Terrified of both dentistry and sedation

[Neurospicy]

Content note: sexual violence, I'll get to that last.

I think I really do need dental treatment, and judging by what I was told four years ago, when I had three deep fillings done under general anaesthetic, I need root canal (or possibly extractions, at which point going private for implants may be a thing?), and that can't be done under GA. Also there's an impacted wisdom tooth in there. The GA experience was pretty awful anyway, but I've always refused conscious sedation in total terror.

Physical issues: severe ME/CFS (pretty much housebound), hypermobile type EDS (very late diagnosis, still not sure of the implications on dentistry apart from local anaesthetic not working properly), Sjögren's/sicca giving me dry mouth, and the only pain relief I can take is paracetamol, not that it usually does anything. Well, I can't use NSAIDs orally, but they used IV diclonfenac for the dentistry last time, that worked. But opioids are right out, they trigger terrible abdominal pain these days. Also I've had paradoxical agitation responses to some sedative meds, including becoming suicidal after a week on clonazepam for a parasomnia. I'm OK with diazepam and temazepam, though.

*sexual violence*

This was repeated drug rape within a relationship, when I was semi-conscious, on a very high dose of pain meds for a month when I had acute calcific tendinitis. I also have generalised medical trauma, and don't do well with people looming over me, especially from the front, or anything around my face or neck.

I do not want to be explaining that I was raped to my dentist, I just about managed telling my GP when she had to campaign for me to get a colonoscopy under GA. The doctor had told me cheerily, "Conscious sedation is great, some patients are fighting through it, but they don't remember a thing!" and that left me even more terrified. (My GP had to write to her twice to insist on the GA.) Another dentist had said that they don't recommend conscious sedation for people with PTSD because we're more prone to get a bad reaction and panic.

When I did try seeing the specialist dental service, first they grabbed me and pulled me out of my wheelchair without asking (it wasn't even necessary), the dentist tipped me back in the chair, got right in my face, and demanded repeatedly to know what trauma had caused the PTSD, was it a dentist, if it wasn't a dentist then why was I scared of dentistry, and couldn't they just try some dentistry on me and see how I got on? It was retraumatising. I didn't make contact with them for two years after that, and insisted on GA when I did. But that was still a pretty awful experience, and there were so many nasty surprises, like getting home while feeling shit, and discovering I was so bruised I looked like I'd been beaten up.

Can people please talk me through the conscious sedation a bit more? The idea of being aware and hating it when it's happening, but not remembering afterwards, is horrific. And I'm worried the meds won't work right on me, so many don't, so what happens if I get agitated, or am in pain?

 

[NervousUSA]

@Neurospicy Hi, this sounds really rough. Could you help me understand, do you need sedation or general anesthetic because local anesthetic does not work on you?
I have medical trauma, and other trauma issues too (I had a second opinion it was PTSD). I am unwilling to have sedation or general anesthesia, and have also had a paradoxical reaction to sedation. I wonder if you might get somewhere seeking another type or method of local anesthesia, if you don't want sedation or general anesthesia? Maybe a different type of local anesthetic? I agree, it is very creepy that you can still suffer under concious sedation, and it doesn't stop pain. Because of my paradoxical reaction I remember that I was crying and freaking out while sedated, because I didn't have full amnesia. Maybe you could look into finding a way you could have pain relief of some kind while also having the sedation, if you want or need the sedation? Though the sedation doesn't stop pain, maybe you could be kept pain free by another drug. I am sorry if I don't understand your medical situaution that well, by the way, and can't discuss it well, I am not any kind of medical expert. It is innappropriate for someone to ask you the cause of your trauma, I am sorry someone said that to you, I have only had one doctor try that with me. Only someone who doesn't understand trauma would do that. I felt pressured to give a partial answer, but I am not willing to really about talk it. If asked again, I am just going to say "I don't want to talk about that" or "I am unwilling to talk about that". That whole situation you described is horrible, the way they were behaving is way out of line, in my opinion. It is unnacceptable for people to grab or move you without asking you. I hate when people do anything like that to me. When I went to counseling about my medical/dental/other trauma/phobia, I was told to tell medical personnel that I have medical trauma and that I want everything explained to me first, and for my consent to be asked and obtained before doing anything, and to remove myself from any medical or dental situation where people wouldn't agree to that, not to go further. Maybe some action along these lines might be useful for you, I don't know. Or say no and stop them. I am trying to speak up more and more, and tell people what I am willing to do, or say no or stop, in medical or dental situations, not always succeeding. I saw you posted this also in the ask a dentist section, I think that it is a really good idea, I hope they have some good advice for you.

