Any help for a worried newbie please?

Hello everyone, I'll squidge the ten years as small as possible and hope not to send you asleep.

2000 diagnosed aryrithmia. No drugs given. 2003 Angina pain, then ECG treadmill, doctor * stopped after 4 mins. sent for angio...clear. since then been on successful cocktail of drugs for Angina. No other tests requested. March 2014 felt ill. Pain upper left chest. Sent in as emergency suspected Aortic anyuerism. it wasn't. While in triage BP machine 'malfucntioned ' second one did the same. Went to get mobile ECG but was in use. Shift change. New nurse checked neither. Had endo and colonoscopy, both clear. During both my BP was 100/35 and 100/40. both resulted ending on floor legs in air. Sent home. Saw my GP as was having faining fits. Referred for 24 hr Holter. Results..predominantly normal sinus rythum. Some sinus bradycardia. Few episodes of 2nd degree 2:1 HB. Occasional PAF, longest 1 minute 17 s. One Couplet. 80 Vent ectopics. Runs of bigeminy. 6785 supravent ectopics. slowest brady beats 32. Doctor * yes same one reviewed and called me in urgently. on arrival he had no idea he had done report. Tried to arrange holter, till i said all done. He said it wasnt in file so couldnt comment and had no memory of it. Refused to acknowledge his own diagnosis. sent for breathing test and 24 hr BP. Fail. Dept called him saying i was in AF so was abandoned. THEN he looked at my records. Sent me for echo. In AF for most of test but was ' technically adequate ' . Left vent size and thickness normal. Mild L vdiastolic dysfuntion. Function low/normal. EF 50 -55 %.Everything else reads normal aside trace amount aortic valve regurg. Same in mitral and Tricuspid valve. Middly dilated RA....phew !

Been on Clopdigrel, Atenolol, slozen, lansopizle (ulcer) for years. His conclusion...to stop atenolol and swop with Sotalol. Was waiting to be called into doc to explain it all but yesturday went to collect my normal repeat prescription to find atenolol gone and sotalol there. Started this morning. I have questions...

With already proven low BP is this the right drug ? Yes I feel tight tonight, AF is constant and am very light headed but my right calf is absolutley killing me. Everywhere i read / look says Warfarin for AF due to the risks but I assume clopodigrel replaces that need ? Even with leg and lung clots a family problem ? Equally, cant find anywhere that stopping atenolol and going straight over to sotalol alone at home is the way to do it ? I am sure I am over reacting but interested on your thoughts ? Thank you if you are still awake ...

20 Replies

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  • The experienced volunteers will help you more but I wondered if your Chads vasc Score has been calculated- you can do this by looking at the AFA website and that will tell you if Warfarin or other anti-coagulant is needed

    Also I think the volunteers might have information about Solatol after new NICE guidance???

    Sorry you have this ( familiar) ridiculous lack of proper pathway of care- good you are sorting it out for yourself

  • Thank you for such a quick reply... feeling yuck and bit scared to go to sleep tonight. I couldnt get any info in the begining, just a patients copy of letter sent to my GP, sent out 2 weeks after the appointment ! Once the more scary tests started, and they gave me the results to return to consultant...I took my mobile and went via the loo. Else I would be completely in the dark. I also forgot to mention about the heart block...is that sort of normal because according to the sotalol info sheet its an absolute no no with heart block. I know I sound obsessive or paranoid, I am not I am a very grounded person but do feel its my body / heart and I seem to be the only one bother about it therefore have a right to know.

  • I have just done the Chads vasc Score you mentioned. it is 1.3 but based soley on age. I didnt click the thrombosis or vascular questions as they happened to mother and grandmother, not me

  • Hi sugarlump and welcome

    Sounds like you have really been messed around, but also they have done all the right tests but not yet put it all together.

