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anaesthetic reaction

Messages
14
its taken me a long time to figure something out and i think i am finally close to it.
I dont know what area to post this - so posting in general

those of you with a viral origin.
do you have issues with anaesthetic?

does it affect you?
about 3 days after the anaesthetic, i come on with massiive headaches, huge light sensitivty - that makes me feel sick.
huge nausea - dry retching stuff and bed ridden for about 7 days.
i feel so bad i feel like i want to die, rather than endure it any longer

I once got it tested and it came back positive IgM for glandular fever.

 
Messages
14
PS it doesnt happen straight away - it starts about day 2 after i have had the anaesthetic
 

SOC

Senior Member
Messages
7,849
My illness started with a virus (as far as I know), and yes, I have trouble with general anaesthesia. Mine is not as bad the first day as in the following days, either. Maybe a cytokine thing?

My rxn is somewhat different from yours, although I do have massive headaches, some nausea, and feel awful. I also have bad muscle aches. For me, it was just like a bad ME/CFS crash -- and probably was. :) My ME/CFS specialist suggested that it might be a low blood volume thing. Even though we warned the anesthesiologist(s), they didn't take us seriously and probably didn't keep me correctly hydrated. Apparently that can cause all kinds of problems.

You might also think about anesthesia clearance. As I understand it, some people with ME/CFS have medication sensitivities because their bodies don't clear medications/toxins well.

The headaches, nausea, and feeling like death can be caused by low blood pressure which could be secondary to autonomic issues during surgery or continuance of anesthesia in your system longer than expected.
 
Messages
14
thank you SOC....
i get it with local and general anaesthetic...
so dentist visit and surgery

no-one believes me.

i am wondering if it is dangerous?
Yes I could liken it to a bad ME/CFS crash...

I read about it causing a problem for some people, but never hear about any stories and what people have done to help
 

PNR2008

Senior Member
Messages
613
Location
OH USA
I haven't had major surgery in a very long time but I felt better than ever after two colonoscopy's which I attribute to pain-free living for at least an hour after the procedures. It makes me think of how much living with constant pain is using energy and making me sicker.
 
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14
so.... after reading this - potentially - possibly it could be viral Hepatitis that is am presenting????

subclinically???
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I havent had a general anesthetic since Ive had this illness but I got a SEVERE reaction from a local one the dentists use. Lidocaine http://en.wikipedia.org/wiki/Lidocaine.. I'd been given the it with the adrenaline added into it as it is often done (one can request this without the adrenaline).

I only found out after my bad reaction that its advised for ME people not to have anesthetics with adrenaline in them like this one. The reaction it gave me was intense pain in the area in which I'd been injected (roof of mouth) for several days (like as if someone was drilling me) and it also affected me majorly in a neurological way... I went into severe jerking, was left unable to walk, tremoring and almost had a full seizure cause of that dentist injection. I couldnt leave the dentist for almost an hour after the procedure as I couldnt walk on my legs (We almost rang an ambulance.. something I really hate to do)..

(I'd had my wisdom teeth taken out during the procedure but the big gaping holes in my mouth were nothing compared to the pain from where this anesthetic had been injected. I'll rate getting my wisdom teeth out and the huge holes left as 2/10 for pain but the injection site an 8/10 with pain). I think it would kill me if a doctor gave me this to "numb" a bigger area.. ironic when a numbing drug causes almost unbearable pain.

Wikipedia says of side effects for this anesthetic are rare but also does say "Systemic exposure to excessive quantities of lidocaine mainly result in central nervous system (CNS) and cardiovascular effects – CNS effects usually occur at lower blood plasma concentrations and additional cardiovascular effects present at higher concentrations, though cardiovascular collapse may also occur with low concentrations. CNS effects may include CNS excitation (nervousness, tingling around the mouth (also known as circumoral paraesthesia), tinnitus, tremor, dizziness, blurred vision, seizures)"

So it seems as if my body (which also has MCS) reacted to it very unusually with it in a dental injection getting the same kind of affects as if one who had a systemic overdose of it. If yo have ME pay heed on the warnings put out by ME specialists on what ones to avoid, its not nice finding out this the hard way.


My ME started out with viral symptoms and what appears to be a reincurring virus which happened over and over..
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
thank you SOC....
i get it with local and general anaesthetic...
so dentist visit and surgery

no-one believes me.

i am wondering if it is dangerous?
Yes I could liken it to a bad ME/CFS crash...

I read about it causing a problem for some people, but never hear about any stories and what people have done to help

There are ME cases who have reacted to general anesthetic while having minor surgery and died
 

caledonia

Senior Member
My mom, brother, and I can all trace the beginnings of our ME/CFS to general anesthesia. None of us seem to have a viral origin.