 

[letsconnect]

@Neurospicy So sorry to hear about your bad experiences with the specialist dental service, that really should not have happened . If you are considering private treatment, we've got a section here on the forum with dentist recommendations, also for Scotland.

I'm not sure if you've come across these first-hand accounts of consious sedation already, but just in case you haven't:

IV Sedation Experiences

Read about IV sedation experiences which people have shared on Dental Fear Central over the years!

www.dentalfearcentral.org

 

[Neurospicy]

@letsconnect Yes, I've booked in for September with one of the dentists recommended here, and was really impressed by his articles on the site. My GP is looking at their site as well, she said it's always good to know who to recommend to patients.

It's a relief to hear someone else say that should not have happened!

I'm currently having a course of counselling with Rape Crisis, so we're talking about this as well.

 

[Neurospicy]

Also yes, I am reading the accounts, they're helpful. I've also been searching for "sexual", "paradoxical" and such. My GP said to mention the clonazepam thing, but seemed to think conscious sedation was a good thing to work towards. I can't be the only person who's experienced drug rape out there and is struggling with dentistry, but this specific thing just doesn't get talked about.

From what I've read here, bad reactions to conscious sedation seem pretty rare, and more likely with the people who are having all-out panic attacks by the time they sit down. That doesn't tend to happen with me, I freeze up at the time and melt down a day or so later. Also I won't even try unless I feel I really do trust the dentist, and the practice I'm registering with clearly doesn't rush people.

I once got through my fear of an MRI (I'm claustrophobic) by buying a book on CBT for phobias, and practising at home by crawling into a large cardboard box and playing YouTube videos of MRI scans. So it helps to know I have that behind me. I always get loads of brownie points when I mention it to medical professionals!

 

[pigeonkisses]

@Neurospicy I am so sorry you're going through this and I 100% can relate as my dental phobia stems from the same type of experiences and I too have cPTSD. The doctor you saw was awful and I would have reported him for his conduct, that was really unprofessional.

I have had IV sedation for a gastroscopy but I was going through a bad patch at the time so I was in full panic mode beforehand, the sedation didn't 'take' well and I was traumatised further by that experience which was distorted by the drug and it was perceived by my brain as an assault. Also I have emotophobia so that whole experience freaked me out even more so as a result, I had flashbacks for months after that, at night, when I was about to fall asleep.

Having said that, I won't let that experience deter me from having sedation in teh future - I am not even sure a GA is someting they are willing to offer me. I also think that the whole thing depends on the mindset you're in when you go there. I think that things would have been different for me if I'd been given a pre-med before the IV sedation, which is what I will discuss with the dentist when I go for my assessment.

I've had dental work done with IV sedation before the endoscopy and I was fine with it. I really do think it depends on how you feel when you go. See if you can get something to relax you beforehand, make sure there is someone else with you, if that makes you feel safer. I am not sure conscious sedation is bad, I have actually fallen asleep during one of the dental treatments under IV sedation. I hope this is what happens next time I have it.

Good luck with whatever you choose and feel free to inbox me, please don't let my gastroscopy story put you off.

