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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Rest PEM?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by duncan, Apr 17, 2016.

  1. duncan

    duncan Senior Member

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    I know this isn't PEM, but it is kinda like a freakish distant cousin, and it is something I was not familiar with.

    A family member has been diagnosed with Andersen-Tawil Syndrome. Only about 100 individuals have been diagnosed with it world-wide. It is characterized by a triad of manifestations: Profound muscle weakness - to the point of paralysis, cardiac abnormalities - principally Long QT, and certain polymorphisms like scoliosis.

    The periodic paralysis/muscle weakness seems to be triggered by rest. So resting after exertion, or just prolonged rest, can cause an exacerbation of this particular part of the triad. It has something to do with potassium channels. I am still feeling my way around the specifics.

    But I had never heard of rest itself being a trigger mechanism to a worsening of some symptoms, and I wanted to run it by the community.
     
    Last edited: Apr 17, 2016
  2. panckage

    panckage Senior Member

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    Not totally sure what you are talking about with the other illness but yes a lot of us find we have an ideal activity level. Too much activity and we crash. Not enough activity and our condition slowly deteriorates
     
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  3. duncan

    duncan Senior Member

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    Right. Understood, @panckage, and thank you. But I am talking about rest itself triggering a sort of crash. Not the preceding activity causing the crash - the "act" of resting triggering it.

    I know it is tied into potassium channels, and I know the few experts who try to characterize the disorder are neurologists.
     
  4. JaimeS

    JaimeS Senior Member

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    Interesting. At least at the start of illness, my muscle pain, exhaustion and weakness was always worst first thing in the morning.
     
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  5. JohnCB

    JohnCB Immoderate

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    I relate to that. Quite often I wake with pain which I now recognise will ease when I get up and start moving a bit. Then, of course, during the day the other similar feeling but different pain will build up in response to activity. That latter pain will ease when I get back to bed and read my book before going to sleep. If I wake after some hours sleep I may need to take a painkiller to get back to sleep and finish my rest. But if I get the pain when I have slept through I try to ignore it until I get up, though when it is at its worst I will use pain relief.

    These things are less of a problem now as I am using regular timed-release analagesic, but when necessary the doctor says I can take an additional tablet in the standard form as a top-up. The GP prescribes the timed release and the top-ups but encourages me to limit use of the top-ups.
     
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  6. duncan

    duncan Senior Member

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    I wonder if potassium is an issue for some of us. Keep in mind, though, that potassium levels are often normal in ATS patients; apparently it's when they have a flare that those levels either spike or drop.

    Of course, I am assuming what little research that has been done on ATS is accurate. There hasn't really been a lot. Checking clinicaltrials.gov, I find only two started in the last 10 years, and one of those was suspended.

    Again, I am not sure if any of this is remotely pertinent to ME/CFS, but I too think it is interesting in a familiar way.
     
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  7. Maria1

    Maria1 Silence speaks volumes

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    I took topirimate as a prophylactic for chronic migraine for a few years before I became ill. I still take it despite wondering whether I might feel better without it in terms of brain fog and fatigue. My migraines return with a vengeance as soon as I try and reduce for any length of time.

    I recently read somewhere that potassium should be taken to reduce the side effects of topirimate. I'm pretty sure it was something to do with 'potassium channels' but I lost myself in Google at the time, and it seemed to be only one doctor or I'd have found it again.

    I definitely have to limit my rest, as well as limiting my activity. Too much rest makes me seize up, but too much activity makes me crash. I still don't have the balance right. Then again this illness doesn't let us ever get it 'right' I guess.

    I don't have the energy to regularly take all the supplements either, but this makes me think I should prioritise the potassium after all.
     
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  8. rosie26

    rosie26 Senior Member

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    Me too. I have noticed over the years and most recently in the last 2 years that there is a point during a severe bout where I get an even deeper deterioration which is too horrible to stay in and I tried to work out what this new and different change was, whether it was my ME or deconditioning.

