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Self perpetuating cycle

JoJo444 profile image
32 Replies

Hi I am new here, my name is Jo, I am 56, a registered Nurse working in a prison, which is full on day in day out, I work 11 hour days.

I have been diagnosed with AF, Diabetes type 2, high BP and high cholesterol, prescribed 17.5mg Bisoprolol, Apixaban, Losartin, Metaformin, and a statin.

I am chronically tired, exhausted and at the end of my tether. I have to work, I alone pay the mortgage and bills, I don't get sick pay. But every day I am becoming more debilitated.

Every time I visit my GP they increase the Bisoprolol, I have had a angiograph and echo cardiogram, but no follow up.

Every night I go to bed, terrified that I wont wake up in the morning, as the AF gets worse at night. Every morning I wonder how I will get through another day.

Nobody seems to understand or take me seriously.

I am stuck in this cycle of drugs and anxiety.

Please please give me some advice, anything.

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JoJo444
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32 Replies
Globe-J profile image
Globe-J

Hi JoJo,

As you may have noticed, there are many living with conditions similar to yours, and we live (-:

However, do you consider finding professional practitioners. A true professional would surely take your situation, physical and emotional, seriously

J

PS Which country do you live in? I am a Sydneysider

JoJo444 profile image
JoJo444 in reply to Globe-J

United Kingdom. My GP is Ok when I can see her, but just offers more medication. My greatest challenge is in my team at work, they cannot grasp that I am struggling through exhaustion, so I work harder, so I will not be seen as a slacker (a bad thing for a healthcare team). I get home and I go to bed, work/bed, that's my life now.

Globe-J profile image
Globe-J in reply to JoJo444

Sorry to sound harsh, but you need more than a GP to manage the medical and logistic aspects of your situation. Please consider

J (-:

Maggimunro profile image
Maggimunro in reply to JoJo444

Sadly Jojo, that was my experience in the NHS. I was just regarded as weak by my team and my other colleagues. I did get sick pay, which was a good job since I was struck down regularly by bouts of what I now know to have been AF and SVT. My diagnosis of SVT and AF were missed for over 2 decades, but I think dignostic tests and understanding about these conditions have improved these last 10 years.

I tried for early retirement at 58, but because I hadn't at that time been diagnosed officially with AF, since the bouts were spread apart and a simple 24 hour ECG simply didn't capture them, my request was denied. I had to resign and take a hit on my pension, since I simply could not go on working.

Strange how we work all our adult lives helping other people but gained scant regard when we ourselves had a problem.

Talika profile image
Talika in reply to JoJo444

I know what it's like… You are on a lot of medication! Try and find a good EP

Hi JoJo;

with your medical background you don't need us to tell you that this is not sustainable in the short or long term. You need HR or your line manager to step in before you crash. You need to look after you. The Bisoprolol might keep the AF suppressed but is probably contributing to your malaise. Instead of seeing your GP about your AF, ask for a referral to an EP. Why isn't there a follow up? The NHS sometimes needs a push as it has so many calls on it's resources.

patton profile image
patton

Hi JoJo,

please try and keep the chin up as you can live a virtually normal life with AF.I do know you have other health issues but they can be all managed successfully.I first had AF in 2004 and had a successful electric cardioversion.It didn't activate again until July last year(a pretty good innings of 12 years) and was again corrected by an electric cardioversion.I was put on Bisoprolol(1.25mg) Xarelto(blood clot protection) and Dilzem(blood pressure medication).I found it very difficult to function with the Bisoprolol being always tired, disinterested and very breathless.Although it was a low dosage it still seemed to effect me severely.My cardiologist took me off it at the start of May(after weaning gradually for six weeks beforehand).I since feel better but still have episodes of palpitations and some breathing problems occasionally.I am putting this down to withdrawal symptoms as I know it can take from a few weeks to a few months to finally get a drug out of your system.Overall however I feel much better.Some drugs just don't suit some people while others can take them with no problems.You just have to find out what suits you.I live in Ireland and if I was waiting to see a cardiologist in the public system I would be waiting!I generally make a private appointment and see him within one-two weeks.Nothing more important than your health.....best wishes....

BobD profile image
BobDVolunteer

You need to see a specialists in the form of an elctrophysiologist to take care of you.

Maggimunro profile image
Maggimunro in reply to BobD

You absolutely need to see a slecialist Electro Physiologist, not a Cardiologist. As someone recently described it on this forum, a cardiologist deals with the plumbing of the heart but an EP specialises in the electrics.

Studies have shown that many people with AF are on the wrong medication. Bisprolol certainly made me feel worse. As did flecainide.

