Easy to get lost.: I've tended to think that... - AF Association

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Easy to get lost.

john6 profile image

I've tended to think that my medications Bisoprolol, Edoxaban & Dronedarone are not giving me any side effects. However, I am (unless busy) constantly fighting tiredness/lethargy. Why haven't I recognised this earlier? The answer being is that I have been blaming my age (74)!

Back to my medications and all of them have "Tiredness" as a potential side effect! In effect I'm having (3) lots thrown at me. I've always been a very active person not in an athletic sense but plenty of up and go - which has now to a degree, up and gone🙄

Does anyone take or recommend anything that (legally) gives them a lift, something that would not cause a problem with the above medications - basically a booster.

76 Replies

Crumbs John, I'll watch your answers with interest! I wouldn't mind something to give me the occasional boost either. 🏃‍♀️⛷️🏄🤸🚴‍♂️

If you find it - please share!

My get up & go disappeared over the horizon a long time ago! Some days now are just better than others.

Auriculaire profile image
Auriculaire in reply to CDreamer

I have been taking high dose thiamine in the form of Allithiamine every other day. I started this as it's recommended by some floxies to help with floxing symptoms and I have noticed an small improvement in energy and general wellbeing. I am able to work a little longer in the garden without feeling wiped out when I come in.

My get up and go has got up and gone a long time ago lol. Think i may plug myself into my three year old grandson and get a boost from his 24/7 energy supply.

in reply to meadfoot

😂 Should’t but I had to laugh at your got up and gone.

I am 76 and have found that Metoprolol 100 mg once daily will really fatigue me. 25 mg lets me feel fine but the cardiologist says I have too much fibrillation and flutter. So now I’m on 50 mg and seem to feel better. I’ll know Sept 1 if 50 does the trick as far as irregular heart rate. I was on Multaq (dodenadrone?) for awhile but the cardiologist said it wasn’t helping. I’ll let you know how the metoprolol change works for me.

john6 profile image
john6 in reply to cbaum

It baffles me as to why the medics have a tendency to start patients off on such high dosages. Logic says to me, start off low and if necessary work up which takes into account safety and whether one needs a high dose when a low one might do the trick - please keep us posted.

jeanjeannie50 profile image
jeanjeannie50 in reply to john6

Agree with you John.

I am also 74 and on 25mg Flecainide twice a day. Had to give up the Bisoprolol because it was too draining and I am low BP and low HR. Exercising gives me the boost to do more.Good luck.

beach_bum profile image
beach_bum in reply to saulger

I concur. Every single doctor will tell you, if you safely are able to, walk. Doesn't have to be brisk or for hours. Just get out and walk. The energy will follow 🙂

john6 profile image
john6 in reply to saulger

Unfortunately we all have different levels of Afib. Twice yesterday I had to walk up a gradient (nothing overly severe) and my chest started to feel uncomfortable and my HR started getting a bit wobbly. In general and on the flat I'm not too bad, however, different types of exertion seems to alter my situation.

saulger profile image
saulger in reply to john6

Yes, John. Flecainide has been a blessing for me - even at a low dose.Like yourself, I still get the pressure on the chest and the erratic pulse.

I found that the daily visit to the toilet is key to avoiding the AF trigger.

Hope all is well.

Snookersteve profile image
Snookersteve in reply to saulger

Hi, I notice that you are on 25mg twice daily of Flecainide. I am currently on 50mg twice daily which I believe is the usual minimum starting dose. I was wondering if you might advise me how you came to be on the unusually low dose of 2 x 25mg? I am considering asking my consultant if I can wean off Flecainide ie reducing to 2 x 25mg as a start. Do you just split the pills in half with a pill splitter or is there actually a 25mg tablet? Thanks for your help, Steve.

saulger profile image
saulger in reply to Snookersteve

Hi Steve. I was prescribed 50mg Flecainide twice a day and 1.25 Bisoprolol twice a day.

