An awful time at the dental hospital

[Colourful Sevens]

The following is a description of events that took place this afternoon when I went to the dentist, including some description of ME/CFS (I took it from my Twitter, so I had to produce some background info for them). This is very long so I understand if you don't read it all the way down. For those of you well versed in ME/CFS - which I'm sure is most of us - then please skip ahead to the 4th paragraph.

"oh my god. when I get back home I'm going to carry this thread on and basically explain how I've just had the worst dentist experience of my life. I'm not even in pain & I didn't even lie down in the chair. Just got talked down to and left feeling completely disheartened. i'm upset to be honest.

to cut to the chase, i suffer from myalgic encephalomyelitis, which is commonly known as either chronic fatigue syndrome or just "ME/CFS". symptoms typically affect the immune & nervous systems, as well as affecting muscle capabilities & cognitive functions (i.e. the brain). i get exhausted easily, my blood pressure drops if i stand up for too long (say, 20 mins), i muddle my words up sometimes. that sort of stuff.

but on top of that, trivial things like going to the dentist can be unpredictable because of how compromised my immune system really is. you see, when ME/CFS symptoms flare up they can cause "crashes" that are similar to hypo reactions (anyone who has diabetes will know). i can end up vomiting for hours, unable to move my limbs & feeling like i've been hit by a car. thankfully that's not happened for a while.

but going to the dentist & having the standard numbing injections can cause a "crash" because of the adrenaline found in them. this is based almost entirely on anecdotal evidence since there is very little research/funding into the nuanced effects of ME/CFS. but they've essentially managed to work out that the nervous system affected by ME/CFS struggles to filter the adrenaline in the blood. this means that, if i'm injected with adrenaline numbing, my body could be tricked into thinking i'm running/playing football/being active. this is likely to cause a "crash" or a worsening of my symptoms, and many ME/CFS sufferers have reported similar experiences over the years.

so last month i was told i need a filling that would therefore require an injection - alarm bells immediately went off in my head: "oops". i pleaded with my dentist not to do it because of the reasons i've stated above, so she said "okay buddy, i'll write some stuff down for you". she referred me to the university of manchester dental hospital - which is where i've been today: "specialists are there, they'll help," she said.

so off i go, about 2:15pm today, to the dentist to see Dr A Al-Khayatt. immediately something seems off when he asks me to sit down. it turned out that, contrary to what i thought, i'd been sent for a second opinion rather than specialist treatment. he asked me why i'd come. i said "well, my dentist said you had adrenaline-free numbing here and that you'd help me? other than that i'm not really sure."

Dr A: "why do you need adrenaline-free numbing? why not just the normal one?"
Me: "well, i have ME/CFS and i could react badly to it."
Dr A: "is there any scientific evidence for this?"
Me: "well, not really, no, because there's been no research into it."
Dr A, voice raised slightly: "so you want me to treat you based on anecdotal evidence?"
Me: "no, i'd just like to--" he cut me off.
Dr A: "I can only go off scientific fact. wouldn't you rather i treated you with something based on scientific evidence?"
Me: "but that's my point, there's been no research because there's no funding. i'd rather you trusted people like me who have ME/CFS"
Dr A: "Nobody is forcing you to have the injection, it would just be a lot worse without it"
Me: "but i think that is what i want to do"
Dr A, voice raised: "i treat patients with all sorts of illnesses, including ME/CFS, and i've never seen anyone have a bad reaction to adrenaline."
Me: "but it happens after the treatm---" he cuts me off again.
Dr A: "but there's no scientific fact, i can only go off scientific fact. your dentist has sent you here because he--"
Me: "She"
Dr A: "he's not sent you here for treatment, he can get the adrenaline-free one by ordering it".

after that Dr A carried on saying things like "scientific basis" and even asked me if i'd "been tested" for a reaction to adrenaline. but i'd rather not be flat on my back for five days just to prove something that's already entirely possible. i can't afford to do that. so he said "get your physician to write to me, saying what you've said, and only then will i go forward with the treatment." so essentially he told me that he doesn't trust people with ME/CFS, he just trusts who the words come from. he made me feel terrible.

he was really aggressive & patronising, misgendered my dentist even after i'd corrected him, and used his position to elevate his opinion: "in the end, i know scientific fact because i'm a dentist and you don't" was his overriding argument throughout the entire ordeal. i walked out with my head down - i'm devastated that someone in such a high profile position is so ignorant.

