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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Having my first general anaesthetic tomorrow! :(

Discussion in 'General ME/CFS Discussion' started by Apple, Nov 27, 2014.

  1. Apple

    Apple Senior Member

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    I have luckily managed to get to 25 without ever having surgery, but I have to get a very impacted wisdom tooth removed tomorrow. :(

    It will only be a short operation (<30mins) but I am absolutely terrified at the prospect of my ME/CFS getting worse.

    I am a moderate/severe sufferer. I spend most of my time in bed or on the sofa. I am mostly housebound. It takes me up to a week to recover from leaving the house for an hour or two in a wheelchair. Anything and everything makes me crash. I am aware that a GA can cause a healthy person to feel pretty dreadful for a week or two, so what might it do to me?!

    Can anyone please share some (positive?) experiences or any advice about healing and recovery? Any supplements I should take? I have ran out of protein powder at the worst possible time. Aghh.

    I'd really appreciate any advice or support. I have slept badly all week and am very, very scared. :nervous:

    Thanks
     
  2. adreno

    adreno PR activist

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    Well, nitrous oxide (common anaesthetic) can be a problem if you are low in B12, so in that case you might want to load up before.
     
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  3. Apple

    Apple Senior Member

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    Thanks @adreno. I had a b12 shot just a few weeks ago, so hopefully that won't be a problem. :)
     
  4. Helen

    Helen Senior Member

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    I agree with @adreno . Be prepared to have another one if you get problems. It might empty stored B12. Best of luck!
     
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  5. maryb

    maryb iherb code TAK122

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  6. zzz

    zzz Senior Member

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    The most important advice I have seen on anesthesia can be found summarized in this post:
    The reason for this is straightforward, and is discussed in the PR article, A Neurological Channelopathy in Chronic Fatigue Syndrome (ME/CFS)? There is solid research (cited in the both the above post and the PR article) showing that the sodium channel does not work properly in PWME. Using an anesthetic that blocks this channel completely exacerbates this problem, and can have long-lasting repercussions. Sodium channels are used primarily in the initiation of nerve impulses, which is why blocking them results in anesthesia. Malfunctioning sodium channels result in a malfunctioning nervous system.

    Avoiding sodium channel blockers is even more important in general anesthesia, as higher doses of the anesthetics need to be used.
     
    Last edited: Nov 27, 2014
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  7. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I have been sedated for procedures twice. I had no important issues and didn't notice any long-term effects that I attributed to anesthesia (I had some issues from the procedure but it was something different ). Once went great and I felt fine at the start and woke up like waking from sleep.

    The other I had no long term effects, just some small issues: I felt bad when the medicine began, recall asking for more pain medicine during (but don't recall the pain itself ) recall talking nonsense while being wheeled through halls, and woke only partially at first, drinking juice and then drifting back off again. But nothing serious.

    I don't know what medicines I was given. I think the main difference to me was I trusted the second place (where the anesthesia was great ) and thought they were more professional.

    I tend to be POTSy, and find the IV saline helps with recovery (in my case; you may be different). They may not have this at the dentist. Next best thing for me is electrolyte drink.

    I would also look into adequate pain control for after, so you can rest.

    I had teeth pulled when I was a little kid and not sick yet, and insisted on going back to school after a half day at home. But that was prior to ME. . . I just hoped a random molar story with a happy ending would be cheering.

    I know someone who gets a mouth rest thing so they don't have to hold their own jaw open, but if you're sedated they're probably doing this anyway, huh. :)

    Anyway, hope you get some rest.
     
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  8. maryb

    maryb iherb code TAK122

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    Is lidocaine a sodium channel blocker? I'd had 2 months IM injections of Bicillin with lidocaine and got progressively worse, I thought it was the Bicillin, now wondering????
     
  9. adreno

    adreno PR activist

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    Yes, it is.
     
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  10. zzz

    zzz Senior Member

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    It turns out that lidocaine is a sodium channel blocker. However, things start getting complicated here, because there are various different types of sodium channel blockers which have different effects on the sodium channels. This Wikipedia article gives a good summation of the different types. Note that according to the article:
    The word "selectively" is key here, as it indicates that lidocaine's activity is restricted to a subset of all sodium channels. In general, lidocaine has been shown to be very helpful for PWME, especially when infused intravenously. Dr. Jay Goldstein found that IV lidocaine was one of his most powerful treatments, and that it often relieved most or all symptoms in many of his patients for a number of days, or even a week or more. With repeated applications, the effects actually became stronger.

