Vasovagel/ Neurocardiogenic Syndrome

Hello I'm a 44 yr old Female who has just been diagnosed with this condition, I have been initially put on a 1 month trial of upping my fluid 2.5 litres and My Salt intake to control the issue.

I've only been doing this for 3 days I've been drinking up to 3.5 litres and 3-4 grams of salt how do you get the correct balance with the two?

I've read too much water is bad & too much salt is bad so I'm confused.

Hoping this works as if not they're adding in a drug.

I've had the following to Diagnose me:

5 day ECG holter

Echocardiogram

Tilt Test at Papworth

Initially at my Tilt Test at Papworth at 38 mins into the standing part I was Pre syncope as they had to stop the test, my HR steadily climbed from 80-120bpm then it dropped suddenly to 40bpm at the exact same time my BP dropped to 105/50,

After the test the technician said he'd never seen anything like it! He then said I thought you had POTS but both rates don't drop like that so I don't know we'll have to go and chat to someone about your results.

This is Papworth the Heart Hospital which left me wondering how come they haven't seen things like this before? If Vasovagal is so common??

Eventually they said it was Vasovagel on the report.

I have Bradycardia I assume I'm waiting to speak to my GP for further info.

My Heart is still doing the same dropped to 50 bpm yesterday whilst I was gardening. But with no syncope symptoms just extreme tiredness after for several hours.

Hope this post isn't too long and that I can get some advice.

Thanks

17 Replies

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  • We would normally advise 3-4 pints of water in the first few hours of the day, then enough to keep your urine clear (like lemon juice). If urine is yellow then this is an indication that you need to drink more. Salt should only be increased after discussion with your doctor but never if treated for high blood pressure.

    If you have consciously always avoided salt and never cook with it, then try adding to your vegetables and perhaps having a packet of crisps. The combination of water and salt can help to increase blood pressure if this is the problem

  • Hello, Thanks I contacted my GP this morning they have taken me off Doxososin (for High BP) and want me to see them in a week to have my BP taken in surgery as they don't trust my Withings Monitor that works with my iPhone!

    My history is that My BP became high, they put me on several BP medications the whole gambit in fact, channel blockers, ace in hibitors, etc etc I started to faint so I saw a Cardiologist several years ago prob 6 yrs ago now he told me that my BP moved up and down upon position and that i was not to let 'them' the GP's to ever give me BP meds this was because I fainted and referred to me as ' you're what we call a fainter' (very old school and has since retired)

    I have then had issues where my BP was high again and the only thing they had left to try was Doxososin at 2mg twice a day once in the morning once in the evening to control it (and to be honest it wasn't working well either)

    Since I started this drinking lots of fluids so far averaging about 3 - 3.5 litres a day and more salt my BP has significantly dropped to about normal 111/78 where it was sitting at 150 or 140 / 90

    Is there any evidence to suggest that NCS/VVS makes the BP go up and down as part of this syndrome?

    As I'm now wondering if this is the reason I've had issues with them one minute saying I have low blood pressure and the next saying i have high.

    I've had a history of passing out but each one was taken as just a faint, i think now with my history and the recent tests and the amount I've had this has finally been diagnosed as NCS.

    I'm just learning about this and have one other question, when I exert myself my HR goes down is this also a 'typical' sign of this syndrome?

    Thanks for all you help, I have just become a friend of STARS this website is invaluable.

  • Hi Moon Baby, I'm in the U.S. and also have had many of the symptoms you described starting back in 1998. I am currently drinking lots of water and monitoring my salt intake. In addition, I have a Biotronik pacemaker and taking Midodrine, and Atenolol. These all help to control the syncopal episodes, however they still occur sometimes resulting in concussions and abrasions. I've been told that it will never go away, just try to control it and live with it by not bending when I feel dizzy. Sorry I don't have better news, but I thought it would be comforting to know that you are not alone. I was originally diagnosed at Johns Hopkins Hospital in Baltimore, Maryland.

  • Thank You, looks like it might be a long road then, appreciate your reply :)

  • Yep - you describe vasovagal syptoms spot on. I have this, am on slow release salt and must keep fluid up! You must watch the clips on S.T.A.R.S site as for me it was my eureka moment when I finally got it.