he even asked me about dental work i'd had done 10 years ago in order to make it seem like i'd always been fine with adrenaline numbing, but i've only had ME/CFS for 18 months. he should know that, right? he has my medical records & easy access to them, right? never have i felt so put down by anybody. he really, really got me. just defeated.

at one point i stood up to read notes from my dentist that he had on his desk and he told me to "sit back down" so that he could carry on talking down *at* me. essentially all i know is that i should speak to my "ME/CFS physician" which is a position i've never come across. i have physiotherapy once every 3 months and i know a couple of support group leaders. are any of those people "physicians"?

i just left on the verge of tears. i felt awful, completely isolated and alone with my condition while a clever man spoke down to me. and Dr A, with his vile opinions, could have potentially put his fingers in my mouth. ew.

 

[TiredSam]

Change your dentist and forget all about him. Keep changing your dentists until you find a good one, don't waste any time or energy on the ones you choose to discard for their arrogant incompetence. You're the customer, you're the expert on your condition. He's an ass who doesn't deserve your custom. That's how I approached finding a GP, and got lucky second time.

 

[Aurator]

You should complain about both dentists' handling of the matter. You have a right to an explanation as to why the first dentist referred you to this second dentist when you had specifically asked the first dentist for adrenaline-free anaesthestic (which it seems she could have ordered in for you and administered anyway) and had been led to believe by this dentist that your referral to the second dentist was specifically so that the adrenaline-free anaesthetic could be administered to you.

I would send written complaints to both practices concerning the dentists in question. "You have the right to complain, have your complaint investigated, and be given a full and prompt reply".

This sort of experience strikes at the heart of all PwME. To discourage such treatment from recurring we need to show we won't tolerate it in silence.

 

[Old Bones]

I, too, can report a bad dental experience involving anaesthetic that contains epinephrine. Dentists like using this product because it lasts longer. This saves them time and money, as there is less likelihood they will have to stop a procedure, especially a lengthy one, to inject more "numbing". In my situation, a new dentist injected me with enough epinephrine-containing anaesthetic to last an entire day -- long enough to do a complete crown, from preparation, to manufacture, to install. Immediately upon injection, I experienced such a severe panic attack, it took all my will to keep from ripping the dental dam and equipment out of my mouth, and running out of the office never to return. Seriously, my response would not have been any worse had the dentist been holding my head under water in an attempt to drown me.

He denied the anaesthetic was the problem. But I know it was, since I am not an anxious person, and had never had a panic attack before. I have since changed dentists, twice, and both have been agreeable to using anaesthetic without epinephrine. Although I haven't referred to my illness as ME (it's best not to, I've found), these caring dentists accommodated my request without question -- even had it recorded on my file, and asked me to make sure I reminded them before every procedure, just in case. It took years for me to stop feeling panicky at the dentist after this experience, so I can certainly understand your being on the "verge of tears".

 

[maryb]

@Old Bones
good advice, I've never had a problem with asking dentist for the adrenaline free numbing injection, I go to a dentist in Huddersfield, but have been to others who were agreeable. @Colourful Sevens - you need to change your dentist, ask the receptionist which drugs they use/are available before joining the practice. There was a list of drugs suitable for PWME/CFS for dental and other anaesthetic procedures on PR but not sure where you'll find it now.

 

[Undisclosed]

I, too, can report a bad dental experience involving anaesthetic that contains epinephrine. Dentists like using this product because it lasts longer. This saves them time and money, as there is less likelihood they will have to stop a procedure, especially a lengthy one, to inject more "numbing". In my situation, a new dentist injected me with enough epinephrine-containing anaesthetic to last an entire day -- long enough to do a complete crown, from preparation, to manufacture, to install. Immediately upon injection, I experienced such a severe panic attack, it took all my will to keep from ripping the dental dam and equipment out of my mouth, and running out of the office never to return. Seriously, my response would not have been any worse had the dentist been holding my head under water in an attempt to drown me.

He denied the anaesthetic was the problem. But I know it was, since I am not an anxious person, and had never had a panic attack before. I have since changed dentists, twice, and both have been agreeable to using anaesthetic without epinephrine. Although I haven't referred to my illness as ME (it's best not to, I've found), these caring dentists accommodated my request without question -- even had it recorded on my file, and asked me to make sure I reminded them before every procedure, just in case. It took years for me to stop feeling panicky at the dentist after this experience, so I can certainly understand your being on the "verge of tears".

