An awful time at the dental hospital

[justy]

My NHS dentist was happy to use an adrenaline free one - although like Gingergrrl I never got to try it as I now have MCAS and have been attempting to have fillings with no anaesthesia.

 

[mermaid]

I have had fillings done by an NHS dentist and there was no problem when I requested adrenaline free injections. I don't think it's unusual to ask for it, for whatever reason.

Things didn't go so smoothly when I tried to have an extraction done with the adrenaline free though sadly. It was a different NHS dentist who was happy to use adrenaline free, but I could feel rather too much pain as he pulled, and in the end I agreed to the usual injection on top. Within seconds my legs started shaking violently and I burst into tears. He sent me out to calm down, and thankfully got it out in the end, but it was a bit traumatic.

 

[Gingergrrl]

My NHS dentist was happy to use an adrenaline free one - although like Gingergrrl I never got to try it as I now have MCAS and have been attempting to have fillings with no anaesthesia.

@justy at the risk of not taking this off topic, we are both in such a weird position with MCAS in that we cannot even tolerate Epi at the dentist (or possibly even the dyes in the dentist's toothpaste) yet in a true emergency stage 3 or 4 anaphylaxis, we would have to use an EpiPen. This is one of my greatest fears that I have yet to find an answer to. If you find one, please let me know!!!

 

[Gingergrrl]

I also know how to make the reaction go away: IV beta blockers.

@valentinelynx I thought Epi and beta blockers do not mix? Or is it different in dental work?

 

[taniaaust1]

@justy at the risk of not taking this off topic, we are both in such a weird position with MCAS in that we cannot even tolerate Epi at the dentist (or possibly even the dyes in the dentist's toothpaste) yet in a true emergency stage 3 or 4 anaphylaxis, we would have to use an EpiPen. This is one of my greatest fears that I have yet to find an answer to. If you find one, please let me know!!!

Hi I have an Epi pen too (since getting a severe food reaction) but cant at all tolerate the adrenaline in the dentist injection to the point that they were starting to talk of ringing an ambulance.

I voiced my Epi pen concern to my allergist and he said that as one only would use the epi-pen in a life threatening situation eg I'm to use if I go into breathing issues with an allergic reaction etc, that using it overrides any danger of the effects I may get from it.

I honestly believe if I have to use the epi pen, that itself could kill me.

 

[Gingergrrl]

I honestly believe if I have to use the epi pen, that itself could kill me.

Tania, I have the exact same fear and it is the reason that I follow such an incredibly strict diet and medication plan for MCAS and often only eat once per day. I have not been to the dentist since this started for me back in April and do not plan to go any time soon!

 

[valentinelynx]

@valentinelynx I thought Epi and beta blockers do not mix? Or is it different in dental work?

You are talking about the theoretical unopposed alpha action caused by epi in the context of beta blockade. My first answer to that is, yes, you shouldn't try this at home.

I should have been more specific. I actually (in the case I am thinking of) either used labetalol, which is a dual alpha and beta blocker, or esmolol, which is a pure Beta 1 agonist (this leaving the vascular and cardiac relaxing effects of the beta 2 stimulation by epinephrine intact. The problem with combining epi and pure beta blockers or mixed beta1 and beta 2 blockers (propanolol and timolol are examples) is that you can get a condition of "unopposed alpha stimulation" which can theoretically increase blood pressure.

This same issue applies to chest pain caused by cocaine. The lore has been that beta blockers can worsen the issue. However, clinically things are not always so simple. See for instance this:

Should Beta-Blockers Be Used In The Setting Of Cocaine-Related Chest Pain? (http://www.clinicalcorrelations.org/?p=7328)

Thus, I would not necessarily withhold a beta blocker if it seemed clinically indicated in someone with an excess of epinephrine on board.. but before administering it, I would make sure I have the tools to counteract any adverse effects. For example, if the blood pressure rises after giving the beta blocker, have medication at hand to lower it (quickly). Anesthesiologists tend to have lot more tools at hand to manipulate vitals than most practitioners. Patients's physiology doesn't always read the textbooks, so you have to be ready for anything.

Did that muddy the issue enough for you? :thumbdown:

 

[Gingergrrl]

@valentinelynx Thank you for your reply and I have some follow-up questions that I hope can be helpful to others as I know there are many on PR who take beta blockers for tachycardia, OI and/or POTS who also go to the dentist.