    The statement
    from the original post seems to imply that some anesthesiologists are able to use those sodium channel blockers that do absolutely no more than necessary, thereby avoiding negative reactions.

    Dr. Goldstein also tried IM injections of lidocaine; they had a slight positive effect, but it tended to disappear rather quickly. However, he reported no negative effects.

    For these reasons, I think that your negative reactions were due to the Bicillin, as you originally suspected.
     
    Last edited: Nov 28, 2014
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  11. maryb

    maryb iherb code TAK122

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    Ah well thanks, its back to the drawing board for me then:(
     
  12. kisekishiawase

    kisekishiawase sad

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  13. Gingergrrl

    Gingergrrl Senior Member

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    @kisekishiawase I got your PM but wanted to respond here since I saw that you also asked the question here and I am afraid that I do not know the answers! But I am very curious myself and wondering if @zzz or others have any info on this.

    In my case, I have auto-antibodies that attack the calcium channel (proven via blood test) so I was told not to have anesthesia that blocks the calcium channel. I am not having any anesthesia now so it is not an urgent issue in my case but it is something that I wonder about for the future.

    Does anyone know if there is a list of the different types of anesthesias and what they channels they block (sodium vs. calcium vs. something else?) Since I also have MCAS, this further complicates things in my case b/c I am not supposed to have lidocaine or any of the "caine" meds per the MCAS specialists (although the Masto Society says that some "caine" meds are tolerated better than others per their list of ER Room Protocols.)
     
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  14. kisekishiawase

    kisekishiawase sad

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    @Gingergrrl mcas, is it histamine issue with lidocaine? o_O
    I do read about histamine and lidocaine connection. Theres also a thread here while ago.

    This is hard because not only the nitrous oxide or epinephrine. If the numbing agent only could caused issue for some people.
     
  15. zzz

    zzz Senior Member

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    As there are now two threads addressing this issue, I will post here, where the original questions were asked, and tag and quote from the other thread as well so that everyone can still easily stay involved.
    As noted above, lidocaine is a sodium channel blocker. However, it can be used in several ways, and these differ in their risk for people with ME/CFS.

    The incidence of side effects of lidocaine with ME/CFS depends on whether it is given locally versus IV, and if given IV, what the rate of administration is. A person's individual situation also factors in here. Lidocaine is a member of the amide family of anesthetics; if people are allergic to any other members of this family, they can be assumed to be allergic to lidocaine as well.

    The warning against using sodium channel blockers as general anesthetics in people with ME/CFS definitely applies to lidocaine, as it is a nonspecific sodium channel blocker (meaning that it blocks all subtypes of the sodium channel). However, other uses of lidocaine do not carry this risk for most people, including most people with ME/CFS.

    For example, Dr. Goldstein has had great success treating people with ME/CFS and FM for both pain and general symptoms using IV lidocaine. However, whereas IV lidocaine used for general anesthesia is usually given at a dose of about 100 mg over five minutes (the dose varying by the patient's weight), Dr. Goldstein would infuse 200 to 300 mg over a period of two to three hours - an infusion that is slower by a factor of 24. Reducing the infusion rate by 96% like this allowed Dr. Goldstein to treat thousands of ME/CFS and FM patients with virtually no negative reactions. As Dr. Goldstein says on p. 385 of Tuning the Brain:
    So it appears that attenuating the infusion rate as Dr. Goldstein did removes all these risks. They may be present, though, in either general anesthesia or local anesthesia, though they do appear to be fairly rare. And as I mentioned above, lidocaine appears to be contraindicated for general anesthesia for people with ME/CFS due to the rapid infusion rate and its effect on blocking sodium channels. Local injection with lidocaine is generally much less risky, as the amount infused is much less.
    Based on reading the entire thread, the first example appears to be a very rare reaction. As for the second example, I think that the following quote from that thread sums up the most likely explanation:
    However, the overriding point here is that since lidocaine is a sodium channel blocker, it has the potential to cause various long-term problems for people with ME/CFS if it is used as a general anesthetic.
    I'm sorry to say that I don't know of any such list.
    As for lidocaine and mast cell degranulation:
    I encountered @aaron_c's reference a year ago, and it seemed to fit in well with Dr. Goldstein's description of how lidocaine decreases glutamate production, which can have a downstream effect of reducing mast cell degranulation. This would be particularly true in Dr. Goldstein's slow infusion lidocaine treatment.

