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Anyone else immune to sedation? Endoscopy fail?

76 replies

Chartreuser · 17/05/2019 16:44

So I went for my endoscopy tidy. First lot of needs did nothing. They gave a second lot (pethidine) also did nothing so they died and I stood up and walked out (and removed oxygen mask they insisted I needed).

I am not obstreperous just really upset, I had explained several times I was scared and would be good if someone could be with me and despite there being four people in the room there was no one taking to me/reassuring me etc. If they'd said 'this is the worst bit etc ' I'd have maybe given it a go but they just seemed a bit cross.

Anyone else seemingly immune to sedation? They are now referring me for surgery so they can knock me out instead

OP posts:
Greybeardy · 17/05/2019 17:03

No one is ‘immune to sedation’ but for various reasons some people need more than others. Endoscopy sedation is heavily protocolised for good safety reasons and once you reach the top of the protocol there’s nothing else they can do. A list with an anaesthetist on it will allow for different/more sedation in a safe way or a GA. Hope your next attempt goes better. (From an anaesthetist).

Chartreuser · 17/05/2019 17:21

Thank you, add some one who is highly opiod tolerant (I am on butrans patches but stopped on Monday) is 4mg midazolam and 25mg pethidine really the top?

I did ask if they could try propofol as I was just not affected in the slightest bit they said it would have to be anaesthetist. I am also very very stressed at the moment (Bo was 169/99, pulse 115) and I think that's probably why.

I am going to complain to PALs though as despite asking and explaining I am scared they did not explain as they were doing things note was there anyone I could see as they were trying, it was all from behind :(

I appreciate you may not be able to answer and that's fine, I am just feeling really confused and upset

OP posts:
Bwekfusth · 17/05/2019 17:32

Had an endoscopy last year, the sedation was crap, was told I had had the maximum dose, still one of the most horrible experiences of my life.

Soontobe60 · 17/05/2019 17:39

You sound like hard work! They have a protocol to follow. Did they actually do the procedure? If not, you've just wasted a very expensive appointment that someone else could have benefitted from.

Frangipane · 17/05/2019 17:46

This is a nightmare read for me. I have been referred for an endoscopy and I am shitting myself, and That is putting it mildly as I have a life long fear of vomiting and I can't imagine a tube being passed down my throat without needing to vomit. And as for the tube being removed.......

I have always had quite a high resistance to anaesthetic, but do understand that there is only so much sedation a medical team can safely give anyone.

Anyway, I would feel a lot happier if I could be knocked out for the procedure. All I can do is read horror stories of people for whom sedation was not the passport to oblivion. I am interested that an anaesthetist here seems to be saying it is possible to have an endoscopy under a GA. I was told not.

OP, I am sorry for your experience. Presumably you need the endoscopy for a diagnosis?

DecomposingComposers · 17/05/2019 17:53

Frangipane

Easier said than done but try not to panic.

I'm like the OP in that I'm tolerant to sedation, presumably because of the opiates I am on but I had a gastroscopy at the weekend and I was dreading it. Even though the sedation didn't work the numbing spray that they used in my throat meant that I didn't feel the tube going down or coming up. It honestly was fine and I am not at all brave.

Frangipane · 17/05/2019 17:56

Thank you decomposingcomposers Flowers your kindness in saying that makes me want to cry. You must be so glad yours is over now, and I hope you benefited from having it done. Of course you know I am still going to be petrified until mine is over or cancelled, but thank you anyway.

ladyflower23 · 17/05/2019 18:29

Hi @Frangipane as a fellow emetephobe I just wanted to pop on to let you know that I've had an endoscopy and was also completely petrified. I was lucky that for me the sedation did lead to oblivion for most of the procedure. I also had the spray as well! Also I had 2 completely lovely nurses who could see how terrified I was and were so comforting. It was honestly no way near as awful as I was expecting. Also you go nil by mouth for several hours before (forgotten how many) so there is no vomiting. Sorry your experience was so different op. Hoping you have a better experience with the GA.

DecomposingComposers · 17/05/2019 18:48

Frangipane

I know you won't relax until it's done. I got myself into such a state about having it done. I'm having it done again in a couple of weeks and feel much better about having it done now.

