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Theory about pem

Discussion in 'General ME/CFS Discussion' started by carmadw, Jul 21, 2016.

  1. carmadw

    carmadw

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    Graz, Austria
    My Theory about ,,pem, ,....

    Last year I had a horrible pem, but a doctor came and gave me praxiten, which stopped my pem...the Problem was, that I did too much the same evening and I had these feelngs in the head, that you get the day before the actual pem.
    So I took 30 mg oxazepamm for the
    Night but, slept fine, then woke up and pem again, but sadly not they same pem that at I got usually..
    Usually my pem was : doing hnothin. And wait until it's over. feelngs in the day he actual pem, sleeping and there it was,
    A complete other Form of pem, wasn't able to move , that's normal, but I had no Power anymore in my legs. I was full with fatiue and everything Hi I did. Trying to w,lk,, orf watch tv ,even talkingtv made my condition worse .

    So I think the usual pem was stopped, because I took Oxzepam.
    I think pem is because you're overdoing, it leads to a state when some kind of inflammed nmda recerptors are overdoing the whole body and gaba tries to stopú And inhibit the overding nmda receptors
    .
    In my case I took the oxazepam at thnight, when I got the pre-pem state. So I hought my pem wasn't as usually because my gaba, couldt Act as the should Act, because I took the oxazepam which signalises the body, that they don't need to Fight on their own.

    Why I think that one part of the pem is a inflammed process with high nmda activity is because the predison help so mucgh
    I it took a few day, I had terrible Headaches, but the feeling or fatique went better everday, it felt like an inflmmation state, which was all around the body.
    I nearly felt healthy, but then I did the worst thinhg in such a Situation
    ..
    Are there any studies that have worked in this area?
     
  2. Hip

    Hip Senior Member

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    It is a bit difficult to follow your post. Are you are saying the following:

    • You did some physical exercise that would normally cause PEM.

    • You took the benzodiazepine drug oxazepam before going to bed, on the day you did this exercise.

    • The next day, your PEM was eliminated, or different to normal.

    Is that what you are saying?


    Have you tried any other benzodiazepine drugs (like clonazepam, diazepam, lorazepam or alprazolam) to see if these also reduce your PEM?
     
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  3. carmadw

    carmadw

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    Graz, Austria
    Excuse my poor English Skills:
    I got pem, then it tooktoo oxazepam, which stopped this pem
    Unfortenstly I was overdoin CG on the same day , took of oxazepam and slept. Next days something was wrong.
    At my normal pem, all I got do or all I could do , was lying there and wait until it's over.
    This time the pem process stopped, all I had fatique. Couldn't go, was full bedridden.
    It sems to be, that because I was full with Benzos, the natural gaba System didn,t work anymore.

    Short
    : I did enough, so my pem startet Next day.


    NK took oxaszpam when pem was there.

    This time the oxazepam stopped my pem.

    But I was doing to muc HB on the same day, then sleept with oxazepam.

    Waki g up with a different pem.
    Normly by body needed 1 dsay to recover, but this time my body just didn't work like it should do...
    That's why I tink that Gaby and glutamate receptors, nmda receptors Plays a huge role in this ,,pem,, thng
     
  4. carmadw

    carmadw

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    Graz, Austria
    Sorry, the Post are really different to Reader...
    First of all, i Bad a normal Bad pem, a doctor came and have me oxazepam...this Made my pem Symptoms dissappear...but i was overdoing in the Same day, Had the pressure Point again and thought If i Took it for sleep, the pem wouldnt came Up...Bad Idea...cause normally pem ist more mike a Processing, this time it was Stagnation.
    Thats why i think pem i a condition of too Low gaba or to much nmda in the Body.
    Which could explain the myalgie.
    Had Cortison therapy, that Made my CFS Symptoms and my brain frogfroh dissapear but Then i Had a prolonged benzo withdrawal Syndrom...

    Everytime i did to much after the Cortison Therapy i wasnt even able to come to the pressure Point because i Had the ugly Feeling of What i called "neuronal Overstimulation", i think IT was
    excitatory neurotoxicity, the only Thing thst helped was a high Dose of pregabalin or benzos ( because i Had a Huge tolerance after the withdrawal syndrmm).
    The Last Time i Had this condition, i havent Take benzos or Lyrica for about 4-6 months and the Same Dose was too Stronv now. I was intoxicated and while so i Took more of IT ( was Out of my mind), and of of the Story, i Took about 150 MG of Lorazepam...
    While i was intoxicated i was overdoing myself and Developed a muscle ache,how i Read, There would be two Kinds of a muscle ache...one of them is What Long distance Runner get...as a CFS Patient i didnt run a Marathon of course, but dir an CFS Patient ist certainly was Like one...What i have Read, this Kind of a muscle ache destroys mitochondria, or the mitochondria have Low Energy ...hard to describe in english, sry...anyway, i Wen to a Store 200 m away, came Home and my whole Body was shaking and and i was very weak...every move Made IT worse...IT was pem Like...
    So my Interpretation is, that pem ist a condition of a gabaergic deficit...
    Or too much of nmda...