    Have you done a 24hr urine test - this will tell them if you are getting enough salt.

    Salt acts to hold fluid in your body.

    Karen

  • Thanks Karen I'll watch the clips :)

  • Hi, I have the same diagnosis and was given a pacemaker.

    There is an algorithm which can be used on pacemakers called "rate drop". This setting detects when your heart rate suddenly drops, and kicks in to prevent fainting. This may be useful to you and something to discuss with your cardiologist. An electro-physiologist would be the type of doctor to consult.

    Bradycardia often goes alongside neurocardiogenic syncope and a pacemaker can help with this too.

    The salt and water treatment won't help with sudden rate drops. It simply raises BP.

    If your BP is falling at the same time as your heart rate is dropping, this would suggest that your heart rate is pulling your BP down. Is your BP normal at all other times?

    If you are not fainting when your heart rate drops it may be worth discussing this with your consultant.

    I am currently disputing my own diagnosis of neurocardiogenic syncope as I was never fainting and the salt and water treatment you describe sent my BP sky high. Your consultant may be being cautious....if pacing is an option for you. Personally, I would be pleased about that. Make very sure that the diagnosis is right and your symptoms merit the treatment. Pacemakers are difficult to remove!

    Hope this helps

  • PS: You also need to google the medications you were prescribed to find out if they can cause arrhythmias or high/low blood pressure.

    Most heart meds lower blood pressure and this can cause syncope. Some can cause arrhythmias. It is possible that the heart drugs caused the problem with your blood pressure. In that case your doctors may have been treating something that was caused by the meds and your history of fainting may not be that relevant if there was an explanation for it.

    e.g. I have needle phobia - but this was construed in the light of the fainting which took place when I was placed on heart meds. It wasn't a syncope disorder per se. I was just prone to fainting if afraid which is a "normal" response.

    Look closely at your history of fainting and examine the reasons for any faints.

    Chronotropic incompetence is something else to google. This goes alongside bradycardia often and can lead to the exhaustion on exertion that you describe. This condition stops the heart from responding adequately to exercise. Pacing can help this too with a setting called rate response which increases your heart rate when it detects that you need a boost.

    Did your echocardiogram mention this? Take a look at the report.

  • I haven't been shown any of my reports other than tilt test as I was wearing a 5 day holter and had to take a copy back to the hospital as they might of panicked seeing that on the holter.

    My echocardiogram I assume was normal nothing had been said to me about that.

    Doxososin states it just widens the Blood vessels which is going against the advice of all the fluid I'm taking on to raise my BP.

    I've had 'that' headache for the last two days but no other presyncope or syncope.

    My fainting history is 3 this year one in which I was rushed to hospital by paramedics as I passed out in public with a massive headache my tongue went numb but my vitals returned after they checked me for stroke at the hospital I was released with them telling me I was stressed.

    There appears to be no other reason for me fainting.

    (I have a job where I deal with a lot of scary things & blood etc and it doesn't bother me)

    Confused

  • Hi

    I'm actually really confused to be honest.

    I've had one consultant quite a few years ago say I have low BP & not to let GPs give me high BP meds as my BP fluctuates. A few years later I had consistently high BP 150/90 average so they dismissed his remarks & said this was some time ago now we'll put you on high BP meds I've tried all meds and none work really I'm currently on Doxososin 2mg twice a day morning evening to try to control it. My BP sits at 140/90 now which is still regarded as high.

    I got my NCS diagnosis started fluids and my BP went down whilst on meds to 111/75 averaging 120/79 so normal range.

    After advice about Salt & being on high BP meds from STARS I spoke to my GP they said to come off Doxososin for a week so I did for a couple of days but my BP has gone back to 140/90 so I've started taking Doxososin again.

    I have one of these Apple Watches that monitors my heart rate throughout the day and my HR is still dropping to 50s yesterday with no symptoms. Sometimes excretion makes it drop sometimes it doesn't.

