help would be appreciated

[Nejy42]

hi . I’m Nicola I’m 42 years old.

Very long story I’ll keep it short as I can.

7 years ago I had an episode when I woke up and I felt very week .

I went to sit bk in my bed when I seemed to breath like I was through a straw , I was semi unconscious so eveytbjng blacked out but my mind was still active . The breathing sounded like darth Vader .

until like a defibrillator my body bounced off the bed and I came round. .these have happened ever since but never been detected as they will be like every 9 months .

Cardiologist suggests to her a loop put In the chest.

and when things change and get more frequent so this year has been horrific. .

I had whooping cough in May , covid in June then got stung in aug whcih triggered anaphoric shock since this time my heart seems to have gotten pretty mental.

Symptoms I have atm is often sleep time .

I’ll fall asleep then be woken by a squeezing senstarjon in the heart , massive headache and tingling in face and a freezing cold arm . Chest pain , followed then by palpitation’s.

some nights I’ll stop breathing , my heart rate is going form 60 to 112 btw through out the night constantly .

I’m exhausted.

I have baught my own ecg monitor that shows erratic changes in heart rate but the nhs won’t take this as gospel .

one mornjng I’d had a bad night and sat up only to find my heart jump to 179 bpm and omg I couldn’t speak I rang 999 they said it looked like svt but by the time they got me to hospital it starts to behave and act like nothing is wrong

I can’t seem to lie down and rest . Depending on my night depends on my day .

there are times I can’t exercise . I feel dizzzy out of breath .

I feel like I’m going to die as dramatic as that sounds or Itl cause stroke

but nhs think I’m being dramatic and nothing is wrong but I know there is something very wrong

I’m having the loop poopedin next week thank god im in a right emotional state which is not helping .

They did a tilt 2 years ago so refuse to do another even though things have changed.

I’m havjng an exercise test .

I’m anxious that it will just do its trick and behave when I get tested it acts like nothing is wrong .

I get home and it falls to peices again. .

I refuse to go to an and e anymore I get angry with it. .

I’m not wasting ppls time and my own if it manages to disguise itself when being investigated.

anyone have any ideas of what this could be

I do have auto immune issues .

I have low thyroid that’s even explored and it’s all ok .

thanks for reading

[Knavesmire27]

Oh I am so sorry to hear your story. I can only imagine your emotional pain and anguish, let alone the fear when you are having episodes. I know what it is like to not be able to just "turn off" your brain for even 5 minutes reprieve. I am sorry I have no answers for you, mine is quite a different story, but please know there is a whole community here who can identify and empathize with your feelings. I promise you, you are not alone. This is so very real for you, so keep fighting and keep pushing forward. I wish you all the very best if luck with your procedure. Take care and know people are listening.

[Nejy42 in reply to Knavesmire27]

Thankyou . That’s reassuring I’m not alone

[Gigi70]

Thsnk you for you post Nejy42

Firstly you know something is wrong so don’t be fobbed off / they do that when they are unsure of the diagnosis. You will get answers

I started symptoms at the same age. Finally I paid for a private cardiology consult. The found microvascular disease in my case. Then was seen by NHS. Once they’ve found a problem NHS have to act.,

Don’t lose hope - you need a cardiologist - you can demand your GP refers you immediately. If necessary a second opinion too. The sooner you can get a diagnosis the better for your mental health as well!

Michèle

[Nejy42 in reply to Gigi70]

I know . They keep sending me to this arrithmia nurse and any cardiologist keeps bouncing me bk to them . It’s very frustrating.

Iv been to a private cardiologist again he’s unsure what’s wrong. He’s going to do a cCT scan where the pit the die in . To check for any heart disease. .ill be pleased to get this loop in as I think that will show us all a lot .

Thanks for your reply .

[Slekid71]

That sounds like a nightmare I hope you get the help you deserve

[AustinATV]

Hi. Am sorry to hear of the issues you are having, I wouldn't want to try and suggest what the cause may be however I do think the loop monitor is the best way forward. In my case and within a week of fitting, the monitor detected a long pause in heart beat whilst I was sleeping and a pacemaker was fitted 4 days later. It is very difficult to detect some issues and constant monitoring is the only solution. I hope this is successful and you get the problem resolved soon.

[Blackwolf_7619 in reply to AustinATV]

I'm happy you were contacted about your loop. I have a loop and I record symptoms a lot. I also ended up in A&E with a heart rate of 200. They still never bothered to contact me. Itsmpointless having it.

[AustinATV in reply to Blackwolf_7619]

Hi. My loop recorder was fitted following several incidents of SVT and treatment for heart rate of 180 plus which would go on for hours at a time. This culminated on one occasion becoming unconscious . The recorder signals were sent to a bedside transmitter. I received a phone call on a Monday morning to say there had been an issue whilst asleep on the Saturday night when my heart had paused for 29 seconds. The pacemaker was fitted as an emergency 3 days later. I can only suggest that you contact the team who fitted your recorder and make a fuss. Although my main problem was SVT I think the medication prescribed, bisoprolol at 7.5mg also caused my heart to go too slow . I have since had an ablation which has cured the SVT. My next issue will be aortic valve replacement, am classed as having severe stenosis. I do wish you well and hope you get some response and diagnosis.

[Nejy42 in reply to AustinATV]

Bless you I’m so sorry to hear all these issues. How old are you if you don’t mind me asking ? I’m jsit so shocked I’m only 42 been so athletic all my life and have these issues.

I’m so glad they found your problems . I haven’t had it fitted yet .

Did it hurt when they fitted it in . Mine is on Tuesday next week .

I’m Hilo my they find the issue quick.

Thanks for your reply it’s so helpful to hear others stories .

Best wishes

[AustinATV in reply to Nejy42]

Hi,I am just turned 66. Problems started 2 years ago with suddenly feeling weak and out of breath. Was fobbed off with being told it was SVT caused my mild aortic stenosis. It wasn't until an A and E doctor checked my notes that I found out my condition was moderate, the doctor then went in to insist my condition was properly investigated, hence the loop recorder. The benefit of the recorder is that is permanent and is only removed once the problem has been identified. Wonderful bit of kit.

. In relation to fitting the device, it is placed just under the skin of the chest near the heart, is about 8 mm dia and 20mm long The procedure is painless done with local anaesthetic and takes about 15minutes.

I have been a very active person all my life, not athletic but always moving and doing something. Unfortunately we just don't know what's going on inside. I can only praise and be thankful for those who have looked after me. I do think you are now going in the right direction and hope your problem is identified soon. Best wishes.

[Nejy42 in reply to AustinATV]

Thanks for that . I hope they pick something up quick in the loop as I get so very porly and very quickly too .

Iv been out on beta bockers whilst I wait and it’s lifted a lot of my symptoms so I can at least sleep .

I’m dreading coming off them I could barely stand or talk to ppl 3 weeks ago 😢. I feel like if they don’t catch it . Something bad will happen . It makes me feel that porly but I’m told it’s not life threatening lol

[Gowers in reply to Nejy42]

i am on my 2nd loop recorder, they last approx 3years b4 battery needs replacing. made huge difference to my diagnoses of AF. when i had 24hour or 7day monitor fitted it didn't pick up the af/ectopic beats. as soon as i had it fitted i had peace of mind knowing it was recording 24x7. I can phone cardio nurse at hospital and she can take a look at the days/nights i have had problems, speak to my cardiologist and get advice re medication or any tests needed. the fitting procedure didn't take long, a little bit sore for day or 2 but after that you forget you have it. so reassuring to know that anything you feel is not right you can download to the bedside monitor. made a huge difference, surprised they are not used more.