Endoscopy without Sedative (edit: without throat spray, too) & Endoscopy Sedatives without Amnesia?

[Jennifer J]

I need to have an endoscopy. I'll be meeting with my gastroenterologist on Wednesday. I really don't think doing a sedative is a good choice for me for many reasons. I'm considering doing it without. I was curious about anyone's experience of not using a sedative and any recommendations to make it easier. I'm not looking forward to this at all. @TiredSam, @TigerLilea, @Sasha and anyone else?

Also, I'm curious, if I have to have a sedative, are there any that don't cause amnesia? A big reason, of a few reasons, I live in a building where I share bathrooms and common spaces. It really wouldn't be good for me at all, in this particular building I live in, to not remember what I'm saying or doing.

And if I have to have a sedative, is there any, that I can drive myself? I don't have anyone that can drive me or check on me. I know no one in the bottom half of my state that I can turn to for help, and I can't ride in almost all taxis due to my angioedema/MCS reactions to any fragrance in the car or on the driver.

Thank you for any information that can help me navigate this and be aware of things that I need to be aware of so I can make the best decisions for me.


Edit: Also, did you do it without the throat spray? (Thank you.)

 

[deleder2k]

I guess you're referring to gastroscopy?

I have done it to times. The first time I wasn't offered nothing. It wasn't even a topic. I didn't know that some got sedatives.

The last time when I did it it was at another hospital. They said I could get IV diazepam (valium). I said no, since I got through it the first time without. I was told that I would accept to receive diazepam I would need to stay at the hospital for 6-7 hours or so. I have taken 5 mg valium before, and it didn't do much for me. Since they said I would stay at the hospital for 6-7 hours I guess their plan was to give me so much that I would almost pass out during the examination. If you're getting that much Valium you can not drive. Perhaps you can do it without? It is very unpleasant, but it only lasts for a few minutes. When they move the hose around it could feel like you have to vomit, but you won't. Your task is to breathe, and think of something else.

If you're worried about the question whether to get sedatives or not, and whether you can drive I would advise you to call the hospital.

Good luck!

 

[Jennifer J]

I guess you're referring to gastroscopy?
I have done it to times. The first time I wasn't offered nothing. It wasn't even a topic. I didn't know that some got sedatives.

Hi, @deleder2k. It is called gastroscopy, I didn't know that. Interesting that they didn't even offer you an option the first time. I'm having to talk them into doing it without, from what I've read it's more common in other parts of the world and not done that often in the U.S.

Perhaps you can do it without? It is very unpleasant, but it only lasts for a few minutes. When they move the hose around it could feel like you have to vomit, but you won't. Your task is to breathe, and think of something else.

Good luck!

You did it twice without, which is reassuring for me. I'm concerned about it being very unpleasant even though it lasts only a few minutes. I remember a big earthquake I was part of it. I was shocked to find out it only lasted 17 seconds, it seemed like an eternity. Curious, did time slow down for you during the procedure or did it seem rather quick?

Thank you, for sharing what it was like for you and that you did it more than once. What you wrote was very helpful, and I think you're brave!

 

[TiredSam]

I had a gastroscopy without a sedative. It was perfectly do-able. My only problem was with the gag reflex, I just couldn't stop gagging when they inserted the tube, and they couldn't proceed until I did. The reason was that I wasn't doing what they told me to do, which was to relax and concentrate on breathing in and out. As soon as I finally did, it all got a lot better and they could proceed. If I had it done again I'd do it without a sedative and remember to concentrate on breathing from the beginning.

If you try it without a sedative and it doesn't work (ie because you can't relax or stop gagging) the worst that can happen is they have to stop, and you'll have to have a sedative. So you might as well try it without, and remember to concentrate on your breathing.

As for how long it took, I can't really remember, but once I behaved myself there was very little discomfort, so it wasn't the kind of experience where you're waiting every second for it to end because it's so awful. Of course I was glad when it was over, but it wasn't painful or too unpleasant.

To be honest I was more worried about the driving, especially the journey there, because not eating for 6 hours, especially from when I get up in the morning, really affects me badly, and with ME on top of that I wasn't sure I'd be in a fit state to drive so my wife drove me in. I was ok to drive home again (I had something to eat soon after the procedure before driving home).

 

[Sasha]

Mine was OK (not something I'd do for fun, but OK!) without a sedative. They were using a new kind of endoscope that's thinner than the older sort and said that for this new one, almost no-one needed a sedative. I only almost gagged once, when the tube was almost all the way down, and then I was OK.

