Vaso-Vagal Discussion

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Re: Still being told Dr. have no idea what it is.

From: Becca


I had a tilt test done (Oct 2003).

I was told by my doctor that I would pass it (have no symptoms) and this would prove without doubt that my problem was psychiatric. I failed the test and he still said I was psychiatrically ill! I was given the diagnosis of VV, which was explained by him in brackets as being 'simple emotional fainting'. In my case this is definitely not true, my VV is caused by standing/sitting for more than 10 minutes and also exercising, I can be out for 10 minutes and when I come round I cannot move my hands and feet which are blue. My emotions are not making me lose consiousness. After I had my test done my condition was much, much worse and I now have a heart murmur as well caused by the test (I've collapsed in the middle of roads and down flights of stairs), before I could return to normal within 30 minutes, now it can take days. The doctor who sent me for it discharged me and told my GP that I was 'making myself ill' for attention and if I continued to do so I was to be sent to a psychiatric ward (as 'the psychiatric illness' was too severe for outpatient treatment).

In otherwords he had decided I was making it up, had recorded it in my notes and then didn't have the courage to admit he was wrong. He has even contacted my new specialist saying my tilt test was 100% fine. Luckily my new specialist after speaking to me about what happened believes me not him!

I am now seeing a different specialist, but everytime I see a GP I get asked if I am 'still being silly and making myself collapse', even though my specialist is trying to help and thinks differently.

I think the theory behind the test (from what I have been told and learnt from literature about VV) is that it puts pressure on the vagal nerve, and a positive test shows that the nerve is causing the problem and going into some kind of spasm. The grand theory is then the docs look at what is causing the nerve to have these problems (I know of someone who had VV caused by arthritis in the neck for example). A passed tilt test (no symptoms) is supposed to signify an underlying anxiety disorder (according to my new specialist) if epilepsy has been removed from the picture and would then require psychiatric intervention.

Though in my experience, doctors have no idea about the test anyway. My new one is the only one I've had a sensible conversation with about the test. I've been told it is for all kinds of wierd and wonderful things, from a physical test for psychiatric illness(!) to an ear test!

The best way forward is to create a vasovagal diary, and record ever single time you collapse EXACTLY what you were doing and how you were feeling. I did this and it helped me to identify what was triggering an attack and to avoid or minimise the chances of being caught by one. It was also a useful aid to give to my specialist (the one I'm currently seeing). I only wish I had done this before the tilt test. At least then my condition wouldn't have be made so much worse by the test and possibly medication could then have cured me.

I wish you good luck. Although my life has changed a lot because of this condition I am at a stage where I no longer yearn for my old life and recognise this as being a new part. Don't get me wrong I do want to get rid of it, it is so annoying having to sit on a stool in queues and carry a stool wherever I go but I am now used to it.


This web site is not a substitute for a thorough medical evaluation and diagnosis of your vaso-vagal type symptoms.  Medical treatment and diagnosis is the only acceptable initial response to these serious symptoms since they might present from any number of life threatening and treatable illnesses. It is for you and your physician to rule out more serious illnesses; Please don't use this online forum as an alternative to getting responsible medical attention and being under the care of a physician for the duration of any unknown, suspected or dangerous vaso-vagal syndrome symptoms.
Last changed: June 22, 2007