Apologies as this is a little rant as well as a request for some help so please bear with me if possible ....
As you can tell by my username i am posting this to get information for my mum. She is 65 yrs old and she was diagnosed a few weeks ago with what we think is paf.
However the road has not been a smooth one and we are in a constant battle with gp's and the nhs.
A little bit of background:
Looking back we think mum might have had symptoms as early as 2013. Sudden waking in the night with palpatations which gp put down to stress at the time and prescribed medication to help sleep.
However in may this year mum blacked out ... again passed off by gp - cant remember what they came up with on that occasion. A few weeks later mum had another 'attack' in the middle of the night and 111 told her to get a family member to drive her to a&e or get a taxi. No family available (i live 1hr30 mins away) and no bloomin taxis would come out at that time (she lives in a village) mum left it as she said the feeling subsided and felt she might be making a fuss about nothing. She went to the gp the next day and the excellent locum (sadly never to be seen again) referred her for an ecg. Mum then had to fight for approx 6 weeks to get that ecg as the surgery didnt know how to download the software (!!!!!!) Eventually they managed it after 7 seperate calls constantly chasing them and the 24 hr ecg was completed. Mum said she hadnt had an attack during those 24hrs so felt there wouldnt be anything to show. The gp said possibly paf as a result of the symptoms she described but would refer to a cardiologist.
Mum went to see said cardiologist - (listed as an ep on afa) but unfortunately she got the monkey not the organ grinder.
After hearing what he said he was possibly THE most unprofessional person out there to the point i question his qualifications and his right to practice.
Basically he didnt have the ecg results to make a decision on treatment so said he would go off what the gp thought it was. He said he would start her on sotalol and refer to an anti-coagulant consultant. Also referred her for an echocardiogram.
Since that appointment mum has had two more attacks both requiring paramedics and once going to a&e. Her heart rate was caught on the monitor on the way to a&e going from 58 to about 160. The frequency of attacks have increased dramtically in the last few weeks. During this time she had still not received the said sotalol so was no further forward.
She has now seen the anti-coagulant dr and they have prescribed the medicine which doesnt require regular blood tests. She has started taking these. She has also had date through for the echocardiogram - end of October!!
In the last few days we have decided for mum to go private for the echo and she has written a letter of complaint about the cardiologist (who in his letter made a lot mistakes re: important facts such as family history of heart diesase and frequency, intensity and symptoms of attacks). After more chasing she has now got the sotalol but is afraid to take it.
Basically because of the following:
- she has been prescribed medication by someone who hasnt seen her ecg results and has not taken into account family history or any of the episodes she described (as evidenced in the letter).
- she has also been prescribed medication which lowers the heart rate - it is already on an average 58 and she is afraid it will be taken lower still.
I just wanted to know what other peoples experience of diagnosis was and whether more comprehensive tests should have been done (e.g stress test etc) before making a decision on treatment?? Should the echo have been done sooner?
Mum also said that these attacks only happen when she is asleep - she wakes up feeling as though she cant breath - gasping for breath - Is this normal for paf?
If you have managed to get this far down without switching off then i thank you. If you could comment on any information related to the correct diagnosis procedure i would be eternally grateful.
This is all so new for us we just dont know where we stand and what our rights are.
Many many many thanks,
one concerned daughter x
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There are more experienced people who will reply- but a few points- I believe Sotalol is now not recommended by NICE- it's good that she is anti-coagulated- I take one of the NOACS which don't involve regular blood tests but she should have had a liver and kidney function test first.
keep an eye on her pulse- mine was resting pulse of 40 when I stopped the beta blockers after short trial- you could monitor her pulse-- or she can??
But you really need an experienced consultant and tests to see what is really going on- I'll leave others to give more advice
Oh, get her to sleep slightly raised up- may help with the breathing and PAF coming on at night.
Hi rosyG, thank you so much for replying. Its all so comforting knowing there are people out there going through a similar experience with af that can gove some advice. I will definitely let her know about sitting raised up and i will nkw check NiCE re: sotalol. Thanks again
Hi. Your mum's story is virtually the same as mine. It took a long time for me to be diagnosed - was given 4 monitors before it picked up readings good enough for a diagnosis. The Consultant at my local hospital suggested a couple of different drugs and referred me back to my GP.