I think it's right that if you concentrate on your breathing, it's a big help.

Good luck!

 

[belize44]

Is it possible to numb the throat only?

 

[Billt]

First time was without sedative maybe 20 years ago. Gagged alot but did get through it. It was only a few minutes but for me it did seem longer. I could do it again if I had to but prefer not to ! the next time I did one I had sedation. It is very light and you are pretty alert right after. Someone does need to drive you home. The sedation was much easier for me anyway and as soon as you are alert, they let you go.

 

[Invisible Woman]

I had a gastroscopy without sedation. It was offered with but I tend not to react well so I declined. They did insist on using a throat numbing spray though.

It was pretty quick. I fasted for 6 hours. I was asked to lie on my left side with my knees drawn up slightly . They were concerned that some patients, if they gag, will reach up to grab the tube (natural reaction) but I found that pushing my hands against my thighs took care of that (a nurse had her hands gently over mine ready to grab 'em though).

They used air to inflate the stomach so they could see better, so be prepared for some burping. Just focus on your breathing. It isn't something you would do for kicks but it doesn't hurt at all and your breathing is not restricted in any way.

In the UK if you have sedation you are not permitted to drive and you will be kept in for a few hours. They actually kept me in for a couple of hours anyway before they let me go.

Good luck with it.

 

[Sasha]

Yes, big for the throat-numbing spray! I had that.

 

[Jennifer J]

Is it possible to numb the throat only?

Thank you, I wish. I'm not comfortable with doing it because of my angioedema reactions to most things. Seems too risky for me.

 

[Gingergrrl]

Thank you, I wish. I'm not comfortable with doing it because of my angioedema reactions to most things. Seems too risky for me.

This post is very timely for me and wanted to get your opinion @Jennifer J and everyone else. Although I will not be having an endoscopy, I will be seeing an ENT next week b/c my left tonsil is very enlarged and uncomfortable. It could be angiodema from MCAS but it is 100% always on the left side and never on the right which seems odd.

I was told by my new PCP that the ENT has a super tiny scope (like the size of a thread) that can look behind the tonsil but it involves using a numbing spray so the patient does not gag. I asked the secretary but she did not know what is in the numbing spray and I am afraid I could have an allergic or even anaphylactic reaction to it. I would prefer she look behind my tonsil without the numbing spray and am bringing the TMS packet so we can look at the ingredients. A friend told me that sometimes putting salt at the back of tongue can prevent gagging.

I don't actually care if it hurts, am just afraid of a severe allergic reaction to the spray. The main reason I am even doing this is b/c I have this stupid antibody that correlates to lung cancer but can correlate to other cancers so I want confirmation that there is nothing cancerous on my tonsil. I truly don't think there is but will be relieved to know and also to know if anything can reduce the feeling like a cotton ball is stuffed behind my tonsil all the time but my guess is that it is just part of the MCAS.

Jen, do you have MCAS or idiopathic angiodema for an unknown reason? Am very curious what you decide. I have no allergic reaction to sedatives like benzos (which believe it or not are actually mast cell stabilizers) but am terrified to try Lidocaine or any of the "caine" meds as these can be mast cell triggers. Did they tell you which sedative they would use? Is it a pill or actually sedation through an IV like MAC or twilight sleep?

 

[Invisible Woman]

I had ENT put a camera up my nose and down the back of the throat a few years ago. It was quite a small tube- I wouldn't have said thread but this is going back maybe 8 years or so in the UK.

Some sort of spray was used, if memory serves, but I think it was to get my nose to run (charming!). That apparently made it easier for the 'scope to be inserted.

I don't recall it hurting - was just a bit weird, really.

Couldn't tell you what the contents of the spray were. I would definitely try to find out ahead of time though. It might be worth asking the secretary to find out for you what is in the spray, or even just what the spray is called so you can check the contents yourself.

When I was having the gastroscopy the person who normally administers the sedative tried to persuade me for one final time to be sedated beforehand. She couldn't tell me the contents or even simply if it contained any adrenaline so I refused again.

Bizarre, but they use some of these medications so routinely on so many people and yet don't always know the exact contents of what they are dosing you with!

 

[Jennifer J]

This post is very timely for me and wanted to get your opinion @Jennifer J and everyone else. Although I will not be having an endoscopy, I will be seeing an ENT next week b/c my left tonsil is very enlarged and uncomfortable. It could be angiodema from MCAS but it is 100% always on the left side and never on the right which seems odd.

