Hi all, I have second degree heart block and the person I saw at hospital is trying to discharge me from cardiology which I think is wrong. I have so many symptoms which mainly occur at the gym but can do at home also. My heart rate goes very high at the gym but my heartrate has been recorded as too low (Wencklebach) during my sleep on a number of occasions on my Holter Monitor results. I wondered if anyone has been in a similar situation as myself or has second degree heart block. My issue is that medication could put my heart rate too low at night, so I'd like a pacemaker fitted. I am getting a second opinion from my GP but the hospital are stalling on sending my results through. I have now emailed the hospital team (they have a place to resolve hospital queries) so I'm hoping they can intervene for me a bit. As I get breathless, nausea, chest pains, cough, extreme fatigue, heartrate too high, nearly fainting, dizziness and many other things I am not wanting to just be discharged from Cardiology. The British Heart Foundation think I should be tested further with Electrophysiology tests or that I could get a pacemaker. Would be great if anyone can reply in case your information is helpful to me. Thanks
Second Degree Heart Block: Hi all, I... - Arrhythmia Alliance
I am assuming that the block is there all the time rather than transient? You should get copies of all your ECGs as you go along.
I suspect they will take less notice of the high levels at the gym as it will be classified as over exertion.
You can push to get a second cardiologist opinion, but that can be fraught.
If you can afford it you can also see someone privately but I would suggest unconnected with the hospital you have been under.
Thanks for your reply Peter. There was a few occurrences of my heartrate going too low in my sleep, which the person said if I'm not lightheaded or getting faint is not a problem. I told him I do get like that but he changed the subject. As far as gym I concerned I have been going for over 2 years and my heartrate is still crazy (though fitness is much improved). I'm a healthy BMI and 29 years old so the symptoms are troubling as I eat well and exercise regularly. I think private healthcare would be out of my pricerange especially if I did need a pacemaker (I assume they are extremely costly). I have had an abnormal ECG at rest with right axis deviation which started all the tests off in the first place so seems there are electrical issues with the heart. Wish I was more clued up on things but I rely on BHF helpline which is excellent, forums and the good old internet.
Short periods of Wenckebach-type second degree AV block at night are not necessarily abnormal (in fact a common finding in athletes) and certainly not dangerous provided you don't have attacks of faintness during the day. I think you really need to find a cardiologist who you can talk to and discuss what might be causing your symptoms – it almost certainly isn't the second degree block but that could cause a problem if you needed meds that slow the heart, especially beta blockers (e.g.bisoprolol).
It's a well-established principle in medicine that "everybody is entitled to a second opinion" and no doctor or hospital should have any objection to that – so just ask you GP to refer you to another cardiologist, preferably with an arrhythmia interest (electrophysiologist)...
(and do accept well-informed advice.)
Thank you Jonathan. I do have periods of faintness. Dizziness, lightheadedness and near fainting. I can feel like that with or without exercise but exercise tends to bring on symptoms intermittently. I got told about a condition called POTS which I wonder if I have as it feels like it matches most of my issues. What would you suggest I could get tested for under an electrophysiologist? If you have any pointers that would be really helpful. Of course, without hesitation i accept well-informed advice. It just concerns me that my heartrate goes very high at the gym (it baffles my trainer as well) and the symptoms that i have. Getting things off my chest helps me feel a bit better. It's not always easy knowing what is the right actions to take are and i'd never usually want to question a professional cardiologist but something doesn't seem right.
On your heart recording they would certainly have noticed if you had any second degree AV block during the day or with exercise. It sounds like you could have something like POTS which is basically that your blood pressure control has got unstable. This typically happens after a virus illness and gradually gets better by itself if you keep exercising regularly for a few months. Drug treatment isn't generally helpful (it often makes it worse) but increasing salt intake usually does help (and avoiding too much water).
If exercise is the main problem the logical thing to do is an exercise (treadmill) test to see what is going wrong.