I had the panic attack happen the last time I had a filling replaced. This was the first time I had dental anesthetic since becoming ill in 1997. My heart rate soared, I started sweating heavily, and felt a huge amount of panic. I told my dentist immediately and she was aware that this reaction can occur in dental patients. She said for my next filling/procedure she would use a non-ephinephrine based anaesthetic -- can't remember the name -- she said it wasn't as potent.

What kind of dentist isn't aware of the side-effects of the anaesthetic they use on a daily basis? -- a really bad one!!!!!

 

[Gingergrrl]

Change dentists, period. I had a horrible reaction to adrenaline at the dentist many years ago when I was totally healthy and it is now listed in my chart, no questions asked, that I no longer receive adrenaline.

I cannot go to the dentist now b/c I am allergic to everything due to MCAS and would react even to the dye in the toothpaste they use but that is another issue. If the dentist did that to me, I would have gotten up and left and I literally have zero tolerance for that kind of nonsense anymore.

 

[Jeckylberry]

It's disgusting how this prawn thinks he can use science like a weapon against you. It's not even about science! you are allowed to be cautious about a potential threat to your health! You are allowed to ask for an alternative. People have all sorts of 'irrational' aversions to treatments that have a lot less anecdotal evidence. If it was of a religious origin he'd not want to comment but because it's ME, well that's fair game because everyone's allowed to have a say about that.

The sooner the patient becomes the customer, the better. Medicos get treated like royalty and it goes to their heads. This offensive behaviour is just supercilious posturing and is aimed at squashing confidence in your knowledge in favour of his knowledge.

It'd be nice to think you'd stand up and say "how dare you speak to me in that tone you sanctimonious prannet! How would you, a dentist, know anything substantial about ME and it's complications? Have you done a PhD in anaesthetic reactions in ME patients? Have you ever read a paper regarding it? All the "scientific evidence" you are giving me is from the few people you have filled teeth for! Do you know ALL the people with ME in the state and followed up on them afterwards? Because having a large cohort to compare with a control group would perhaps satisfy me that you have some sort of scientific evidence. If no tests have ever been conducted to the contrary, lack of evidence does not mean lack of existence! Get some Actual knowledge in the safety of anaesthetics on patients with ME and then come back and lecture me. Until then I reserve the right to be cautious." However, alas, there is never the presence of mind at those times. The humiliating words, the lack of total self assurance in the face of opposition and in a new place full of unknowns, it's not surprising that you didn't no matter how it rankled. The important thing is that although you felt like a reprimanded minion, you still left without the unpleasant experience of his fingers in your mouth. Doesn't matter how it looked. It's what you did. You didn't give in to his bullying. You kept your integrity.

I wonder if your dentist meant that to happen. Often they don't realise their good intentions get hijacked. She may not have known about the paperwork and just thought she would send you somewhere they were likely to have all the gear. The idea about a second opinion may have been the conceit of the second dentist who just wanted to get off on belittling someone. If you like her ask her if she actually sent you for 'a second opinion'. She might be horrified and make the complaint herself. Or else she's a backstabbing cow. Let us know what happens.

 

[Sidereal]

Adrenaline/epinephrine is a known inducer of panic attacks, virtually everyone working in medicine knows this. There is something seriously wrong with the sympathetic nervous system in ME/CFS obviously. This dentist sounds like an ignorant incompetent pig. Find a better dentist.

 

[Valentijn]

I don't think I've ever seen a direct account from an ME patient where epinephrine/adrenaline didn't cause a horrible reaction.

Yes, it's just anecdotal evidence, but in the absences of scientific research it's still a helluva lot better than "trust the patronizing asshole."

 

[Snow Leopard]

Novocaine is known to cause side effects in some patients. It's as if he latched on to the ME/CFS and decided to 'educate' you (eg not listen) because of the stigma. Awful!

If you said you were a hypertensive patient, he would have no choice but to listen.
http://www.ncbi.nlm.nih.gov/books/NBK11858/

 

[TiredSam]

I don't think I've ever seen a direct account from an ME patient where epinephrine/adrenaline didn't cause a horrible reaction.

I had an injection the last time I went to the dentist a couple of months ago. I don't know what was in it, but I had no negative reaction.

If you said you were a hypertensive patient, he would have no choice but to listen.