Working with that level of AF is a nightmare. I was a physio and couldn't understand why I was so exhausted. The cardiologists (2 of them) found nothing wrong with me, until I collapsed in the hospital and they actually did a long running ECG on me and then referred me to an EP.

Please seek specialist help.

azriverrat profile image
azriverrat

Here in US it is near impossible to get disability for afib. Too many just work through it and man up. Others it is a minor nothing and no problem.

Makes it hard for those of us really affected by it. Just hear not life threatening we work with it so can you.

But it affects everyone different. They may have a cold level version of it and we have pneumonia level.

You need an experienced EP to manage it. Maybe an ablation. I was on 480 mg of sotolal plus other drugs and told I was fine. Sure if you think walking zombie is fine.

So you need an experienced EP and realize everyone has different lvels of afib. Those here saying they work through it may have less demanding jobs or not as severe complications. It is also why employers blow afib off. Hey so and so has afib and they work happily no problem.

For many years I would have traded my afib and flutter for the 90% here that have the gentle version

Now the fifth ablation has mostly worked but who knows for how long. But put our finances in the dumpster as denied disability as the common afib is just so gentle or the man up we work so can you posts here.

jennydog profile image
jennydog

Are you really on 17.5 bisoprolol daily? I thought that 10 was the maximum dose. It's no wonder that you are exhausted.

You really must insist on a referral to an Electrophysiologist to get expert advice.

jeremygray profile image
jeremygray

I am 56 and have had PAF for thrree years Initially I tried all the meds - the betablocker and the felcanide and ditiazem. THey made me feel really ill. its very likely that the betablocker makes you feel ill. Its stress that makes the AF worse too. Can you take sick leave to have a break and definately you need your GP to refer you to a cardiologist who specialises in AF - JG

meadfoot profile image
meadfoot

Please ask your GP for a referral to an Electrohysiologist as a priority, you need that specialist level of input to get you back on track. If you have had intensive input like an angiogram had there been anything majorly untoward you would have most likely been kept in there and then.

You are on quite a cocktail of drugs some of them may be affecting you on top of your conditions. You can't go on like this, as you say something has to give and it can't be you,.

It's very anxiety provoking struggling on like this which will add to your exhaustion so you are in an upsetting spiral. You need help from your prison HR partner as a priority. I know you are working in a harsh environment as I have worked as a consultant in the prison service but you must not try to work yourself to a standstill to keep up. You will know only too well that's unsustainable.

You will get back on an even keel but you need work support and the relevant medical support to get there. Sending a cyber hug, take care. You will get better this is probably your lowest ebb, take heart many of us have been where you are right now and climbed back up to a much better situation.

pottypete1 profile image
pottypete1

First step - get referred to an EP. (Consultant Electrophysiology Cardiologist).

Your GP is unlikely to have the qualifications to make these decisions.

The dose of Bisoprolol you state is very high and sounds wrong. Bisoprolol is a heart rate drug, not a rhythm controlling drug. When I was in AF and took Bisoprolol 2.5mg (double my normal dose then) I had Bradycardia (slow heart rate) and felt awful with my rate sometimes under 40bpm.

I reiterate - get a referral to an EP ASAP.

Pete

SRMGrandma profile image
SRMGrandmaVolunteer

By the heading of your post, you already know the answer. It comes down to a simple truth, that a life that is out of rhythm will make for a heart out of rhythm. When you don't get adequate sleep, handle your stress, and miss out on regular exercise or healthy eating it is the perfect storm for AFib. Can you see a counselor to start with your stress and sleep issues. Mindfulness meditation, exercise, yoga, all work so well to decrease anxiety. Put yourself on a good sleep schedule and make rest a priority. Everything looks better, works better, and makes more sense when you are rested. Wishing you well, one day at a time, my friend.

CDreamer profile image
CDreamer

You are working in a very stressful environment, I had to stop working in prison because of the stress and find other employment.

There are multiple jobs, you only have one life.

Some excellent advice above, improve your life rhythms, exercise, relaxation, good nutrition and sleep patterns, see a specialist and if I were you, I would ditch the Bisoprolol but reduce gradually.

Nothing will change until you change something.

cassie46 profile image
cassie46

I would agree with some of the others that 17.5 mg of Bisoprolol is very high, over 5 mg for me turns be into a zombie. Also Statins can cause tiredness, so you must seek to see a EP as soon as possible, he will be able to sort out your medication. Have you not even seen a cardiac consultant, if so you should refer to him. I know my GP is not allowed to prescribe for me she has to consult my cardiac team first. Hope you get it sorted, good luck.

Cassie

WendyWu20 profile image
WendyWu20

Sounds like you definitely need specialist cardio input.