    So I decided I would try to get up and move around more. It was very hard, I can tell you, because I was so sick but I carefully and gently got up more. And I noticed I began to improve from my severe state but it wouldn't have helped if I had not rested until that point. I needed the rest before that point.
     
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  9. duncan

    duncan Senior Member

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    I am not clear that it is necessarily relevant to pwME.

    Also, from the little bit of research I've done so far, ATS people usually have normal potassium values. It's only when they have an episode - which can last a long time - after rest that their potassium levels go helter skelter. So, they need to be checked during an episode. This presents with its own problems when the episodes aren't profoundly overt.

    But it IS intriguing, this possible parallel.
     
    Last edited: Apr 18, 2016
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  10. *GG*

    *GG* Senior Member

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    I was thinking rubber/condom. But I see you are using it properly, to prevent "disease". So migraines are a disease? Does that mean your brain is diseased? I would think more along the lines of illness. i know migraines are no joke. My neurologist "described" my headaches as migraine-like. Luckily I have never suffered from migraines!

    GG
     
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  11. rosie26

    rosie26 Senior Member

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    I think I just stopped short of migraines with my headaches. I felt quite a lot nausea but never needed a dark room with them.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @duncan I am sorry about your family member being diagnosed with this illness. I am tagging someone @anciendaze who knows a lot about periodic paralysis just in case he might have feedback for you. If not, I apologize!
     
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  13. duncan

    duncan Senior Member

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    What I nice thing to say! Thank you, @Gingergrrl .

    Just as with our illness, I am so embroiled with trying to just LEARN more. But it was the ironic parallels with our presentations and plight that compelled me to write about it. On some level, it seems so relatable.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    @duncan I totally understand the obsession and frantic search to learn more and I have been doing this since discovering I have a rare calcium channel antibody (which may some how relate to your family member's potassium channel issue but I could be wrong.)

    Your question re: "Rest PEM" fascinated me. I do not have "Rest PEM" but I have what I would call "Lung or pulmonary PEM" versus a general full-body PEM. This is a term made up by me but it is the best I can come up with for the weakness in my lung muscles after literally any use of them making me very disabled.

    I do not want to detract the thread from the original topic but do wonder if all of these different versions of our diseases are more related than we can even imagine yet?
     
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  15. anciendaze

    anciendaze Senior Member

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    Just want to chime in with the little I actually know. My main source of information is a patient with hypokalemic periodic paralysis (caused by low potassium levels) I have known for many years. For a long time I didn't realize his problems were caused by that because he didn't get an accurate diagnosis until 2010. Unfortunately, there are multiple types of low potassium channelopathies, and even some which involve hyperkalemic periodic paralysis (too much potassium).

    If that were not enough there are many possible types of potassium channels. Some are voltage-gated (though you won't be able to measure the voltage with a common volt meter), some are controlled by ligands which may be neurotransmitters, some even involve calcium channels controlling potassium channels. There are even the G protein-coupled inwardly-rectifying potassium channels which allow potassium ions in, when gated by the G-protein receptor, but will not allow them out. The ion pores themselves are often fairly simple, like some kind of valve, but the control mechanisms are not. Recognizing neurotransmitter molecules is more complicated than recognizing particular ions, and recognizing proteins is an order of magnitude harder. A lot can go wrong.

    In the problem Gingergrrl experiences the ion channel antibody which has been found interferes with a calcium channel inside a neuron on the pre-synaptic side of a neuromuscular junction. Does calcium cross the synapse? No, the neurotransmitter acetylcholine carries the impulse to the post-synaptic side. If she had antibodies to that receptor, she would have a different neuromuscular disease called myasthenia gravis. There are then other ion channels inside muscle fibers needed for their operation. Signalling involves ATP as well as potassium and sodium ions. (While we tend to think of ATP and other purines as a kind of molecular fuel for cell metabolism, nature thinks nothing of also using them for signalling. Very little in biology has only a single purpose.)