    On the other hand, I have seen references to events where lidocaine used for local anesthesia triggered mast cell reactions. Once again, the speed of infusion seems to be critical here, as lidocaine used for local anesthesia is infused much faster than Dr. Goldstein's method, even though the area of application is much smaller.
    Once again, this comes down to how the lidocaine is administrated. All the histamine reactions I have read about have been in connection with local anesthesia. The sources that @aaron_c quote implies that this is not an issue for general anesthesia, and Dr. Goldstein definitely did not find it to be an issue using his protocol.
    I would agree with @Sushi that the amount of the dose plays a crucial role here.
    This is an excellent example of how Dr. Goldstein used lidocaine, though the mention of a possible heart attack implies that you may have been infused at a faster rate than Dr. Goldstein used.
     
    Last edited: May 4, 2016
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  16. kisekishiawase

    kisekishiawase sad

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    @zzz thank you for answering and the information:thumbsup::)

    Was the quote from the allnurses forum :confused:
    The post from medhelp there are 2 people who posted their dental procedure with lidocaine and got an atttack. (Heart rhytym issue)
    And 1 from iv.
    However, the last post. She changed with carbocaine and said she tolerate it better. (For dental)

    http://www.medhelp.org/posts/Heart-...V-dangers-with-heart-arrhythmias/show/1854652

     
  17. Gingergrrl

    Gingergrrl Senior Member

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    I answered this as best I could in another thread but now not sure where it is. Will try again but basically my MCAS doctor (and in a phone consult between Dr. Afrin last summer and my other doc) both said to avoid all of the family of "CAINE" meds b/c they can cause allergic reaction or mast cell degranulation. I really do not know any more than that.

    I misquoted the TMS list and Lidocaine is in the column of meds that are often tolerated. Last week I had a procedure to look at my tonsils and the doc was going to use a numbing spray with Tetracaine and this was on the side of the list of meds to avoid and I think I confused them in my mind. I am sorry for any confusion but that list is pretty solid IMO.

    I honestly do not know and have never used nitrous oxide in my life (but I do not do well with Epi) which I why I am trying to avoid ever having to use my EpiPen at all cost.

    @zzz, do you know why sodium channel blockers are bad for someone with ME/CFS? I apologize if you have explained this to me a million times! In my case b/c I have been told by more than one doc that I should not use any anesthesia that blocks the calcium channel b/c of my auto-antibody, I assume that a sodium blocker would still be preferable (in my case) or is this incorrect in your opinion?

    From the TMS list, I am not sure if this is always true since it has a column of CAINE meds to avoid and others that might be tolerated. I have not tried any since getting MCAS but was not allergic to any of them in my previous normal life.

    Hoping you can explain why (in super basic terms) b/c even though I am not 100% certain that ME/CFS is my diagnosis, I would be even more limited for anesthesia if I could not use calcium or sodium channel blockers.

    It has definitely happened to people but everyone is so different, it is hard to predict. With MCAS, really all bets are off! The OP has asked me about the histamine connection multiple times (two threads and several PM's) and I wish I knew more but unfortunately, I do not!
     
  18. Sushi

    Sushi Senior Member Albuquerque

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    There are many types of sodium channel blockers and not all are bad for people with ME/CFS. I take one myself.
     
  19. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and that is good to know. Do you think anesthesia that blocks it is different than a medication? I truly have no idea and in my case, am not supposed to block the calcium channel vs. the sodium channel but am trying to gather as much info as I can in case I should ever require any type of anesthesia.
     
  20. Sushi

    Sushi Senior Member Albuquerque

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    I don't know. The med I take is a "very potent sodium channel blocker," but I don't know how its action differs from an anaesthetic.
     

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