    I think You are overdoing g yourself, get the pressure Point, and over night this pressure Point "explodes"
    A nmda Explosion through Out the whole Body...it spreads in the whole body, then You are unable to move because your gaba System must compensate the deficit.
    I didnt allways Had or felt this pressure Point, only in a later state of my disease...ahh i dont kN it exactly anymore.
    I think that gaba/nmda system system plays a Huge role in CFS...
    The nmda destroys the mitochondria, makes them weak, so You have to wait until your gaba System can compensate it

    Is There Amy Other explanation whythe benzo could have helped?

    Any Suggestions?
    I dont think, that There ist a imbalance bereden those two receptors, Just that two much activity activates this pressure Point and the nmda spreads through your Body, weakens mitochondria and You feel weak and cant move
     
  5. Hip

    Hip Senior Member

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  6. carmadw

    carmadw

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    Graz, Austria
  7. carmadw

    carmadw

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    Oh and i think ITS a Kind of inflammatory nmda Explosion....Ehen i was Stuck in the pem Stagnation Mode Symptoms Went away slowly with the Cortison...
    I dont think that Cortison is an adäquate Treatment for CFS in general, only under certain condition...
    A Smalltalk studys showed chronic microglial activation in CFS, i think that expacially EBV hast the Potential to lead to persistent Changes in the immune system, in Others wird's the immune reaction to the EBV stays active, even the Virus itself isnt active anymore.
    So weit have an Center of inflammation, Bit i think that this Center can Break Out.
    My diagnosis was neuropathic pain syndrom, i think IT was more Like inflammatory nmda Activity. IT felt Like my neurons got poisened and IT was painful, i Had multiple pain Centers in my head and and the pain Went away with Lorazepam, high Dosis...
    I Imagine IT Like a Knights Castle...the Center of inflammatory ist the Knights Castle...so You can Siege the Castle and let iT Starve, which is what they do with valganciclovir i think...valganciclovir has of course high properties to inhibit microglial activation, but but in some cases IT needs about 6 months or Longer until your See Results, or You can either Lure Out the Knights to Fight them, which is, i think happened to me...Not by purpose, ITS very Dangerous because whenwhen Happens the Center of inflammatory Breaks Out and Then You Need strong weapons to Fight them...i Had luck, without the benzos and the Cortison, i think i would be Dead now...Sounds Schizophrenic? Yeah i know, but i am Just speculating and trying to Interpretate My experiences...
    ITS Like a intelligent inflammation and the Part of Our brain that ist responsible to Protect us for the inflammation to Break Out, also prevents possible microglial Inhibitors to Work or to get into the Knights Castle...
    Its an intelligent inflammatory and i think doctors and Researchers should Work together with Professional Hackers...Sounds wierd...
    I think Regeneration Happens in the brain...
     
  8. carmadw

    carmadw

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    Graz, Austria
    Sorry for the different to Read Posts, damn autocorrect....
    Can only write cause I am full with oregabalin
     
  9. carmadw

    carmadw

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    Graz, Austria
    Come in...pls write and try to explain about your pem experience...so IT...i want to fix ist and find a solution...cause Nobody Else does
     
  10. carmadw

    carmadw

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    Mitochondria Dysfunction hast Bern shown in CFS
    https://www.ncbi.nlm.nih.gov/m/pubmed/1792865/

    But why?
    Theory, You geht the Initial Infection, a Virus Takes away or Lives through the Energy of the mitochondria and so Takes away the Energy of them.
    The immune Response to the Infection stays active and the dick Person cant Regeneration...and now i'm unable to write Further, Grad pain...but You See in which Direktion my theory goes
     
  11. Cath

    Cath

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    Hi @carmadw, I’ve read your posts but can’t seem to get my head around them. My brain fog is intense at the moment.

    Hopefully someone else on the forum will be able to help you with this.

    Cheers,
    Cath
     
  12. jesse's mom

    jesse's mom Senior Member

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    I am hearing you, It is funny wIth all the people in the world it seems we have to become accustomed to the way each person writes in English.

