I was diagnosed a couple years back with IST after I was in hospital with suspected myocarditis after a viral infection. I am only 18 now and it has changed my life dramatically. I used to be a really active person, playing for three netball teams but now I hardly do anything, even just walking is difficult sometimes. I’m always tired and get short of breath too as well as occasional chest pain. I was put on Ivabradine and now have reduced to 2.5mg twice a day. It did really help to reduce my heart rate as it would just shoot up to 170-200 just doing minimal exercise. I had a 10 day ecg monitor on not long ago and it finally recorded these thumping ectopic beats I have been struggling with recently. It recorded over 6000 palpitations and an episode where my heart suddenly went to 170bpm and felt like the blood was almost short circuiting my heart if that makes sense. Not sure if this has developed due to the medication I have been taking...All my echos have come back structurally normal but I feel like what I struggle with on a day to day basis is not normal- and not sure if there’s something else as well as IST. My blood pressure is also erratic, especially when going from sitting to standing.Was wondering if anyone else gets thumping palpitations with this condition..???
Ectopics with Inappropriate Sinus Tac... - Atrial Fibrillati...
Ectopics with Inappropriate Sinus Tachycardia (IST)
Have you read the following useful info ?
Could some of your symptoms be associated with POTS?
my.clevelandclinic.org/heal...
Yes, I do think there is a lot of overlap between my condition and POTS. But the main problem at the moment is my palpitations and they’ve been getting worse and more frequent each year. Not sure if I’m starting to develop AFib...
First, I should say that I do not have IST or any of the symptoms you describe. I do have AF.
There are a few members here with IST, most have atrial fibrillation. There will be more on the Arrhythmia Alliance forum, and I can see you have replied to an old thread there. Some of your issues may be covered in the British Heart Foundation forum on HealthUnlocked.
Unlike this forum, AA is a quiet forum and it can help to send a PM using the Chat link above, once you have identified members by searching for relevant threads above.
I imagine your cardiologist will have identified the nature of your ectopics, and any runs of tachycardia. Many find the Kardia ecg device a useful way to capture elusive rhythms, providing a record for the medics.
I’m sorry I can’t offer you any answers, hopefully others with experience of IST will respond. Are you in the UK?
Good luck.
Yes that’s why I thought I’d try my luck with this forum. I’ve only just joined so I will have a look at what you’ve suggested 
Thank you for your advice, and yes I am based in the UK.
What are your symptoms with AF if you don’t mind me asking?
My AF is permanent. My symptoms are reduced exercise tolerance and uncomfortable atrial coupled beats. Still able to go to the gym.
First welcome to the forum and so sorry to see you having to struggle with all this at such a young age. Wish I could offer you some insight and advice on your condition but I have no experience to draw on. Clearly though your symptoms need further investigation.
Thank you. And that’s okay - yes I’m going through a lot of investigation at the moment but so far all my cardiologists have referred to me as a medical mystery and not too sure what to suggest... Some of them seemed to believe it will go away with age but it’s been 4 years now and symptoms only getting worse - hopefully my new consultant will give me some answers....
I posted recently on PoTS with quite a few links so maybe look at that post to see if anything resonates with you?
Chronic fatigue with cardiac issues can also be caused by Mytrochondria dysfunction - please look at my recent post on D-Ribose & the book by Dr Sinatra - link is on the post. There is a test but only 1 doctor I know of will be able to test for it - Dr Myhill - I’ll post a link to her site. & to my post.
Many of these issues are often caused by nutritional deficiencies but unfortunately not covered by the NHS but obviously other causes need to be ruled out by your Cardiologist’s - who unless exceptional - may not know too much themselves.
All I can say is that by doing your own research - being an active agent in your own health - by being prepared to make behavioral & lifestyle changes things can improve.
Hope that helps. Ask any questions & we will try to support you. You are so young to be dealing with this sh**
Best wishes CD
Thanks CD, and yes I think I may have symptoms of POTS as well which is quite common with my condition.
Thanks for all your advice, I will have a look and keep up to date with your posts.
Luckily I have private medical insurance so am able to see the best cardiologists but still no official answers yet! But as you say I will do a lot of research myself to find out more and see if anyone else has similar symptoms I can talk to.
Really appreciate your support and it is hard trying to cope at such a young age but am just trying to adapt to my new normal.
Abbie
PS - watch your sodium levels - if you have PoTS then it is recommended you increase salt intake - with advice oh your doctor & do keep VERY well hydrated - 2-3 liters of water daily.
Hello
First up ..good news that your heart is structurally in good shape !😀 I have some know ledge of heart problems through family ,but not yours specifically. However,a strong,healthy heart has much more on your side..hoping your erratic bp etc settles soon. One of my sons..aged 19 ,was badly affected by PVCs and very erratic bp...it was postural related ...knocked him for six,as we say, for months...sometimes the shock and fear add to our physical condition.Are you able to get support? If not...here is a good place xx
Hiya,
Yes it is, although they did say they were not sure if my aortic valve is bicuspid or tricuspid but they didn’t seem to concerned.
Thanks, and yes the fear did really affect me to begin with but am slowly getting used to dealing with it although it is still very scary!
I do have good support at home but I know my family are getting increasingly frustrated with me not being able to live my life properly. I hadn’t even thought to look at online forums but am glad I have found this to start getting support from others with heart problems x
Hi
I do agree with other posts here try and find out as much as you can. And see what specialist centre there is near you.You say your BP fluctuates with position change. If it drops when you stand your heart should beat faster to compensate. In POTS you get a increase in heart rate whilst your BP remains steady whilst standing. Have you looked at the STARS website it's linked to the to the AFA I think. Search 'syncope trust' and use the link heartryhtmalliancetrust. (If you type in STARS you just get celebrities!) Think I've managed to copy the link below.
Keep pushing, I'm afraid as a young person it's sometimes hard to get the help you need, especially if it's unusual.
That's why this and the stars site can I hope help.
I am a nurse and work with one consultant in Devon Plymouth who takes referrals do tilt table tests to help with a POTS diagnosis. There aren't many around unfortunately. (I have paroxysmal AF which is why I joined this forum)
Good luck - Amanda
heartrhythmalliance.org/sta...
Hi,
Yes I’ve been told that when I stand up my blood pressure increases a lot but when I’m just sitting down it goes quite low which may explain why I feel dizzy quite a bit. My heart rate does also increase when changing position but from reading about it, a lot of people with this condition struggle too.
Thank you so much - I will have a look at the website!
In fact my cardiologist is thinking of referring me to a specialist at Great Ormand Street where it might be a good idea to have an MRI and tilt table test - so will see if that happens.
Thanks Amanda,
Abbie x
Oh good I'm glad you're being referred on and getting more investigations. Tilt test is a simple test that should help rule things in or out. It allows for beat to beat blood pressure readings so they can see how it changes as your position changes. Along with changes in your heart rate. Hope it's not a long wait.
😀
Hi AMcDonald
When you reply to a thread, you are much less likely to get a reply to any question you may have asked.
This may explain why you had no response in Arrhythmia Alliance (AA) forum.
Can I suggest you copy and paste your very well crafted post here, in to the AA forum as a new thread. It is probable there are many members there with your diagnoses who simply missed your post, with it being buried in another thread.
Ah okay thank you - yes I will do and see what happens 🙂
if you have private health cover see If they will pay for you to see a nutritionist.. The BANT site is worth a look at.
Tachycardia
Awful night with heart & ectopics
Ectopics and exercise
Ectopics or ?AF 
Tachycardia 