I have refused the medication and asked for a private referral to an Electrophysiologist (heart rhythm expert) at a local hospital. I would heartily recommend that you do the same. If you go onto the AF Association website you can find someone near you or ring them, the lady I spoke to was Really pleasant and helpful.
Mum text to say her echo she is paying privately for is booked in for friday morning (if ever the saying money talks was more appropriate - sad but true). Good luck on the 1st.
I have a similar tale of diagnosis. I spent more hours on the phone and chasing test results up than I care to remember. In the end I had 3 T.I.A.s before they finally put me on warfarin. I then moved area and G.P. and the care I now get is fantastic. It makes such a difference to feel that someone knowledgeable is in control of the situation so keep pushing for that. Your mum is lucky to have such a caring daughter to help with all this. X
Thanks dedeottie. Sorry to hear about your t.i.a's but glad your getting the right support from your new gp now. I have suggested she change surgery but think she was afraid of moving mid-consultations. To be honest they are so useless i dont think it matters!
From a paf person and a nurse practitioner on a gp practice....change surgery and see another cardiologist also!!!
The surgery should be able to do an ecg on the spot and if they can't do 24 hour ecg they should have referred you to the hospital to have one. It's NICE guidelines. Talking of NICE look it up for paroxysmal AF and then you can see what treatment SHOULD have received.
Your mums treatment is unacceptable.
Also it would be worth asking about sleep study at home. I have also had one of those following passing out once ( turns out I fell out of bed and knocked myself out) but they wondered about sleep apnoea causing paf episodes. It involves a kit to wear overnight at home but it would show if that was a cause.
Thanks Howesgilly. It makes me so mad that everythimg is such a fight. I agree a change in surgeries is needed - anything is surely better than there. I appreciate you taking the time to comment. I also wondered about sleep apneoa as a possibility after reading all the numerous websites. Thanks again
The cardiology dept should also do a 7 day event recorder on ecg if a 24 hour missed it.
I first had an obnoxious consultant who told met here was nothing wrong with me just aftery cardioversion. He was really rude and told e I was a drama queen ( I only needed cardioversion as I waited 4 days before seeing anyone and it was too late for other treatments).
I was admitted just after this with another episode and got given a wonderful cardiologist and haven't looked back. Good luck
HI and welcome, and you've come to the right place for your Mum, but may I say one thing? she needs ideally to read here as well, not sure if that is your plan, but I promise you she will feel better the more she knows about her condition.
I think your GP has been abysmal, but actually, I don't disagree with your specialist, it would have been better to see the EP of course, but I am really surprised that your Mum didn't get an ECG at the hospital before she saw the specialist, it only takes a few minutes.
Why don't I disagree? because from what you describe your Mum has Paroxysmal AF (intermittent) unless the ECG is done during an episode it won't show AF.
To be honest most doctors treat first and test afterwards, not perfect, but they have got one thing right which is the anticoagulant, and if your Mum does not need blood tests then she is on one of the newer ones which we abbreviate here to NOACs (just for your info)
Ideally? You mum should have an echocardiogram to look at the underlying heart condition and possible even a 7 day halter monitor which will record any episodes if they happen in the 7 days, that will make diagnosis easier.
Sotalol as someone has said is not recommended for AF any more, but I am fairly sure (not medically trained) that's it's an antiarrythmic, or rhythm control drug, not rate control, so I don't think it will lower your Mum's heart rate.
If I were you?, I wouldn't pay for an echocardiogram, I would pay for a private EP appointment which I understand is around £300 to £350, then they will probably order any tests they think appropriate after the session, and that often on the NHS.
But above all read as much as you can about AF, here, on the AFA website and others, and ideally get your Mum to read as well. At 65 your Mum has many good years yet once she gets her condition under control.
Must confirm with rosyG that Sotalol is excluded from the NICE (National Institute for Health and Care Excellence) AF recommendations. Concern is that with her irregular pulse rate this would require reassessment. Sotalol is not suitable for everyone. Some people should never use it. It is important that the person prescribing it is familiar with your Mum's medical history. It is not suitable for females, not to be taken with alcohol, with certain foods and can interfere with the ability to drive. You will get all this off the 180 NICE Guidelines (para 1:6:2 and 1:9:1).
