Apparently I’m special (wish I wasn’t)

hello

now that I am washed, fed and watered I shall share my day trip to A&E.

I started a new med Diltiazem 240mg last Saturday per latest cardiologist report and prescribed by gp as a result and I found my chest pain increased in intensity and on occasion whilst sitting (the latter didn’t happen on amlodipine which I was on before said Saturday). (I made the change “cold turkey” because no one said otherwise).

So I asked the dispensing pharmacist is the increase / change in pain normal, do i need to give it more time?

Pharmacist said ask GP. I asked GP and because I outlined I had more intense pain and some at rest GP said I must go to A&E and GP would not look at meds / any changes until I had. Fair enough although I was not concerned just seeking assurance ok to continue med. I’ve been on diltiazem before at a lower dose (180mg) and it didn’t help.

6 hours at a fairly quiet A&E (lucky that, very few ambulance crews came in in all that time). Numb bum though from sitting on metal seat - I knew I was ok as they sat me outside in waiting area, and not take up a bed (happy with that, although tiring).

I explained my history and recent increase in pain to a student doctor, again to a junior doctor then to a medical consultant (who in the end consulted cardiology). Outcome was to carry on as I am and give it more time - the answer / reassurance I was looking for from the pharmacist and GP in the first place! I’m a tad frustrated but I see why I was advised to go to A&E.

But the “funny” bit was The medical consultant said I am special and they had never had someone like me I.e. with a symptomatic myocardial bridge ( LAD grown through the heart muscle unlike normal over the surface of the heart so gets squashed and reduces blood flow, I have exertional angina with very little exertion sometimes after a few steps, no let up until I rest.) The junior doctor admitted they’d not heard of it. I didn’t expect them to really.

It’s not great when they scratch their heads and aren’t sure what to do, having something few know anything about isn’t much fun!

I’m sure there are plenty of members here who know this feeling far more than me, with far more complex issues.

I think I will sleep well tonight, a trip to A&E takes it out of you with just the waiting.

But I must say they were all nice, they did listen, just couldn’t really help.

😊

[Hidden]

It is not nice being special. I don't have your issue but I have a congenital heart problem which is rare even though it named after some chap who found it in the 1800s. But I will look on the bright side of how I was diagnosed. I had a dizzy spell at work. Any way got over that and I decided a couple of days later that I wanted an ecg. So had one at the doctors. Next thing a doctor wanted to see me. He said iam not happy with ecg. Have you any chest pains. No I said. Well he said I suggest you go to A and E now. No point waiting for ambulance as that could be 4 hours. OK so of I went turned up in A and E with ecg and a letter and stood waiting to see a young receptionist. I said, once she could see me, I have come from the doctors with these letters. She said if you just wait for that nurse over there. She was seeing to someone else. So I waited and was looking out the widow minding own business. When the receptionist gave the letter and ecg to the nurse. Next thing she shouts out wheel chair. I think who is that for, next thing iam placed in the chair and off I went. To triage where they where concerned with my low oxygen levels. There is me thinking what am I doing here. Next put in a room on my own with all the test gear and full oxygen. Still thinking what am I doing here. I was sitting up in bed talking. Next I have bloods taken. An injection in my stomach. Still thinking what am I doing here. Next put on a trolly and had a ct scan . Talking to the technician about where he lives, which was not far from me. Wheeled back to room. Then had a portable chest xray. I was not allowed to move even though I had a call of nature. Had cup of tea. Laid there waiting , playing with phoned. Next another portable machine wheeled in this time an echo scanner. And this is when the fun starts and the penny drops. The technician put the jelly on my chest and start the search around my heart area with echo scanner. So there we all are looking at the screen I see valves opening and shutting. And she was pointing things out to a student. Then she said to the student. That should not be there that should be up there. Oh I said that looks to me like a congenital issue. She didn't say much but sort of acknowledged that it could be. So iam now thinking now what. Still laying there on oxygen playing with phone. Loads of doctors nurses outside the room talking, every now and again peering in to see what I was doing. Not alot getting bored. So then the doctors appeared. One at time the young lady said all your ct scans are clear and bloods are good. But you have a congenital heart issue. Epsteins anomoly. Then another doctor appeared and said how you feeling fine I said. Right I will discharge you as your oxygen level has come up to 92% on air. I will forward your information to the congenital heart team at norwich. You can go home now. And now my journey has stated. Wish it had not.

[Hidden in reply to Hidden]

agree not nice to be special, you’re fortunate they took it seriously and investigated there and then. It must be of concern and so it’s awesome they took notice. Just googled that’s pretty special.

Mine is a congenital heart defect but doctors are trained to believe it is always benign so the battle to be believed that your having symptoms despite other tests coming back normal (till you get an angiogram with dobutamine/ IVUS) and you push and push to get properly diagnosed has taken a year nearly to the date.