Hi Jonathan, thanks again for the reply. I asked the Registrar that I saw and said to him a GP I saw at my surgery asked me to suggest a Stress Echo and he refused to put me forward for one. I know there are loads of people in the profession that are incredibly good at what they do but sometimes I come across some people that I do wonder why they want to send you on your way so much. I understand there must be budgets to stick to and professionals don't want to waste time on tests that may not conclude anything but I feel let down by this particular guy as you have probably seen in my previous posts. I have been exercising for over 2 years with issues such as the high heart rate, nausea, headaches, cough post exercise, breathing difficulties, dizziness and other things. Chest pains have been a more recent thing, plus pins & needles, these can happen with or without exercise. Doctors encouraged me to do more exercise when they first mis-diagnosed me thinking I had exercise-induced asthma which has now been officially ruled out after Lung Function tests proved my results were good even though I still had coughing fits after my tests, which I still don't know why that happened. There are a lot of questions marks in my head hanging over why these things happen and why, with getting fitter and stronger in the gym over a period of time, that these things have not improved or gone away. Although most things are intermittent and have no pattern I try to keep up exercise as I hope that it will one day not cause any issues and I don't want to become unhealthy I just want to be normal. I am actually getting put forward to a POTS specialist team but the referral has not come through yet so I have that covered. If not POTS, do you have any idea what I should do Electrophysiology wise? I hope I don't sound like I'm making a big deal over nothing.
if your heart is going to slow in your sleep, sometimes not a problem as you would not know anything about it anyway . find out your natural base rate, then your age, and that should help.
don't end up like I did having a pacemaker when I didn't need one !!!!
No you don't sound like you're making a big deal over nothing and I can't see why they are reluctant to do an exercise test if most of the problems seem to be related to exercise. Unless, of course, you have already had the test – have you done a treadmill test or had an echocardiogram in the last year?
When you had the heart recorder did you do some exercise or have any of your typical symptoms during the recording – if so what did it show?
BTW having OK lung function tests doesn't rule out asthma – you could have only exercise-induced asthma so it would only show up when you have just been exercising (and be normal at other times).
Some of your symptoms could be caused by reflex hyperventilation (which is the most common cause for breathlessness and can be a trigger for exercise-induced asthma). If you send me your email (in a private message) I can send you a leaflet on how to control this.
I have had a still Echo done which showed my heart is pumping normal but not an exercise stress one. Not had a treadmill test done. Holter Monitor was worn for 48 hours. One day I did exercise, one day I didn't. I did some exercises that can trigger my dizziness and I got dizzy during the exercise and had a bad migraine after exercising. I think if I see another person that can run through the results with me a bit better I may be a bit more clued up as the guy reading them didn't look at my symptom diary when explaining my results so he actually thought I was exercising on the non exercise day as my heartrate went 'very high' in his words which he said 'showed I was exercising' (when I definitely wasn't) as that was the non exercise day. Statements like that made me feel very un-reassured that he knew what he was talking about. He did say my heartrate was very high on the exercise day as well during the hours I pointed out I was exercising. Separately to this, I am getting a Neurology referral as I have new visual disturbances that have been quite recent so when I had a recent eye test they gave me a letter I gave to my GP to get me to see a Neurologist. I sometimes feel in a weak position not knowing what information could be really useful pointing out to any medical person, though I have got a sheet of paper now listing all symptoms whether I feel they are connected to heart or something else and explaining if they happen during exercise or without exercise or both. I don't like to waste time but it's hard when you are very unsure how helpful you are being as the patient !
Hi Jonathan, sorry I missed a bit of your message before. The lung function tests were done with both exercising and without (inhaling an irritant). I am due a hosp appointment tomorrow with the lung department but I doubt there is anything left for them to investigate, I am thinking they will discharge me. I will be interested to read your hyperventilation leaflet so thanks for offering to send it to me. I have really calmed my breathing down as I believe I used to struggle to breathe properly when I was really trying hard to breathe in and out deep breaths during exercise which is what my trainer asked me to do so now I try not to inhale and exhale too intensely as I think something was making me hyperventilate or panic which made things worse. Definitely things have improved and perhaps getting a bit fitter as well. I will keep you updated on the forum on how I get on with the hospital in relation to Cardiology. I saw that you are taking an interest in more 'Alternative' type therapies and approaches to heart issues, I am seeing a friend that hopes to help me by testing me for various things, she does natural medicine and that kind of thing. I am not sure if she will be able to help but she has taken an interest so I can keep you updated on if she picks anything up as well and if she recommends any treatment that could help. I really do appreciate that you have replied to me as I struggle to find anyone with the same symptoms or a similar story to mine.