Good that she is on an anti-coagulant (blood thinner). This is essential.
There are guidance notes relating to AF which were issued in June 2014. "Atrial Fibrillation: The management of atrial fibrillation. Clinical Guidelines 180. There are four sections.
Get a copy of these off the NICE website. Quite a document to read through but well worth the effort.
Contact your local "PALS". This is the "Patient Advice and Liaison Service" of your local Hospital. Go to "NHS Choices" website. Pop in alongside it "Patient Advice and Liaison
Service" as well and then fill in the space that pops up for your Mum's postal code and it will throw up your nearest "PALS" team. You want to ring them and have a quiet chat. Get them to look at your BLOG above and you can fill in any "holes" that you have missed out. They should be able to help.
If all else fails find the web site for the Atrial Fibrillation Association and ring them direct and explain your problem again using your BLOG which they will have access to. They are very helpful. In my case two hospitals were involved so their input was invaluable.
I am sorry that you both have had so much trouble but be persistent and aim for the help of the EP (Electrophysiologist). He's your man or woman that you need to get to for a proper assessment. Advice on a suitable EP in your area can also be obtained from the AF Association. Their website is very good and a mine of information. Learn as much as you can.
You would have thought that all GP's were familiar with AF but unfortunately NOT!
I hope the situation improves. Dave.
Not to borrow trouble, but might be good to have a list of stroke and heart failure symptoms just in case.
Persistence, homework (on this Forum and elsewhere), discussion with medics on all your symptoms not a monologue from them and money is needed to go private to fast forward your Mum's full diagnosis get on the right medication and reduce anxiety.
This condition is not straight forward and I believe is multi faceted i.e. not just a silver bullet drug but she needs to look at supplements and lifestyle too - most of which can be found here. The medics need to be told where she lives and the transport arrangements as well.
Wow... your experience with your Mum is all so familiar to me but I was the one with Afib not my mother for a period of 10 years and dealt with this back and forth crap from so called specialist for the same period - a decade.
I am 55 yo and having an ablation procedure around this time last year I am free of Afib, no drugs, no nothing and my Afib was approaching being permanent August last year.
As luck prevailed when I got back from Cairns Qld from a holiday (and I was going into Afib every single night and once during the day when getting a massage session) I desperately rang the receptionist of my Cardiologist back here in Perth WA only to be informed he had gone to Canada for a holiday - this being the 2nd Cardiologist I have been to over the 10 year period.
That cardiologist put me through a sleep test and from the sleep study results I came very close to losing my drivers licence after the successful ablation procedure.
After months of sleep tests and $3500.00 later, the sleep specialist was proven seriously wrong. Only wish I could get my money back.
I was desperate and my Afib really knocked me around a lot towards the end of August last year - it got progressively worse over time, so I called the Cardiologist receptionists and was put onto a fill in guy, a Bulgarian whom hadn't operated in Oz yet, but he had done in in his home town.
During the consult with this guy - I was so, so impressed with how articulated in explaining ALL the options I decided to have him do the ablation procedure. He had to do it under supervision of course.
My ablation took the best part of 4 - 5 hours and they put me under with a general.
For for the record, I insisted he do the ablation procedure and get it done b4 my usual Cardiologist return from Canada otherwise I'd be talked into taking more drugs and more drugs and more drugs and was so, so over taking degoxin and amiodarone - on and off over a decade - both have horrible side effects and towards the end, they were not working.
I am so thankful now that I have a real life back, no limitations of which I have been living with for the said 10 years, a prison sentence really.
So your experience with your Mum is unfortunately very common and let me say, I think I won lotto last year by good fortune where there was someone that came out of the blue that really, really cared and did a marvelous job on me, cannot thank him enough, really I can't.
I remember telling this guy, either the ablation or a bullet with my name on it - your choice, that's how desperate I was.
I can really, really sympathies with your Mother, hey?!
