Last week my GP called me in sharpish on seeing the results of my 24-hour ECG tape, as It included a run of ventricular tachycardia, 11 beats long at 187 bpm.
The articles I have read say VT that last "more than a few seconds" are dangerous. I calculate that mine lasted about 3.5 seconds. (So thankful it wasn't longer!)
My GP straightaway sought advice from local cardiologist/cardiology team. She wanted to know if I needed to be seen sooner rather than wait til my first EP appointment (next July!), and she does not appear to have a reply yet.
My main question here is, can a GP get a consultant to bring an appointment forward for a patient if the symptoms warrant it?
I am assuming that she will ask my EP to see me sooner, but maybe she would involve local cardio instead.
My next question is, would it also be appropriate to have a non-EP cardiologist involved, to address the non-sustained VT?
I realise this is not an AF question in itself. However, my GP's 'informed guess' is that my heart troubles (the AF and now this) may have been caused by some ischaemic damage.
There is a cardio locally that my GP rates highly, but I am not sure if she has been able to stipulate him, as she just wants an answer fast.
One concern is, what if I am seen by a local ‘plumber' cardio who thinks they know about the electrics? What if they go beyond their knowledge/remit and muck things up?
From my brief reading on the subject, I can see that it is not always easy to see what is causing a NSVT, and what is its prognostic significance.
Right now I don't know if it's a mountain or a molehill!
So, y'know, jus t' cheer y'up like!
With many thanks for reading this,
Boombiddy
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Boombiddy
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It was not with your symptoms but to do with heart......my GP did not like a diagnosis from hosp. consultant and asked for me to be seem again...sharpish.I was called in again quite quickly and given an echocardiogram.My GP was proved right....there was a problem not spotted initially by the consultant. So...yes the GP can exert some pressure and hopefully the consultant/surgeon will listen...and act.
Boom biddy if there is a good local cardiologist they will be very good for looking at ventricular problems . If they think intervention is needed they will refer to an EP where needed,- they won't take on inappropriate things themselves.
I think you should try to get an earlier appointment with the EP yourself if nothing comes from the GP
Ring the consultant's secretary and give him/her the results which you are concerned about and ask for a much earlier appointment
Our local cardiologists deal with AF and related arrhythmias but always refer on to EPs if ablation is appropriate- or for a consideration of this.
I have been holding back because I had a tech disaster recently and lost all my prep for seeing the EP, so I think I should rewrite it all first, so as to be prepared in case I'm called in faster than I expect. I hope in the meantime to hear back from my GP.
took your advice today, rang EP's secretary. There's no sooner appointments! Yikes! However, she advised me to email her a letter to him, telling him what I told her, and include the ECG report summary. He may bring my appointment forward on the info provided.
If it were me I would see the local cardiologist whoever it is. There are lots of tests which they can do to check for any ischaemic damage and quite frankly they are not going to do any "damage" re your rhythms or make anything worse. Why do you think they would? EPs are cardiologists after all --- they just have a bit more knowledge about arrhythmias. EPs have only really been around 25 years if that so how on earth did we manage before?
OK you may not get all the treatment you want but at least you can eliminate those things which currently worry you.
Hi, thank you all for your replies, it is really helpful.
Bob, we have some very good local cardio and I would be glad to see them - horses for courses.
The reason I need to see this EP is, that he is also neuro and is one of the few doctors who understand autonomic nervous system disorders.
I have the PoTS autonomic nervous system dysfunction in the context of a disorder of collagen. It affects every system of the body and It especially affects the cardiovascular system. It makes responses to all sorts of things very atypical.
Many docs **think** they understand these two conditions and very very few do. Many people with these two conditions **have** been made worse by doctors who make assumptions. That is why getting this EP is so important.
rosyG and 10gingercats , thankyou for your reassuring and eminently practical advice.
Hi Boombiddy I totally get that you want see this particular EP for POTS and I agree, having had POTS & AF myself, however I do think that Bob has point regarding seeing a general cardiologist and having the tests as soon as possible. Once in the system, as long as your chosen doctor is within the same hospital, they can refer or cross reference with each other quite easily and you can ask them to do that.
I have an agreement with both my neuro and my EP that they don't change any of my meds or treat without cross referencing.
As to your original question can a GP get a department to bring an appointment - in my experience depends upon how forceful the GP is. I was mucked about with my local cardiology appointment and my GP got on the phone and I don't know what was said, but I do know I got a phone call from the hospital, an apology and an appointment that afternoon for the following week. However, I didn't have a choice as to who I saw.
Unfortunately it doesn't work with neuros - I am supposed to be seen every 6 months and can not get those appointments, even with GP questions and letters. Neurologists are notorious for this and I rather suspect because of your EP's rarity value, you may meet the same problem, unless you are an emergency, for me that means a breathing crisis.
Take some deep breaths and think out an action plan and a secondary plan and action it. Acting and having a plan can help reduce the stress and worry which is only going to make things worse.
Hi CD.... i am interested to read that you had Pots and AF. I had undiagnosed Pots for years....I called it problems with low blood pressure! How were you treated for it, and what was its impact on your af?
No I wasn't treated for it as it is only very recently I was taken seriously i.e. - when admitted to acute coronary care with unreadable BP and unable to lift my head off a pillow without HR going through the roof i.e. 180-220. They did NOTHING! Eventually after 3 days of monitoring and a stand up row with duty cardiologist with me refusing to take beta blockers, I was OK again. I had been prescribed them earlier on in AF treatment but had far too many side effects.
Since that time I started researching and learned that beta blockers are contra-indicated for POTS. AsBoombiddy says, getting to see someone who knows about autonomic dysfunction is very difficult and there are very few people around in the U.K.