    Ion channels of a single type don't operate alone. Nerves, for example, require pumping sodium and potassium ions in opposite directions before they can fire. When they fire, these ions race back to the other side of the membrane. This happens over and over again, typically many times a second.

    When you consider the multiplicity of types, and the many ways they are linked together in cascades to control metabolic processes, you almost wonder if they were designed by Rube Goldberg (or Heath Robinson). Why use calcium ions to cause vesicles containing acetylcholine to fuse with cell membranes and release their contents when these molecules will be picked up a short distance away, and then used to generate another ionic signal which will cause a muscle to contract, if the signal arriving at the presynaptic side was already electrical/ionic and depended on different ions?

    One big problem with standard medical thinking is that we prefer linear chains of causation, but all of these mechanisms involve feedback processes, making causation circular. This can mean that an attempt to move things in one direction can do precisely the opposite.

    I wish patients with these problems could skip ahead a decade or two to a time when this has been worked out, and proven treatments are available. At present many patients and doctors are involved in fairly random trial and error.
     
    Last edited: Apr 18, 2016
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  16. duncan

    duncan Senior Member

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    That's just an excellent discussion on some of the Science behind the potassium issue.

    Earlier this morning I fired off a couple of emails to University of Rochester ATS experts. This institution seems to have the best handle on the disorder. I am eager to discuss their perspectives and how they might dovetail with PEM. (I know not to bring up PEM until AFTER I get the insights I am after.lol)

    BTW, @anciendaze , they have a study of periodic paralysis going on, and they appear to be recruiting, in case your friend is interested. But this is periodic paralysis specific to ATS, I think.
     
    Last edited: Apr 18, 2016
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  17. Sushi

    Sushi Senior Member Albuquerque

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    In terms of our illness and the negatives not moving around:
    I just got a new HR monitor and, when I don't wear the chest strap, the watch part vibrates if I, in a certain period of time, I don't move enough to support circulation. I did not realize that I was sometimes too inert. So now, when it reminds me, I get up and move around a bit.
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    I wish I could grasp and explain this to others as well as you can!!!

    Me, too, and it is clear to me that my case involves a great deal of random trial and error. I still have more appts and testing before any decisions are made, as you know, but I would LOVE to speed up this process.

    Agreed.

    @duncan Good for you for being so proactive, that is awesome! Do you have any idea if the University of Rochester also has experts on calcium channelopathies? No worries at all if you do not know!
     
  19. duncan

    duncan Senior Member

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    @Gingergrrl , I do not.

    However, one of the individuals I reached out to has co-authored a book called "Channelopathies of the Nervous System". Perhaps calcium channelopathies are covered in that? His name is Dr. Robert Griggs. Also Dr. Richard Moxley (also with U of R) seems to have worked with the NIH on channelopathies that include calcium, chloride and sodium channels. So perhaps U of R may be worth looking into. Have you checked clinicaltrials.gov?

    U of R has an awesome Medical Center.

    Of course, in Winter the Rochester campus transforms into the Russian tundra, and the icy, relentless winds howl and claw into the cold stone and earth, and no life can be sustained. Ok, I might be exaggerating a little. Nevertheless, I'd recommend visiting in the Summer months when Rochester bursts bucolic with the Genesea River winding lazily through the sleepy town.

    Better yet, just do like I do, and simply email/call. One of the world's leading Lyme experts works there, but he no longer does Lyme stuff. You can still find his name on Lyme papers from the '90's: Dr. Logigian. He was big on tracking neuro Lyme via SPECT scans.
     
    Last edited: Apr 19, 2016
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  20. anciendaze

    anciendaze Senior Member

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    My friend is practically sui generis at this point. He has no identified genes, the antibodies they've found are less specific, and he has a complication which makes him rare even among surviving HKPP patients. They couldn't put together a matched cohort larger than three, and two of those may no longer be alive.

    In your discussion of Rochester's winter, you forgot the danger of being trampled by herds of woolly mammoths.
     
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