Hey guys... I'm a recent observer and visitor to this forum. I have a lot of respect for you all! I care for my 83 year old mother who has been battling AF (and the system!) for just over a year now. I believe she is too old to cope with a pacemaker/ablation although her cardiologist persists in offering it. I don't think she would come out of the anaesthetic very well - she is already suffering from some brain haemorrages. ANYHOW... that's not my question... She has had adverse reactions to beta blockers and since she has been in AF since 29th DEC her GP has recently started her on low dose of Diltiazem. Doing great for about a week but in the last couple of days she has become increasingly more tired yet can't seem to sleep or settle at night. She wakes frequently and throughout the day has hot flushes. She just seems so low in energy - similar to what she was on BB. The small mercy is that her HR is being kept under 90 and her thinking is clearer but just so tired and listless. Has anyone got a recommendation for an alternative CCB? We don't see the GP for another week unfortunately. The poor thing is just so fed up with feeling so lousy. A terrible way to live... if you can call it living. 😔
thanks in advance for any advice...
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Unify72
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Difficult situation as all of these drugs can present with side effects. A lot of people don't tolerate beta blocker and diltiazem has it's own baggage and isn't always advised for the elderly. Sometimes they add digoxin, but again, it may come with side effects. One can trial different combinations, the idea being that the dose will be lower for each drug with a similar cumulative effect, but that requires patience and monitoring above what many doctors are willing to do.
Ablating the AV node with a pacemaker hopefully will eliminate, or greatly diminish the drugs your mother will have to take. I get your hesitance with the anesthesia, have it myself, however different doctors (and mainly hospitals) vary in their approach here --from local to conscious sedation to general anesthesia. You might want to look for a place that will do this more in the local/conscious sedation range. This means you might have to consult with more than one doctor, if feasible.
You mention a cardiologist, but if you aren't already, you should be going over all of this with a ep (electrophysiologist) who will know better what might work for you mom.
Jim the first I heard of an EP was on this forum. The cardiologist doesn't give out much info here. I have to ask a lot of questions. I guess my hesitation with the pacemaker/ablation (I know little of the process) is the impact on my mum's brain going through any sedation. I've heard a few people say how there parent was never the same again - cognitively. Mum is already battling the affects of brain haemorrages. I will look into it further though...
Hi Unify - sorry your Mum is finding life so difficult.
Just a couple of things - both ablation and Pacemaker implants do not require a General Anaesthetic. Ablation can be done with sedation and Pacemaker is usually done with local anaesthesia and IV pain killers, with sedation if there is a lot of anxiety. Secondly 83 is relatively young and certainly not too old to consider treatment in my opinion, I found pacemaker has given me such a huge improvement in my QOL. It obviously depends upon the person as some people are much frailer in their 80’s than others. My husband had a pacemaker implanted at 83 - implant late afternoon, kept overnight simply because of his age but discharged 9.00am following morning and had no problems.
Having had some brain haemorrhage I also wonder how that contributes to the experienced symptoms? I would imagine that will be causing some cognitive impairment and may also contribute to fatigue.
Personally I don’t take any medications other than anticoagulants now but when I did, I like your Mum, couldn’t tolerate heart medications at all and felt much better without them, despite the AF.
Withdrawal from Beta Blockers I found causes symptoms such as heightened anxiety, depression and sleeplessness especially when it’s a sudden withdrawal but everyone reacts differently and some people have no problems. Hopefully you had support from your doctor to titrate down slowly?
Diltiazim is a calcium channel blocker and like all meds does have side affects but what I found was that it’s really hard to know whether it’s the meds or the AF which causes symptoms such as fatigue as I was just as exhausted for days after an AF episode with high heart rate - the only difference was in NSR and not on meds I felt much better.
The other thing to mention is that you really need 3-4 weeks for your body to adjust to a new medication. Hot flushes though are listed as a side effect of Diltiazim so it maybe you need to go back again to the GP/Cardiologist and have another discussion about treatment options.
Other members may have different ideas but hopefully they will all help you and your Mum to understand the complexity of living with AF and the various treatments when sometimes the ‘cure’ is worse than the disease, IMHO.
I have always thought it worse to watch a loved go through this stuff than it is to experience it oneself, I saw just how worried my husband would get when things get bad with me and often thought he suffered more whereas I just get on with what I can do rather than worry about what I can’t.
thanks CDreamer... I never considered coming off the BB slowly and nor does it seem did the GP. My mum went from Digoxin to Nebivolol (which was great until she developed an awful dibilitating rash and itch) SHe then came off all heart meds accept anti coag. while in NSR and tried Metoprolol as PIP but the AF kept bleeding through so she went on it daily micro dosing with Flec as PIP. It then quickly showed signs of bringing on the rash again and very "out of it". She usually comes out of the AF but has been in it consistently since New Years Eve. GP concluded that BB are just not for my mum so Diltiazem it is to at least control the rate of the persistent AF. She's been on 1/2 tablet 3 times a day for a week now after 1/2 tab for a week prior. It's kept her heart in the 70's and 80's and stabilised her BP which is great. Just starting to see the negative effects now... or so we think.