    If your CHADS2VACS is 1.3 then you need to discuss warfarin with your doctor, you are borderline must be on it, and if you have a family history of clots then this needs seriuous consideration, clopdigrel is an anti-platelet (like asprin) and is now not reccomended for AF sufferers, they should be fully anti-coagulated with warfarin or one of the NOACs.

    I think now you should ask to be referred to an EP (Electrophsyiologist) they are the specialists with heart electrical problems, your cardiologist is a plumber (sort of)

    Apart from that don't panic about the AF.

    Now this pain in the calf has it come on suddenly? and it it worse when walking or standing, if so then ring the doctor or the NHS helpline NOW this could be DVT, and they will be able to tell you much more.

    Do come back and let us know how it goes

    Be well

    Ian

  • Ian, thank you so much. I have just dug out my patient copy letters.

    One says I have ST and T wave sagging in V2,3 and 4. ? Also he states, 'probable postural hypotension ' i thought hypotension was high BP ? Never had that in my life to my knowledge.

    None of the letters to my GP reflect my sneakily aquired official results and reports, Somuchso if I was my GP I wouldnt be overly alarmed either ! I have to say my one and only appointment with the cardio left me furious. He wouldnt let me talk or ask questions, other than almost having to almost shout about the stats out 2 years ago that 50mg Atenolol made no difference to 100 mg so my GP dropped it and I immediatly had an angina attack. GP reversed this immediatley.

    I tried to share my concerns but he just gave me an arrogant ' whatever ' hand in front of my face. How dare I suggest his plan could be prolematic !!

    I will never forget, as he sent me on my way, his patronising ' i am sure it makes you feel uncomfortable but its never going to do you any harm ' !! I was shell shocked by that. Hence I am here... He only had to pat me on my head to complete the picture.

    Leg pain came on about 3 hours ago, just below the back of the right knee in the calf. When I sit or lay. I have been checking for redness, swelling heat etc but take on board your comments...

  • Your cardio sounds like a right plonker. I bet he's the sort who'd be wonderful to you if you were private. I've had one of those, I saw him under NHS (he forgot he'd seen me privately) and he treated me like I'd just crawled out of the gutter, idiot, .....gggrrrrrr.

    Change if you can Sugarlump.

    Koll

  • What a complete prat your cardio sounds . I wouldn't put up with that sort of treatment. It makes my blood boil. I once had a registrar start a patronising approach with me but he soon found he had the wrong person.

    You must get your leg looked at though.

    Sandra

  • Oh I forgot...he did make arrangements for a CT angio to ' confirm my angina hasn't progressed ' Thats in 2 weeks

  • Hypotension is low blood pressure Sugarlump ( hypertension is high blood pressure)

    Hope you get sorted out- do take Ian's advice and get the calf checked- you could get advice re anti coagulation while there and side track the unhelpful lot you have been seeing!!

    ps Postural is just position- ie perhaps your bp drops when you stand up- get up slowly if this is the case

    take care

  • Ah ! Thank you rosyg....

    Can anyone point me to the info where Clopodrigel is not recommended anymore. So I can print it out. I need to have as much indisputable proof as I can to go to GP if I am hoping she will override the cardio

  • I was on 3 x 80 mg soltalol but my fingers and lips went blue so down to 2 x 80mg soltalol with 125 mg digoxin and warfarin. I also have lung conditions and have calf pain but since being on sotalol I do get more frequent and for longer periods of calf pain?

    Be Well

  • Hi Sugarlump and welcome you will find lots of support here! Have you been on the AFA main website? Lots of info on there and leaflets to download on all possible treatments and drugs and they may well have info on the latest NICE guidelines. Otherwise google NICE guidelines for atrial fib and you should be able to find the original document.

    I agree with above comments, you have certainly been messed around. Electrophysiologist are the electricians of the heart and as Beancounter suggested a consultation with one as soon as possible would enable you to regain some confidence in the medical profession!

