Having my first general anaesthetic tomorrow! :(

[zzz]

Was the quote from the allnurses forum

Yes.

The post from medhelp there are 2 people who posted their dental procedure with lidocaine and got an atttack. (Heart rhytym issue)

These certainly can happen, but they're rare. Lidocaine is the most widely used dental anesthetic, and is considered quite safe in this usage. However, people with heart issues or other health issues should obviously make their dentist or doctor aware of these issues before having lidocaine injected.

And 1 from iv.

Cardiac issues are more common when lidocaine is used intravenously. This is why cardiac monitoring is routine during IV administration of lidocaine for anesthetic purposes. It's important that people with cardiac issues discuss them with their doctor (hopefully a cardiologist) before the use of IV lidocaine.

@zzz, do you know why sodium channel blockers are bad for someone with ME/CFS?

I believe that originally, someone simply noticed that the anesthetics that caused the worst reactions in ME/CFS patients were sodium channel blockers. It was then hypothesized that people with ME/CFS may have a sodium channelopathy, as detailed in this PR paper. This is an excellent paper for learning about sodium channelopathies. Malfunctions of the calcium channel and other channels are also discussed here.

This paper discusses a wide range of potential problems with ion channels; for example, you may find the following particularly interesting:

Acetylcholine

Two reports suggest problems with receptors for acetylcholine in CFS. Increased autoantibodies against IgA muscarinic receptors could indicate reduced IgA muscarinic receptor levels (Tanka et. al. 2003). Fifty percent of CFS patients have antibodies to the acetylcholine muscarinic receptor (Bell and Vodjani 2005). These studies appear to suggest an autoimmune disruption rather than a channelopathy.

As for the existence of sodium channelopathies in people with ME/CFS, the following paragraph is the single most relevant part of the paper:

Ciguatoxin

Greatly increased levels of the ciguatoxin epitope, a marker of altered sodium channel activity, in most CFS patients provide the best evidence yet a (sodium) channelopathy occurs in CFS. Whether these findings reflect a chronic disease process or something more specific to CFS is unclear but research, thankfully, is underway to elucidate the intersection between CFS and ciguatera (Pearn 2001, Hokama et .al. 2002, 2003a/b).

As you intimated, these issues, and this paper in particular, have been discussed a number of times in these forums, and I have posted in many of these discussions.

As for why sodium channel blockers are bad for someone with ME/CFS, proper functioning of the sodium channel is necessary for all sorts of purposes, as the paper details, and with a sodium channelopathy, this channel is simply not working very well. This channel malfunction can result in many symptoms of ME/CFS through the malfunction of the nervous system. Sodium channel blockers normally temporarily disrupt the operation of the sodium channel, providing a temporary anesthetic effect. However, if the sodium channels are not working properly in the first place, other effects may occur as well; these typically manifest a general worsening of ME/CFS symptoms. (In some people who are in remission, a sodium channel blocker can trigger a relapse. I speak from an unfortunate experience here.) Furthermore, although the effects of sodium channel blockers are very temporary in healthy people, they can be quite long lasting in terms of their negative side effects in people with ME/CFS.

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?

Not knowing exactly how you react to sodium channel blockers or calcium channel blockers, it is impossible for me to say which one would be preferable. I personally think that your best bet by far would be to stay away from both types of drugs, if possible. In the end, you would need to discuss with your doctors if this is indeed possible, and if not, what they think the least risky alternative is. You may need to make them aware of the problems with sodium channel blockers in people with ME/CFS, as this is not widely known.

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.

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.

Not all of the CAINE meds are members of the amide family. For example, lidocaine is an amide, but tetracaine and procaine (Novocain) are esters. You can find a full list of these two families of local anesthetics here.

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).

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.

