Scared…

[Cpr2018]

hi all.

hoping for some words of encouragement / reassurance.

I am a 31 y/o female, fairly clean medical history - diagnosed polycystic ovarian syndrome. Slightly overweight (working on it - 2.5 stone down and counting). Lifestyle normally active, don’t drink, don’t smoke, don’t use recreational substances, don’t drink caffeine regularly.

Over the last 18 months I’ve had random episodes of fainting, and feeling generally unwell. Always put it down to PCOS.

Two weeks ago however I had a 15 minute blackout, unexplained. Went to A&E, had all sorts of tests, all fine. Asked me to go for follow up 24 hour ECG and echo due to my maternal grandfather having HCM. My mum has recently had her echo and shown minor thickening indicative of HCM also.

Since the collapse I’ve had constant left sided chest pain, palpitations, confusion, near fainting, utter exhaustion.

Went for baseline ECG with GP - told my heart rate was slower than they’d like (resting bpm 58) with grade 1 AV block. Now it gets interesting…

because of family history GP wants referral to cardio for 24 hour ECG and echo (just as A&E GP has said) - but it’s up to 9 months wait…meanwhile my symptoms are constant and affecting my everyday life massively. I’m literally a shadow of who I was two weeks ago.

found a private cardio willing to see me - he took my pulse and listened to my chest and said he could hear distinctive, highly frequent, left sided ectopic heartbeats (palpitations) and therefore it was no wonder I felt so unwell.

he suggested that he needs to rule out anything structural like HCM, then go for meds that will help with symptoms, then do tilt test to establish what has caused the blackouts, re refer me back to nhs for longer term care.

He’s calling me tomorrow morning with a date for this week to get 24 hour ECG and echo done by the end of the week.

I’m absolutely petrified this is going to be something life limiting or shortening. I’m already dealing with life changing symptoms, but I don’t know if I can face this…

has anyone had a similar situation that has been resolved and how?

Sorry for the late night emotional post, I don’t want pity. Just scared, and feeling very, very, alone.

[RufusScamp]

I can understand your feelings. I can't advise on your case, but I can tell you of a neighbour, who, after a lifetime in heavy engineering, died in his late 70s. A PM showed he had two holes in the heart. Problems are a worry, but not necessarily a serious issue!

[Hidden]

I'm sorry you are having such problems and I can't believe you would have to wait so long for yr tests, if it were me I would take the private appt then things can be faced and dealt with ASAP

Myself I've had a massive shock heart diagnosis following a hospital inpatient stay but I've lived 67 yrs before they've found my problem

Life's for living so good luck be brave be bold we are all here to support each other

[PaddyRedVan]

You are doing all the right things. Follow the consultants advice and plan of action. Go with the flow and trust in their knowledge and experience. Take care.

[isobelhannah18]

My worries and problems are always much worse late at night or even worse the middle of the night! I have no knowledge of your condition but go for every appointment and follow the advice. In my experience there is usually someone on the forum whatever the time so post as often as you need to. Good luck.

[cappachina]

Your are not alone now you found this forum We are all there for each other. You are young never expected this to happen of course you are scared but you will find loads of support on here You are getting this looked into and it may not be as bad as you think and it may be resolved fairly easily the cardio depts are fantastic nowadays . There is always someone on here to offer words of comfort and advice. I had heart problems leaving scarring on my heart while young and was told at 21 it would cause me problems when older. I had 3 children worked, nursed parents, brother and sister in law before they died with no heart problems at all Got to 75 and Wham Igot these heart problems I was promised at 21 and I still found it hard to accept But I had a aortic heart valve replacement in April and now feel wonderful So do not think this is going to alter your life forever They can do wonders with drugs if necessary surgery and you can live a long and happy life

Can't understand why the long wait for tests though That should not be happening

[MummaSoap]

Hi Cpr2018

Firstly, I hear your fear and I want you to know that you are most definitely not alone, we’re here for you!

Secondly, I was 31 when I was diagnosed with DCM and heart failure. I was on my own when I received the news and ended up having to deliver that news to my loved ones (and feeling like I then had to put a brave face on it for them).

I can’t give you exactly what you’re seeking in terms of a resolution BUT what I can tell you is that I’m still here, 3 years down the line and I’m grateful for each day that I get to wake up to my 3 beautiful children. I am symptomatic daily but my medication helps with that and I truly believe that my positive mindset (although having suffered the occasional wobble) has definitely had a huge impact on my day to day life.

You don’t have to let a diagnosis define you and although you may have a new normal, it’s still possible. The biggest piece of advice I can give you - enjoy in the moment.

The reality of life is that none of us know how long we have on this earth and yes the fear of that reality is overwhelming, we are all a miracle just for existing and that is miraculous in itself!!

I am sending you big hugs because no one likes being left in limbo and I sincerely hope that you get the answers you need to be able to move forward and can lay some of your fears to bed.

If you do receive a diagnosis, there is a life after diagnosis 🤗🤗

If you feel you want to, please keep us posted with how you get on.

Best wishes

Soap 🧼

[Milkfairy Heart Star in reply to MummaSoap]

What a wonderful reply!This is what I love about the forum. Members sharing their lived experience of their heart condition sprinkled with kindness and hope.

[FraserB]

My sister has PCOS and at the age of 41 had severe palpitations. She never fainted but she had side chest aches/pains and feeling unwell. After many months of waiting like yourself and finally a diagnosis she was put on heart meds, first was calcium channel blockers then years later switched to beta blockers. She may have something different from yourself but she did enquire if the PCOS (some it can be inherited though not in all cases) was an influence with her heart. Doctors still to this day don't know much about PCOS and the heart so they couldn't say for certain. But next month she turns 69 years old and is going strong with more energy than myself.

[Cpr2018]

Echocardiogram shows no Hypertrophic cardio myopathy! Got 24 ecg on now. Fingers crossed