I was on Diltiazem and it controlled my h/R day. Night is always @47.
Metroprolol BB or Bisoprolol BB could not control H/R Day.
A year gone since the. last change I started getting a bit lightheaded evening.
So morning of 23rd I took my BP and H/R at 7. 8. 9. it stayed at 67. So I decided not to take diltiazem 120mg that morning and to check. It rose and was too high at 1.30pm.
Then I too Bisprolol 2.5mg.
I took 1.25mg at night.
Now I take 5mg Bisoprolol 8am and 8pm.
An ECG 2 weeks ago still shows AF. Boo Who.
CONTROL os H/R and BP is important.
My hot flushes stopped with Diltiazem unless I exert myself continually.
The lowest dose in NZ of Diltiazem by ACCORD which is not MEDICARE TICKED
is 120mg.
I have fatigue. I'm 73 with rapid persistent Day H/R
I see my Dr next Tuesday.
CCB was best for me as it controlled H/R Day and BP. I am going to ask for a low dose of CCB.
Be patient and note symptoms of any change.
She could do with a 24hr mnoitor. I cant have an ablation.
Public left me for 2 years 3 months uncontrolled after a stroke and within 4 months of the stroke, I had the thyroid papillary cancer removed. This hyper thyroid had caused the AF which caused the stroke. I was not on any meds prior.
Sorry to hear that JOY... Our GP is very good at giving low doses to my mum to start. She is now on 30mg 3X a day. This is controlling her HR and BP. We have had little ongoing support from the neurologist and cardiologist here in Australia. I don't have a lot of faith in them I'm afraid. I seem to be doing all the work to monitor and come up with solutions to help mum. SHe was a different person off the meds while in NSR but has sadly been in AF since New Years Eve and hasn't budged. I truly believe that once you hit your 80's that there is the "conveyor belt" approach to treatment. I saw it with my incredibly fit and healthy father who at 83 was diagnosed with cancer and his oncologist simply said... you've lived a good life! I'm sticking close to mum and the goal is to treat her at home and give her back some QOL.
Diltiazem before I started it in December 2021 by a private specialist was discontinued in the 30mg and I think 50mg range by our PHARMAC.
Then I was told in January that the ACCORD manufacture was substituting the Medsafe manufacture of it but only 120mg and 180mg available.
Here in NZ put on or chAnged over to a non medsafe drug we are supposed to sign a non liability form. I haven't.
CCB Diltiazem was a game changer. It controlled H/R and kept BP down so that I was able to have a separate operation - removal of Johnson & Johnson ragged mesh. Our ACC insurance company finally agreed to fund because yes it had gone into a vital organ.
So the point with control is to keep H/R under 100 day and night. And control our BP.
I am now happy to be on Bisoprolol (it helps my essential tremor in left hand) but After mowing lawn with exertion I believe that it does not cope .. So I didn't cope either. I staggered inside after resting, sweat streaming down face got a drink of water, said a few prayers, and eventually came right.
Which is why I will need to talk to doctor about it.
This morning before med was 136/87. 77 H/R which had crept up from 67.
At 9am I had my Bisoprolol.
At night after med. 109/78. 81 H/R
But a 24-hour monitor is worth having as it gives everyone a 24-hour picture.
Unfortunately you are the best person to monitor her.
Cancer is a different picture. A friend has a benign bowel tumour. They took out what they could and are monitoring it. Because it is non cancerous and because any further treatment would mean this 80 year would have a bag etc.
Another young friend has a brain cancer. It is inoperative. A week prior to the fit she was proposed to. She has been given 1 year if treatment of intense radiation and chemotherapy works (sending the biopsy to Australia for their opinion) up to 5 years if the treatment works. SAD.
Thinking of your father his TRIAGE TEAM have assessed his age, treatment, QOL,endurance etc. Probably talked it over with him and your mother and you got the decision.
I went against protocol when I refused RAI Radio Active IODINE after my Thyroidectomy. And then suppression. I figured it was my right to TRUST the surgeon who did an operation on my right breast and I refused radiation on that in 2005.
Research says that if LOW RISK of cancer returning LISTEN TO THE PATIENT.
Average age expectancy is 83, I believe and higher for women.
We can't live forever for those who love us.
I'm 3 years 4 months living after an Embollic Stroke, 3 years clear of cancer - Feb is my anniversary to be checked with a Neck Scan. Thank the Lord God.
I lost my Mum from a Care Home at 83 years because they did not diagnose a Urine Infection! I watched her die in hospital without antibiotics, saline drip just a morphine pump. Poor thing.
I had looked after her in a new Unit S/C at my home. Never had a urine infection except when she arrived. 3 years when I returned from working in UK.
Ex nurse treatment for any cancer is horrid and tough.
Your Mum needs you monitoring and she is safe.
I may have saved my disabled (broken femur at 85) if I hadn't had flu the month preceding her demise. It was a monthly 400kms trek down to Auckland.
Take caring in your stride. Relax and think of that you are an asset in your mum's wellbeing.