I answered part of this question earlier in this post. Additionally, it seems to me that there are three reasons why you would want to consider avoiding sodium channel blockers: 1) It appears to me that there is a good chance that you do in fact have ME/CFS, and with it, a sodium channelopathy. I obviously can't diagnose you, but if this opinion is correct, it would seem to me to be better to err on the side of caution and avoid sodium channel blockers and the possible exacerbation of your illness that they may cause. 2) Even if you don't have ME/CFS, it is still very possible that you have a sodium channelopathy, as you have many of the symptoms that such channelopathies can produce (such as muscle weakness). This leads to the same conclusion as in the first point. 3) Even if you don't have ME/CFS, and assuming that you also don't have a sodium channelopathy, sodium channel blockers could still cause problems in an indirect way. We know that you have serious problems with your calcium channels, and the functions of the sodium and calcium channels overlap to some extent. By blocking your sodium channels, even temporarily, you would be putting extra stress on your calcium channels, and this could lead to unknown additional problems. It's possible that it may not, but unless you know for sure that you do not have ME/CFS and that people with your symptom complex have no problems taking sodium channel blockers, it would seem the prudent thing to do to avoid them if at all possible.

Yes, this definitely limits your options in anesthesia; this is a problem that we all face to a greater or lesser degree. Sometimes, it's possible to have a procedure done under local anesthetic instead of general anesthetic; if this choice is available, it can remove many if not all of the potential problems. Otherwise, you just have to confer with your doctors as to which approach is the least risky.

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

In general, it's only the sodium channel blockers given by IV that you have to worry about, and I gather you're not talking about one of those. (Please correct me if I'm wrong.) For example, I have been given lidocaine for dental procedures a number of times during the years I have been fully disabled with ME/CFS, and the lidocaine never caused me the slightest problem.

 

[Sea]

@zzz the part of redrachel's post that you quoted is an error. (She commented later on that thread that she may have it the wrong way around). If you read the quote from ncf you will see it actually says avoid using anesthetics that USE the sodium channel, and also that some anethetists have had success using anesthetic that BLOCK the sodium channel.

There is proper research on this.
In summary if you have a major operation, tell the anaesthetist to use a anaesthetic that does not block the sodium channel channel.

http://www.ncf-net.org/patient-physician.htm#Anesthesia
"Anesthesia

Information about anesthesia

Anesthesia has adversely affected patients with CFIDS (also known as chronic fatigue syndrome and myalgic encephalomyelitis). The reason for this has been found. Recent research* funded by the National CFIDS Foundation, Inc. found that a substance, much like ciguatera toxin, is being produced in the body by a disease process in those with CFIDS/ME/CFS. Dubbed the “ciguatera epitope,” this research explains the danger of using any anesthesia that uses the sodium channel at the cellular level. Some anesthesiologists have had success blocking the sodium channel during anesthesia for CFIDS/ME/CFS patients.

*J Clin Lab Anal, 6/2003, Hokama et al

*J Toxicology, 12/2003, Hokama et al"


BTW I had EBV virus onset CFS too and have had 2 successful operations using this protocol.

 

[zzz]

@zzz the part of redrachel's post that you quoted is an error. (She commented later on that thread that she may have it the wrong way around). If you read the quote from ncf you will see it actually says avoid using anesthetics that USE the sodium channel, and also that some anethetists have had success using anesthetic that BLOCK the sodium channel.

This is completely true, and unfortunately it is the source of some confusion. The heart of the confusion stems from the following: What does it mean to "use" the sodium channel?

All anesthetics that use the sodium channel do so by blocking it. So "use" in this case means "block", which is somewhat counterintuitive, unless you know anesthesiology well enough to know that that's just how the sodium channel works. If a drug used the sodium channel more than it is normally used, then additional impulses would flow through the attached nerve, and the result would be the exact opposite of an anesthetic; neural activity would be increased. No anesthetic works like this; it can't, even in principle. That's why we can assume that the word "use" in this context is a synonym for "block".

What about the following statement?

Some anesthesiologists have had success blocking the sodium channel during anesthesia for CFIDS/ME/CFS patients.

