12th Trip to Resus with different outcome

[MollyMoo53]

Hi. I am new to this forum.

I hope I can find some info about my ongoing heart problems experience.

5 years ago I had my 1st trip to Resus with a heart rate of 200bpm.

I was given a bid single dose of amiodarone and HR dropped to normal fairly quickly.

I then stayed in the cardiac unit for 4 days where I had several tests including an unpleasant angiogram.

I left the cardiac ward with statins to add to my already substantial list of regular meds.

Over the last 5 years I have had 11 more events with heart rate up to 200/195.

Only 5 of those have I sought help for. The others all resolved on their own

Each visit to Resus and the rate has been resolved with amiodorane and once with carotid massage.

On 7th May I started on Verapamil tablets as decided by Cardiologist (who I have never met) within hours I felt unwell and noticed my heart rate was up by at least 25 beats per minute. I took 2 more Verapamil the next day and felt worse still. I was sure this wasn't right. I stopped taking them and rang for an appointment with my GP which was on 12th May.

I showed him my multiple pulse ox readings and explained that my heart rate was up at least 25 beats resting and same again with slight exertion.

He said he would have to contact Cardio for advice on meds to restore normal heart rhythm. He said he would use the fastest way to get a quick answer which was via email.

10 days later I contacted GP to ask why I had heard nothing yet. I was fobbed off.

30th May I finally managed to speak to my GP who said Cardiac doctor wanted me to take nabivolol instead.

I then started suffering from pretty serious cellulitis in both legs so held off with new tablet until I could speak to GP again to see if safe to take new meds with cellulitis.

I didn't get to take any of the new meds and I had been in fast heart rate for 4 weeks when the next visit to Resus was necessary.

The latest one 2 days ago was very unusual. 200 bpm. Into Resus.

They decided against giving me amiodarone despite it working every previous time. I said I would prefer amiodarone (I knew about its dirty drug status but it works for me).

Instead I had a hideous drug called adenisene - 2 doses and the 2nd dose was double the first. Oh my goodness it was horrendous and it didn't work.

Next they wanted to shock my heart. I said I didn't like the idea of shocks. But they talked me into it.

2 shocks later and still no change to heart rate.

Then they set up a slow amiodarone drip.

An hour later my heart rate began to drop.

I always go home as soon as rate is back to normal. They insisted I stay in cardiac ward so I did overnight.

I left with different tablets Adizem XL 240mg.

Haven't been able to take those yet as I woke up after a night in my own bed with very odd feeling in my chest.

Put pulse ox on finger and my heart is all over the place. Not fast as is usual but all over the place. Including very scary flat lines between uneven beats.

This started at 2pm today and I have spent the day hoping it would settle so I don't have to go into Resus again.

It's now late at night. It hasn't stopped.

I honestly think that the alternative treatments they used which didn't work have damaged my heart. I have never had flat lines and heart all over the shop.

It's very scary. What can I do? My life is in their hands isn't it?

There is nowhere else to go. What do I do?

I don't want them messing with my heart again and I don't want to die yet I am 61 year old mother and grandma. I don't want to leave my family just yet.

What can I do?

Molly

[Hidden]

Hello & Welcome Molly

I have read your post and was shocked at how you have been cared for as well as lost for words and I feel for you

I have no answers but wanted to let you know till others come along that have more knowledge than me that someone has read you post

If you feel you are not ok I know you don't want to go back in again but my advise would be you should or at least phone 111

Please keep talking and let us know how you are and please as much as you don't want to if you know things are not right go back to the Hospital and if you do this time tell them you want a second opinion because nothing is getting resolved x

[scool in reply to Hidden]

Hi, This is very rough advice, but my [82 year old at the time] father had permanent AF and heart failure. The cardiologists and his GP seemed clueless. Dad was going downhill, quickly. We eventually paid for private consultation and dad was given amiodarone in tablet form for a period of time to stabilize his heart rate. He was also given cardioversion, but this only worked for a short time, a few months, before he went back into AF - although he felt great and seemed to be doing really well. He was then given a pacemaker and improved again. He is now 89 and, although he struggles with shortness of breath and tiredness, he lives a full life for a man of his age. I don't know if this story helps, or if his symptoms were even similar to your problems, but the steady dose of amidarone seemed to do the trick and so it might work for you. Just be very cautious to look out for the side effects.