Having worked both in the NHS (firstly as a nurse and later as a psychologist), and also in the prison service, I can empathise. In some NHS departments, attitudes towards staff and patients can be shocking - for a variety of reasons. Are you able to identify the exact reasons why your colleagues are unable (or unwilling) to acknowledge how poorly you are? Are you in a union that would be able to offer sensible advice?

Maybe it would help if you could approach the least unhelpful person on your team; firstly write out how you feel and what your preferred outcomes are, so that you can state things clearly when face to face.

It is a sad work environment when staff are unable to to speak out about a genuine health problem and receive support from colleagues. Sometimes it takes one person to stand up and find the courage to push things in a more positive direction.

Sending big hugs to you :o)

Bb53 profile image
Bb53 in reply to WendyWu20

Great post Wendy my god I've given NHS 35 years of my life and loved it but when I got ill no understanding.x

Pam296 profile image
Pam296

Hi Jo. Do you have any leave coming up as you need some time out to think and plan. If there is one thing I have found since being diagnosed with AF, it is that it can be hard work tackling the medical profession. As everyone else has said, you need to see the right people and have a medication review. I found it hard to cope with my job on 2.5 Bisoprol so I can't imagine how you feel. You know yourself that you need to make some changes.

KathFrances profile image
KathFrances

So sorry to hear of your difficulties. As your experience is telling you, you can't keep this up. And the drugs could be contributing to your exhaustion. I'd suggest you need to find out which drug and which condition is having what effect. Can you get a GP referral to an EP (or cardio if no EP in the area?) and then have one private appointment with him/her to start the ball rolling? I did this and was able to see the cardio the following week. If I'd waited for the NHS, my first appointment would be the middle of next month - 3 months after referral. The cardio made subsequent appointments (Echo, CTCA) on the NHS and I got these fairly quickly by calling the booking office and asking for cancellations. The cardio's private and NHS secretaries share results and info, so there's no problem going from one to the other. I will have one more private appointment and then probably stick to the NHS. It might seem like a big financial outlay, but could be well worth it. As others have mentioned, this is more complex than a GP can deal with.

Maggimunro profile image
Maggimunro in reply to KathFrances

Very shrewd move asking for cancellations. It worked really well for me too.

Mrchips profile image
Mrchips

Omg .... 17.5 mg of Bisoprolol ?!? That's way too much ! See a different GP and demand u need to see an EP/Cardiologist. There are other ways of treating this and making your life better. As for your work .... that's difficult but u have to look after you .... it sounds like you need some down time which I know can be difficult but u need it.

Stress .... has to be playing a part in all of this ..... shift work too. Can I suggest some apps on the mobile phone like "calm" and "headspace" for meditation. Deep breathing exercises really helps me out at the end of a long day.

If and when u do get some downtime look up AF ... study it if u can. We all have different triggers and it's a learning curve for all of us as to what triggers it and how we can deal with it.

Last but not least your not on your own. This place has helped me out and if I needed keep asking questions coz there are certainly answers to help you!

Good luck

Rellim296 profile image
Rellim296

As nearly everyone has said, you need to be referred to someone who will enable your AF to be better controlled so that it ceases to trouble you so much. It's not a very fatal sort of condition, it can be well managed and you do have protection from stroke.

There are different ways forward. Ever increasing amounts of Bisopolol may be all your GP can offer but this is far from being all that's available. There's flecainide for a start and this can be used when needed or on a daily basis. There is not only light at the end of the tunnel but a lift up to the surface. Referral to an EP has been a turning point for many of us.

Jamila123 profile image
Jamila123

Hi

I can really empathise with you ... i too. Am a A& E staff nurse similar age

And like u burnt myself out last year ..eneded in my own resus department so embarressing to say the least 😳WIth PAF diagnois

But i took a different turn to you i have always tried to be in tune with my body and i am a great believer in finding the cause and then treating the problem

Unlike orthodox view where they treat the symptoms and not sure of the cause which to me does not make sense u less in a emergency situation

I worked for the NhS and decided there and then to start on a healthy journey to find out what happened to me and why

I too worked 12 hours 80'hours a week often

I. Took sick leave many months off work and i was lucky to be paid sick pay this allowed me to reflect and slowly get better

I realised that inhad pushed my body like you to far causing a acidic body state

I was putting on weight and ended up at least 80 kg I had gut problem as well

So i changed my eating habit stopped all caffeine and suger

Only put in body natural good. Unj processed food no alcohol or smoking and stoped all dairy products

I did a dairy on my journy towards health and knew it would take years to put back what damage i did

I started to take herbal dried teas for health and heart

I put back the vitamins and minerals that my body lacked

The adrenals can also get burnt out causing weight gain because of the stress hormones

My journey continues i still now not had any caffeine or suger 😳

I feel healthier the journey takes times give the body time to adjust the chemical unbalances that we have done to our body