MrsStarwars · 17/05/2019 18:54

Much the same for me, I had gastroscopy followed by colonoscopy. Both of which I was dreading. I had the sedation and throat spray which does really help, it doesn’t knock you out but maybe I was a bit more relaxed.
What really helped was remembering to breathe in and out of my nose and keep my eyes tightly closed!

Chartreuser · 17/05/2019 19:00

Frangipane I had a v bad experience after having sinus surgery last year that resulted in my freaking out hysterically. It actually wasn't retching/gagging at all this time, I had opted not to have the throat spray due to that but I suspect it would have been easier with it.

I was just really let down as I want being a pain the was explaining I was terrified and was assured I would have a nurse right by my head taking me through it all, and I didn't. The Dr afterwards (who wasn't in the room) was cross I didn't have anyone.

It didn't help that the endoscopist had spent the first 20 mins swearing at the other staff and down the phone as my referral letter wasn't on file and couldn't proceed.

And Soontobe60 you can fuck right off, I've had three children with no pain relief, teeth out without anaesthetic and I know only too well about cost to the bloody NHS.I did ask my GP to say I was bricking it, sadly protocol is to sheets try this first and only do under GA if they can't. I've been shitting blood for the last five months and even 300mg ranitidine plus pantoprazole isn't controlling my reflux so there is no other option for me. I am add desperate to have the fucking thing fine as they were but it is just not something you can do with someone who is panicking. I feel really upset that I've got to live with the symptoms for so much longer as I know the wait won't be short.

OP posts:
hmwhatsmynameagain · 17/05/2019 19:02

Medazalan (sp?) doesn't work for me, it actually triggers an anger fight/flight response in me. Throat spray only I found horrific and traumatising on the next attempt.
For my 3rd the doctor listened to my concerns and used fetynal (sp?) with a small dose of medazalan and that worked brilliantly, very little memory of the procedure and quick recovery of about an hour or so before being able to leave.
It's a shame that the medical staff were not understanding, after my talk with the doctor carrying out the procedure and feeling like he understood my concerns and listened to me and had a solution to try someone different and a nurse hold my hand and reassure me during the procedure I felt looked after which I'm sure made the difference

Punxsutawney · 17/05/2019 19:36

My Ds had two failed endoscopy attempts. He was only 16 and being treated in the adult department. The second time the sedation did not seem to work for him at all but made him panic and he would not let them do it. For his third endoscopy he was treated by an anaesthetist. We were told it was under general anaesthetic, he did have to wait a while for the appointment. It was a success that time thankfully, Ds was becoming a regular in the department, the volunteer serving drinks afterwards even recognised him.

Greybeardy · 17/05/2019 21:06

Each department will have their own protocol. 4mg midazolam will be just right for some, a massive dose for some and not enough for some. Buprenorphine can make opioid based sedation (and management of acute pain) more challenging because of it’s pharmacological properties.

The idea of sedation for this sort of procedure is not usually to render a patient amnesic (ie prevent any memory of the procedure), but rather is to make you care less about what’s going on. There is clearly a very wide range of what people are able to tolerate for OGD’s - many people just have local anaesthetic spray, many have sedation as above, some need a GA. It would not be cost effective to have every endoscopy list staffed by an anaesthetist and ODP ‘just in case’ when the vast majority of people don’t need them. GA OGDs may not be available for logistical reasons depending on the hospital/clinic set-up.

The reason the protocols for sedation on non-anaesthetist lists have to be very specific is that endoscopists (either doctors or nurses) are not experts in airway management or managing the many and varied (largely cardiovascular and respiratory) side effects of deep sedation in the same way that anaesthetists are. The protocols aim to provide adequate sedation for the majority of patients, whilst causing the fewest number of side-effects & risks. There will be a percentage of patients for whom the protocols are not enough.

The big physiological challenges with deep sedation/GA for OGDs are that it’s a shared airway procedure (this is similar to sedation for dental work), and that often the indication for the OGD is acid reflux. There is an increased risk of inhaling acid with deep sedation and acid reflux (inhaling acid is bad for the lungs).

I’ve seen quite a few posts on different threads on MN where people sing propofol’s praises. In the right hands it’s brilliant and is a useful drug for this sort of procedure. Remember though that Michael Jackson died solely as a result of propofol administration by very experienced cardiologist who was not an expert in sedation/airway management. It is not a drug to be messed with.