    I have hyotension and take a beta blocker, Bisoprolol which I was very hesitant to take re hypotension but interestingly it has really helped stabilize my hypotension. Sotolol however is partly a beta blocker and partly a heart rate drug, doesn't suit everyone and I believe can reduce your heart rate too much so good to monitor yourself and go back to your GP if it dips and stays too low >50, or if you BP drops. If it is postural hypotension there are several things you can do to improve it, go to the Syncope website and download their leaflet. Crouching and bearing down for instance.

    I found that I needed to become my own expert so research, research, research and let the medics know you have knowledge and can discuss your condition and treatments like an adult, amazing the difference in attitude!

    Don't hesitate to ask anything you want to know, we are all co sufferers here so although we may suggest things, I for one am not a medic so please always bear that in mind.

    There is loads of information out there and read the Frequently asked questions on this forum, you learn so much!

    Good luck.....

  • So sorry to hear you've been through all this trauma, it sounds like a real comedy of errors, except of course you're not left laughing at the end of it. What you need is something coherent and that hasn't happened. I'd definitely push to see an EP, it's your right, and it would be good to speak to a real expert and hopefully someone who won't patronise you and refuse to listen. Please see your doctor about the calf and talk about anti-coagulation, you need to with your family history. I'm on warfarin with a CHADSVasc score of 1, because my cousin, who's got the same condition, had several TIAs at my age. Best not to take risks.

    Lis

  • Thank you everyone...

    As for the postural diagnosis.. I told the cardio at the time it was not brought on by laying to sitting or sitting to standing etc. it's more prevalent whilst at rest. Nothing seems to trigger it...it's just whoosh and we are off. If I am upright and try changing the duvet cover for example I just run out of , well everything, like someone has put a syringe in me and drawn out all my energy, if I don't sit then I go very faint until I have too.

    My HR rarely gets up to 60 and is mostly in the 40-50 bracket.

    My fear now, having read more is that my GP won't do diddlysquat without the agreement of the cardio...and with his current arrogance I can't see him agreeing to anticoagulants as he would say ' if she needed them I would of given them. Although he is happy to leave me on anti platelets which following beancounters comment...and research isn't recommended either. In that case I will be unprotected.

    I went through all my reports last night and found that on my general CT scan it showed some calcification and atheroma in the lower abdominal aorta. Cardio knew this. Does that fall into the vascular bracket on the chads vas scoring ? If so then my score is 2.

    Also I forgot to mention, I had to have a partial nephrectomy years ago due to a clot blockage......cardio knew this. All this without the family clot history....

    Leg is still painful. I did ring NHS they said to monitor for redness and or swelling. If pain got worse or moved to call 999

    Thank god this site is here...

  • Just an update. Spoken with GP, who is lovely, on phone. Appointment later this afternoon but she already said won't stop clopidogrel or change to another as it has anti coagulating properties ! She suggests referring me to a different cardio. I will ask about an EP while there but am not holding my breath.

    I quoted so much of NICE etc but to no avail. Apparently clopidogrel is sufficient even after I noted all the family history.

    Can't quite explain how I feel at the moment... Well not that I can put to print.....

  • Hi sugarlump my advice to you is tell gp what you want and if they don't give you what you want change to another gp plus spend £250 go private and see a ep don't know where you are but if in london I can tell you about a excellent ep here and other worries you may have

    Like dvt go straight to hospital forget gp good luck karen

  • Ditto above comments. Sotolol I meant heart rate AND anti arrhythmic drug. Some EPs don't like using it, especially if you have low resting rate.

  • Hello everyone, I do come on everyday to read all the updates but with no real news till today I haven't posted.

    So, letter has been sent requesting a different cardio man. GP rang me Tuesday to check I was doing ok. I said I felt really rough at that I felt my PAF was more frequent, violent and lasting longer. He said to double the sotalol to 80 twice a day. He also asked if my HR was ok I said was dipping into 40's quite regularly. With that he retracted the dosage increase and because I had my CT angiogram due today to wait and see what happened with that. I am just home after a 3 hour episode !