The Bisoprolol did not agree with me so I cut it out.

I am naturally low BP 90/60 and low HR: 56 at rest and it was too much.

I thought that I will start with 25mg Flecainide (a quarter of a 100mg tablet), twice a day, and I am doing great. The heart is steady and I get AFib episodes much less frequently.

My AFib is paroxysmal and I found that lack of bowel movement brings on the symptoms, so I pay closer attention to the other end of the body...

How about you; is your AFIB under control ?

Snookersteve profile image
Snookersteve in reply to saulger

Thanks for your reply. I had a cardioversion on 1 April and am pleased to say that I have been in sinus rhythm since so am wondering if I need to continue with the Flecainide hence the idea to wean off it gradually under supervision. My BP is usually very good 95 per cent of the time on 1.25mg Bisoprolol. However, it does go too high on the odd occasion when I get stressed. Your BP is exceptionally low at 90/60 so I can totally understand why the Bisoprolol was a problem, you must have been close to passing out if your BP went even lower.

saulger profile image
saulger in reply to Snookersteve

Steve, you are correct. When I first took the Bisoprolol and the Flecainide together, I nearly passed out more than a dozen times inside a few hours, hence my caution with the Flecainide dosage and leaving out the Bisoprolol altogether.

I believe that I am doing well now. If I don't over-exert I can maintain a steady ship.

5 months in sinus is a great result for you, and may it long continue !

All the best. Saul

Snookersteve profile image
Snookersteve in reply to saulger

Thanks Saul, keep up the good work with the moderate exercise and good luck to you! Steve

I am on various medications for Afib and breast cancer and all of them have similar side effects. Recently at a drug review with my pharmacist I said the same thing to him that I was getting X times of side effects thrown at me. He said I wasn’t and it didn’t work like that but that I just had X times more chances of getting those side effects but the level of the side effect would be the same as a single dose. Still not keen on the effects I do have but it was a good to know that.

I hope things ease for you and you get some energy back. x

Buffafly profile image
Buffafly in reply to Frances123

Well there goes my excuse 😬

Drs seem to think they know how we feel and what our bodies experience when we take these meds. Same with some pharmacists. I have yet to find a Dr who can crawl into my body and see how it feels like when I'm on a med. They have no idea how I feel. I tell them and all they know is what's taught them or what's written on a sheet of paper somewhere. Side effects can change with the dosage. They do for me and the same thing in my partner. And other people we know. Again not everyone is the same. Some experience meds differently.Take care and be safe.

john6 profile image
john6 in reply to Frances123

I had similar from my GP, ie it doesn't work like that, when I queried that one of my medications could give me Anemia - which I have. It does not follow that [all] patients are going to react according to their textbook - if only they would take the time to look a bit closer as they are not always right.

P.s. I have taken coq10 for many months and also take vitamin b12 methylcobalamin every so often. I do feel I have more energy, might be wishful thinking but if it helps then I’m happy. I am not a doctor or medically trained but did check with pharmacist beforehand it was safe for me to do so in all respects.

B12 is a vital vitamin that we loose as we age because we loose the enzymes needed to strip it from food. Of course it's safe. I would say take it regularly not now and then. I have too, it's vital for patients on thyroid medications.

KMRobbo profile image
KMRobbo in reply to FancyPants54

Also post ablation i was always tired and did not improve as much as i thought i would . So i got a blood test from my GP in case of anemia and i was not anaemic but my B12 was low A scan on the meds revealed the lansoprazole I was given in case of pradaxa reflux, prevents absobtion of b12 from the stomache. Which is 80% of it! ( or so) . So i ditched the prazole as i did not have reflux add i felt less tired after a few weeks . So i can confirm low B12 results in tiredness.

FancyPants54 profile image
FancyPants54 in reply to KMRobbo

PPIs are lethal to all vitamin and mineral absorption. Yet they hand them out like sweets!