Hi Louise, I sent the leaflet and I hope it helps. Do please let me know how you get on with it.
I got exciting news last week – after 5+ years trying with the University Hospital and no response, the Nuffield Hospital here in Bristol has agreed to set up a research clinic for breathlessness, with physiotherapy support, to train people in my breathing technique and measure the results objectively and by quality-of-life. Starts 1 Sept. – progress at last!
Hi Jonathan, I will have a look at the leaflet thank you for sending it. Well done on your progress with your research clinic - I hope it goes as well as you hope it will. I have been discharged from the Lung Department today so I'm hoping to focus my health stuff on Cardiology areas now.
Hi Jonathan, this is good news!
I have been using your breathing technique since receiving it and have found it very beneficial, especially at the times when I wake up in the night with heart pounding and breathlessness. I suspect I've managed to calm everything down on several occasions enough to avoid going into AF. Certainly I'm more confident and calm now so thanks again.
Best Wishes, Jane
Normally here in USA we would have you with Pacemaker. I have Mobitz II AV block (that's one step more- step 2 #2 heart block and I already have a CRT-D pacemaker with defibrillator, but my EP said that for either Wenkebach or Mobitz II I would get device! I feel that you have TERRIBLE symptoms and you should NOT give up! This is ruining the quality of your life and you could easily slip into further heart block. Just the fact that you are having terrible symptoms should be enough for any EP to keep you. I would be curious what your ECG says, and if you have had a recent echocardiogram!
Thanks for your post PattiJay. My ECG said right axis deviation. A still Echo said my heart was pumping fine. My holter monitor results were given by a person that has a job description of 'record keeper' so I feel he wasn't the person to give my results to me but he concluded Wenckebach on a number of occasions during my sleep and described my heart rate as 'Very high' with both exercise and on a day when I wasn't exercising (which he thought I was exercising as it was very high). I am taking things further as I don't feel like I should be discharged. Also this guy refused my request from a GP at my surgery to have a stress Echo. I am being referred to a team that specialises in something called POTS to be tested for that. I am waiting on a call from the Cardiology specialist I was due to see...not this record keeper guy to go over my casefile and answer questions I had in a letter sent to the hospital patient services team. I am glad that you got your pacemaker and hope that it helps you.
My follow up letter has arrived. It says that the Wenckebach did happen in the day as well as night (I thought it had just happened at night when given my results) not sure if that is significant or not. Does that make any difference Jonathan?
I have Mobitz 2 Heartblock, but if I had Wenckebach my EP would still implant a Pacemaker or CRT-D. DONE. I live in USA, Chicago, IL. I got CRT-D 4 yrs ago when I just had LBBB! I just developed the Mobitz II (you have Mobitz I...) after LBBB and Left Fascicular Anterior Block. You probably have a whole lot of other dangerous things going on with your heart with all those significant terrible symptoms. I had syncope at a red light while driving. Is your Cardiologist waiting for that? He's not the appropriate Doctor anyway. Stop right now and get on the list for an Electrophysiologist. DO NOT STOP UNTIL YOU GET AN APPT, KEEP EMAILING THEM UNTIL U GET APPT, Since you have dangerous symptoms you are headed for MObitz II,
I hope I have helped! Good luck! I will follow you! I hope for you to be LuckyLouise08!