Though my ablation was successful for me, I have heard so many bad experiences of ablations going wrong too, I guess I got very, very. very lucky as I still get told that an ablation procedure is not a cure, it is a preventative measure and that one day my Afib will return.
Well, all I have experienced in the last year is that even the ectopic heart beats have been subsiding and I have pretty much almost forgotten what Afib feels like.
My advice would be, keep looking for a Cardiologist that cares enough to try and fix the Afib and not keep patching it up with drugs, ya never now... your Mum might get lucky like I did.
I am so sorry to hear that you are literally chasing all of the time. I shouldn't be like this, I gave similar problems with serious ear infections, the latest is my appointment has been cancelled till Nocember. My AF treatnent has been spot on I must say, keep chipping away at them and try to stay calm x
Your mum is lucky to have you taking care of her please don't let them fob you off and please don't let them medicate your mum without the appropriate tests this happened to my sister ,and it don't mean to scare you but she paid the ultimate price, I begged her to get a second opinion but she was old school the doctor knows best, she had been going to this practice since she was a very young woman
I am 64 and have been diagnosed with paroxysmal atrial fibrillation. I first saw my GP last year after suffering palpitations and he referred me immediately to a cardiologist but told me to get back to the GP surgery (if I could) whilst actually having an attack so they could record everything on an ECG. Luckily I was able to do this a few days later and that documentary evidence really helped with the subsequent diagnosis and treatment.
I changed to my current and very efficient GP practice a few years ago because my old one was absolutely hopeless and I recommend that your mother gives serious consideration to changing hers a.s.a.p.
The waking up gasping sounds a bit like sleep apnea. Does the gp know about this? This is easily tested by wearing an oximeter(?) for a couple of nights,. A referral to the sleep clinic is the usual route to get this test. If she has significant sleep apnea there are lifestyle choices inc possibly reducing alcohol, sleep on side etc etc or a device to wear at night to give her oxygen at all times.
I understand that paf can be caused by sleep apnea so it is in my view something worth investigating. The sleep consultant referred me to
Cods wallop... sorry but sleep issues have no relevence to AF. Been down that path and it leads only to an empty wallet. Just go to your Chemist and try different remedies than go to a sleep specialist. Two of them did nothing for me. I ended up purchasing a $20.00 mouth guard online from the US and learned to play the digeridoo -circular breathing though sleep studies I had done didn't show any issues in blood oxygen levels. Only had the occassional snoring bouts but the wife is worse than me. Both sleep specialists ended up being crooks. Everything they can advice ya a Chemist can and you'll stiĺl have cash in your pocket. Ya better off doing ya own research and not be at the mercy of these crooks... sleep specialists.
The shortness of breath is normal when in AF as only 30% of blood is being circulated. Lungs struggle with only 30% of blood going in to be oxynated and back out. Again... bugger all to do with apnea. If holding breath during sleep the mind will wake you up. Sleep issues is only a problem if there is an obstruction in the throat... some kind of abnormality where CPAP could have a positive effect or an operation. Sleep specialist pray on AF sufferers.
And whilst we are on possible prevention and remedies - I been told that a change of diet has a significant effect on the prevention of AF... HELLO?! AF is an electical issue, its not plumbing. No change of diet will change the structure of a bunch of heart cells that's gone haywire. AF progessivly gets worse becuase more cells go haywir over time. I know plenty of AF sufferers whom are super fit and on a wicked diet - it amazes me how they stay supper fit living with AF. Even with ablation, the procedure may not hit all the cells and heart tissue can repair over time... hence multiple ablations for some that suffer with AF. hittiing the dodgy cells is still not a perfect science - a successful ablation is still in the land of Gods - just luck. Degoxin will only slow the heart and make you more compy but can cause serious toxic issues if overdose, normal sinus rythem will just happen naturally in time even without digoxin. Blood thinners only prevent the onslaught of a stroke... it won't do anything for AF. All this I have learned by my own research... no Cardiologist explained anything in any real meaninful way, all they did is load me up with drugs. I insisted on an ablation procedure, the procesure was never recommended.