 

[Neurospicy]

@mouthsewnshut I can't report that dentist now, it's five years ago, I don't know who she was, and the practice has made it clear they don't see it as a problem. Plus NHS complaints almost never go well. But it's a relief to hear other people think that's appalling. My counsellor today looked horrified. And when I had the GA treatment, I came home feeling like my mouth was taped shut from the horror of it all, and had nightmares for weeks.

Premed before going in, right. I have 2mg diazepam to take as needed for anxiety, I'll ask about that.

Have you had conscious sedation since the experience when it all went wrong?

An endoscopy/colonoscopy is when conscious sedation was first suggested to me. I froze up, but protested. The gastroenterologist (a woman) cheerfully told me that "some people are fighting it, but it's OK, they don't remember it!" I couldn't get through to her that this was a nightmare. A few days later, I rang her secretary to beg again, and found myself saying, "I've been drug raped." It was the first time I'd realised it had happened, ten years after the events, so then I had to do a fair bit of processing with that. I told my GP, who is wonderful, and she wrote in to insist on GA for the procedure. She had to write in twice.

Anyway, this is one reason why I've been so frightened of conscious sedation. The idea of going through something I'd hate, which would feel like a violation, and then not remembering it? How is that meant to sound *comforting*?!

 

[pigeonkisses]

Oh that was the doctor who told you "some people are fighting it, but it's OK, they don't remember it!" that I was referring to. Now I make it a point to tell the person who treats me, why I have a phobia. I know what you mean about feeling like it's a violation, this is what freaks me out so much about all medical procedures. I have not had conscious sedation since no. I tried gas and air and all it did was stop me from crying. I was in full panic mode, so that didn't work for me. That's why I think a little anxiolytic before the appointment might be better than none. I am hoping that it won't be so hard this time.

ETA: yes and the dentist too, sorry I missed that bit, she was absolutely out of line. People who work in specialised trauma units should really be properly trained.
One dentist I saw at the dental access clinic here a few years ago knew I was there because of my phobia and he started telling me how back in the day they would pull teeth out all day and fill buckets and gave me a really grim mental image, he was really graphic and thought he was being funny. I was petrified, I just wanted to leave.

 

[Neurospicy]

@Neurospicy Hi, this sounds really rough. Could you help me understand, do you need sedation or general anesthetic because local anesthetic does not work on you?
I have medical trauma, and other trauma issues too (I had a second opinion it was PTSD). I am unwilling to have sedation or general anesthesia, and have also had a paradoxical reaction to sedation. I wonder if you might get somewhere seeking another type or method of local anesthesia, if you don't want sedation or general anesthesia? Maybe a different type of local anesthetic? I agree, it is very creepy that you can still suffer under concious sedation, and it doesn't stop pain. Because of my paradoxical reaction I remember that I was crying and freaking out while sedated, because I didn't have full amnesia. Maybe you could look into finding a way you could have pain relief of some kind while also having the sedation, if you want or need the sedation? Though the sedation doesn't stop pain, maybe you could be kept pain free by another drug. I am sorry if I don't understand your medical situaution that well, by the way, and can't discuss it well, I am not any kind of medical expert. It is innappropriate for someone to ask you the cause of your trauma, I am sorry someone said that to you, I have only had one doctor try that with me. Only someone who doesn't understand trauma would do that. I felt pressured to give a partial answer, but I am not willing to really about talk it. If asked again, I am just going to say "I don't want to talk about that" or "I am unwilling to talk about that". That whole situation you described is horrible, the way they were behaving is way out of line, in my opinion. It is unnacceptable for people to grab or move you without asking you. I hate when people do anything like that to me. When I went to counseling about my medical/dental/other trauma/phobia, I was told to tell medical personnel that I have medical trauma and that I want everything explained to me first, and for my consent to be asked and obtained before doing anything, and to remove myself from any medical or dental situation where people wouldn't agree to that, not to go further. Maybe some action along these lines might be useful for you, I don't know. Or say no and stop them. I am trying to speak up more and more, and tell people what I am willing to do, or say no or stop, in medical or dental situations, not always succeeding. I saw you posted this also in the ask a dentist section, I think that it is a really good idea, I hope they have some good advice for you.

