Recent diagnosis of neurocardiogenic syncope

[Mandapanda82]

Hi all I've joined here today with the hope of getting advice from people with this condition. Following a tilt table test I got my diagnosis of neurocardiogenic syncope. Yesterday I saw my specialist and was given midodrine tablets. Just want to know others experiences and any advice of living with this condition. Has anyone had to give up their job or have a pacemaker fitted or have permanent care from a loved one? Look forward to hearing everyone's experiences

[Hidden]

Hi, my daughter is diagnosed with the same and takes midodrine. She missed 2 years of school due to fainting and other issues which were thought to be due to autonomic dysfunction. Her health is now much more under control with the midodrine, high salt diet and 3 litres of fluid daily, including isotonic drinks. She still has problems, especially if she gets stressed, but rather than fainting 4x a day, it's only once a month or less which means life is almost back to normal! She's due to go off to university in September so we will see how this affects her. My fingers are crossed!

Good luck to you x

[Mandapanda82 in reply to Hidden]

Thankyou and good luck to your daughter too xx

[Deaddavid in reply to Mandapanda82]

I have NCS am on my third dual chamber pacemaker but, l did arrest when l fainted! I have had this for 23 years, midrodene and l did not work but l have slowly, very slowly improved so there is hope for everyone,. Know your triggers avoid them and things do get better

[Willow2627]

My teenage son has RAS and has been on midodrine for 18 months. Like Clare66's daughter he's also on an increased salt and fluids diet. Although he's still not completely seizure free the midodrine has made a huge difference to the frequency of full seizures which are far far less. He still has 'near misses' and fatigue quite often but can manage this and is getting on with daily life and school much better now.

Good luck and I hope the midodrine works as well for you too. X

[ashleigh-13]

I have had neurocardiogenic presyncope for coming up 15 years now. I do not work and have a carer. However I also have epilepsy fibromyalgia PCOS me/CFS arthritis asthma and a lovely long history of mental health problems and eating disorders.

I take the maximum dose of midodrine along with the beta blocker pindolol. It’s AMAZING to hear other people with this condition - I’ve never met anyone else with it. Now 27 years old and still have seizures or as I call them “crashes” very often, cannot drive etc . I feel like a lot of my freedom is taken, but with the right support and activities around me I can enjoy life. I have an appt with my cardiologist tomorrow and am going to ask if my crashes are RAS seizures??

Take care x