I hope they are doing all that is needed to be done for your heart. ❤️

[Hidden in reply to Hidden]

Thanks for that. Yes it is quite rare. Especially at my grand old age of late fifties. In these modern times i think. They repair them when you are born or as a child. Of course in the swinging sixties they had no ct scans. Mri and echos so just my luck. But 2022 was a year I wish to forget. I had 24 hr ecg, stress test on a static cycle machine, mri scan. 24 hrs blood pressure check. Not all together. But spaced roughly one a month apart so I carnt really knock the nhs. And Barts hospital has reviewed it, and basically too risky to repair it. So currently I am on medication and the problem is stable. So I need to keep it that way. Unfortunately there are not many people on this forum with epsteins anomoly? So feel a bit lonely. But as I may have said I don't wish it on any one. Take care yourself.

[Hidden in reply to Hidden]

I totally understand that lonely feeling ❤️

[Milkfairy Heart Star]

Last time I was in hospital I was greeted by the on call Cardiology Registrar in A&E.

' Ah! you're Prof's special patient '

Followed by the Consultant on the ward round next day.

' Team, let me introduce you to our special patient'

I hope you get a good sleep tonight and the Diltiazem helps.

[Hidden in reply to Milkfairy]

bit more than special it seems, your more an A lister / celebrity!

[Milkfairy Heart Star in reply to Hidden]

😂

[Hidden]

Yes US is the main place, it’s not common in UK which is where I am. Cardiologist said there are two surgeons they know of and they haven’t done any for a few years and they also said unlikely to help significantly and could cause more damage than good. But they have left the door open to reconsider if meds just don’t work. Research says bridges deeper than 5mm bypass recommended but can fail / still subject to competitive flow. Mine at its deepest per angiogram is 24mm. I don’t mean to sound hopeless but trying to be realistic on what I’ve learned / been told but you just never know…..

[Golf1985 in reply to Hidden]

hello you sound very familiar to me I’ve had this 12 years and finally found out what I knew all along can I ask did the angi tell you the depth or the length of the submerged bridge as he just told me mine was about 2.5mm long I thought ct had to tell the depth,I had a ct private 2 years ago with nothing so I’ve rang them and told them to re look at it asap ,Any knowledge of help would be brill like tos92 is also helping me

[Hidden]

😂🤣😂

[uzininemm]

Don't take this the wrong way, but aren't we all special, or was it in the manner it was said to you?

[Gibson01]

One of the most frustrating things about our visits to A&E is having to explain our condition over and over again to a succession of A&E and medical doctors who have little knowledge of cardiology. In my local hospital, cardiology will not enter the A&E department, resulting in massive waits to be admitted to a medical ward and then to see a cardiologist. No matter that you are well known to the cardiology department and under the care of the most senior cardiologist. Its a complete waste of everyones time.

[Hidden in reply to Gibson01]

I agree frustrating, I think I have resigned myself to needing to explain and explain again. I did wonder if they were trying to see if I was for real and my “story” was consistent or more likely they just didn’t know about it! It would be nice to think one of those doctors went and did a little research and may have learnt something new!

[Motherofdreams]

I have a myocardial bridge and get frequent attacks of chest pain I was advised by my cardiologist to visit A&E if the episodes last longer than 15mins but after having gone to A&E several I find there is nothing really they can do and most don’t understand it .

[Hidden in reply to Motherofdreams]

same here, I only went because gp said would not consider any med changes nor confirm ok to carry on with diltiazem or not, unless I went to A&E. visit before then was April 2022. But I’ve had pain daily.

[Hidden]

does seem to be horses for courses I have micro vascular angina and was on amlopodine for 18 mths but started to experience swelling in my ankles and lower legs so was switched to dilatezem and have not looked back 🙂 my angina has lessened so suits me. Do think that there does seem to be bit of trial and error until they get it right no one size fits all 🙂

[Hidden in reply to Hidden]

Totally agree hopefully we’ll find something that works for me.

For me amlodipine is the lesser of two evils, with amlodipine I feel better in myself / no side affects but it does nothing for my chest pain. 😊

[Ozette]

Interesting about how you were started on Diltiazam. When I started that medication I was hospitalized for three days so I could be closely monitored on heart monitor and with many EKGs. I was told by my Electrophysiologist that is the standard procedure for starting that med. I'm pleased for you that, in your case, it wasn't the med causing your problems. I use to go to the local hospital where doctors are trained, but found it very confusing and unsettling. My new cardiologists use a different hospital. Much less stress for me. Wishing you well going forward.

[Hidden in reply to Ozette]

bit different to me then ,as said was on amlopodine np but after 18 months or so legs started to swell. I was in hospital for something else and they just switched it overnight 🙂 not allowed beta blockers as have Crohn’s lol

[Ozette in reply to Hidden]

I was on Flecinide right up until going to Diltiazam. Flecinie Had become in effective at top limit of dosing. Hmmmm. I thought I just read Diltazim is a beta blocker. Which surprised me.

[Hidden in reply to Ozette]

nah calcium blocker as having Crohn’s not allowed beta blockers or NSAID’s

[Ozette]

I hope it helps. After awhile nothing worked for AFib or slowed tachycardia.