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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Acetylcholine caused crash

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Xander5, Feb 17, 2016.

  1. Xander5

    Xander5

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    Hi, I'm new here and was hoping to get your guys opinion on acetylcholine, and specifically a supplement that I recently tried by the name of Parasym plus. This supplement, developed by Diana Driscoll contains various forms of acetylcholine such as alpha gpc, Huperzine a, and acetyl l carnitine.

    After reading an interview between her and the low histamine chef, it seemed that this supplement would do wonders as I also suffer from pots and mcas. Initially it made a huge difference for my flushing, but after several days I became extremely sore and tired, so I stopped the supplement. Now, a week later I am the worst I have ever been, suffering from extreme adrenaline rushes, as well crippling muscle soreness, and almost everything is driving me into Pem.

    I tried taking the supplement again, this time at a much smaller dose, 1/4 of the lowest recommended dose, and while it calmed me, it caused the muscle soreness to get worse, so I once again got off of it two days ago. Ultimately I guess I posted this to ask if these types of supplements can cause severe reactions in PWME, and if you guys had any advice on how to halt this terrible crash.

    My cfs has been pretty mild in these first two years, and I am honestly terrified that I have somehow permanently ruined my body, as I am currently mustering up all of my strength just to sit up to type this. I have just been lying in bed the past few days, and I am afraid my regression will only get worse. If any of you have had a similar situation when trying these three substances that the supplement is made out of please share
     
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  2. jimmy86

    jimmy86

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  3. Xander5

    Xander5

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    I'm not sure how to contact her, but I'm hoping that these negative symptoms just go away on their own. I recently just learned that acetylcholine, which is what the supplement raises, has an inverse relationship with serotonin. Many of the symptoms I have been having such as the extreme sound sensitivity and lack of deep sleep are a result of low serotonin, so I am hoping that my body naturally corrects itself over the next few weeks. I may contact my doctor about taking an antidepressant short term to see if this relieves any of my symptoms
     
  4. scotchmagic

    scotchmagic

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    Hello.

    I just had to reply. I have been in the excact same situation as you for about a year now. The same thing happened to me. I tried acetyl l-carnitine and after that nothing has been the same. I have not managed to find out what has hapened. I also got the crash. I am thinking that it even was what made my CFS go full blown.

    As you, I have had a "mild" case (as diagnosed by doctor) for several years before and I have been able to live with it. After acetyl choline I have become really ill. This happened about 1 year ago (winter 2015), and I have not been able to lift the "block".

    Ive tried the simplifyed methylation protocol. And lots of other supplements, diets etc. The only thing I have not tried is L-carnitine fumarate.

    I am sorry that I cannot be of any help, but for what its worth, we are expriencing the same. And there has to be a way out of this.

    Any input, anyone?
     
  5. Xander5

    Xander5

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    How did it change you? After the supplement, I have been feeling extreme anxiety which has translated into fatigue as I cannot rest.
     
  6. scotchmagic

    scotchmagic

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    My tendency for flushing feels like it has turned on 100%. It is constant. My skin is dry, I have extreme dandruff. I also experience alot of anxiety, to the point of body trembling at ponts.

    Cold extremeties, dry hair, thinnig hair, extremly dry scalp, depression, ALOT less energy than I had before the supplement, etc. It really crashed me and I havent been able to get up. Before this I would get up from the crashed state on a regular basis, but after the supplement this does not happen. It feels like a "constant crash"
     
  7. adreno

    adreno PR activist

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    Acetylcholinesterase inhibitors have been known to sometimes induce a PTSD-like state. Also, pesticide poisoning (a known trigger of ME/CFS) is essentially acetylcholine overload (pesticides are acetylcholinesterase inhibitors).
     
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  8. Xander5

    Xander5

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    Do people ever get out of this ptsd state, or will I be stuck this way for the rest of my life? Also, are their any supplements I can take or changes I can make to stop this?
     
  9. adreno

    adreno PR activist

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    I don't think anyone knows. The theory is that the spike in ACh is followed by long-term suppression. The same probably goes for cortisol, since the HPA is activated by ACh. There could be immune system changes, etc. Also, ACh overload is neurotoxic.

    Perhaps topping up the Ach with mild boosters would help. Or perhaps suppressing ACh even more would allow the system to swing back. But these are just guesses.
     
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  10. Xander5

    Xander5

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    Ok, the idea of messing with this system even more terrifies me, so I think I will see if it gets better on its own. Thanks for the advice though
     
  11. Xander5

    Xander5

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    If I were to try this, what ach supplements would be considered mild? It seems that my body is extremely sensitive to them. I wasn't taking a large dose when all of this started
     
  12. adreno

    adreno PR activist

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    Well, I would consider phosphatidylcholine and pantethine (active B5) mild.

    ALCAR is quite strong, so is Alpha GPC. And AChE inhibitors (Huperzine A, etc) are probably bad news.

    And the problem with Parasym is that you increase availability of ACh (via Alpha GPC), while inhibiting the breakdown of it (via Huperzine A) at the same time. So this will cause a huge increase in ACh that can't be cleared from the synapse.
     
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  13. Xander5

    Xander5

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    I will order those supps tomorrow. Thank you so much for your help. You are definitely correct about the Parasym. The way that it was marketed in the interview I read made it seem so harmless, but it is incredibly potent and I wish that I would have been more cautious.
    On another website I found a thread discussing this problem, and a person who had used too many of these types of supplements said he used cfos inhibitors to help get himself back to normal. I guess that cfos is the gene that changes when acetylcholine overload occurs. I tried to contact the person who said this in order to clarify what this meant, but it seems that they have been gone from that forum for a while
     
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  14. adreno

    adreno PR activist

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    Interesting. Here's the article describing changes in c-Fos:
    http://www.nature.com/nature/journal/v393/n6683/full/393373a0.html
     
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  15. Xander5

    Xander5

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    Yes, that was the article referred to in the other thread. All of this is way over my head so I guess I was wondering what he meant by cfos inhibitors. Either way thank you so much for your help, it's very nice to be able to talk with someone who understands this condition so well
     
  16. scotchmagic

    scotchmagic

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    Yes there is something in the choline part! I have for the last days been trying lechitin and there is something in this. My brain fog has lifted, so has the depression. I still crash, and I crash even faster than before. But for a little while, my symptoms are much better. Perhaps if we take it over time, something will happen.
     
  17. adreno

    adreno PR activist

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    c-Fos inhibitors are hard to come by. Was it some research chemical he was taking?
     
  18. Xander5

    Xander5

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    I actually just found the thread again as I was only quoting from memory after seeing it a week ago. He states that fisetin worked well as a cfos inhibitor for him, but that curcumin or quercitin should work as well. I'm not sure where he is getting his information from, but I know that these do have neuro protective properties
     
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  19. adreno

    adreno PR activist

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    Sometimes you just have to go fishing on Google. So you could search for e.g. "curcumin c-fos" and see if anything useful turns up. It seems it does inhibit c-Fos, the question always is how strong the action is.

    I see that fisetin is available on iHerb, might be worth a try:

    Doctor's Best, Best Fisetin, Featuring Novusetin, 100 mg, 30 Veggie Caps
     
  20. Xander5

    Xander5

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    I'll definitely give it a shot. It seems that these herbs and spices are relatively safe so hopefully I won't have any terrible reactions. Hopefully fisetin combined with a mild choline supplement will help me feel somewhat better. Once again thank you for all of your help, and I'll update you guys In several weeks in which time I will hopefully be feeling a little bit better
     
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