Hi PattiJay, in the follow-up letter it says that the periods of Wenckebach did not relate to when I had symptoms in my diary. I don't know enough about second degree heart block type 1 to know if the symptoms and skipped heartbeats have to be at the same time or whether my symptoms could be as a result of the skipped beats even though they would have happened away from the skipped beats. Or even if I did another holter monitor test, would my symptoms and Wenckebach episodes potentially be at the same time on another holter monitor recording if I were to have a longer period of time with being recorded. There has been a request for me to see a Consultant Cardiologist to see if they will do tilt table tests on me and a CPEX and any other tests to look for POTS and an exercise Cardiologist has been copied in to see if he think exercise testing will be of any benefit to me (which I want). Nothing so far mentioned about seeing an EP. I wish I had more knowledge as it would help me understand things a bit better.
I've just Googled the Consultant Cardiologist and he is an EP hopefully things will be easier with my referrals
Hiya luckylouise, you were kind enough to respond to my newbie questions so I thought I would look up your posts, which brought me here.
I remember you said you have Hypermobility Syndrome. Well, as you probably know, if your PoTS is secondary PoTS, secondary to a Hypermobility syndrome, then it is not going away and will not 'clear up by itself' (unlike some other more common types of PoTS).
So I thought you would like to know, there are two EP's in London, who actually understand PoTS and autonomic nervous system dysfunction. (So few doctors actually understand PoTS, so this is brilliant!) Maybe you could get a referral?
(For any newbies reading, an EP is a cardiologist who deals with the electrics of the heart rather than the plumbing).
In case you need to know this:
The only people to give the whole battery of tests for POTS and related, are the Autonomic Unit at the National Hospital for Neurology & Neurosurgery at Queen Square in London.
(Once you have been diagnosed by the Autonomic Unit, the added benefit is that even after discharge you are still on their books so that any doctor treating you can contact them for advice re your treatment).
The EPs who deal with AF and POTS are Dr. Tushar Salukhi at the Royal Brompton, and Nicholas Gall at Kings College Hospital. They come very well recommended by STARS (Syncope Trust who are a PoTS & syncope charity you might be aware of.)
Apparently it is possible for a GP to email one of these doctors and ask advice, so that might be a start if you are having trouble getting a referral.
I do hope you get it all sorted out to your satisfaction.
Thanks for your info. I am waiting to see if Imperial in London will accept my referral to be tested for POTS. Been a year now since I first started all the heart investigations feel like I am waiting forever for everything. It's very nice of you to reply. I will have a look at those places you said see what testing they do in comparison to Imperial.
This is the specialist I would see if I get the referral and yes imperial college hospital....imperial.nhs.uk/consultant-...
Thanks luckylouise I'll look into that.
I wonder why STARS didn't mention him, maybe they just don't know about him.
Hope it all goes well,
Best from Boombiddy.
Also a list of doctors specialising in POTS here....and mentions the ones you said as well as the one i hopefully will be under....potsuk.org/doctors
Thanks luckylouise, I will look it up! I think STARS probably just selected the ones they thought were best and nearest for me, so I thought they only ones d'oh! (Was too lazy and tired last night to check my facts).
Brilliant that you will get two birds with one stone, EP and PoTS.
hi , I saw your concerns purely by chance on the web, I have read some of the reviews or should I say replies, and they are all very helpful I'm sure..
Can I simply say on those I read of your writing, a lot of things are elevated and making you worry more ( probably cuz of the unknown ) for instance one of your symptoms pins and needles ( paraphesia ) I hope spelt correctly is a symptom of a panic attack, this with your exercise at the gym obviously is going to heighten those heart beats, coffee does the same.
As one caring person said on here, go for private tests if you are doubting, and stress can not help in these situations..
Good luck , louise 08
Hi Dave, thanks for the reply. I have experienced symptoms even on a detox that included no caffeine, no sugar, no dairy, eating only gluten free or fresh free range food, organic fruit and veg and meat. I went on that recently but my symptoms did not go away. I'm all for trying alternative methods of healthcare, so have tried eliminating what could have caused anxiety food and drinkwise amongst other things. I can get anxious as most people probably do but i'm not always anxious/stressed when these symptoms come on if that makes sense? I'm hoping that something will be concluded when I am tested for PoTS as it seems to fit more with my symptoms and is connected to JHS (joint hypermobility syndrome) which I have. Though I am not an expect of course
POTS can be misdiagnosed as panic as the symptoms share the same physical pathways (my non-technical speak, sorry can't find the words).