I was found to have another condition - myasthenia gravis - the symptomatic treatment for which is Pyridostigamine bromide - which coincidentally is also a treatment for POTS. I would say the 2nd ablation was really helpful, as was the Pyridostigamine as is ongoing treatment with HBOT (hyperbaric oxygen treatment).
I know hardly ever have low BP - average is 95-110 systolic and once I even got up to 135!
I have had 2 AF episodes since 2nd ablation in 2014, both recently, but I was not symptomatic, no syncope, no low BP so withstood them very easily.
The beta blockers were counter intuitive in one way in that they did stabilize my BP average, still lowish at 90/70, but that all went to pot (excuse pun) when in AF.
We are all very different and unfortunately there is no one fit so it is all a matter of what works for you. I did find the FB page forum on Autoimmune with Autonomic Dysfunction very informative - but it is a closed group and you do need to join to participate.
I do agree with you and Bob about seeing the local cardio fast.
I am hoping that seeing the cardio will not stop me seeing *this* EP, and didn't know how to phrase it or ask the question so I just explained the hell out of why I need to see this EP.
(...And as usual being clumsy about it...)
Thankyou again CD, I shall read, mark and inwardly digest.
Hiya CD, I took your advice and rang STARS. Couldn't get through so rang AF Association, and Julie there told me to stick with an EP given that NSVT is also a rhythm problem.
She gave me some good advice which tallies with advice here, yours and RosyG's in particular, and she will get STARS' Jenni to ring me on Monday.
Meanwhile I rang his secretary who was helpful. Am in process of emailing him a letter with my summary ECG report attached, in the hope that he may bring forward my appointment.
Looked up local cardio, we apparently have a very good local cardio team, some have an interest in electrophysiology, but naturally I need the specialist who can bring all the complex issues together.
I haven't heard back from GP so assume she's still awaiting reply from local cardio.
I agree completely. I just couldn't get my point across and hashed it. As my answer to CDreamer above shows, I wasn't as clear in expressing myself as I might have been when I answered Bob. (It takes me hours to untangle everything I write!)
I think that is absolutely disgraceful that you have to wait until July 2017 to see an EP. What are you supposed to do in the meantime?? sorry....I am probably not being helpful but I just feel for you. Can you go to A and E when you are unwell and this in itself might push things to be quicker? Acute care in our NHS is fantastic ...but once diagnosed and on waiting lists...nightmare! Best wishes..and I think you are a real trooper dealing with POTs, NSVT and arrythmias xx
Hiya Vony, thankyou, it so supportive to know people are rooting for you!
The problem with the NSVT's is, I was not aware of them! And since it was a 24 hour tape, I have no way of knowing if this is a regular occurrence, or is something that started small and is increasing. That is why I hope my GP gets a response from the local cardio very soon.
I am so so glad that people here made me aware of the Kardia. I just want to thank all who reviewed & evaluated it.
The Kardia showed Unclassified ECG's which I sent off for analysis, and this is how I was made aware that on occasions I was having multiples of ventricular ectopics, as well as lots of single ones. Because of these Kardia reports my GP referred me to an EP, and did the 24 hour tape which revealed the non-sustained VT.
So, the most pressing thing to deal with is the thing I'm not having symptoms of, which is ironic and a little difficult, because of course I can't go to A&E with no symptoms!
I can imagine that must be more worrying...at least when we are aware of symptoms we feel in some sort of control to monitor it. I just honestly wish you well and I would say advocate for yourself and fight your corner...a GP told me to do that more for myself (which is sad that we have to) but this is your well-being and your health. You have been amazing being so proactive in doing all the things you did. But waiting until July 2017 to see an EP with your recent history is an utter disgrace in my opinion. Best wishes and good health xx
Thanks Vony, I think I needed a little sympathy and understanding despite feeling I shouldn't. I cried all day Saturday then buttoned it all down again. I don't mind dying if I went tomorrow, it's the effect it would have on my family, it would devastate them. Yet I just can't face getting my affairs in order 'just in case'.
However, I could live for many many years, it could be a benign one-off.
(Then I cd be moaning about something else! Me aches and pains, me faaarmer's lunng, painful gout in me wooden leg, arrr...)
My GP will not make me wait to be seen, she will do something about it, hence her letter to local cardio.
I do hope to hear soon. It'll be a week today/tomorrow since she emailed off the letter.
In the meantime I comfort myself that it is not unheard of, apparently, for a healthy person to get a short run of VT and be ok. A cardio nurse at British Heart Foundation told me that they did find that on patients' ECG's occasionally when she was working on the wards.
However, if it is someone with another heart problem, then it needs checking out... I suppose having AF counts as another heart problem.
The scholarly articles I've read/skim-read say it is difficult to know its prognostic significance, so tests need to be done. Others are not so sanguine. (I can't remember too well now what was said).
My GP will make sure tests are done, she is brilliant.
Ps: Feeling very shamefaced, as I am talking about something that may never happen, while many on this board are suffering something tangible, right now. My best wishes and thanks to you all for being kind enough to read and respond.
No way do you need to apologise. What you have been through is awful and would make anyone feel very very vulnerable. I also know a girl who has short runs of VT..but after further investigation, where her's comes was not of concern. So yes, it is important for our mental health not to jump to conclusions of catastrophise (easier said than done) but I strongly feel that for peace of mind an EP appointment next July is totally unacceptable. Sorry if I am not helping by moaning too but I really feel for you. You will be fine and safe but your medics need to see you and discuss all this with you sooner rather than later. Big hug! x
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