Vagal nerve and arthritis

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pianoforte
pianoforte Member Posts: 50
edited 26. Jun 2025, 13:31 in Living with arthritis

Hello, I have AS and I'm also having Vaso vagal episodes. I've read there can be connections, has anyone experienced these episodes and know how to deal with them. I'm quite anxious as it can happen when driving, teaching etc. Thank you.

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  • Anna
    Anna Moderator Posts: 1,201
    edited 24. Jun 2025, 20:10

    Hi @pianoforte , it doesn’t look like many people have experience of vaso vagal episodes, but here’s a recent thread where one of our members gives an explanation of why there could be a connection between the vagal nerve and arthritis:

    https://community.versusarthritis.org/discussion/64252/vagus-nerve

    Hope It’s useful,

    Anna ( Moderator)

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm


  • pianoforte
    pianoforte Member Posts: 50

    Many thanks for posting this!

  • Arthuritis
    Arthuritis Member Posts: 580

    @pianoforte When you say “episodes”, can you describe what happens in more detail? Are you referring to a sudden drop in blood pressure/fainting -Vaso Vagal Syncope (VVS)? If that’s the case you need an urgent GP appointment to determine the extent eg with a Holter monitor which you wear for 24hrs to 2 weeks and then determine the course of treatment or referral and in addition they will do other tests ecg, tilt table etc.

    The vagus nerve has many branches and does stuff all over the body. The splenic branch impacts autoimmune, but the cardiac branches are dealt by a different specialist. Your GP can then make an urgent hospital cardiology referral if you are referring to VVS and are worried about a fainting episode while driving, go with someone to A&E and explain what happens, they should see you fairly quickly.

    However as you have not provided much detail around what happens during your “episodes”, I am only guessing and erring on the side of caution, as you rightly mention, you def don’t want this while driving.

    Hope you get this post in time. All the best.

  • Trish9556
    Trish9556 Member Posts: 907

    Hi @pianoforte

    I have Epilepsy and OA and I have also had vasovagal faints. I would suggest you speak to your GP about this as soon as you can about your concerns. The first happened in 2018 whilst on holiday and in a heatwave going in and out of airconditioned shops. My blood pressure dropped rapidly, I felt dizzy and sat down. The next thing I knew I was in an ambulance on my way to A & E. The hosptal I was sent to really did nothing, no checks, not even my BP and eventually said I could leave, which I did.

    The second happened after a steroid injection into my thumb while awaiting a trapeziectomy. It was painful. I went home, had a bath, got out and promptly collapsed in a heap and came round being told I was going to A & E again as my BP had dropped again. This visit was at my local A & E and a blood test proved I had low potassium as well as the low BP and I was advised to eat 2 bananas every day. I hate bananas but do try to have at least one. My symptoms were the same as the first episode.

    I agree with @Arthuritis that a Holter test may be helpful which I believe you keep on for 2 weeks but a 24 hour blood pressure test may also help and the results would come through quickly.

    My problem is being Epileptic, all these incidents have to be reported to the DVLA and I'm lucky they both happened around renewal of my licence as I'm only allowed one for 3 years. The DVLA refused to believe these were not related to my Epilepsy and were not seizures despite my GP and hospital reports referring to them as faints and I had a huge battle with them to keep my licence which lasted about six months.

    If, after speaking to your GP he suggests you advise the DVLA of your fainting, you are legally obliged to. Not the news you want to hear but something you cannot ignore.