[Hidden in reply to scool]

Hello

You have replied to me and I think you meant to reply to the member who posted

I do this often to

But it was very interesting to read your reply as well as reassuring for the poster and other members with this condition to know your Dad is living a long and happy life

I hope it long continues x

[scool in reply to Hidden]

Sorry!

[Hidden in reply to scool]

Hello

No please do not be sorry you have nothing to be sorry for

I do it often and I enjoyed reading about your Dad x

[Bagrat]

Hi, it must be very frightening for you. Are you concerned the Adizem has caused this change in symptoms? I am assuming you started them in hospital?Sometimes arrythmias can take a while for the doctors to find the right combination of meds that control your symptoms. By now I hope you have sought advice. Let us know how you are getting on.

[MoyB]

Hello, Molly,

I see you posted 8 hrs ago so I hope that things have improved for you by now, or else you have contacted 111.

I really feel for you as there is nothing worse than losing confidence in the people who are supposed to be looking after you. Unfortunately, I don't have any answers although I agree with everything BeKind28 has said.

Do please keep in touch.

xx Moy

[seniorita]

Hi MollyMoo53, I'm sorry to hear about your horrible experience. I would suggest you ring 111 or possibly an out of hours GP service. A&E should be the best place but I take on board what you have said. However, if you do have to go back tell them that based on your experience you do NOT consent to the other medications and why do they want to use them. Tell them you want it on your notes.I also strongly encourage you to contact PALS, you can make a complaint but if you aren't comfortable with that it can be a comment or feedback instead

[bowls12]

Molly

My advice is to call 999 immediately and have a hospital cardiac specialist deal with this major problem.

[Gemini-ray]

Hi, molly I have read all of your question it’s an absolute nightmare what you are going through my heart rate was all over the place down to 28bpm then shooting up to 115bpm In seconds my normal heart rate has been 52/53 over the last 40yrs so it came as a shock I also have had 3 stents between 2008 and 2013 when my heart rate was all over the place in oct last year cardiologist put me on 200mg amoidarone once a day ( moderate dose ) and I am still on it

My pulse has settled down somewhat but still have the odd episode where it’s up and down what I don’t understand is why you were only given a single dose of amoidarone by injection you know how your body is reacting with a good response on the injections of amoidarone I can’t understand why the cardiologist hasn’t put you on a small regular dose of amoidarone and see how you go , doctors are not cardiologists and for your doctor only to respond after all that time and you going through absolute hell you had to contact him if it was me going through the hell you are going through with such very very high pulse I wouldn’t be happy with cardiologist and would want a second opinion from a different cardiologist or if you can afford it get a second opinion from a private cardiologist but before you seek a private cardiologist check them all out on the different websites and check out the reviews each one has life’s too short to be messed about as you are you have at least

25yrs -30yrs left to live on the right medication or even a pacemaker good luck molly I hope you get sorted one way or another hope my response helps

Kind regards ray

[RailRover]

Sorry to hear this, MollyMoo53. You are frightening me to death and I've had a heart attack, stent and triple bypass. I can only offer that I too was on Amiodarone for a while for ectopic beats, but they took me off it, and the comment was that they prefer to use other drugs where available nowadays. If it works for you, though, maybe try to get it in tablet form so that you can at least have some on standby when these episodes strike you.

Other than that, make a nuisance of yourself until you get long term satisfaction. It's your life, and you are entitled to make a fuss. Let them know you won't be fobbed off. I hope things improve for you.