Thanks for the response. OK, let's try to explain.

Local anaesthetic doesn't work well on me. The last time I got through dentistry while awake, I think it was pretty brief, maybe not even a filling, and it took three shots instead of one. I now have the EDS diagnosis, so we know why this happens, and I believe a good dentist should be able to work around it.

The idea of conscious sedation scared the living daylights out of me the first few times it was suggested, when it was handled badly by medical professionals with no clue about trauma. Both women, incidentally. I've since realised I may have to make my peace with having conscious sedation, that it may be my best option.

I had some dentistry done under GA four years ago. I hated it. It was still retraumatising. It left me feeling horribly ill as well, and it was too far away for me to reasonably travel. I was told that my future options with my teeth were just extractions, that they won't do root canal under GA, and they won't do implants to replace the teeth they wanted to take out.

This was with the same local NHS clinic that supposedly specialises in dental trauma, which is the one I mentioned at the top. I've now realised I don't want to go anywhere near them again. I've got the money to go private, and I'd pay quite a lot to avoid that sort of horrendous experience, and also to avoid needlessly losing teeth.

Something that has helped a bit in the meantime is that my cat gets mild sedation for vet visits, we give her 100mg of gabapentin two hours before the vet arrives. Seeing the love and care that we all give her when she's woozily wobbling around, joining in her care (I'm usually the one holding her wrapped in a towel while the vet does the jabs, though we also had my partner petting her head when the vet snuck in for a blood draw), and above all the respect for her boundaries, has possibly changed my view of sedation a bit.

 

[letsconnect]

I once got through my fear of an MRI (I'm claustrophobic) by buying a book on CBT for phobias, and practising at home by crawling into a large cardboard box and playing YouTube videos of MRI scans.

That's probably the most ingenious thing I've read in a long time - thanks so much for sharing! (I once made the mistake of briefly opening my eyes during an MRI scan, just because I was overcome by curiosity - needless to say, I've been sticking to the "eyes shut" approach ever since, lol)

Great to hear you've made an appointment already @Neurospicy - fingers crossed you'll have some positive experiences with dentists at last!

 

[Neurospicy]

Here's hoping! How's it been for you today?

I've had some nasty panic attacks at hospitals, so I knew I needed to do something about the MRI. I did have a few panic attacks during the practice sessions, but it was at home where I was in control, and I worked through some stuff. My partner and my counsellor were both a bit concerned about all that crawling into cardboard boxes. The car thought it was fantastic, she'd come to investigate and I'd hear these alarming scrabbling noises on top, which just made me burst out laughing.

I was really lucky, they have a machine which does it all in a few minutes, after a friend of mine had said hers take over two hours! And I took some diazepam too. I'd been warned, so my eye mask was firmly on before they wheeled me inside, and I didn't peek.

 

[pigeonkisses]

@letsconnect @Neurospicy I agree the cardboard boxes idea is really creative! I am so rubbish at coming up with coping strategies. I stopped the first MRI I had and the tech was really annoyed with me and made that very clear. I was sent to a different place for the next one and I had some diazepam too before going in. It went well that time around!

 

[Neurospicy]

Well, I tried a blanket fort first, but that was way more faff. I happened to have a huge box around, I use it folded flat for basting quilts on. It produced a tunnel that felt roughly the right size, so that worked out well. I also tried the box from my new microwave, that wasn't bad for the head end.

The MRI videos on YouTube are fantastic. There's also a Facebook group about claustrophobia and cleithrophobia, and that has a resident radiologist who is a total sweetheart, very helpful.

 

[Neurospicy]

Something else I think I'll need to flag up is that my proprioception (sense of where my body is in space) is poor, as is common with EDS, and this can be really disconcerting. It's been the cause of multiple falls, for instance with an untrained home care worker who didn't know how to help me shower properly. It's also a reason I got thoroughly spooked when I bought a new bed recently and it turned out to be weirdly high and wobbly. I didn't realise how much it was affecting me until I replaced the mattress and could finally be sure of where my arms and legs were. Plus I can be prone to vertigo.