Regardless of whether the sedation works well enough though, staff are supposed to remain professional and supportive to the patient.

Hope this helps.

Chartreuser · 17/05/2019 21:29

Thanks, that's really interesting Greybeardy my issue was from my surgery when I freaked out when I woke as my throat had been completely numbed but I'd been intubated with a cuff due to my reflux and so I couldn't swallow at all. I think my hospital may try deep but awake sedation with anaesthetist, to be fair I did understand about the interaction but they discounted it, I totally get their hands are tied and am thankful.

Thanks for your explanation, it really has helped.

OP posts:
SimplySteveRedux · 17/05/2019 21:34

Yes. You need to request "Heavy" sedation (Propofol). Propofol is part of a general anaesthetisation mixture. Requires an anaesthetist to be present, some trusts you can request directly, others you need the consultant, or your GP, to make the request.

I have PTSD from childhood sexual trauma and the thought of losing control while a scope inserted up or down for even a minute entices a panic attack.

Trust me, Propofol knocks you clean out of it, no recollection, total blankness.

elsabadogigante · 17/05/2019 21:34

I have PTSD and had to have a GA for mine, OP. It also didn't work for colonscopy, either. I've also had GAs where they told me to count backwards from 100 and said I'd be out by 98 and when I got to 88 they gave me more medication. I also wake quickly and fully from GAs, even long ones of several hours and am never groggy from them at all.

I'd go for the GA, tbh.

Littlebird88 · 17/05/2019 21:38

I had a colonoscopy years ago with sedation and reacted badly to it. .I had flashbacks for years.
so when I needed an endoscopy I went for no sedation. not fun but doable certainly much better than what happened to me with sedation

Chartreuser · 17/05/2019 22:02

elsabadogigante interesting, I've had that too. Do you find for dental work you need loads of numbing too? I am hypermobile and a dentist said apparently it's a known risk for tolerance. Not sure how true that is but interesting

OP posts:
SimplySteveRedux · 17/05/2019 22:20

FWIW, I need articaine as well as (normal) lidocaine at the dentist. I need more GA medicaments too as the normal amount just makes me groggy. With my past I also need heavy sedation at the dentist, and that dentist has to be a woman.

elsabadogigante · 17/05/2019 22:33

Do you find for dental work you need loads of numbing too?

Yes!

tenbob · 17/05/2019 22:41

I’m hypermobile and have a huge tolerance for anaesthesia in general.

Dentists have to given me double doses, the max dose of midazalom (3 shots) did nothing to knock me out before a laparoscopic gynae procedure (the nurse asked me if I was sleepy, and I answered that I probably wouldn’t want to drive a car right now but was otherwise fine. She told me afterwards she hadn’t seen anyone who wasn’t asleep after that dose Confused

I always always warn dentists and doctors that I will need extra doses but about half disregard it, so I’ve had quite a few incidents of leaping off the table/out of the chair when they’ve hit a nerve that they assumed would be anaesthetised

DecomposingComposers · 17/05/2019 22:45

I have hypermobile EDS and am definitely very tolerant of local anaesthetics and sedation but am also on opiod pain killers so my tolerance is higher because of that too. I've had high doses of sedation (with an anaesthetist present) and been wide awake.

lilygirl81 · 17/05/2019 22:54

I'm really scared as had a horrible endoscopy when I was pregnant 3 years ago. I couldn't even have the throat spray and during the procedure I was desperately trying to tell them to stop, tears streaming down my face, waving my hands at them.

I have to go for another one in 3 weeks, and so freaked out about it. My first 2 endoscopies were not great, and sure I had the full sedation for those, so think I might just be one of those it doesn't work for.

I'd be interested to know if that's also why morphine and opioids don't affect my brain function at all (take these multiple times a day, but never had a doping effect)

elsabadogigante · 17/05/2019 22:59

I'm not hypermobile. Oh, yeah, I get that a lot, 'This will make you very sleepy.' Nope, it probably won't. 'I'm surprised you're not asleep.' Well, sorry I didn't perform like a trained monkey.' 'You'll be groggy afterwards,' when in fact I've got off the bed when their back was turned and straight onto my feet.

My dad is the same. And so is my son.