    Arrived, went in for stats and was in a fib. 144/98. HR 58 With no warning HR dropped to 37 and set the alarms off haha. Nurse went to speak to a cardio before inserting canula as HR wouldn't rise. While away another nurse said ' ooo let's turn that buzzer off ' unaware 1st nurse wanted constant reading. Once she realised she redid, and was the same, well dropped to 35 so changed machine faulty '. New machine confirmed 36/37. First nurse returned saying they would progress as a cardio will be present etc.

    in I went. Explained test was in 3 parts. First part without dye, second a little then third all of it. At end of first stage ( 2mins? )cardio came in and said ' your ectopics, of which there are many, are likely to affect the reading ' he squirted 2 shots of GTN spay to help ( yes the headache is with me now grr) then had the procedure.

    He came back in at the end and said the images will most likely be no good as too blurred. Also said not to increase sotalol and he would be writing to GP and me Monday when results proper come in. Nice man, explained everything and was happy to answer everything. I explained I am in PAF, or whatever, maybe 70 % of everyday and was deluged they finally caught and recorded my HR bombing out as no one ever seemed to believe me.

    I felt he actually took interest. He let me explain this happens at rest, bedtime and only corrects itself until I sit down again. I am exhausted, can't sleep for it, hard sleeping sitting up all the time. Only time I can even start to control it is by standing up... But then I run out of steam, dizzy and have to sit , and off we go again....

    Does anyone know why I can have the two extremes... PAF then HR just plummets... And repeat ?

    But the brucie bonus...... This cardio I found out is the new one I have been referred to. He even remembered the referral letter from my GP and requested my full file to read while I was there. Result ! I might feel rubbish but at least I have a little hope now.

    Damn war and peace again....sorry

  • UPDATE. Well..chalk and cheese. What a difference ! Bordering on a pleasant experience.

    Just back from appointment with new Cardio and for the first time I feel comfortable and back in some control.

    In the waiting area, his surgery door open, he collected my file and I watched him read my file for 15 mins, actually reading it before calling me in ! That was 100% improvement already.

    He listened, asked lots of questions and was actually interested and noted all my answers, checked me over, discussed all and everything with me in a two way, friendly conversation.

    I took my family history for file along with a synopsis of what happened when, explaining that previously these were not noted and incorrect info was sent to my GP.

    He saw I was also Bradycardic during 3 proceedures...down in the 30's with no reason. I confirmed this happens at home.

    I had bought an Alivecor a month ago ( sadly before the £36 offer grrr ) and printed off and took a few in with me. Some also showed Bradycardia...one I actually questioned if I was dead !

    He totally 'gets' the Alivecor, took my phone and looked through my findings and took notes. Clearly sees it as a useful tool. As a result of the hospital results, backed up by Alivecor he wants a 48 hour Holter because ' what you had done before was then - things have progressed and this is now '

    Bradycardia is frequent so he wants a continous reading to determine next step.

    If holter confirmed, drugs may not not help and would think pacemaker or maybe even Abalation, explaining the risks. He said the Brady could be one of the PAF triggers. Again the Alivecor showed him the before and after of a PAF episode.

    The main thing...said within minutes of me seeing him and with no prompting or questioning from me...to come off Clopidgrel and onto Warfarin asap. He didn't tell me, he asked how I felt about going on anti-coag, then explained the risk if I didn't...also balancing against bleeds and recommended stroke risk was higher.

    He views me as a 2 risk without family history.

    I actually felt a bit silly feeling quiet elated driving home, cheesy grin on face. I also felt silly taking all my back up stuff for file, but I wasnt to know he would be as thorough as he was.

    As for the Alivecor...I know there are views on this. I am a very grounded pragmatic person and forget I even have it till PAF / giddyness starts. As my phone is always with me, I just catch the session quickly and get back to what I was doing. It doesn't rule my day or life at all. I find it so reassuring and today proved it's worth. 10/10

  • What area is your Cardiologist in? I would change if I was you. Some can be like that and do not listen, while others are really helpful.

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