Very similar story to mine. I didn't have a problem with cardios, but my GPs were simply a nuisance and prevented me from getting proper treatment for nearly a year. became very ill and even though my heart rate had gone down, they put me on beta-blockers to slow it further!!! They hadn't a clue and were downright dangerous. Eventually I just said I wanted an open referral to a cardio of my choice (who is an EP). I didn't mention the term EP as they did not know what an EP is. I went privately, I was fitted with a 7-day monitor, they caught the symptoms on the monitor and then did something about it and I'm now back to normal. That cost me about £150, may have been two visits so maybe £300, can't remember, but the best money I've ever spent.
I also get the symptoms when I lie down. She could try lying on one side (usually the right I reckon) to alleviate symptoms. Also, try eating small meals only and cutting out caffeine in both tea and coffee, and also alcohol in my experience.
hi, sorry to hear about your mum, I was just diagnosed last week , I am just turned 61 last month, had a small stroke which how they have now came up with the AF diagnoses, been on a monitor for the last week infact due off today, apears I have had AF for a while but had never been diagnosed, but the night sweats are so similar, my gp put it down to hormones and the change? , I also like to sleep with a raised pillow and have done for the last year at least, and often felt that I had something in my throat but only at night, with hind sight and looking at information on AF, the signs were all there, but apparently AF hard to diagnose, have just commenced on Rivaroxaban, I would be lost without the support of my husband, have just spent the last few days in bed, very lightheaded appitite very poor , gone off my usuall cups of tea prefer water, am struggling emotionally just now, this is probably due to the stroke as well .so struggling, up today but knackered just having a shower, good on you supporting your mum , hope you get the support you both need, have found comfort from this site in the sense that I am not alone
Thanks for your post ourkids5, im sorry to hear all you have been through lately. Your right in the fact that this community can make a real difference to not feeling alone - and im not the one with af! I hope you start to feel better and thank you for sharing your experience.
Yes, its a horrid situation to be in. I cant understand why one "professional" cant do everything. From the description of symptoms they would know its AF surely. I am a lady in my 60`s and my attacks always start late at night or early morning. Your mum needs someone to sit down and explain whats doing on and how the meds help. I too was concerned about taking a tablet every day that slowed my heart down when my heart only speeded up when I was in AF. My advice whilst you wait is search the internet - write to Vickie and AFA - you may wait a couple of days but I`ve always found her helpful. Best wishes to you both
This is similar to my experience. I saw a cardiologist in December 2006 but never saw the letter he sent to my GP. I recently requested a copy. In the 8 years from 2006 I repeatedly visited the GP updating him of the AF and asking for potassium prescriptions. He never mentioned that the cardiologist had referred to "medication" as a future option if things changed. I had had roughly 5 episodes in the 6 years from 2000 to 2006. Now I have had well over 100; all of around 12 hours duration.
The condition deteriorated in 2014 and in late 2014 I asked the GP to refer me to someone how could help. Eventually I found out about pill in the pocket Flecainide. AF is listed as a "common heart condition", yet my GP did not know that there was an urgent need to treat every episode with pill in the pocket Flecainide to reduce its duration. Those 100 episodes may never have occurred if I had been prescribed Flecainide in 2006, becasue the drug would have stopped them in around 2 hours instead of waiting 12 hours. The damage to the heart is cumulative as described by the most recent cardiologist I have visited.
So the medical profession is not good at diagnosing or tresating this. I have found that using Flecainide continuously doesn't agree with me. At present I try to anticipate oncoming episodes and take the pill every three or four days. Everyone is different, but the GP that treated me was ignorant.
Imagine 8 years without medication and watching the disease progress without providing any referral or treatment options! I am in Australia and GPs here have a bad reputation for incompetence; as do doctors in general.
Live in Australia and I have received the best treatment I could wish fo since I was rushed to ER nearly 2years ago I had never been I'll a day in my life so did not have a regular GP I now. Have a great one I spent 8days in CCU was given every test available one to one nursing and the doc came to see me every hour all in the public system I now have a cardiologist and anEP I am not a private patient maybe I have been lucky
I am 69 & was diagnosed 3 years ago, I developed AF on waking one morning, my pulse was ranging around 170, I saw my GP who sent me straight to Stafford hospital, I was seen quickly & given bisoprolol, I was monitored overnight & saw a Consultant the next morning, over the next 3 weeks I was fully investigated , I had an echo, repeat ECG's & an angiogram , I always felt very supported, over the last 2 years I have had several episodes of AF, if this occurs I take Flecanide 50 moms if the AF does not settle after 4 hours I go to hospital . As I am approaching 70 I have just started Warfarin, I was well supported in this transition. Throughout I have been well supported by the Primary Health Care Team.
