and if you do, you were probably short of potassium and need to up your daily dose. A banana is supposed to have about 500mg but bananas vary in size! Some have only half that.

    I had to quit Fred's protocol because of what seemed to be induced deficiency symptoms (possibly potassium or magnesium or something else) that I couldn't get on top of. At that point I was taking 2.5mg of adenosylb12 and 7.5mg of methylb12 and 1,000mg potassium a day. I think Fred takes about 1,500mg a day.

    You don't say how many mg b12 you are taking daily. Just wondering? Of course, different people will run into trouble at different doses.

    I was surprised at all this info on relative doses of potassium when I looked into it for myself - the high RDA, the low content in the average diet, the tiny amounts we're supplementing with on the protocol if we're overcautious. Of course we can also take too much potassium - but I think most of us are too low.
  17. snowathlete

    snowathlete

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    Im taking the exact products suggested by Fred. I.e. Jarrow Formulas 5mg Methyl B12, Enzymatic Therapy 1mg B12 infusion, and Source Naturals Dibencozide 10mg. One of each a day.

    I dread to think how things could have turned out if we had not had a banana with us, or if my wife had not had remembered we had it in all that panic. I was lucky that it was a medium size banana, not a small one.

    I think I must have been too over cautious with the potasium dose. I planned to increase it if i got any symptoms - thinking that they would come on somewhat gradually. Ive already taken 300mg today and will take at least another 300mg later (I know, I know, its still too low probably. But i need to get myself together today and give my dose some proper consideration with a functioning brain, so its just a stop-gap for now).
  18. snowathlete

    snowathlete

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    OK, this is just a start, but how is this for a first draft?
    Obviously, its UK specific, and anyone who wants to use it may need to make changes as are specific to them.

    ME/CFS Fact Sheet.

    I have been diagnosed by an NHS ME/CFS specialist as having this illness: ME/CFS, a significantly debilitating medical disorder.

    ME stands for Myalgic Encephalomyelitis. CFS stands for Chronic Fatigue Syndrome. ME is recognised by the World Health Organization in their International Classification of Disease, as a debilitating Neurological disorder, classified under G93.3 diseases of the nervous system; subheading other disorders of the brain.
    The department of health recognised ME/CFS as a neurological condition:
    The department will continue to use the composite term chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) for this condition, or spectrum of disease, as suggested by the Chief Medical Officer in his 2002 report. We recognise the condition as neurological in nature. Earl Howe (Parliamentary Under Secretary of State (Quality), Health; Conservative), 1 March 2011.
    The NHS website states, that most doctors prefer to call the condition CFS, and that most patients prefer to call the condition ME. It does not supply the data this statement is based on. However, to be clear my condition has been diagnosed as the composite term ME/CFS, and I wish this to be recognised and not for one or more of these terms to be removed because of a doctors preference, whatever that may be, and for my treatment to be prescribed accordingly.

    Blood

    Although the pathology of ME/CFS has not been firmly established, from the 1 November 2010, the Department of Health has banned the donation of blood from patients with a diagnosis of ME/CFS due to contagion risk. Care should therefore be taken with my blood.
  19. Sasha

    Sasha Fine, thank you

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    Hi snowathlete - those are fairly high doses that people end up on after gradually building up for a long time - Fred suggests gradually titrating up - I'm wondering if you just started with a full tablet of each? Quite recently? It took me several weeks to titrate up to the doses you're on.

    Fred says people tend to run into potassium deficiency within three or four days of starting the protocol (and that's starting at low doses of about a tenth of what you're on, I think!).

    Sorry I may not have read your thread properly - I'm a bit worried you've started the protocol a day or two ago at a massive dose and that that is going to cause you huge potassium problems.
  20. maryb

    maryb iherb code TAK122

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    Glad you are okay now SA, what a scary experience, be interesting to hear what your initial results were, by the time the later ones were taken, results were probably higher, funny they lost the earlier ones????? those may have been seriously low too....... I would ask for a copy of the results if I were you. Good news is you are improving in general on the MP.
    I don't mention to anyone at hospitals now that I have ME. Just say I haven't been well, is this a good idea? I really don't know but one thing is certain the hospital docs have no respect for people with ME, they won't even call it by its proper name. As they are directed. But if they call it CFS then they don't have to treat you like you have a serious debilitating neurological illness.

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