vasovagal syncope fainting - anyone else have this?

[egre]

I’m in a Gpa flare up of extreme nasal, breathing,coughing, choking episodes, reflux especially at night.I went to go to bathroom in the morning and without warning went down flat on my face damaging an already damaged nose.Also facial bruising. Thankfully I don’t live alone and the alarm was raised and ambulance called. I had passed completely out. Have had this once before. No explanation or treatment via a&e. only very frightened of covid risk while there. Said I was dehydrated and given drip. Was set home later. Still shaken up and curious about it. Previously the rheumatologist said the vagus nerve among other things regulated breathing and if out of sync could disrupt it. I am writing this through the fog of high dose prednisolone so it may sound a bit muddled. I had Rituximab x 2 in June but prior to this had not had since 2020 due to increased risk of catching covid and death. Back then there were no antivirals.

[Investigator1]

Hi egre, you have been through the ringer that’s for sure. I can’t believe they stopped your Rituximab during Covid, yet they started me in 2020 and have continued since. Who’s making these decisions. I haven’t had any fainting but my Mam who had GPA in 1997 it was called Wegerners back then (yes I have been told loads of times it’s not hereditary) same age as when I got it, anyway she had bouts of fainting, that damaged her nose and they told her to stop drinking alcohol but she wasn’t a drinker.

[egre in reply to Investigator1]

Thanks for replying. Thanks to everyone else. If I reply to you they can all see as well.I am seeing Gp later this week so will take up issues but surgeries are merging so it’s in a state of chaos.

It s impossible to get in touch with anyone at Rhuematology. No facility to speak or email. I dont know what they do all day. I have confidence in the Consultant but don’t know if he’s aware as A&E wont contact specialists regarding any intervention there. So I’ve had to resort to writing a letter to him stating impossibility of contact and about the faint.

To Mooka the nurse helpline is not working and when it does is constantly engaged. All other avenues to Rhuematology have been blocked. This is gatekeeping at its worst. I could complain but don’t have the stamina. I have a planned appointment with the Consultant on 17 August so if all else fails will make sure I have a contact with him somehow.

[AmyS1]

Make sure you have an urgent review with a specialist vasculitis consultant. Call UK Vasculitis helpline if needed.

[Telian]

You’re going through a rough time aren’t you. I would speak to your GPas you’d like/ should know what happened there. My husband had a VS episode. He was enjoying watching his football team on tv when suddenly he went quiet and slumped back in his chair. His eyes remained open because I spoke to him and I held his hand because he clearly wasn’t with it. A few seconds later he came round and had no idea what had happened. He had no pain anywhere but felt extremely tired. Our GP sent him for tests to eliminate a stroke. He had in fact had a mild TIA which fortunately left no lasting damage. It doesn’t mean you have but hope you get to the bottom of what happened to you.

Best wishes. 🌺

[Mooka]

Can you contact your consultant either via secretary or specialist nurse? I think a word with them may put your mind at rest. At least give the helpline a call. I hope you get your flare u dear control soon.

[Tootsie0405]

My son and I both have vasovagal syncope, and I just recently found out that my sister-in-law was diagnosed with it as well.

My son and I used to faint when we would get too warm; when it was hot out. Staying hydrated and taking electrolytes in the summer helps.

I know it sounds strange, but wearing tight, stretchy pantyhose used to help me.

We haven’t had any episodes since we started working out and focusing on building lower body muscle strength, but then again we do try to avoid the heat. I also try to avoid drinking hot liquids because it does cause my blood pressure to drop (making me feel faint).

Oh! Also, if a room is too warm, which is the case at my elderly parent’s house, I feel I can’t get enough air and my blood pressure drops and I can feel the fainting sensation (vasovagal syncope) come on.

In short, ours is heat induced. Not quite sure what causes my sister-in-laws’ .

[egre in reply to Tootsie0405]

Hi Tootsie 0405Thanks for your reply. I'm curious to know if you have vasculitis and if so what sort?

Mine doesn't seem heat related and I had no warning of fainting. It was all very sudden and no dizziness or anything like that. I knew something was wrong only a split second before it happened.

The impression I got from the medics was that it was an isolated event which was probably not going to happen again.

I've not had it since and remain in remission.