This statement implies that although blocking the sodium channel usually causes problem in ME/CFS patients, some anesthesiologists have been able to block it without causing such problems. How? The article doesn't say. But we know from Dr. Goldstein's work that there is at least one method known to help reduce the side effects from drugs that block the sodium channel; this involves reducing the infusion rate of the drug. Whether this works for general anesthesia, and whether it is what the anesthesiologists in the above quote are doing, I don't know, but it is certainly a good example of how IV drugs that block the sodium channel can be used in people with ME/CFS without negative side effects. There may very well be other ways.

 

[Gingergrrl]

@zzz thanks for all the info and if I ever do need anesthesia, will have to meet with anesthesiologist in detail to discuss all the channelopathy and MCAS issues. Hoping that day never comes!

 

[Eeyore]

I was one of the patients (positive) in the Hokama ciguatera study, suggesting a sodium channelopathy. I'll give a bit more background on my experience with anaesthetics. Obviously, YMMV.

I have used lidocaine frequently in dental work and in other applications and never had any problem. I have also used lidocaine patches and gels/creams without any problem. I still use them. IV lidocaine in high doses is primarily used for cardiac arrhythmia (it's a class 1b antiarrhythmic). It was used frequently in low doses at a slow infusion rate by Dr. Jay Goldstein in neurosomatic patients, including ME patients with great success.

I have spoken with an absolutely brilliant doc who is an expert in MCAS, MCAD, and EDS (Ehlers-Danlos). I don't have these - but they're tied in somehow with ME. She has a lot of MCS (Multiple Chemical Sensitivity). She said that her patients with EDS are usually completely insensitive to any of the -caine anesthetics (not harmed, but they do not kill pain at all). In her MCAS/MCAD/MCS patients, she recommended lidocaine as being safe but stated that benzocaine (used in hurricaine spray) is likely to cause allergies, as is novacaine (many docs give lidocaine but call it novacaine nowadays - the latter is rarely used in clinical practice). Xylocaine is the same as lidocaine. She also told me that the problem many of her patients have is that the lidocaine is combined with epinephrine which is vasoconstrictive, thus prolonging the action of the drug. This causes allergic problems in some patients rather than lidocaine itself, which very rarely causes allergic reactions even in the neurosomatic crowd.

I have gotten injections of lidocaine combined with corticosteroids for orthopedic pain, and it works well and I've had no negative. side effects.

I had one brief procedure where I was under for about 30 mins once and the doctor gave me a combination of alfentanal (a short acting synthetic opioid for pain) and propofol (seems to modulate GABA-A receptors and block sodium channels). This was a very easy procedure for me. I woke up as they rolled the gurney out of the room and was fully conscious almost immediately (an advantage of propofol) - within a few minutes I got up, got dressed, felt fine, and went home (but didn't drive - they don't let you). So very rapid and easy recovery.

So, even though I was positive on the ciguatera testing with Dr. Hokama, I've reacted fine to sodium channel blockers (propofol, lidocaine), the latter on many occasions. The propofol could not have been easier really - you just wake up, feel great/clear headed, and are back to normal.

Interestingly, the pain relieving effects TCA's such as amitryptiline, nortriptyline, doxepin, and others are in part ascribed to their sodium channel blocking abilities, although they also amplify serotonergic and noradrenergic descending inhibitory pain pathways (like cymbalta). I don't do well with TCA's, even in low doses. I have yet to find one I can tolerate even in the lowest doses, but I don't know why. I can tolerate NRI's, most SSRI's, antihistamines, and many other related drugs w/o issues.

So I have not had bad experiences with anesthesia, although I think if you are MCAS/MCAD/MCS, you definitely want to avoid the use of benzocaine which is quite a bit more allergenic than lidocaine, and you may not want to combine with epinephrine. If these drugs don't work for you at all, then you probably have Ehlers-Danlos - it's virtually pathognomic for EDS.

 

[Sushi]

I've reacted fine to sodium channel blockers (propofol, lidocaine), the latter on many occasions.

That is my experience too. I have had both several times without problems.