Waking up gasping for breath sounds a lot like obstructive sleep apnea -- which can certainly result in afib. Treatment of the sleep apnea may be the first line of help you should seek. Good luck to you both.
Hi to everyone Like many other people posting on this site I have a similar story regarding my previous GP. Yes he confirmed I had PAF , thankfully I was quick enough to present myself at the surgery to capture the event on an ECG trace but the sad part is he prescribe asprin as an anticoagulant. I questioned this and also his CHADS scoring , He said to me " I'll ask the questions not you , I'm the Doctor" . How arrogant ! My response was to ask for a private referral to an EP. £125 well spent and anticoagulant changed to Apixaban plus other meds. Thankfully no PAF events for the past 18 months but now have some burst of missed beats every few months. Off to see my EP on 1st Oct following a 7 day holter. I would certainly at least for the initial consultation look to go privately (had only to wait 3 days) then follow through with the NHS.
This is a great site and full of very useful information. Keep up the good work. Thank you.
Id just like to say i am completely overwhelmed with everyones kindness and willingness to share their experiences. I think its so valuable to know that people have been through similar things and most of all that we are not alone and that there can be positive outcomes. Im looking forward to letting my mum seeing these responses (she's currently on hols) as im sure it will provide her with some much needed reassurance. Thanks again everyone
I have had similar experieces to your mother. Initially EP subscribed Nebivolol, a beta blocker similar to Sotolol, 1.25 mgs. I then had a cardiac perfusion test (this has taken the place of the old stress test) in order to ascertain how well the arteries providing oxygen to the heart muscle were working. When this was found to be satisfactory the EP prescribed Flecainide. This is called the pill in the pocket and is used with Paroxysmal AF to stop the attacks as and when they happen. With some fortunate people this is a long term successful drug intervention.
In my case I was prescibed 50mgs once daily to see how well I tolerated the drug. Not everyone responds well. After a month I developed cardiac flutter ie heart going at 130bpm (regular) but this reverted to AF at approx 115bpm (irregular) . Called 999 then with half hour to A and E and after two days of irregular AF had a TOE not pleasant (check internet) to ensure no clots in the heart chambers followed immediatley by cardio version that shocked the heart back into sinus rythm.
On leaving hospital prescribed Nebivolol 2.5 mgs twice daily and Apixaban 5mgs twice daily. The beta blocker drops my heart rate to around 50bpm (before medication was around 58bpm). If it drops below 48 then I half the morning Nebivolol. Checked this with my GP. No problem with the anticoagulant.
This new regime has not stopped the episodes of AF. I seem to have episodes lasting anywhere up to 15 hours approx every 2/3 weeks. However unlike the episodes before medication when episodrs of AF (usually waking up around 5am with paplitations and a sort of catching of my breath rather than SOB. But heart going fast perhaps 150+bpm) and although these episodes were shorter perhaps 40 mins duration but over 2/3 years increasing in length. During these episodes feeling ill, faint or light headed, slightly sick and unable to walk for any distance before feeling dizzy.
Now with slow AF even though episodes last longer I do not feel so ill and I can function ie go shopping, pretend with friends that I am ok! So this what I call slow AF after the beta blocker prescription is greatly superior to what I was before experiencing with `fast` AF.
I am now on a waiting list for a Pvi. ie a pulmonary vein isolation that can be successful with us paroxysmal AF sufferers. By successful I mean 70% chance of having 5 to 7 years free of AF and without any drug intervention. After this time the AF usually reaccurs and is then only controlled by drugs or with a permanent pacemaker taking over completely from the natural pacemaker.
The correcc tbeta blocker prescription does really make a difference to the quality of life and it maybe that the flecainide could be successful with your mother.
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