I was the only family member by my dad's side when the decisions for treatment were discussed and decided. It was very disappointing to experience the oncologists attitude to my dad. He actually made a crucial mistake in reading the final xrays by telling my dad that some of the tumor was shrinking and other's stabilised after experimental immunotherapy. Dad's GP who also volunteered at the local cancer charity saw the xray and gave us a very honest reading which was opposite to the Onc. When I questioned the Onc. I had to speak to his secretary to pass the message on... Onc didn't even respond in person. Some ridiculous excuse from his secretary!! So that was it for Dad... again I didn't leave his side until the very end - "walked" him all the way "home". So now for my mum I will do the same and there will be no compromise. The only difference will be that unlike my dad, I will make sure mum is at home and not in palliative care when she leaves. The nurses in palliative care were amazing though don't get me wrong - just not where you want to spend your last days that's all.
So heartbreaking to hear of your experience of the care home. I hear many stories like that and had family members when I was very young go through similar. Another reason we are keeping mum mobile and in her own home. Her AF and subsequent health issues only diagnosed 14 months ago... driving and playing bridge until then. The suicide of her only grandson literally broke her heart 3 years ago and she hasn't been the same since. I guess AF was on the cards from that point on.
Take care of yourself JOY... I hope you have some compassionate family members to walk with you on this journey!
Yes but OK anywhere if SOMEONE CARING oversees things.
Just come back from visiting a carehome in TAUPO.
John now 80 weighing 63kg is in care. 2nd day tried to pull curtain and
feel backwards. Diagnosis 2nd day after broke his hip his concrete floor!
No walking, change pad twice a day. No routine toileting so he has bottom sores! No reading glasses and I brought him some mags and 2 easy books, no radio, no afternoon tea! I asked an hour later.
Asked if would agree to a catheter he said no.
Ate at tea 2 squares of omelette only. Left bread. Nothing else.
Honestly no outings!
He was in hospital 28 days and he would not have had sores on discharge.
I'm disgusted but I am 8-9 hours away.
His brother is so called looking after him.
Dirty water bottle. Has a jug and glass too.
Itching top of hands - a rash but he scratches them raw. Putting a lotion on it only. He started itching his left leg through his white stockings.
No radio.
I've written to Manager.
In UK do they have concrete floors?????
Pain not under control. He finally stated a 7 pain level.
I think she needs to speak with her GP about alternative CCBs that may have different side effects. I would also ask her GP if it's worth considering adjusting the frequency of taking Diltiazem. Maybe taking the same dose but splitting it and having it after food (slowing down the absorption rate) might help.
Thanks Paul ... yes her GP is excellent at slowly introducing dosages to mum. SHe is very sensitive to medications. She started on 1/2 tab morn and night but by the time she woke her HR and BP were getting to high so we've just started 1/2 tab 3 times a day.
I agree that 83 isn't necessarily too old for a pacemaker- I'd say its quite common for those in their 80s. My Dad had one and did very well. Ablation whilst sedated I think is more of a deal - I've had that - but probably worth the effort. Healing time she'll need you or someone else around. I can confirm the hot flushes on Diltiazem and she needs to be very careful of the sun. I know you're more conscious of this in Australia but she really must cover up well, as Diltiazem makes you photosensitive. And definitely ask to see an EP for your mum to discuss best solutions.
Thanks Singwell and to others with their support of the pacemaker/ablation... I will educate myself more with the process and perhaps ask the GP to advise also. He is very helpful.
Sadly, your mother aged 83, has already responded badly to beta-blockers -
" She has had adverse reactions to beta blockers "
Therefore,, the effect of beta-blockers is shown as 'negative' for her well being, and because your mother is STILL suffering, and can't find a way forward - the best news is that your cardiologist has quoted sound and good advice. Your concerns are that "I believe she is too old to cope with a pacemaker/ablation although her cardiologist persists in offering it."
The effects of - say the experience of a stroke, can lead to AF( atrial fibrillation), - hence, finding a way forward is to address these upsets - is that your mother, aged 83, is still reacting badly - by not sleeping well successfully during the day and during night time.
Would it be helpful to ask your mother's (age 83) doctor to find out if your mother, had behaved by certain health problems.
History Facts:(2014/15)
Locum doctor noticed that my vitamin b12 were very low, and the results found that the blood test reading showed that the very low vitamin b12 - predominant to the deterioration issues of poor quality did lead to the increase of vitamin b12 injections for over a year.
Furthermore, it may be worth to ask for a blood test regarding (vitamin D levels separately) and the good impact of magnesium .
Of course, many people have more experience and knowledge, in regards to the symptoms they can explain easily and talk about!
mum takes regular B12, Zinc and Vit D in liquid form as well as Magnesium Glycinate. Her bloodwork has been excellent in the past. I will look further into the cardiologists advice for Pacemaker. Not sure what the eligibility is for this procedure.
I’ll look into this… heard a few people on here take it. We don’t have an EP or cardiology “team”… just a cardiologist who sees her every 6 months. It’s up to me and our GP it would seem.
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