I have been taking Atenolol for tachy/POTS since 2013 and it worked well but in beginning of 2015 developed MCAS. Although I was hospitalized and it was very severe, I have never (Thank God) needed to use the EpiPen. My understanding is that a BB like Atenolol (or others) could make the Epi not work during anaphylaxis and that it can degranulate mast cells in general.

My MCAS doc (who is very good IMO) insists that I stay on the BB and seems to have a different philosophy. I have also tried to clarify with him which anesthetics (minus the Epi) are the safest at the dentist for someone with MCAS as I have heard not to use lidocaine or any of the "caine" meds but different docs seem to disagree on this point, too.

I assume there are dental meds that are better for ME/CFS patients as well (although it might still differ in MCAS patients) and many people have both illnesses.

Do you have any further thoughts on this? I know you are a doctor, not dentist, but you have a lot more knowledge on it than I do! Thank you again so much.

 

[valentinelynx]

@valentinelynx Thank you for your reply and I have some follow-up questions that I hope can be helpful to others as I know there are many on PR who take beta blockers for tachycardia, OI and/or POTS who also go to the dentist.

I have been taking Atenolol for tachy/POTS since 2013 and it worked well but in beginning of 2015 developed MCAS. Although I was hospitalized and it was very severe, I have never (Thank God) needed to use the EpiPen. My understanding is that a BB like Atenolol (or others) could make the Epi not work during anaphylaxis and that it can degranulate mast cells in general.

My MCAS doc (who is very good IMO) insists that I stay on the BB and seems to have a different philosophy. I have also tried to clarify with him which anesthetics (minus the Epi) are the safest at the dentist for someone with MCAS as I have heard not to use lidocaine or any of the "caine" meds but different docs seem to disagree on this point, too.

I assume there are dental meds that are better for ME/CFS patients as well (although it might still differ in MCAS patients) and many people have both illnesses.

Do you have any further thoughts on this? I know you are a doctor, not dentist, but you have a lot more knowledge on it than I do! Thank you again so much.

Gingergrrl, I don't have much experience with MCAS, although my doctor (just started seeing Dr Kaufman at OMI ) thinks I may have it.

Not having any personal or professional experience to help you, I did a quick literature search. There is no consensus, as you have already determined. A number of studies have shown that local anesthetics, lidocaine in particular, can antagonize histamine, or prevent its release. On the other hand, there are apparently case reports of individual patients having histamine-related complications with local anesthetics. It may be that these reactions are more likely if the local anesthetic is not preservative free. The issue is complicated, also, by the fact that the stress of surgery and irritation of tissues itself is likely to provoke histamine release.

My thoughts would be that the safest approach might be to use lidocaine without epinephrine, but be sure that the lidocaine is preservative free. Maybe doing a test dose ahead of time (a small injection of the local anesthetic) and observing for any reaction might help.

If local anesthetics were a major problem in mastocytosis (patients with very severe histamine reactions, of which MCAS is something like a lesser version) then it would be well known in the anesthetic literature, and there is no such information.

I found this guide (from the UK) that might be helpful (hooray, I figured out how to attach a link! ), and I quote part of it:

"Local anaesthetics

There is no evidence that local anaesthetics of the common amide type should be avoided (lidocaine, bupivacaine, levobupivacaine, ropivacaine, prilocaine) Amethocaine, an ester local anaesthetic found in Ametop local anaesthetic cream, should probably be avoided because it is known to cause localised skin reactions in some patients. EMLA cream (contains lidocaine and prilocaine) is a suitable alternative. There is no reason to avoid epidural or spinal anaesthesia, or local anaesthetic nerve blocks."

From:
https://www.rcoa.ac.uk/system/files/MASTOCYTOSIS-2014_0.pdf

Please discuss with your doctors and dentists, as I can't give real advice as I am not your physician.

Hope that helps. Good luck!

 

[Gingergrrl]

@valentinelynx Thanks for the info and it's fascinating that the British guide completely contradicts everything I have read from the US Masto Society Emergency Room and surgery protocols (tmsforacure.org) but I don't want to divert this thread any further than I already have!

 

[valentinelynx]

@valentinelynx Thanks for the info and it's fascinating that the British guide completely contradicts everything I have read from the US Masto Society Emergency Room and surgery protocols (tmsforacure.org) but I don't want to divert this thread any further than I already have!

