Neurocardiogenic Syncope - would be good to talk to others who suffer with NCS. Anyone here?

I've suffered for over 8 years now. Originally prescribed midodrine, but it gave me terrible headaches, so eventually changed to fludrocortisone (Florinef). Got to say that the 'fludro' works great and I get very few side effects. Seems to work well keeping me upright too! I do get quite a few 'pre-syncopial' moments though! Last time I passed out was around 5 months ago, so I think the fludro is suiting me.

Anyone else using fludrocortisone or have a bad reaction to midodrine?

4 Replies

  • Hi, I've used fludrocortisone for years with quite good effect. I also take midodrine. The fludrocortisone works best with plenty of fluids and salt intake (I take slow sodium tablets as well as dietary intake). Very glad it seems to be helping you! Fantastic news

  • Hi there. Yes, my cardiologist suggested that a fludro and midodrine combo might be a good idea going forward. To be honest though I'll try and stay away from the midodrine for as long as I can!

    Do you get any side effects from either drug?

  • I don't have a diagnosis but I've got a lot of syncope symptoms and have Nero problems. What symptoms diagnosed you?

  • Have you been to see your doctor? What did they say?

    Initially for me it was passing out. Usually when I did things such as run up the stairs, or a sudden fright sometimes brought it on.

    Once I'd spoken with my GP who mentioned NCS, a many other things fell into place. I was then able to attribute sudden sweating

    when seated in cool environments, feeling lightheaded, poor concentration and a severe inability to deal with hot environments - which really brought on some severe pre-syncopial episodes. I didn't faint all that often - around 4-6 times per year, but had multiple daily pre-syncopial symptoms, and still do.

    Generally speaking, when they happen I feel lightheaded, then I'm suddenly very aware of my heartbeat, which feels like it's slowing down but getting so much stronger. It sometimes feels like my heart is going to burst out of my chest or throat!

    I've got used to dealing with these now and usually know how to avoid bringing it on, but it's not guaranteed!

    The arrhythmia nurse at my cardio clinic has given me some good coping techniques, so those along with my fludrocortisone have given me good control over things... for now!

    Regarding diagnosis, my GP referred me to cardiology and they performed a few tests. 48 hour tape, echo etc, but they came back all clear. It was the tilt table that confirmed my NCS. I went out like a light with the worst pre-syncopial symptoms I've ever endured.

    What sort of symptoms are you having?

You may also like...