Thank you and I agree for me it is safe but I choose to have a break of a week or two between a 2 month supply. Regardless though anyone thinking of adding OTC medications or supplements to their usual medication should always check it out with the Dr or pharmacist first as we are not medically trained or know the persons history.

I've yet to find a GP even remotely interested in vitamins and minerals apart from perhaps a perfunctory nod towards vitamin D. I'm from a thyroid background. Many of us would be dead if we had waited for instruction or confirmation from a GP or even endocrinologist. We have had to learn and do it ourselves and help each other.

Medications are different. I would never advise on a medication. But hormones and vitamins and minerals are important but overlooked and so I'm happy to advise on those. It comes from 8 years of being at the coal-face.

john6 profile image
john6 in reply to Frances123

Thank you I will look that one up. Whether it works physically or mentally - it will do for me.

Frances123 profile image
Frances123 in reply to john6

methylcobalamin B12 is better than the cyanocobalamin B12 (cyanide) which is synthetic. Costs a lot more but worth it if you can. Easier to check it yourself than trying to explain how they both work.

Hi John, I don’t think a Dronedarone effects the thyroid in the same way that Amiodarone might but it might be worth having your thyroid function checked. If it’s under active, it’s likely to make you feel lethargic.

On a different note, not sure where in Wales you are from but just back from a trip to Pembroke and Cardigan……..beautiful!

john6 profile image
john6 in reply to FlapJack

Hi Fj, I have a telephone appointment with the Cardiologist who is overseeing me on the 19th, I will bring it into the conversation, nothing lost by asking.

Yes, it is a lovely neck of the woods down there. It is in many respects an ideal place to retire ie cheaper housing with a lot more for your money, along with a slower pace of life. Once you get to know the locals, it is as good as anywhere. In general we live in a beautiful country up and down, as such my wife and I feel very much at home travelling from the Bath M4 turn off going down past Warminster, Salisbury and on to Bournemouth - what more could you want?

Hi John,I had a similar story, about 8 years ago - couldn’t tolerate Bisoprolol - needed to lie down 30 minutes after taking it. Tried Atenolol and Propanolol with similar side effects. One cardiologist tried me on Carvedilol and that was much better.

I’ve had to play around with the doze, as even that can have an effect. I take 3.125 in morning and double that at night - taking the double doze in the morning slows heart rate down too much, hence the lethargy.

One other piece of advice, if your cardiologist agrees, is to take most of your beta blocker medicine at night, before bedtime - was mentioned to me by cardiologist recently, so may be a possibility.

It took me a few years of pain to get the right beta blocker (& amount) - hope you can get there soon.

Good luck 🤞

john6 profile image
john6 in reply to Malmac

Thank you. Just like yourself I have altered in particular my Bisoprolol in trying to get the best result with the least problems. The first time around of taking it at night gave me no end of problems, as it slowed my HR down too low (30s), I ended up going onto Nebivolol which is (to me) milder, it stopped my nighttime Afib. However, I am back on a lower dose of Bisoprolol 2.5mg which might be worth tinkering around with once again.

I was going to suggest a thyroid check too as I'm subclinical hypothyroid. Flapjack's response implies that one of the meds might impact on thyroid - sometimes it's a problem of absorption. I take vitamin B12 in liquid form for my thyroid plus vitamin D (less Sunlight often in Wales!!) And if I get low I have some lava bread with my poached egg.

No idea what lava bread is, but you are on the right track there. Singwell. When we become hypothyroid and take replacement hormone for it, the NHS will only give us Levothyroxine, which is the storage hormone T4. That has to convert to the active hormone T3 to get into the cells and do us some good. There are vital co-factors to enable this. They are optimal (not just in range, but top of range) B12, Vitamin D, Folate and Ferritin. All optimal, all top of range. A GP won't bother provided you are in range somewhere! So you are doing all the right things, possibly with the exception of ferritin, which you can have checked and aim to get it to around 90.