    There seems to be an over excited state I have if I push my body, mind or emotions too far. Like and adrenaline rush. I used to try to get as much as I could on those days, I really felt and probably seemed manic. My husband now recognises this state and warns me that I am overdoing it. I then go and rest, I read, write, watch a movie, take a warm shower... something to be still. This seems to keep me from a bad PEM state.

    When I get PEM now I can't think straight, my spelling gets worse. I walk like a penguin when I can walk. My eyes get blurry, and it hurts to be in a place where there is any light or sound. I get horrible pain all over, but mostly my neck, shoulders, arms and the backs of my legs. I shake like I suffer from Parkinsons (I have been tested and do not). I also have wild muscle jerks and spasms. I sleep about 4 hours tops when I have PEM, then I lay there and so what I call "fake sleep" I like a light scarf over my face. I do take benzos, one for sleep. that is Halcion .25 with a five hour half life.
    I take Klonopin .5 when I am over stimulated or shaky.

    Sometimes drinking a little alcohol is good, and I feel better. Drinking heavily makes me much worse.

    I really don't understand all the medical terms and that end of our illness. I would read what Hip has written, it has helped me understand a little better. I wish I would have learned about this before I got sick. I was much smarter then...

    I hope you enjoy the forum, so many wise and compassionate people here.
     
  13. carmadw

    carmadw

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    Good to hear You, Thanksgiving for your Post
    Most of the Stuff i wrote is unreadable because of permanent autocorrection, i think, sry for that
    I try to fix it when i can, but at the Moment ITS hard to Read and write Tor me.
    I Had to correct this post multiple Times, mostly cause of autocorrect
     
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  14. jesse's mom

    jesse's mom Senior Member

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    I get it. it's all good.
     
  15. jesse's mom

    jesse's mom Senior Member

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    that is a really funny autocorrect!;)

    hmor and laughter seem to help me.
     
    Mel9 likes this.
  16. Learner1

    Learner1 Forum Support Assistant

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    I has a hard tume going through your entries due to the autocorrect issues. My typing looks bad sometimes as even when i type correctly, autocorrect mangles things. Irritating!!:bang-head:

    Might it work for you to use voice recognition and Google translate if necessary?

    Re: PEM - I used to get it regularly, with increased mental or physical exertion. It feels like a truck hit me, I am exhausted and feel weakness in my arms and legs, dizzy and thickheaded, and increased swelling in my lymph nodes. It would last for 12 to 36 hours. Increasing hydrocortisone, thyroid, or NAD+ didn't help.

    I saw a recommendation for BCAAs (leucine, isoleucine, and valine) as a PEM antidote on another thread and as my lab results were low for these, began experomenting with them, and found 4-6g, taken before or after increased exertion or the beginning of PEM helped, in many cases, it averted or reversed PEM.

    Not always, though.

    My tests consistently show depleted ALA, vitamim C and glutathione, markers of oxidative stress, and peroxynitrites, as described by Pall and Mortis and Maes. I also had some mycotoxin problem.

    But I also have mitochondrial dysfunction, with complex I at less than half function and the other complexes grratly increased - they seem to be the source of this oxidative and nitrosative stress. So, the more ATPi demand and make, the higher my oxidative snd nitrosative stress. For me, it seems to be the source of much of my PEM.

    My doctor already had me taking a comprehensive supplement program with lots of antioxidants. It didn't seem to be enough.

    He had me add in liposomal glutathione every morning, then after increased exertion, I take 500mg of r-glutathione in pill form. This, along with taking BCAAs every day, has helped me head off PEM most of the time and taking extra glutathione and BCAAs has reversed it.

    Since trying these, my PEM is rare.

    Hope this is helpful.
     
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  17. jesse's mom

    jesse's mom Senior Member

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    thank you, it is to me.
     
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  18. carmadw

    carmadw

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    Graz, Austria
    My description of this Bad pem Episode, was at a later Stadium of my disease...
    However, i think that There is a mitochondrial Dysfunction underlying CFS and as shown Here https://www.ncbi.nlm.nih.gov/m/pubmed/28869472/
    Dysfunctional mitochondria make a state of excitatory more likely, which weakens the mitochondria again and so on...
    It's a Devils circle

    Ahh i am Not only suffer from CFS But also from autocorrectenia
     
    Last edited: Sep 4, 2018
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  19. carmadw

    carmadw

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    Which Tests for mitochondrial function do you do?
    What to Test?
    Could U give ne a Link to the Stuff that pall and Maes showed?
    IT's important because i live in a Country where they do Not Accept CFS as a diagnosis
     
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  20. Cath

    Cath

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    :) :) :)
     
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