I wouldn't even have mentioned ME/CFS, just said I react badly to X, and leave it at that. If I ever have to go into hospital or need medical attention I won't mention ME/CFS, and I've asked my wife not to mention it either, as it can only result in a worse quality of care. In fact I don't even have ME/CFS, I have a suspected Imundefekt, or a suspected neuro-immune disease that is being investigated. I just don't need the baggage that the name ME/CFS comes with, so as long as I can I'll call it something else, ie what it really is, a neuro-immune disease. Any further questions phone my immunologist, I'm too thick to remember all those long words. In the meantime I'm the customer so do it my way or I'll go somewhere else thanks.

 

[Sidereal]

I wouldn't even have mentioned ME/CFS, just said I react badly to X, and leave it at that.

I agree, never mention ME/CFS if at all possible, it just gives the doctor an opening to try and mansplain to you how it's all in your head and it couldn't possibly cause drug reactions. When they suggest something I know would be terrible for me I usually just lie and say I had an allergic reaction to it years ago.

 

[TiredSam]

to try and mansplain to you

Never heard the word mansplain before! Anyone tries mansplaining at me I just mansplain right back at them .

 

[alex3619]

Its also the case there is NO scientific evidence that injections formulated with adrenaline are safe in ME/CFS. Its only anecdotal, which he alluded to. If anyone disputes this ask them which study on ME/CFS patients showed that adrenaline formulated anaesthetics do not provoke a delayed reaction in ME/CFS. Then ask, to drive the point home, if it was a double blinded placebo controlled randomized trial. Evidence based junkies will hate you for it, but its using their own mantra against them.

If you said you were a hypertensive patient, he would have no choice but to listen.

Not even then . You see (I quote from memory) "when we inject adrenaline into the gums almost none of it gets into the blood stream, its cardiologists and other specialists who do not understand this".


I react badly to adrenaline. Dentists here don't get it either. However my current dentist was willing to do it.

 

[digital dog]

Complain in writing.
He's an ignorant bully.
Get another dentist...a holistic one perhaps.

 

[valentinelynx]

Its also the case there is NO scientific evidence that injections formulated with adrenaline are safe in ME/CFS. Its only anecdotal, which he alluded to. If anyone disputes this ask them which study on ME/CFS patients showed that adrenaline formulated anaesthetics do not provoke a delayed reaction in ME/CFS. Then ask, to drive the point home, if it was a double blinded placebo controlled randomized trial. Evidence based junkies will hate you for it, but its using their own mantra against them.



Not even then . You see (I quote from memory) "when we inject adrenaline into the gums almost none of it gets into the blood stream, its cardiologists and other specialists who do not understand this".


I react badly to adrenaline. Dentists here don't get it either. However my current dentist was willing to do it.

Specialists? As an anesthesiologist, I have seen the tachycardia and hypertension from epinephrine used in cosmetic surgery. I also know how to make the reaction go away: IV beta blockers. That dentist is an idiot and a jerk and if he were in the US would likely have many malpractice suits against him.

 

[Kati]

Specialists? As an anesthesiologist, I have seen the tachycardia and hypertension from epinephrine used in cosmetic surgery. I also know how to make the reaction go away: IV beta blockers. That dentist is an idiot and a jerk and if he were in the US would likely have many malpractice suits against him.

It's not only the immediate reaction that is the problem.
For me, When it happened first a couple of years into my illness, I had an exaggerated typical reaction, tachy, but I then had 3 days of horrible migraines which I very seldom had, and had a 4 weeks long crash.

i needed another dental procedure a month later and I told the assistant, so we tried to use plain lidocaine and
I didn't have these reactions, so it made it very clear to me that it was indeed the epinephrine.

Dentists like to use epinephrine in the freezing because it lasts longer, and there is less bleeding, therefore they are done faster. Plain lidocaine lasts about 20 minutes for me and I need to be reinjected. If the procedure is long and requires multiple injections, then it becomes a problem of swelling and starting and stopping until it's done.

Dr Charles Lapp has an anesthesia guideline where he mentions sensitivity to epinephrine but in the context of general anesthesia.

http://phoenixrising.me/wp-content/uploads/AnesthesiaLapp2page.pdf

 

[alex3619]

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.

 

[JamBob]

I am assuming you saw an NHS dentist - if there is any way you can afford it, just go to a private dentist. They want your custom and will do what you ask to make you comfortable. My dentist was really cool about giving me a non-adrenaline injection although I told him it was due to having adrenal insufficiency that I needed it. I paid for the injection/his time though.