...The main reason I am even doing this is b/c I have this stupid antibody that correlates to lung cancer but can correlate to other cancers so I want confirmation that there is nothing cancerous on my tonsil. I truly don't think there is but will be relieved to know and also to know if anything can reduce the feeling like a cotton ball is stuffed behind my tonsil all the time but my guess is that it is just part of the MCAS.

Oh, @Gingergrrl, I'm sooo sorry to hear all that you have to deal with and that you have that stupid antibody that can correlate to cancers. Errrrr. It's good that you are getting it checked out to know what's going on and hopefully they can make this better for you.

It's interesting how you say your angioedema is always on your left side and not your right. When mine started 15 years ago, it started out on my left side, I think for weeks and eventually my right side joined in. Sometimes when I flare on top of my continual reaction, it's my left side first or only my left side. Hmm...

@Gingergrrl, you can skip the next part if you want to except the first three sentences. I'm just venting and hoping that writing this will help me sort out how to communicate to the doctor with this illness and fill out the paper work, and someone will have some good suggestions regarding those aspects. I'll try to write you more as soon as I can before your appointment next week, and hopefully before Friday. I hope some other people here have some answers for you, too. I'm thinking of you and sending you hugs.

My appointment with the Gastro is tomorrow. I'm so exhausted right now I'm having a hard time filling out the paper work they sent me. My brain can't even remember whether of not I've had some review of systems things. Then other things that I mark, are relevant to my ME/CFS, which we don't want to acknowledge to a specialist that we have, so it ends up those symptoms are read as psych or ?. If I don't mark them, I don't think that's good either. In the past when I left out a symptom, it was used against me in my social security disability hearing, even though I had a good reason why I didn't write it. These dilemmas just to fill out paper work.

And, they want to know my PCP. I don't want my PCP involved. It will cause me more problems. I'm trying to find a new one but this can take years.

How can I go to an appointment too exhausted to talk and answer much with slow processing speed and inability to remember things off the top of my head, and not attribute it to the doctor, the reasons for this is I have ME/CFS? I wish I could reschedule the appointment for when I'd be fresher, the wait is around 2 months for a new one, and I've been having this problem in my stomach since December. Se la vie, it should be interesting tomorrow!

 

[rosie26]

I watched my mother have it done a few years ago and it doesn't take long. She never had any sedation and I think we left straight after it was done. Sounds like great advice to concentrate on breathing. All the best @Jennifer J.

 

[deleder2k]

Hi, @deleder2k Curious, did time slow down for you during the procedure or did it seem rather quick?

Thank you, for sharing what it was like for you and that you did it more than once. What you wrote was very helpful, and I think you're brave!

Thanks. Hm, I don't know. I wasn't told how much time it would take, so I can only remember that I thought it would go fast. If they will take samples it should be done in 5 minutes, 10 at the very most.

I forgot that I also got the spray. I am sure it was needed as I gagged several times even with it. It feels somewhat similar to a local anaesthetic given by a dentist.

I agree with what @TiredSam say. Try without valium or whatever they offer you. If it doesn't work out they can give it intravenous which means it works instant.

 

[Gingergrrl]

I had ENT put a camera up my nose and down the back of the throat a few years ago. It was quite a small tube- I wouldn't have said thread but this is going back maybe 8 years or so in the UK.

It sounds like a different test than the tiny scope that looks behind your tonsil but does not go down your throat. My new PCP told me about this so he may be exaggerating when he said it is the thickness of a thread and this remains to be seen!

Couldn't tell you what the contents of the spray were. I would definitely try to find out ahead of time though. It might be worth asking the secretary to find out for you what is in the spray, or even just what the spray is called so you can check the contents yourself.

I tried and the secretary was very nice but said the doctor worked in two different offices (I have never seen her before) and was not there to ask about the spray. But you are right that I should call back and ask if they can just give me the name of the product so I can Google it myself.

When I was having the gastroscopy the person who normally administers the sedative tried to persuade me for one final time to be sedated beforehand. She couldn't tell me the contents or even simply if it contained any adrenaline so I refused again.

Bizarre, but they use some of these medications so routinely on so many people and yet don't always know the exact contents of what they are dosing you with!

I agree it is bizarre that doctors use products and have no idea what is in them. I do not tolerate adrenaline/Epi either (even though I carry an Epi Pen in my purse for an emergency but I'd have to be on death's door to ever use it.) My bigger issue is what is in the spray itself including any artificial dyes which are my biggest allergy risk.