    I asked my GP if I had Bradycardia he said no, but the 5 day holter recorded ectopic beats as I get palpitations.

    My HR has dropped to 34 on my watch with no symptoms, (40,50 as well)

    When I originally saw my GP whilst in his surgery he took my pulse and my HR went to 40bpm & stopped for approx 5-10 seconds.

    So I'm completely confused as to how they're saying I haven't got Bradycardia and why is my heart still doing this?

    my Tilt test showed First 5 mins laying down nothing tilted upright my HR went from 80bpm slowly rising to 120 then suddenly dropped to 44bpm my BP was high on the table 140/90 it dropped same time to 111/54 in my report bradycardia is mentioned.

    My consultant has passed me back to the GP so I think I'm unlikely to get a referral back to see him.

    I'm lost and worried that this just hasn't been looked at correctly.

    Is this normal for this condition?

  • Your history is incredibly similar to mine, but I didn't have high BP - apart from on salt and water treatment when it went to 140/90.

    Mine was possibly caused by an antidepressant - Escitalopram - which can cause arrhythmias, including bradycardia and tachycardia. This is why I ask about drugs. I should google the side effects of Doxososin. I know nothing about this drug btw....just cautious.

    NCS is associated with low blood pressure and sudden drops in heart rate. Bradycardia can be a feature of it.

    Bradycardia can also develop and tachy-brady symptoms can develop which gives fast and slow pulse readings in bursts. It is very confusing.

    I have been paced for 7 years and I am now developing some tachycardic arrhythmias.

    I also had pulse readings down as low as 34 bpm and lower readings at night - down to about 25 bpm. I was asymptomatic.

    However, on the tilt table I passed out after 10 seconds and my heart stopped, before starting again.

    Prior to all of this, and whilst taking the drug, I had one faint - on the loo (excretion like you). I had no warning, just woke up on the floor.

    The main vagal nerve runs down your spine, alongside the colon. Pressure here if the nerve is sensitised can cause a faint.

    Hope this helps a bit...and happy to stay online and chat if it helps. I know how confusing it can all be. (I was 43 when it all started too!)

    x

  • No it helps to know that I'm not going crazy by being told something that I think is right ie bradycardia as my HR also races too I can be seated and it'll go from 65 to 112 in a second then back down.

    But all my faints have been whilst I've been seated on chairs.

    Why the results are not showing any bradycardia or tachycardia according to my GP I don't understand.

    The Tilt test guys said initially they thought I had POTS but my P waves weren't visible so came back with VVS/NCS

    Thanks for your input I'll speak to STARS see what I candi with my GP x

  • Drugs which widen blood vessels (dilatory effect) should be avoided if you are fainting. Low blood volume (caused by widened / dilated blood vessels) causes fainting as this causes blood pooling in the extremities and the blood vessels cannot "push" the blood back up to the brain.

    Your drug may be causing the fainting.

    I too, have short pauses in my cardiac rhythm. These are referred to as "ectopic beats" and "junctional escape rhythms" in my notes.

    I should ask for a copy of all of your tests and go through each of the medical terms contained in them with your GP. I have only just done this after 7 years and I have learned a great deal!

    x

  • Yes I will I now want to see the reports for my self - Thank You for the tips :)

  • One more thing.....if you have high BP at 140/90 - I would think twice about the salt and water treatment. The advice from the STARS administrator above was NOT to take salt if you have high BP.

    I should ask for some advice about your heart rhythm and consider the effect of the drug on your fainting. This may not be NCS. The high BP doesn't sound consistent with it.....but you need to ask to see an electro-physiologist at Papworth to verify this.

    Good luck and let me know how you get on.

    x

  • Great advice thank I will let you know

  • When I was diagnosed I was told it was quite common and "classic in young women". yet I have not met anyone else with vasovagal syncope.

    I literally drink 3 litres a day and just add salt to whatever I can, not too much as it will taste gross. i think dont worry too much about how much salt you are adding, just add it as and when! but maybe dont add it in every meal you eat. i'm afraid i may have confused you now. but this is what i do. also try foods that are naturally high in salt but low in fat. olives are a no-brainer. Hope this helps X

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