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Pill in the pocket

Byke profile image
Byke
15 Replies

Hi. I started with AF. In June this year. After two weeks of taking Bisoprolol and apixiban I was dizzy most of the time and then I was just falling over, very tired and couldn’t do anything which resulted in tears. After two weeks and feeling faint I couldn’t get through to my doctors so rang 111 who told me to go back to hospital as blood pressure room low. When there I was taken off Bisoprolol and left on just apixiban. I was told I had something starting with p cut short PAF. Not sure what this is. I have since got out of breath easily. I did go into AF yesterday for about 2 hours but managed this with drinking cold water and deep breathing. I am at hospital tomorrow for a scan and 24 hour monitor and after this I will be given pill in the pocket to help when I get AF. Not sure what these tablets do but going on holiday (in UK) on Saturday and hoping I won’t go into AF. Won’t get the pill in the pocket until after a phone call with doctors in August.

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Byke profile image
Byke
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15 Replies
BobD profile image
BobDVolunteer

PAF stands for Paroxysmal Atrial Fibrillation which means it comes and goes. Pill in Pocket is usually a drug called flecainide which is a rhythm control drug which should restore normal synus rythm (NSR) .

AF is quite scary when you first get it but it won't kill you if you avoid trying to run a marathon or do SAS selection whilst in AF. The bisoprolol is a rate control drug to limit how high your heart rate goes when you are in AF. The apixaban is an anticoagulant to help prevent stroke which AF makes us more prone to so never stop that.

I suggest that you go to AF Association main website and read till you drop as knowledge is power.

As far as your holiday goes , yes go. Whats the worst that can happen? Feel rubish stuck at home or feel rubbish somewhere nice?.

Byke profile image
Byke in reply to BobD

Thanks for that. I am finding it a bit scary, what I can and can’t do safely. I especially like the part it won’t kill you if you’re not running a marathon or similar. Puts things back into perspective for me.

wilsond profile image
wilsond in reply to Byke

Change of scene will do you good I'm sure . As Bob said it's scary on diagnosis ,and even now after 7 years, still have to give myself a good talking to sometimes to remind myself it's ok,I'm medicated and have improved lifestyle etc. Funnily enough pre AF I had a very stressful job,poor work life balance ,overweight etc. I'm sure I'm much healthier now even with AF them I would have been without!

I had some issues with bisoprolol but in the end we found that 1.25 mg twice a day keeps me steady . Flecanide is very good ..fir me anyway, used as Pill in Pocket (PIP) and as regular dose.

This forum is very good so many nice people on who are very supportive .

You will be on track again soon I'm sure xx

Byke profile image
Byke in reply to wilsond

Thank you for your response. It is a bit scary but people on here are so friendly and helpful, this is what keeps me level headed about it. Lots of people have it, it’s nothing new and the information they all have is incredible. It’s a brilliant forum.

Desanthony profile image
Desanthony in reply to Byke

I couldn't get on with bisoprolol and other medicines of similar type - I think I tried 4 or 5 different ones and then combinations and different amounts but in the end when I couldn't even walk downstairs I got the cardioloigist to stop them. She did and put me on digoxin and then had to lower the dose of that which I was on for about 3 weeks before my first successful cardioversion and since then - even when I went back into AF between my two further cardioversions they did not put me back on digoxin just the apixaban. I used to be fine for maybe 2/3 weeks and then would feel really bad so it wasn't worth taking things that didn't really help. Thankfully I am still in NSR after my third cardioversion back in February. I have persistent AF and am waiting for an ablation which I should have had in April but C19 stopped that. However, it looks like our hospital is waking up as I got a letter from them about getting ready for my op.

Byke profile image
Byke in reply to Desanthony

Thanks. I am on just Apixaban now. Hopefully I will get the pill in the pocket and things will be ok. Hope you soon have your op soon.

Desanthony profile image
Desanthony in reply to Byke

Thanks. Thing is I feel so good now don't want to go through it all and feel poorly for a few months afterwards. Think it has to be done though.

DGET1 profile image
DGET1

Hi, I do pill in the pocket for PAF, so far works quite well. I also couldn't tolerate daily bisoprolol,felt like " a wet weekend" .

Jonno45 profile image
Jonno45

BobD is spot on. The AF Association have been brilliant for me and also the nurses at the BHF too. I am on Bisoprolol & Apixaban but it took several months for my system to settle to them. You have to give them a good chance. Best of luck.

Af2017Hn profile image
Af2017Hn

Thank you for writing all of that, I take the same pills, and I am constantly tired! My doctor just said it was better than getting AF. I have only ever had to go into hospital once with my AF. I too get breathless, and sometimes feel I am about to collapse, I take a piece of chewing gum, and breathe deep and slowly. This always helps.

Recently I have started to go to bed earlier, and get up later, and I feel much better.

Try not to worry, it only makes things worse, think positive thoughts, 'I am ok!'

good luck!

in reply to Af2017Hn

It really bothers me how many doctors do not take quality of life into consideration. They send you off with meds that make you feel horrible and say there is nothing else that can be done.

Try getting to the root cause of the problem instead of putting bandaids on symptoms.

I know I feel amazing now that I am off all prescription drugs and have not needed to pop that PIP for over 18 months.

All I can say is that poor nutrition is probably the cause of most chronic illnesses. Even if you think you are eating healthy, you may not be for your own personal biochemistry. We are all different. You could have food sensitivites or allergies to foods that are fine for others.

I highly recommend you get your nutritional status checked. Check out the Spectracell Micronutrient test. And get tested for both food allergies and sensitivities that cause a delayed IgM reaction. You probably need a functional medicine doctor and if in the UK would have to go private.

BobJ52 profile image
BobJ52

It is very scary when you start with Paroxysmal Atrial Fibrillation but as others have said it’s unlikely to kill you , especially if you are sensible and don’t try to exercise excessively when in PAF. What dose of Bisoprolol were you taking?

I had 6 trips into A&E in 7 weeks when first diagnosed because I felt sooo unwell, twice bluelighted and straight into resus because of chest pain and breathing difficulties. Now on Flecainide 100mg twice a day and Bisoprolol 2.5mg daily and having done the NHS Couch to 5K program I am running between 3 & 5K three times a week. Scans etc showed I have no structural issues with my heart so Cardiologist is happy with my progress.

Was on Flec 50mg twice a day and 7.5mg bisoprolol but my resting pulse was too low at 45 and BP 90/60 so have adjusted drugs to the point I am at now.

Don’t let it get to you too much if you can and keep adjusting your meds until you get what suits you. Keep taking the apixeban whatever as that stops the common side affect of AF which is a stroke, you definitely don’t want to risk that.

Good luck, go on holiday and try to relax and enjoy, the worst that may happen is a few hours in a strange A&E if it gets out of hand but enjoy the change of scenery anyway

Byke profile image
Byke in reply to BobJ52

Thanks for that. I have just had heart scan and 24 hour heart monitor, so hoping to get pill in the pocket soon. I will go on holiday, it just sometimes feel that I am waiting to go into AF, when it may not happen.

Northcote26 profile image
Northcote26

Hi let me know what brand the pill in the pocket is I couldn’t take bisoprolol ether dizzy felt sick and had trouble walking . My doctor told me to take small pieces of the tablet but like you it’s didn’t agree with me

Byke profile image
Byke

I don’t know what it is yet, I have been for scan and 24 heart monitor, and then I should be able to have it. Will let you know what the name is when I get it. I was feeling pretty bad and unstable on my feet, blood pressure was really low. They didn’t advise taking small pieces they just said I have PAF which means I am not in AF all the time so pill in pocket much better and would just take it when needed.

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