Hyperventilation and MUS

About 8 - 10 years ago I suffered from severe hyperventilation. I was breathing roughly every 1 - 2 seconds. I couldn't hold my breath for more than 2 - 3 seconds. My chest hurt. I was constantly sighing and struggling to get more air into me. My lungs felt over-full, and yet emptying my lungs and then breathing "normally for me" instantly ended up with my lungs being over-full again. It was getting to the point where I was sometimes panicking a bit. Note that the panic followed the hyperventilation. I didn't panic and then hyperventilate. I didn't suffer from panic attacks.

I went to my doctor, found my O2 levels were normal, and was referred to a respiratory nurse at the surgery. The nurse worked in several surgeries in the area, not just in my surgery. I wasn't convinced that it was going to help, but nothing else was on offer, so I agreed to see her.

This nurse showed me how to do breathing exercises to slow down my breathing. The appointment took roughly 20 minutes.

I saw the nurse one more time, a few weeks later, just to check on progress, and that appointment lasted about 5 - 10 minutes.

The breathing exercises were unpleasant for a while. I felt like I was being suffocated. But I persisted, and gradually began to see results. In the end I would describe what happened as hugely successful, despite my initial pessimism, and my conviction that I was being fobbed off.

I still suffer periods of mild hyperventilation but I just start my exercises again to slow things down. I never mention the problem to my doctor, and I haven't used up any more NHS time or resources on the problem.

There are several possible causes for the triggering of my hyperventilation (all physical health problems), plus smoking was an issue. I was either smoking heavily or had recently stopped, I can't remember now. Several attempts at stopping smoking had triggered hyperventilation before this, so my problem wasn't unusual for me.

I have discovered since reading about Medically Unexplained Symptoms that hyperventilation is now to be considered an MUS. I'm guessing that it will be blamed on panic attacks and that the treatment will be addictive anti-depressants and/or anti-anxiolytics, and CBT. The waiting list to be seen will probably be many months.

Helpful exercises to actually allow someone to deal with the problem themselves don't seem to be on the menu any more. Sufferers will cost far more to treat, and they won't be cured. They may end up on anti-depressants or anti-anxiolytics for life.

Oh, what fun the future is going to be.

 

This post on the ME Association's Facebook page caught my eye this morning.

Over the past few days, I've been looking into the history of research into ME/CFS/PVFS in the late 80s/early 90s (in relation to support groups). But one item mentioned hyperventilation [Rosen et al 1988], so I thought I'd follow it up.

It seems it comes from Da Costa's syndrome, also known as Effort Syndrome, and has been frequently associated with anxiety, although it seems much more closely related to POTS.

It seems it is one of the things that Wessely and co [Bogaerts et al; Bazelmans et al] have looked at over the years, but always put it down to anxiety and leave it there.

More recently, Natelson has been looking at this, so this work might be worth following up (see here: https://phoenixrising.me/treating-c...ntilation-test-chronic-fatigue-syndrome-mecfs).

[I'll add more refs here as and when I find them] vvv

This search in Google books

Rosen et al. Is chronic fatigue syndrome synonymous with effort syndrome?
Rosen et al. Magnetic resonance muscle studies.