Just looked at the guide you mention quickly, and it agrees that most commonly used local anesthetics are "typically tolerated", e.g.
Bupivacaine Lidocaine Mepicacaine Prilocaine Levobupivacaine Ropivacaine

Don't have time/energy for a head to head comparison of the two guides, but I would find that agreement somewhat reassuring.

 

[Gingergrrl]

Just looked at the guide you mention quickly, and it agrees that most commonly used local anesthetics are "typically tolerated", e.g.
Bupivacaine Lidocaine Mepicacaine Prilocaine Levobupivacaine Ropivacaine

Don't have time/energy for a head to head comparison of the two guides, but I would find that agreement somewhat reassuring.

@valentinelynx Wow, thanks for taking the time to compare the two and it is re-assuring. When I said they were different, I meant re: their overall protocols for surgery versus the "caine" meds per se. I have had two doctors say to avoid the "caine" meds and another say that certain ones were better than others but he was not sure of the names so I was left with a lot of confusion! Thank you again.

 

[bertiedog]

Around 1978 before full blown ME/CFS I had vertigo, panic plus shaking and actually went blind for a about 15 minutes after a normal dental anaesthetic. It was a horrendous experience that caused a dental phobia which I have to get over every time I visit the dentist.

The NHS dentist at the time was a nice guy but ignorant because he told me that mercury would never be a problem but that the adrenaline in the injection was and I should never have this again. (He was very wrong about the mercury thing because in 2002 when tested for mercury my lymphocytes strongly reacted above a normal level and also a hair analysis showed well above a normal range). Eventually I left this dentist because he hadn't taken the mercury thing seriously and I was satisfied it wasn't a healthy thing to have around my immune system and had all my fillings removed and safely chelated the mercury which took 5 years to get to a normal level.

I don't know how many times I say to my current dentist, it is a plain injection you are going to give me? We both laugh about it because he knows how stressed I am before any injection but he is a lovely man and doesn't mind. Actually I have quite severe dental pain that started yesterday so I am going to have to do my usual thing to be able to endure probably a root treatment which is my worst nightmare!

Pam

 

[Mel9]

My full reaction to adrenaline takes a few hours. Its a delayed response, which is why so many dentists do not see it, and so many patients probably have not figured out what caused it.

The same thing happened to me today after going to the dentist. Really scary

 

[leela]

In my experience no explanation at all of what condition I have is necessary to request and receive novocaine without epi.
I just ask for it as if I were ordering a sandwich without mayo, and thus far have been met with unquestioned, cheerful consent.
No one has ever asked me why I want that or challenged me about it. If they did, I would not continue treatment with that practitioner.

I pretty much don't ever use the words ME/CFS with anyone, ever. It is usually best in my experience, if pressed, to simply state that I have an adverse reaction
to that substance. Some might ask what the symptoms of that adverse reaction are, but usually not; most practitioners wish to avoid something going awry (and liability for it.) My personal symptoms from epi (in case its helpful for you to know) are severe shivering and shaking, and tachycardia.

It is usually not fruitful to try to "educate" a health care practitioner about ME, especially straight out of the gate. It can be perceived as a challenge and put them on the defensive/offensive. This is not to say you were wrong to try; just offering you the fruit of my own experience after a dozen years of this wicked disease.

 

[Sushi]

In my experience no explanation at all of what condition I have is necessary to request and receive novocaine without epi.
I just ask for it as if I were ordering a sandwich without mayo, and thus far have been met with unquestioned, cheerful consent.

Me too! I just say I don't tolerate epi and docs, dentists etc. say something like, "Well, we don't want to give you a reaction--I'll give you something without epi." No one has ever ask why and that has included dentists, dermatolotists, optometrists and MD's.

 

[Jeckylberry]

I inquired about this at my recent check up and they were well aware of the problem some people have to it. I'm just a patient in a suburban, nothing fancy, clinic. Just proves what a twat that dentist you saw was!

 

[Colourful Sevens]

Just a quick update on this. I went ahead and had the cavity filled without any injection and things went quite comfortably. The day after, I came across this document which I think we should show to dentists in the future.

http://www.thegracecharityforme.org/UserFiles/File/Dental_Leaflet .pdf