If you take B12, you should also take a good quality B-Complex supplement too. This will keep the B vitamins in balance and not let it swing too far towards B12 only. All the Bs are important to us.

Thanks for the vitamin B tip. I'm planning a full raft of thyroid tests at some point but since I'm post ablation I don't want to mess overly with current system. Lava bread is a product made from a particular seaweed that grows on the Welsh coast and it's delicious. Lots of iodine...

Be careful of the iodine. They used to use iodine to tamp down hyperthyroid patients. It can lower your thyroid performance. So don't overdo it, but enjoy it when you do have it.

john6 profile image
john6 in reply to Singwell

Thank you and will mention the thyroid, not so sure that I fancy the "lava bread" 😳 - no doubt delicious😉

Know the problem.

I think the person who said exercise was on the right track. It seems to be a mental tiredness, not physical, and if you can get your brain to make the decision to get up and go out you may find some benefit and at least some sense of achievement. Being outdoors has definitely been good for me. Good luck and take care.

momist profile image
momist in reply to Warrenite

My experience on a beta blocker is that it slows the heart's response to exercise, so you feel tired at first. But if you persist, the response does ramp up after a while and you can still climb that hill. It tends to stop you getting started though, which is making life harder.

john6 profile image
john6 in reply to Warrenite

Yes exercise definitely works for some, unfortunately I am not part of the (some) group. Yesterday I had upper chest discomfort along with my heart rhythm starting to change. Another warning for me that all is not well, is discomfort in the inside of my left arm, all courtesy of walking up a slight gradient. I have mentioned it to the medics in the past and does not seem to capture their interest.

I’m on 50mg flecainide and 1.25mg bisoprolol. I still play golf twice or three times a week and feel ok. Energy wise I feel tired in the morning but after a nice hot shower seem to waken up. The one side effect I seem to get, as I take the bisoprolol at around 9pm, is regular hallucinations. Last night I thought I saw some sort of animal jump off the bed. I’ve seen apparitions of figures in my room as well. Does anyone else get this. Must admit it spooks me a bit. Maybe I’m just an odd ball but I have read that it can be a side effect of bisoprolol.

john6 profile image
john6 in reply to Profound15

I used to play golf quite a lot - not now. Whilst I do not have the hallucinations that you have, I have had multiple dreams of impossible golf shots (crazy stuff), clubs missing from my bag , cannot find my tee peg or ball I'm playing with, no doubt all linked to something else in life.

I would say undoubtedly that the chemical content of your medication is causing your problems. In the days (back many years ago) we used to finish off a meal with a brandy coffee cream, it was a superb end to the night but I always ended up with the mother and father of nightmares. I stopped the brandy = no more nightmares.

No you're not an oddball. I had to reduce my dose of Flecainide as I was getting hallucinations at night.

Thanks Jean. I’m on two doses of flec so that might be causing them.

I was taking 100mg Flec morning and night, now take 75mg at night

I’m on 50mg twice a day but also 1.25mg bisoprolol. Read that can cause them also so combined it must be an issue

John, if you have the finances and are unattached, you could try the Sugardaddy approach. Don’t think medics would prescribe and big pharma definitely don’t recommend.But, there are loadsa beautiful young ladies out there who will say, ‘I do’ if you can provide the lifestyle they desire. Your tiredness will be a thing of the past though your bank balance might deteriorate!

FlapJack profile image
FlapJack in reply to gtkelly

An interesting approach to the problem although I guess you could end up totally knackered, broke and dead but possibly dying happy. Me thinks John6 is a Happy Grand Pappy so it will be interesting to see what he thinks 😂

john6 profile image
john6 in reply to FlapJack

You got me summed up 😄

john6 profile image
john6 in reply to gtkelly

Ha ha I like your style, obviously the distraction method 😄.In any event I think that the temptation to see if I was 19 again would see me off as these days I cannot even handle a cup of tea without a problem surfacing, tbh the power of thought would have me waving bye bye 😇

You might try taking lower dosages of the meds you're on. See if the strengths that you're taking are necessary to keep you in a sinus rhythm.

