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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Hypokalemia (Low Blood Levels of Potassium)

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Hypokalemia (Low Blood Levels of Potassium)

  • This topic has 5 replies, 3 voices, and was last updated 7 years, 7 months ago by Barbara.
Viewing 6 posts - 1 through 6 (of 6 total)
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  • August 19, 2015 at 7:49 pm #885
    Frost
    Participant

    Dear All,

    I have EDS, an overlap between classical and hypermobile type (at this point), and have consistently during the last 3 years had low blood levels of potassium (hypokalemia). The normal range of potassium in the blood is between 3.5 and 5.0 meq/l. My results average to 3.1 meq/l.

    I have some symptoms that might be attributed to hypokalemia (according to wiki: https://en.wikipedia.org/wiki/Hypokalemia#Signs_and_symptoms):

    (1) I get “weird” muscle cramps in my hands, calves and feet. They are not “proper” cramps, but feel more like “pre-cramps”, i.e. the muscles get tense and if I move in an appropriate way, a proper cramp will develop. But, most of the time, my muscles are in this “pre-cramp” state. This is especially true towards the end of the day, when I am in bed.

    (2) I get twitches all over my body – e.g. neck, biceps, stomach, legs. The muscles there “spontaneously” start to oscillate (without me moving or controlling them), and they will “oscillate” for anywhere between 1 – 15 seconds. It also tends to happen more towards the end of the day.

    (3) When I extend some of my muscles to extreme positions, they get “stuck”, and a horrible cramp develops. For example, if I open my mouth too much, I will get a cramp kind of below my chin, and will be unable to close my mouth for a minute.

    (4) When the muscle cramps and twitches become very pronounced, I tend to be very tired – so there might also be a fatigue induced by hypokalemia.

    Now, hypokalemia is rarely associated to inadequate food intake. In fact, I have been eating potassium rich food for more than 6 months now, taking almost 50% more than the daily recommended dose, and there has been no improvement in my symptoms, nor my blood tests.

    This leads to a question – Is there any research linking EDS to hypokalemia? Do any of you have similar problems? Any suggestions on what might help? I am seeing an immunologist regarding this, but he knows nothings about EDS. That’s why I’d like to present him with some facts related to EDS and hypokalemia.

    Note: A possible connection between EDS and hypokalemia that I can see is via an increased urination and sweating that I experience – perhaps those arise due to dysautonomia induced by EDS, and then they cause a big loss of potassium from the body.

    Thanks!

    August 20, 2015 at 8:34 pm #5615
    Barbara
    Participant

    Hi,
    yes you are quite right with the ‘loss of body fluids’ as a potential cause for low potassium (hypokalemia). I have suffered from the symptoms you mentioned (severe sweating, particularly during the night – prior to wearing a Philadelphia collar) and the muscle twitching (fasciculations) and cramps and pre-cramps, I haven’t had the muscle stiffness upon over-stretching though but the rest I can relate to.

    I have to admit, I have also wondered how to ‘up’ my potassium levels, so thank you for raising this and prompting me to look into it! My food intake (which includes a banana every day) still doesn’t increase my levels by that much – though at the moment, although low, I am in the normal range.

    I’ve just been doing a little bit of research because I wondered if a deficiency in something else could contribute (i.e. something necessary to assist absorption/retention, or something) and I came across folic acid. Now I have to say that my symptoms haven’t been as bad since I have been supplementing with B vitamins, which include folic acid.

    Also interestingly snd perhaps more importantly, we talk a lot on here about Magnesium Deficiency, which I try and correct with Epsom Salt baths. It is rife amongst us and this article talks about how being Magnesium deficient can stop us from retaining potassium, exacerbating Hypokalemia !

    http://jasn.asnjournals.org/content/18/10/2649.full

    Regards
    Barbara

    August 20, 2015 at 8:49 pm #5617
    Frost
    Participant

    Hi,
    yes you are quite right with the ‘loss of body fluids’ as a potential cause for low potassium (hypokalemia). I have suffered from the symptoms you mentioned (severe sweating, particularly during the night – prior to wearing a Philadelphia collar) and the muscle twitching (fasciculations) and cramps and pre-cramps, I haven’t had the muscle stiffness upon over-stretching though but the rest I can relate to.