So this may be one reason why the chair alone is awful for me, as well as feeling horribly vulernable and exposed. Even if I go for sedation, and I can't see how they could do anything to me without it, I'll need to be awake to get in the chair. Maybe I should ask if I can just try it out, on my own and without the dentist getting anywhere near me on that visit?

 

[Neurospicy]

Blast. The dental practice I'd booked in with no longer does conscious sedation. I'm not sure where I go from here.

 

[letsconnect]

Hi @Neurospicy, you mentioned elsewhere that the practice you intended visiting doesn't seem to want to deal with someone with PTSD, but maybe they were just being honest about not being trained to deal with these types of medical and mental health issues? Your particular situation might fall more into the realm of special needs dentistry, and it would be unprofessional of them to offer a service which is outside the scope their practice.

It sounds like the service that's supposed to help people in your situation (i.e. community dental) was less than stellar . I'm not sure if this is a general problem in Edinburgh, or whether you just got unlucky with the dentist(s) you were allocated in the past... it's quite disconcerting that a clinic that supposedly specialises in dental trauma would have treated you the way they did. Just wondering if there is any chance of talking to whoever is in charge of the clinic and seeing if they have made any improvements. There's been a huge push towards implementing trauma-informed care in Scotland across the NHS and public services, so maybe things have improved since you last were in touch with them ?

Another way forward might be to work together with a psychologist who can liaise between you and potential dentists...

 

[Neurospicy]

I did try ringing the specialist dental service a few weeks ago, but couldn't get anywhere with them. They got a dentist to ring me back who wouldn't discuss sedation with me, just wanted me to come in. I tried to talk about the grabbing me and yanking me out of my whrrlchair incident, and he made it clear that was a Me problem, not a problem from them. Ditto when I tried to explain that getting in my face and demanding to know why I had PTSD was inappropriate. I don't feel safe with them. The trust is gone, and since I don't know who that previous dentist was, I can't make sure I avoid her. You get whoever is in the clinic that day, you can't ask for continuity of care.

I did get a more helpful email back from the local dentist, who said conscious sedation does sound like a good idea, and recommended three places. One only does gas and air, which I think wouldn't work for me, though I'll read up more on it. Another has too many bad reviews for me to want to risk, people specifying the dentist being rough, ignoring a No, that sort of thing. And the third seemed OK, but then tried to talk me into paying £21 for a chat with "the dentist's sister", who is their marketing consultant. I emailed them with a screenshot of the page on their website which claims to offer a free fifteen minute video chat with their lead dentist and asked if that's still the case, also outlining my situation, and haven't heard back yet.

Generally I'm getting a bad vibe from anywhere with "dental spa" in the name. The next "dental spa" I spoke to was trying a hard sell for cosmetic dentistry, couldn't answer questions about anything medical, didn't even know if the treatment room had windows, let alone what sort of masks they use and whether they have air filtration, was trying to push me into a free chat with a "Smile Advisor", and lost all hope of followup from me when she boasted that they bake bread on the premises to soothe the patient. Little bread machine behind the receptionist's desk, she said. Quite apart from the WTAF response in terms of hygiene, I have a bread machine myself (and don't want to associate it with dentistry, thank you very much), and I have questions. What do they do about the noise of the kneading cycle? The various beeps? "I'm sorry, the dentist will be with you right after the raisin beeps go off"?

Anyway, I have a couple sounding promising, and both have women dentists, which I also consider a good sign. I'm not fond of the Boys' Club thing you get in some branches of medicine, and I'm noticing how mnay male dentists play golf, which is traditionally a form of networking that excludes women. It's not essential, and goodness knows I've been had bad experiences with women healthcare workers, but a better gender balance does seem more appealing.