I never went on a diet just had healhty medicinal food into my body now because i am not stressed my weight has gone back to 63 kg this alone reduces inflammation

I did not take any medicines because i had PAF and still doing research

You will get better but u need to chamge things and think holistically about your body and life u might need to change your work i did

There are great jobs out here for nurses

If you drive try being a medical examiner for a company its great relaxed you are flexi and its like having yiur own business

Its a great job 🌸

Good luck on your journey 🌺

LindaDaisy profile image
LindaDaisy

I was put onto Bisoprolol which gave me nightmares and depression. Was changed to Carvidilol and was so much better. There are other beta blockers you could be on. Sounds like you need to see an EP. If your doctor has asked for the tests and you have no follow up, it sounds like he/she is managing it themselves. Ask the doctor to refer you to a EP or at least a cardiologist as your meds are affecting your quality of life.

songbird74 profile image
songbird74

I would say get off the bisoprolol - it made me a zombie but I am now on Nebivolol which has very little in the way of side effects for me (it is apparently more expensive so is not given as the first option) but it has made a huge difference to me.

whiststev profile image
whiststev

Hi,

I was initially prescribe bisolprolol 2.5 mgs then increased it to 5mgs and it made me feel very lethargic .ask for a review soon.

regards

steve

Amydandy profile image
Amydandy

I echo what many have already said. But also knoe that AFIB acting up at night is normal. Resting or lying down used to trigger mine, which seemed counterintuitive to me at the time. Also Metformin and some of the BP meds can make you bone-numbingly tired. I wish They hadn't started you on so many at once, so you could have sussed which is giving you the worst side effects. I was on a BP medication that left me so short of breath for a year, that I could barely go up stairs and got very winded every 100 ft. Docs all said it was my Afib. Once I was back in rythem and it still persisted, I finally convinced them to take me off it. I felt like a new woman. So don't give up and listen to your gut about what meds might be giving you side effects - how badly you feel might not be simply your conditions.

Jatizto profile image
Jatizto

Hi JoJo,

"Nobody seems to understand or take me seriously" you write... I DO understand and take you seriously. The question is... will YOU take the following seriously?

Considering how corrupt conventional medicine is I'm not at all surprised that they put you on a statin drug when you got diagnosed with diabetes type 2 despite that statins are a known cause of diabetes!

It is important for the public to recognize that most of the "scientific" research in favor of cholesterol-lowering statins is flawed and fraudulent (read Dr. Uffe Ravnskov's work).

The most reliable evidence has long tied statin use with memory problems, muscle disorders, liver damage, cataracts, nerve damage, arterial calcification, pancreatitis, erectile dysfunction, brain dysfunction, diabetes, tiredness, and with an increased risk of cancer and higher mortality. There are practically no, or only marginal, benefits from these toxic drugs.

The physiological mechanisms of how statins cause diabetes are also well understood, such as by their impairment of oxidative cell metabolism, the increase in inflammation and cell destruction, the lowering of cholesterol and sex hormone production, the promotion of pancreatic injury, etc. - rather thoroughly explained in a scholarly article by an independent investigator on how statins and a cholesterol-lowering popular diet pill promote diabetes if you search online for "Do Garcinia Cambogia Side Effects Boost Diabetes?" - study Figure 7 to see how irrational it is to block the production of cholesterol!

Yet despite of the existence of that scientific knowledge, the medical business and the public health authorities keep ignoring it and continue to recommend statins to diabetics and make claims that they have a low risk profile despite that they are also significantly linked to cancer and higher mortality (just look at the propaganda put out by the Mayo clinic on statin drugs: "the risk of life-threatening side effects from statins is very low").

And because of such medical propaganda, few people are aware that the medical claims of benefits of statins are mostly based on junk studies conducted by people with vested interests. And, logically, it's mostly the corporate medical business and other people with similar vested interests tied to it (eg, mouthpieces, hacks) who promote the alleged value of these highly lucrative products.

Also, older people with HIGH cholesterol live longer than those with low cholesterol levels (see above mentioned article for numerous scientific study references confirming this).

Because the cholesterol-heart disease theory, or rather medical dogma, is wrong, the use of statins is also wrong by logical extension.

So the real truth is that statins have almost no real benefit in the very vast majority of users. They do more harm than good (read Uffe Ravnskov's "The Cholesterol Myths" and Malcolm Kendrick's "The Great Cholesterol Con").

mrahbar profile image
mrahbar in reply to Jatizto

Thanks,I have done quite a bit of research too. I totally agree with you.

Bb53 profile image
Bb53

Hi jo jo I'm registered nurse to have had a stroke due to AF and have hole in heart ❤️ and mitral value problems having problems like you with meditations.take care x

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