In the kind of POTS that is usually a secondary condition to for luckylouise08 's Hypermobiltiy Syndrome, the veins are too bendy-stretchy to push the blood back up to your heart efficiently, so there is often very low blood pressure within a few minutes of standing up or with upright posture, that causes your body to panic, (in an attempt to maintain adequate blood supply to heart and brain), even if you yourself are not stressed about anything.
The only way to relieve the low blood pressure of this kind of POTS is to get your feet up quick or lie down. Otherwise you will faint, it's the body's rough and ready way to use gravity to restore your blood pressure.
Have never been prescribed an anxiolytic by a POTS specialist!
***You*** probably didn't need to know all that, since Louise kindly posted a link to a POTS article and you kindly read it.
I think I'm feeling like a bit of an evangelist today. It's probably because in the past I thought I was losing my marbles, being told it is anxiety when it is a physical condition. Grrr. But not grrr at you since you had the grace to read the article.
Aargh didn't mean to go off on one on your thread Louise, but hope hearing about POTS may be useful to someone, especially as it is good for AF'ers to know about the autonomic nervous system...
thanks for letting me know what pots means , I wouldn't have thought you need a pacemaker for that though, pacemakers are generally for slow rhythms not fast ones. and I'm glad it seems you are getting to the bottom of it, in fact I'm pleased for you ...
Yeah I hope so as well. If everything relates to PoTS that's something that can be managed which is good. I will keep the forum updated anyway. Still waiting to see if my referral is accepted.
Just been chasing up my referral to Imperial and it turned out that they didn't receive my referral letter so the nice secretary is fasttracking my appointment to be seen hopefully on 19th October. I had a feeling that my letter had gone missing as it's not the first time this has happened under Cardiology at the hospital local to me. Hopefully will get some answers soon so feeling a bit better but still a bit disappointed that I have waited so long.
Hiya luckylouise08 , I spoke to STARS the other day re needing an EP who not only understands the autonomic nervous system and POTS, but also deals with sleep apnoea, and they recommended your EP Dr. Boon Lim!
I thought he sounded familiar... 😉😄
Very excited as it was going to be a problem getting integrated care for all these things!
Very glad to hear about his helpful secretary fast-tracking you after someone's blunder. Very best wishes for 19th Oct. & would love to hear how you get on.
Hi Boombiddy, aw that's really cool that you have Dr Boon Lim also. From what i have read about him on the internet he appears to be a bit of a legend or a wizard ha What's next for you healthwise? I got good news...my referral appointment came through and it's moved forward to 5th October now. Happy i will be seen but nervous as i really want a diagnosis and i think i will be a bit stunned if they do not find any conclusions. At least if it is POTS i can manage it in some ways.
Hiya L! Yes know what you mean, I felt I was going to be turfed out as a fraud/hypochondriac/insert your worst fears here. I thought it with UCLH and the EDS (didn't happen) and with the Autonomic Unit and the POTS (ditto).
**I think it's what everybody feels**. So don't worry.
I didn't quite believe it when I was diagnosed, yet I am fairly classic EDS POTS.
So, don't worry about it, and be clear that even if it isn't POTS you want answers.
Ps: sorry if I'm telling you what you already know, but just in case this is helpful:
Since you could be foggy on the day, bring notes of your symptoms, a brief medical history, and all the questions you want to ask him.
If you print these on one side of A4 each, you can hand them to him and he can skim down the page quickly and get a quick picture of where you're at and pick out anything relevant. And he can keep a copy to refer to, very helpful for him.
(That's the way the EDS/HMS doctors like to work anyway, as they know the patient may be suffering brain fog on the day).
If it would give you the security of knowing you have all the info you need to hand, you could also have any relevant clinic letters with you (eg HMS/EDS diagnosis letter).
But, mainly, just prepare your questions, and relax and let him lead you through the consultation. He sounds like he knows his stuff.
