So just recently I've been deteriorating and I collapsed a few days ago with tachycardia and palpitations. They think I blacked out when I stood up. Has anyone else experienced this?
Also as I'm needing more help, my husbands working and I'm now frightened to be home alone I'm considering using direct payments to get a personal assistant, does anyone have any experience, ideas or suggestions around this?
Thanks in advance x
Hi there
Yes, I have experienced severe tachycardia with my heart rate going over 200 beats per minute. This is a very dangerous conditon because it can cause strokes and heart attacks.
I had to go into hospital for an operation to have a part of my heart lasered to stop the attacks.
I can explain this in detail to you, as explained to me by my heart consultant if you are interested?
Palpitations is when you feel as though your heart is pounding in your chest. I am not a doctor, but to my knowledge this is not a dangerous condition and is mainly caused by anxiety, but not always. They can be controlled by beta blockers if it's really bad.
I am a long term sufferer of Fibro, CFS and other conditions.
For me personally, tachycardia and palpitations feel completely different. I have had many attacks of both so do have personal knowledge.
Have you seen your GP? If not I would make an appointment as soon as possible.
Lu x
Yeah GP did a load of tests to try and work out what's causing it but all came out negative. My ECGs show normal heart activity just really fast. My pulse goes up to 160 just from standing up!
I have to have a 24 hr ECG with alert button to see if they can catch anything that doesn't show up on a normal ECG. I keep having dizzy spells when standing and chest pain with the palpitations which is why I was in hospital but they too couldn't figure out why so discharged me unable to stand with no progress whatsoever 
luckily I've managed to stand and walk again now but still dizzy and having the pain and palpitations.
I have chest pains and palpitations all the time. It's just become a horrible way of life for me now
Chest pains can be part of Fibro, caused by inflammation in the chest wall.
It is good however that you are having all the tests that you need.
I can explain the reason I had the tachycardia if you like?
Hi. Was your tachy all the time or only when you sat up or stood up?
My pulse 117 sat up 130-160 stood up all the time. Only in normal range when I lay flat. I get the palpitations on and off but the pain started after I collapsed and hasn't gone yet? I've experience all kinds of wierd and not so wonderful pain in my chest before but not like this. It's like when ive been tight chested with asthma but it's not my asthma if that makes sense?
No. My tachycardia was caused by a faulty artery in my heart, although I didn't know that at the time.
The attacks would happen out of nowhere. My heart rate was going over 200 bpm. One lasted 20 minutes and I ended up collapsing.
After my operation my heart consultant explained to me that 30% of women have this 'faulty' artery. It's basically an artery that is similar to a no through road. The blood diverts into the faulty artery, has nowhere to go and tries to get back up into the normal system, which triggers the attack.
I'm probably not explaining it very clearly. Sorry I'm in pain.
I hope you can make some sort of sense of what I've said.
When I had the attacks the pain in my chest was unreal.
I no longer get the tachycardia attacks as my op was a success, but sure as the consultant told me, the blood occasionally tries to go down there but can't anymore so I sometimes feel I have an attack starting and then the feeling goes away.
Thanks for replying despite the pain. Can I ask did this problem show up in an ECG or not until you had an echo cardiograph ?
Thanks again .
Hiya
You're very welcome
I think it's important to share these experiences.
It showed up on my ECG but you obviously have to be having the attack during the ECG for it to show up
Sorry you have had such a frightening experience.
If you are considering using direct payments for employing s carer there are quite a few things to consider such as paying the employees In Contributions etc so I would get as much help and guidance on this as possible. Your local council probably have several companies in your area that heycan recommend and there are quite few food fact sheets out there written by charities for the disabled. There I also some guidance on the goc.UK site.
Good luck with everything I do hope they can find out what is causing this and put it right for you.x
hi Minx88x when you stood yp did your head start to spin if so i think you are suffering with dizzy spells i have them and it start as a kid i'm my 48 years old i would see a doctor and have your bloods checked for the amount of oxygen in you blood hope this helps take care BIGALAN
Yes but that's the first thing I thought of. My says are 96% (I'm asthmatic) this is good for me. I've had severe dizzy spells before where everything would spin but this felt different. It felt how I imagine having a heart attack would feel like. Wierd, bit thankyou for the suggestion. I'm attempting to go to work today so I'm strapped up to a heart rate monitor so I can sit my bum down if it goes above 135 as that's when I start to feel funny.
Hi I was like this man 2014 been on complete rest for the rest of that year started to pick up ,then got poorly again due to stress but not that bad ,if you rest you will improve , can't help on the financial front sorry didn't qualify for pip ,the social worker who assessed me said I need a helper but because I applied for pip ,they refused direct payment . I was home alone as I lived alone till last month ,but younger daughter came home from uni and stayed for four months to give me some support now my eldest has stepped in to help me . Hoe you get the help I know you need .
Big hugs
Chris x
I am so genuinely sorry to read this and it must have been quite frightening to experience this. I have never experienced this kind of thing myself but I want to sincerely wish you all the best of luck. Please take care of yourself.
All my hopes and dreams for you
Ken
Hi minx
I am in no way trying to offer a diagnosis or anything like that but I am sure I have read on here of others with some similar symptoms to yours......try looking up the symptoms of something shortened to POTS.....I also suffer from SVTs and raynauds and had many ECG and heart traces etc years ago long before fibro was diagnosed in June this year...... I was looking to see if I could find a link with SVT and fibro thats why I remember about POTS....palpitations can be very frightening so I can imagine how hard it is for you to deal with your symptoms..... I can go months with no symptoms then wham....the palpitations can wake me up and can last anything from 10 mins to several hours....hopefully I havent gone against any guidelines offering this advice please let me know if I have .
Hi, Thanks for your reply. no I don't think your saying anything dodgy. I have heard of POTS but like you wondered if this could be fibro related. I'm still waiting for my 24hr ECG but managing by wearing a heart rate monitor all day and sitting my arse down when my pulse starts climbing past 140 or when it starts tap dancing!
The NHS choices give really good info about PoTS have a look at it .... my palpitations are definately not like what you describe I have never blacked out or anything like that .... hope you get a diagnosis soon .
Coronary heart disease.
Fibro and MS
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