If you aren't certain when you're in afib and when you're in a sinus rhythm it would be of value to order a pocket EKG machine in order to keep track of your heart rhythms.

john6 profile image
john6 in reply to HiloHairy

Yes some good suggestions. For the first time in years after a change of medication I am getting more good days free of Afib, however, it doesn't mean that the dosages need to be the strength that they are. I will mention it to my Cardiologist on the 19th - thank you.

When I complained bitterly about the side effects of Statins and Bisoprolol to the consultant several years ago his advice was simply to stop taking them. So I did. Felt a lot better. So now the only thing I take is Apixaban, good food, and exercise in the fresh air. I'm 77 and have SVT occasionally.

All the best.

Roy

john6 profile image
john6 in reply to RoyMacDonald

I am glad that you have found what works for you. We all have different Afib and I get a wee bit annoyed at the lack of follow up and suggestions from medics re fine tuning ie increase/decrease/stop medication. I'm pretty certain that my medication is leaving me short of breath when [say] hill walking, in the past I used to attack them, today I have to take it easy. It might be worth me suggesting dropping or taking smaller strength medication - thank you.

HiloHairy profile image
HiloHairy in reply to john6

Before I did so I queried my cardiologist. He was pretty negative about it but I tried it anyway and it's worked nicely. The downside of course would have been a few unanticipated afib events but I thought it was worth taking that chance.

john6 profile image
john6 in reply to HiloHairy

A pity that the Cardiologists are not a bit more pro active in fine tuning as opposed to thinking that they have cracked it. In doing so it would/could save the NHS a small fortune re medication.

HiloHairy profile image
HiloHairy in reply to john6

Yes, it would save on medication but would cost the doctors more time.

I should mention that to cut down on my medications I had to get somewhat creative; I was prescribed Multaq which only comes in one dosage and is not time release so I cut them in half and it works just fine. I was given Diltiazem XR120 which is the lowest dose available. It is time release but at least in the US is made up of two slow release discs. After making sure of this by calling the manufacturer, I remove one of the discs from the capsule and simply take one disc a day.

john6 profile image
john6 in reply to HiloHairy

Good on you doing your homework.

I agree with HiloHairy- I’m extremely sensitive to medication. Tried a few betas and Diltiazem over the past year…on 25 mg of atenolol I would hit a wall around 5 pm or after exertion (although I’m not sure the “after exertion” is part of the medication side effects or the illness itself.) Recently my doctor told me I can cut since I’m still not officially diagnosed so I take cut gradually now only take daily as I get symptoms… 1/4 tablet at a time.

The terrible fatigue spells AND worse Depression went away almost immediately .. the fatigue/sick feeling after exercise is still around but not as bad. When that happens I take 1/4 pill. Generally I stay at about 12.5 mg per day now and feel much better overall with more palpitations breaking through but BETTER overall.

I think when cutting meds as experiment we have to first ask the doc - but be safe about it. Make sure we can easily go to ER if something suddenly happens as a result (Ie don’t do this while travelling) …

So be smart about it and cut very gradually.

It seems like a tiny dose of atenolol but I couldn’t get through a day without it as the pervasive sick feeling and faintness return.

Also atenolol is not supposed to be used as PIP (was Told by pharmacist) so some regular amount needs to stay in the system - basically I take it when symptoms prevail

I have come to realize that using these meds/ this “disease” can be a bit of a balancing act between symptoms of the disease vs symptoms of the medication.

john6 profile image
john6 in reply to Chrissy7

Some excellent points and I am inclined to agree with you that it is basically in some cases over medication. I have never been convinced that unless you are born with a low HR or underlying health issues that the HR should be below the recognised low of 60 bpm. That in itself is I'm sure enough to make us breathless as not enough oxygen is being pumped around the body. More questions to ask the Cardio on the 19th - thank you.