It really doesn't matter what the origin is - anesthesia is a toxin and surgery is a stressor. Any kind of toxin/stressor which is more than your body can handle will impact methylation, which will have wide ranging effects. Those of us with methylation mutations have less capacity than those with normal mutations, so we're the ones to get sick first.

If you need anesthesia, follow the Mass CFIDs letter (the link that Cath S posted).

I don't get epinephrine in my local dental anesthesia. I'm already on the anxious side, and it would just send me through the roof. The epinephrine is used to extend the length of the anesthesia. So if you leave it out, it may wear off in the middle of the procedure and you may need another shot. The nice thing is though, you don't have to walk around with a numb face, drooling on yourself for the rest of the day. :)
 

SOC

Senior Member
Messages
7,849
Isn't nitrous oxide a potent vasodilator? That could be nasty for some people with ME/CFS.
 

Hip

Senior Member
Messages
17,824
cath s

This study says that "Anaesthetics have been suspected of impairing various functions of the immune system either directly, by disturbing the functions of immune-competent cells, or indirectly by modulating the stress response."

So perhaps your symptoms might be due to viral reactivations resulting from a temporarily weakened immune system?

The symptoms of chronic Epstein-Barr virus infection include light sensitivity and headaches.

You might want to try taking an antiviral like Valtrex (valacyclovir) a few days before and a few days after having an anaesthetic.

The following supplements also have an anti-EBV effect: turmeric, passionflower, sesame seed oil, lysine, ginger, licorice, curcumin, EGCG (from green tea), red marine algae, cayaponia tayuya root, pau d’arco herb, beetroot extract (Beta vulgaris), olive leaf extract, lemon balm (Melissa officinalis), citrus flavonoids, andrographis paniculata.
 
Messages
759
Location
Israel
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.
That's it.
I am very angry that ME groups do not publicise this research, particularly "Invest in ME" who were very rude to me last time I wrote to them.

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.
 

Hip

Senior Member
Messages
17,824
That is extremely interesting, redrachel76.

Amazing that this information does not seem to be publicized much. I was not aware that anesthetics that the block the sodium channels can cause problems in ME/CFS patients.

I have not myself had any problems with local anesthetic injections given during dental visits (but then again, I don't know what type of anesthetic my dentist uses). But certainly this information is useful to know. Thanks for posting it.

There is an article on Phoenix Rising about channelopathies (ion channel dysfunctions) in ME/CFS: A Neurological Channelopathy in Chronic Fatigue Syndrome (ME/CFS)?
 
Messages
759
Location
Israel
I am a bit scared that I got it wrong. :oops: I can not remember whether the advice is to make sure to use an anaesthetic that does not use the sodium channel or an anaesthetic that does not block the sodium channel.

I can't remember and I am too knackered to check it. Anyone who has surgery scheduled or even if they just want to be prepared in case can just send a quick email to the CFIDS Foundation webpage and they will send an email back to say what to tell the anaesthetist. The president of the organisation (who also has ME) told me that she had a horrific reaction to an anaesthetic herself once, before they discovered the stuff about the sodium channel. I feel I can trust them on this issue.

Before my operations I just looked them up and did what they said on anaesthesia and the operations were a success.

Also to Hip:
Dr Patrick Class that you quoted has different opinions on anaesthesia and ME.
Dr Cheney and Lapp have different opinions on it too. (see last post for Cheney's opinion) http://forums.prohealth.com/forums/index.php?threads/general-anaesthetic.78211/
The important thing is they all agree that there is a problem with anaesthesia and ME.

But I trust the CFIDS Foundation anaesthesia advice the most because it is based on research and It worked for me.
The other suggestions are hunches from patient experience which are sometimes worthwhile, but I personally felt more confident with actual research.
 

Hip

Senior Member
Messages
17,824
redrachel76

I did not realize that there were different opinions regarding which anesthetic agents should be used for ME/CFS patients. I thought Dr Patrick Class's opinion was also to avoid sodium channel-blocking anesthetic agents, but in fact it is not: I just checked now, and the agents Dr Class suggests (see this page), namely Diprivan (propofol) and Versed (midazolam), both block sodium channels, and so these two anesthetic agents would definitely not be recommended by the CFIDS Foundation's advice on anaesthesia.

So I have decided to delete Dr Patrick Class suggestions in my above post, to avoid any confusion. Good thing you pointed this out.
 
Messages
14
I am sorry - have been away on holiday...
And I come back to all this lovely input from you all.

thank you so much for your input
:)