    Hi. Thanks for your reply!

    During the time you suffered from hypokalemia, was there anything else abnormal in the blood tests?

    I have to admit, I have also wondered how to ‘up’ my potassium levels, so thank you for raising this and prompting me to look into it! My food intake (which includes a banana every day) still doesn’t increase my levels by that much – though at the moment, although low, I am in the normal range.

    A banana per day? That’s nothing! I eat AT LEAST 8 bananas per day. 😀 A very good source of potassium is coconut water – typically, 1 litre contains the daily recommended dose of potassium. Another good source are dates.

    I’ve just been doing a little bit of research because I wondered if a deficiency in something else could contribute (i.e. something necessary to assist absorption/retention, or something) and I came across folic acid. Now I have to say that my symptoms haven’t been as bad since I have been supplementing with B vitamins, which include folic acid.

    Interesting. I supplement B12. Folid acid I get in abundance, as I follow a low-fat, high carbohydrate, plant-based vegan diet. I have been following such a diet for around half a year, and my potassium has somewhat increased during that time.

    Also interestingly snd perhaps more importantly, we talk a lot on here about Magnesium Deficiency, which I try and correct with Epsom Salt baths. It is rife amongst us and this article talks about how being Magnesium deficient can stop us from retaining potassium, exacerbating Hypokalemia !

    Thanks for the paper – that IS very relevant indeed! I have started supplementing magnesium in the last few months. Maybe that was the missing link to correct my hypokalemia, and I just have to keep doing this.

    As my diet is sufficiently high in both magnesium and potassium, I suspect that I might be absorbing less efficiently these (and maybe other) nutrients, and/or excreting them in larger quantities via sweating and urination. Since I do not sweat much MUCH more than other people, and some initial urine tests seem to suggest that I do not excrete a lot of potassium (though more detailed tests need to be done), my current suspicion is that I have malabsorption problems. This would be consistent with the fact that, despite eating enough calories, I am very slim, and this was the case during all my life.

    Thanks for making me think more about this!

    August 20, 2015 at 9:04 pm #5618
    Barbara
    Participant

    No probs, we’re all looking for the right road off this roundabout!

    The only time a blood test has shown ‘below-normal’ Potassium, has been while I’ve been on Diamox and my Bicarb was low too (Bicarb’s been relatively low most of the time I’ve been on Diamox but I think that’s how it works). Unfortunately on this occasion, nothing else was tested. When I was suffering the symptoms like yours, on the very few times I was tested, my potassium was low but ‘within normal range’, it didn’t make sense.

    Thanks for the tip on coconut water, I was drinking it at one time, I don’t know why I stopped.
    B.

    August 23, 2015 at 11:42 pm #5640
    Mog the Dog
    Participant

    Thanks for this interesting discussion. I have been experiencing the weird muscle cramps as well over the past few months. The cramp I get in the muscle below the little finger that allows it to move away from the other fingers is weird but not too painful. The cramps in the lower legs can be excruciating and relentless.

    I have tried upping my potassium intake but have not yet managed to eliminate the leg cramps (which occur mostly in the middle of the night). The article about the relationship between magnesium and potassium was interesting – thanks for the link!

    MTD

    August 24, 2015 at 7:23 pm #5641
    Barbara
    Participant

    Glad to help MTD,
    I tell you what, the leg pains at night were more than a nuisance at one time but I found that sleeping with my feet 6″ lower than my bum certainly helped. I couldn’t go to sleep with my ankles crossed, or my knees up, as both would wake me with severe pain too.

    I have to sleep sitting up as well, so use a ‘profiling’ bed but for those that don’t have one, then chocking the head of the bed up (either on books, blocks or those ‘elephants feet’ purpose made chocks) might help, as may sleeping on a folded up duvet under the rest of the body, to lift it higher than the feet – as well as the Epsom salt baths of course (magnesium boost!)
    Barbara
    (UK)

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