Chrissy7 profile image
Chrissy7 in reply to john6

On 25 mg of atenolol my HR was going to 45 at night and once even 42!This morning it went to 47

At times (upon light exertion) it will jump to 180. I’m still waiting to see EP and undiagnosed by the way… so I can only tell you my personal experiences CD with these meds in the first year….

I felt less tired when I moved away from Bisoprolol to a different beta blocker.

I echo what's said above: Get your thyroid tested and ask reception for a copy of the results for your records. Unless you are practically dead the average GP will just say you are "fine" if the results are somewhere in the reference range. But that's no good to many of us. We need our TSH below 2, close to 1 or even below, and we need whatever other test they do (or not) to be in the top third of the reference range. It's a long standing battle with NHS to get proper thyroid testing. Most of us resort to doing our own in the end so that we can get a full test of TSH, FT3 and FT4, but start with the surgery and see what you come up with. Also ask (at the same time) for your Vitamin D, B12 and iron to be checked. These things drastically affect our energy levels.

If you can, get outside every day.

I am out most days albeit driving and a general walk at the other end. At the moment I am also having to contend with Anemia, so I am guessing and also taking on board suggestions from others about cutting down on strengths, that it could be quite a combination of things but not insurmountable. I will mention the tests that you have written about and see what they have to say - thank you.

Chrissy7 profile image
Chrissy7 in reply to john6

Please just always make sure you ask your physician or cardiologist before you cut any medication!

john6 profile image
john6 in reply to Chrissy7

No worries on that one , I would not alter my medication without consulting.

Hi I'm also on multaq 400 and bisoprolol 1.25 energy is limited except for spurts where I could run a marathon but see afterwards knackered but I must say vitamin b12 does seem to help a little bit I wish there was a magic bullet sometimes fatigue is a total battle

john6 profile image
john6 in reply to Tomred

On the same medication as yourself except I'm on Bisoprolol 2.5 mg, it is doing a job but I seem to have swapped one problem for another. Anyway questions to be asked and will get back to you if I find the magic bullet.

I hear you loud and clear! Getting off Flecainide really gave my energy a boost, but I'm on Metoprolol and Dofetilide now which tend to sap my energy. I've found that I need more sleep, and when I get it, I have more get-up-and-go. No, it's not your age!!!

john6 profile image
john6 in reply to Snowgirl65

Thank you and glad you have found your zip. It is too easy to just accept it ie fatigue - questions will be asked, as to whether I get the right answers remain to be seen. I not giving into age, it's just not happening😉 Thanks again.

Snowgirl65 profile image
Snowgirl65 in reply to john6

👍

Hey John...Why not try dating a young blonde. She’ll probably lift the ‘lethargy’ but could also cause you other sorts of grief. If you find someone, ask if she has a friend ‼️‼️‼️ 🤣

I have found I am sensitive to Flecainide. I am fine taking the 50mg x 2 daily and have done so for circa 17 years, but if I try taking one more in Afib I am quite ill. Another thing I have found with other medications is the fillers used and they can cause me other unwanted side effects. Was hard to believe that something I thought quite innocuous could have such an effect. Had to try a few generic brands with Flecainide and a BC medication before I found ones that suited me. Is now on my script to only have those 2 e you feel better soon.

Thank you. Not long after starting Flecanide I landed up in Hospital for the first time in over 50 yrs. They took me off of it and I have not felt like it since, so can only assume that it was the culprit.

The fillers are not something that I have ever given much thought too, basically I guess many keep an eye on the main ingredients whilst they slip under the radar - something to watch out for. Glad you are alright now.

Frances123 profile image
Frances123 in reply to john6

Thank you John.

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