I have been suffering heart palpitations, chest pain, breathlessness and tiredness for the last 3 years and was hospitalised over Christmas. I had a number of ECG's as well as an ultrasound and a tilt table test, all which revealed nothing. I had a reveal linq loop recorder fitted in February 2019 and had a number of episodes over the next 2 months. In April of 2019 i received a copy of a letter from the hospital to my GP telling my doctor to prescribe me 2.5mg of Ivabradine twice a day. This has for the most part been working as i have only had about 4 episodes since October 2019 up until today which is far better than the 2 episodes a month i was having before that. I went for another appointment with the technician and once again 'nothing exciting' showing up as they told me.
I am just so frustrated that i still don't have a diagnosis and it is affecting my daily life. I get tired and breathless just walking up stairs. Albeit the medication is helping a little bit but i wasn't even told why i was put on that medication in the first place! Walking for long periods is just impossible and anything with a slope takes my breath away.
How long did it take for other people to get a diagnosis? Some days i just want to scream and cry! I know these things can take time but i don't have another appointment now with the technician until October 2021!
My doctor has already ruled out anxiety, SVT and POTS so not quite sure where the hospital are going to go from here. My recorder lasts for 3 years so what happens if nothing has been found by then, will i just be discharged?! Just rather fed up at the moment and had to get it all out to people that might understand my situation.
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HannahCB92
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Welcome to the forum, though not somewhere you ever wanted to join!
Trying to get a diagnosis sometimes is so very difficult and you are so young and should be out having a great time( Covid permitting) ! It’s no wonder you are frustrated.
We are here to listen to your worries and to lend you a shoulder to lean on when you need too. You can vent as much as you like!
There are a few members who are also struggling to get a proper diagnosis so I am sure they will be along to gave you some support.
I haven't had any thyroid tests done that i am aware of. When i first went into hospital they did an ECG and took bloods and i was on a drip for 13 hours. They said i had a deficiency (i can't remember what) and i took a dissolvable tablet in water twice a day for one week which just tasted like salt. The specialist i saw at that time said that the deficiency was likely unrelated and at that time suspected SVT. That was the only time i had some bloods done in the last 3 years. Other than that i have had an ultrasound, tilt table test and the 48 hour heart monitor and 2 more ECG's and that is all i have had with nothing turning up on the results.
Yes that was it! That is what i had the drip for! Told me to make sure i was eating more fruit and non fat yogurt which i do anyway but have increased my intake since then.
It is relatively simple to diagnose the type of arrhythmia you have if it is caught red handed.
The difficulty is finding the cause and this is rarely found.
I have had AV node re entry arrhythmia for over 30 years and have had all the available tests done over and over. They found that my high red blood cell count could be the culprit but after a few venesections that got it sorted, I still have AVNRT.
I have I'm sure said this before and I maybe completely wrong but having cared for my husband post serious heart attack and accompanied him to 6 different hospitals for different procedures and seen him come home better than he was when he went in, I am questioning the level of care I get as a heart failure patient. True he was in his 40's and I'm in my 70's (late) but he saw so many consultants even at the Royal Brompton not our local. He always seemed to come home with a new med. Now my bnp is over 4500. I saw a cardiologist when in hospital 3 years ago. Im looked after by the g.p. and h.f. nurses with huge gaps in between appointments and no face to face. Ive asked to see a consultant but they are too busy. I really feel despondent. Like its not important. It may be that the pandemic has made things worse . So I spend my time trawling for knowledge that might help me. Like why are my oxygen levels dropping? They are consistently in their 80'. So I email the hospital as suggested but its not accepting emails. I do an email to my gp as suggested and after pages of questions it told me to phone 111. If any one has anything upbringing to say I would like to hear it.
I sympathise with you as all my routine tests came back giving me zero answers
I kept advocating for myself as I had all your symptoms and eventually I also started to experience severe weakness which took away my life in a blink of an eye. I was diagnosed with a myocardial bridge in 2016. It continues to be an extremely difficult journey. I wish you well
do you have digestive problems? These may be the cause, the vagal nerve is disordered. I also had strong palpitations when I went to sleep, recently I discovered alone that probiotics, digestive enzymes have improved my condition and I no longer have palpitations. I wish you health!
I agree with whoever said to have your thyroid levels tested. I am getting mine tested end of this week. I think the issues I've been having this year could be attributed to my thryoid levels going into hyperthyroidism. I've been taking levothyroxine for years, but earlier this year I ran out of my generic medication from the US and have been taking a German brand (where I live now) of the same dosage. Pretty much all of my symptoms (chest pain, higher BP, palpitations, nervousness, anxiety and irritability, mood swings, difficulty sleeping, persistent tiredness and weakness, sensitivity to heat) could all be explained by having hyperthyroidism, which can happen if I'm taking too strong a dose of Levothyroxine. None of them existed until some time after I began the new prescription. I've researched and talked to some friends who are physicians back home. Whether it's the cause of my problem (or yours) or not, it's still a very possible candidate and definitely worth a blood test to me. Here's to hoping we both find diagnosis!
I agree with getting thyroid tested. I had similar episodes. Once I was hypothyroid then I was hyperthyroid. TPO antibody test will indicate if you have an autoimmune disorder called Hashimoto disease. It is an awful feeling. I still take a calcium channel blocker for possible vasospasms not specifically found on tests but helps also with palpitations. The participants on this site are a wealth of information and seem to be very caring and nice.
I don't usually reply so I'm speaking about the rest of the people not me :). I hope they help you soon.
Thanks everyone for your input! I will be sure to mention these to the hospital or my GP if they will allow. Very frustrating when you don't get to see the specialist that's dealing with the case for 2 years.
I hope you get some answers soon, I’ve not been waiting anywhere near as long as you but get frustrated at not having a full diagnosis and a treatment plan so I can get on with my life! I do feel for you, it must be tough . Keep badgering the health professionals!
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Scared and fed up! 
FALLS AND CANNOT GET UP
Feeling fed up
FED UP WITH BOWEL UNPREDICTABILITY
Fed up with this psin
