Ultrasound - unable to cope.

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Note: in the US they call it EKG, not ECG, I believe. I am from the UK. I call it ECG.

I am due to have an echocardiogram and an ambulatory ECG.

These I cannot cope with. I am classic autistic and I have severe sensory issues and severe challenging behaviour.

Last time a nurse attempted to do an ultrasound on me, I punched her, had a meltdown and then ran out to my support worker who was waiting outside and tried to type on my phone (I went nonverbal) that I just want to go home and hide. The gel was unbearable and from then on I couldn't carry on.

Ambulatory ECG would be impossible really. I would be ripping off the ECG leads a couple of minutes after they are put on, no way can I keep them on for 24 hours!! I cannot bear things sticking to me, it's why I don't wear plasters when I get a cut. I just put a tissue on it and apply pressure.

What should I do about this? I want to be healthy and get my illnesses looked at, but my severe sensory issues and severe challenging behaviour get in the way.

I've seen it called both. EKG/ECG=Electrocardiogram.

I'm sorry you have to go through these sensory issues.

Is there a way they could put you under general anaesthesia during the procedure? Or at least make sure your support worker is there during the procedure, so he/she can calm you down?

Would you be able to endure rubbing some lidocaine cream on yourself? That would cause your skin to lose all sensation for a while, that may be able to allow the technician to put the gel on you and use the ultrasound without you feeling anything.

If you talked with your doctor and support worker they might be able to work out that arrangement along with a large dose of lorazepam to calm you down for the procedure. Maybe they could let you put the gel on your own skin after it is numbed completely. I am just throwing ideas out there thag you could discuss with your doctor and support worker.

Thanks. I'll ask about lidocaine and lorazepam, or general anaesthesia. Support worker will be with me. I've received a lot of rubbish from my GP about it being silly to ask for sedation and that I "should put up with it like everyone else has to".

What your GP said to you is terrible. If your GP is aware of your autism, how dare he or she suggest that it's "silly" to potentially need extra measures that might ensure you can endure this procedure. Being on the autism spectrum means one's whole life is pretty much about having to do things slightly differently precisely because we can often not just "put up with it like everyone else". Wow. Seriously. I mean, it's kind of a defining thing about autism.

I'm quite angry at your GP's attitude about this.

I hope your support worker can help the situation be as much toward what you need as possible. Make it very clear to all staff involved that you have distinct issues and that workarounds need to be found in order for you to get through this. Nobody with needs like this should be told they are silly and to deal with it "like everybody else" as in neurotypical people without those issues. Shameful.

A regular ECG should take 2 minutes tops. The only thing I can think of is a Valium or something like before for hand.

I looked up EMLA cream thinking the could use that on where the ECG electrodes would go. That is even a bigger production. You have to apply the EMLA cream 2 hours before hand, and the numbing lasts for 4 hours total. You also put plastic patches on top of where the cream is applied. People have told me the cream also burns.

The problem with a general is (in the US) you need an anesthesiologist present because you will have an air way put in. I can't imagine them doing all that for those minimally invasive procedures.

If the issue is cardiac, in the States you could push for a cardiac MRI with sedation. I doubt NHS would do it unless you are in total heart failure and need surgery immediately.

A warning about pill sedation. Have you had it before with good results? Some people get the opposite affect where instead of sleepy. It makes them less inhibited so they wind up fighting with everyone.

Could your support worker work with you on distraction techniques before hand? That might be enough to get you through a standard 12 lead ECG. 5 minutes tops if the tech can get the electrodes in place and you hold still.

I can not believe you are the only autist adult the NHS has every had with sensory issues. What do they do? Throw them into four point restraints and run as many tests as they can?

I have a sneaking feeling the doctors think you are just acting out for attention since you are not totally non verbal and are highly intelligent. That's the only reason I can think of why they haven't offered other ways of calming you down. They don't
believe it is totally out of your control.

I've had one of these tests and yes it only takes a few minutes. But the OP mentions that there is one they want to do that requires her to wear the electrodes for 24 hours. That's 24 hours of having to tolerate the sensory issue. There needs to be some kind of work-around found for that one to proceed, and there's no excuse for any doctor to tell an autistic person to "just put up with" something if they know it's an issue for them.

MRI's, EKG's, CAT Scans, PET Scans, radiation 24 hour electrodes with headware to keep head from moving, I have had to deal with them all the last year and half. Bieng a matter of life and death somehow I did them but it royally sucks.

The situation with the GP is very problematical. Maybe he/she was merely attempting to be reassuring. You have to let that doctor know what sensory issues are like for autistic people, and ask for some assistance to get through this testing.

You have not mentioned to us why you are getting this thorough workup. Like ASPartOfMe, knowing the reason and necessity for the tests may give you the motivation to put up with them, as miserable as it is.

A lot of times, doctors want to practice in a standard way so no one can blame them for not doing the usual tests, etc. Are you sure all of these tests are even necessary? What is the question they will be answering?

I once was told I had to have a urodynamics test. Having had that before, with a female technician who was very nice, I found it invasive but bearable. I changed health plans and my new urologist wanted to get another one done. I found the male technician who was going to do my study very unappealing and refused to go through with it. Discussing this with the doctor later, I asked "Do I even need this test?" and she admitted that no, I didn't.

Good luck to you - and good health.

Thank you all.

I have palpitations which can be very persistent. Also dizziness during them.

My GP is condescending and horrible. I may just bypass her and ask to see another GP. Or just change GP altogether.

A urodynamics test. Wow that's brave. I would never be able to do that.

I have tried clonazepam, lorazepam and oxazepam with good results. Diazepam makes me have a severe paradoxical reaction so it's on my notes not to give me diazepam.

I was wondering if intravenous midazolam would be am option for the echo? I'm going to have iv midazolam when I get my teeth cleaned and fillings replaced at the special care dentist.

I may put in a formal complaint about my GP tbh.

You really need to discuss the options for possible sedation with your doctor, as whatever they do might affect what they're looking for so only they can know the possible options. It's unlikely you'll get general anaesthetic, these days it's reserved for when absolutely necessary as it carries a risk of death. Local anaesthetics have come on a lot and general is rarely used.

Another thing to consider is having one of these tests done before deciding to have the other. Wearing the electrodes for the 24 hour EKG sounds very challenging. The echo should show any structural defects, could they decide whether to do the EKG until they have the results from the echo?

I suspect you may have to have someone advocate for you on this, since you aren't getting your GP to see things your way.

Good luck to you!

Your current GP sounds like an ignorant dumbass. Either your support worker or an autism agency educate him on the specific challenges autism causes with diagnostic tests or find a new GP. Your difficulties with routime diagnostic tests are well documented, a quick google search shows excerpts from studies on pubmed that you could print out and show your idiot doctor.

Any benzo should do as long as you don't have a reaction. Over here they typically give lorazepam for medical proceedures. Midazolam would surely knock you unconcious and probably require that they stick you in a recovery room which they may not have at the ultrasound clinic.

If you are going to report your doctor, by all means do that but wait until you get a new doctor first before you report your current GP.

Thank you this advice is all excellent.

I will discuss the options with another GP, hopefully the new GP will be better.

I will print out some reviews and articles on autism and basically give them to my idiot GP. Then I'll put a complaint in.