    Good Luck

    Trish

  • jamieA
    jamieA Member Posts: 866

    Hi @pianoforte

    I was a 'fainter' when I was younger - it first started when I was about 16. I got to know the way I would feel immediately before I fainted and was able to get myself sitting on the floor with my back to the wall before fainting. I was in my early forties when it happened once without warning one time and I managed to break my toe when falling. I saw my GP about my broken toe and when she heard how it happened she got me an appointment with a medical professor who was an expert in the field and he diagnosed vasovagal syncope. I'd also suffered from sinusitis since I was at school. He determined that the sinus in my kneck was swelling irregularly when my sinuses were infected and putting pressure on the vagus nerve and carotid artery causing me to faint. I asked about driving and was told that as I normally had prior indication of a fainting episode I didn't need to inform the DVLA. I had a sinus operation about 20 years ago on the sinuses above my eyes and I've never had an issue since even though it was a different sinus.

    Since the vagus nerve helps regulate inflammation there have been studies undertaken as to how this could be applied to inflammatory arthritis sufferers. These have been reported in medical papers like the Lancet.

  • pianoforte
    pianoforte Member Posts: 50

    Thank you very much for your considerate responses which are very helpful.

    My consultant has mentioned " vasovagal episodes" as I do not faint when it happens. I've also seen a GP specifically for this problem. My BP was measured and seems to drop significantly when changing position from sitting to standing. However, my concern is that I do get those "episodes" more often, sometimes (4 to 5 times /day) and they can occur when sitting without a specific body movement. I feel lightheaded and foggy, unable to speak and move my lips. I'm a professional musician & piano teacher, so it can be quite embarrassing! Sometimes, I can oversee the episodes but other times, they shoot up without warning. They can happen as I'm walking, driving, lying down in bed. Quite scary! I have read a few articles/ researches on the link with AS and inflammation in general but wondered if there were other people in this community group who experienced the same symptoms and if so, if they have medical support.

    With thanks.

  • Arthuritis
    Arthuritis Member Posts: 580

    @pianoforte Do your “episodes “ resemble this:

    https://youtu.be/6ing_Ibuw6s

    Such freezes can occur due to brief interruptions of oxygenated blood to the brain, it’s upto the hospital medical team to do a full work up to try and determine the cause. Unfortunately Mitch McConnell‘s episodes did not result in any publication of the cause, although medics speculate it might have been caused by a fall he had weeks earlier. A sudden pressure drop in the carotid artery will cause you to faint, but that VVS often has a warning minutes before, like nausea. However NOT fainting but losing partial function, especially the same function may point to a smaller narrowed blood vessel in the brain and/or TIA, which makes it all the more urgent that you get a neurology appointment, they can & will also do a cardiac check and refer you to cardiology after they have checked you out.
    This is my best guess based on what I understand you mean by “episodes”:

    1. Sudden unexpected loss of mental function but not fainting.
    2. Consistently the same function loss (“I feel lightheaded and foggy, unable to speak and move my lips.“)
    3. Also happens while lying down and without a specific movement
    4. Unexpected and 4-5 times a day

    Unknown history of falls or when this started. Assumed recent.

    Unfortunately the diagnostic devil is in the detail (history and exactly what happens/felt), and neurology will need to know this.

    I suggest neurology because they are often the smartest and keen on investigating to depth.

    All the best. Don’t delay or get fobbed off. 4-5 times a day is serious enough for Neurology to take the lead.

  • pianoforte
    pianoforte Member Posts: 50

    Many thanks Arthuritis for your detailed response. That's very kind of you!

    When my VV episodes happen, I can move but since I have them for quite a few years, they are much more frequent and inhilitating. Sometimes, I just can't speak, move my lips, they get frozen, tetanised. I can definitely say that the VVE have worsened. I have spoken to GP, nurse about it but they have not suggested any further investigation. I think I'll contact the rheumatology nurse and see what she suggests. I hope I'll get ome explanation.

    Thanks again.

  • Trish9556
    Trish9556 Member Posts: 907

    @pianoforte

    Have you actually asked your GP about driving? If you have been having these for quite a few years, it is a conversation you must have. I suggest that you ask the specific question and check the DVLA website to see what it says about vasovagal (syncope) incidents, especially if you have ever felt these coming on while driving - even if you haven't it is a converstion that must be had.

    Trish

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