Often times I've asked a pharmacist and they said, "It's fine b/c the pill is white" and then I read the insert and it has yellow, red, or blue dyes even though the pill is white so that is meaningless (or it even has a white dye.) It must serve some purpose that I cannot figure out.

But thank you @Invisible Woman for prompting me to ask further prior to the appt and I am going to do this. Glad you started this thread @Jennifer J

 

[Gingergrrl]

Oh, @Gingergrrl, I'm sooo sorry to hear all that you have to deal with and that you have that stupid antibody that can correlate to cancers. Errrrr. It's good that you are getting it checked out to know what's going on and hopefully they can make this better for you.

Thanks, Jen, and I really appreciate it. It's been annoying to know this auto-antibody correlates with certain cancers but I guess it is good to have that information at the same time.

It's interesting how you say your angioedema is always on your left side and not your right. When mine started 15 years ago, it started out on my left side, I think for weeks and eventually my right side joined in. Sometimes when I flare on top of my continual reaction, it's my left side first or only my left side. Hmm...

Yes, for me the angiodema is always on my left side, literally 100% of the time, whether it is my tonsil, throat, face, cheek, eye, etc. I really do not know why or how common this is.

@Gingergrrl, you can skip the next part if you want to except the first three sentences.

Absolutely not, and want to help you in any way that I can!

hope some other people here have some answers for you, too. I'm thinking of you and sending you hugs.

Thank you so much and you, too .

My appointment with the Gastro is tomorrow. I'm so exhausted right now I'm having a hard time filling out the paper work they sent me. My brain can't even remember whether of not I've had some review of systems things.

All you can do with the paperwork is fill it out to the best of your ability and memory and you can't do anything more.

Then other things that I mark, are relevant to my ME/CFS, which we don't want to acknowledge to a specialist that we have, so it ends up those symptoms are read as psych or ?. If I don't mark them, I don't think that's good either. In the past when I left out a symptom, it was used against me in my social security disability hearing, even though I had a good reason why I didn't write it. These dilemmas just to fill out paper work.

This is my opinion, so please do whatever feels right for you, but I would focus on the specific symptoms that brought you to the gastro (whether it's stomach pain, nausea, constipation, diarrhea, etc.) I would mark any symptom that you truly have but I would not attribute it to ME/CFS which could allow him to dismiss you or if he takes it seriously, to attribute the entire problem to ME/CFS when there could actually be something else going on which we don't want to miss.

Unless your disability case is built on GI issues, I don't think seeing a specialist for a specific issue could affect it in any way. Mine is based on pulmonary/breathing and autonomic symptoms (so if I see a random doctor like this ENT, then disability will never even know it occurred.)

And, they want to know my PCP. I don't want my PCP involved. It will cause me more problems. I'm trying to find a new one but this can take years.

Can you tell them that you do not have a PCP right now? I did not have a PCP for four years until recently and I just told all specialists that I was in the process of finding a new one. Most just said okay and that was the end of it.

How can I go to an appointment too exhausted to talk and answer much with slow processing speed and inability to remember things off the top of my head, and not attribute it to the doctor, the reasons for this is I have ME/CFS?

I have never told a specialist that I have ME/CFS b/c for me it does not add anything to the clinical picture. I just focus on my symptoms and let them figure out what they think is the cause. I do, however, always tell them about the MCAS (and for you I would absolutely mention the angiodema) b/c it is extremely important from a safety perspective and what meds they give you, etc.

Best wishes for tomorrow.

 

[hmnr asg]

I had an endoscopy a few years back and i used for no sedation, zero! I had a meeting that morning and I couldnt miss that meeting. The physician complained but i insisted. Anyways, i gagged a few times but he tried to be efficient and the whole thing was done in 15 minutes and it was fine. I just had this gag thing going on for a few minutes afterwards and my throat was irritated.

 

[Gingergrrl]

@Jennifer J How did the procedure go today? Am thinking of you and hope it went well (when you feel up to posting of course!)

 

[Jennifer J]

@Jennifer J How did the procedure go today? Am thinking of you and hope it went well (when you feel up to posting of course!)

Hi, @Gingergrrl. Thank you! That's really nice. Today was going to be a consultation. Unfortunately, I had to cancel. I was too foggy yesterday to put most of the information together to talk to her or see straight. Woke up this morning feeling like I have the flu. I was going to try to go anyways, but it wouldn't have been worth my while since I wouldn't have been able to cover the things I needed to cover. So now I have to wait another month to see her. Thank you for thinking of me. You're in my thoughts, too. I'll try respond to your post on the other thread tomorrow.

Edit: spelling correction