Very thrilled for you,
- Oh, and thankyou for asking! Yes, what's next for me health-wise? Er, hopefully to see this doc soooon, but first my GP has organised a 24 hour Holter monitor to ’speed up' a referral. Except the appointment for this Holter monitor isn't til late October. (She thought it'd be done in a couple of weeks, bless her).
Like you I am hoping something shows up!
I will be very interested to know how it went with Dr. Lim.
All the best, B
Glad you have had some things diagnosed. Are the specialists looking for additional health issues with you? How do you manage your EDS POTS? It's really nice to speak to someone that understands me on this level
Yeah I usually write a nice big A4 letter of symptoms and things that could be connected. It ranges from when I caught Glandular Fever which led to Chronic Fatigue Syndrome, that i'm barred from giving blood due to poor recovery twice, to the JHS and insomnia and struggles upon exercise (nausea, dizziness, migraines and so on). The reason i write lists and hand them in is i reckon things could be missed if a picture isn't drawn and it's so easy to forget something significant. I think the fact I was going to faint on giving blood first attempt & that i took over an hour to be able to stand up on my second attempt with the nurses not allowing me to due to the way my body reacted could be quite related if POTS is the factor in a lot of these things.
I am going to do an update on here after my appointment. Please keep me posted with you as well! L
Hiya luckylouise08 , I see you are already on the ball. The consultant's job will be easier!
One way or the other this appointment will give clarity, which is what you want whatever conditions you have, so don't let it worry you too much.
Best from B.
Re managing with EDS/POTS etc., I highly recommend Brad Tinkle's Joint Hypermobility Handbook. It is comprehensive and brilliant. He covers every system of the body affected.
There is a section with brief chapters on musculoskeletal aspects, which you can photocopy and take to your doctor so they know how to treat you. It can be eg. the jaw and temporomandibular issues, or the foot/ankle,...
It also deals with associated things such as hormones, pain, or dizziness/light-headedness/POTS, etc. etc. etc.
There's a section on how to cope, with many chapters including work accommodations and ergonomics, around the house, nutrition, massage, therapies...
There are so many references in the book too, to useful resources and books. I've seen references to scholarly articles but also ones like "How to Talk to Your Doctor" and so on.
Dr. Tinkle's chapter on coping Around the Home has really helped me.
Best wishes from B.
Hi all, just an update. I saw Dr Boon Lim yesterday and 2 males on his team. They were all really nice and professional. I had a 'stand test' done. My heartrate increased very quickly on standing but did not go up as far as they thought it would after standing for about 4 minutes longer. I have been asked to try a FODMAP diet and record if my symptoms still persist, to add more salt into my diet and record my blood pressure recordings sitting, standing + laying down and record when i have symptoms in a diary. I will be going back for a tilt test and an exercise test where i will wear a mask. Dr Boon Lim said my list of symptoms looks very much like POTS but the stand test didn't show the results he had expected so it's a case of more tests and trying to work out if it is or isn't POTS. I'm hoping that i will get some idea of what is wrong by the time i'm finished. Bad news is my next follow up is in 6 months time. Long wait again but that is as the clinic is so busy.
Thought I would give an update on here. I went for a Tilt Test at Hammersmith Hospital and there was no issues other than a headrush when position changed at the start from laying down to being upright. My heart rate and blood pressure remained consistant. I was then given a spray under my tongue which speeds the heart rate up. I then felt very unwell very quickly like how i feel with exercise (dizzy, migraine, disturbed vision). I got worse and worse which i said to the Doctor in the room over and over again. He didn't re-position me straight away but i think he was waiting as my blood pressure was dropping rapidly and he probably wanted that to show on the screen which it did. He then positioned me horizontal and said if he had left me that way i would have fainted. They were looking for my heart rate to shoot up further (which would be a positive result for diagnosing PoTS) which didn't happen but he did explain that i have an issue with being prone to fainting and as my blood pressure is low, when i exercise and my heart rate speeds up, my blood pressure drops even lower and as it's low already it's going dangerously low and causing symptoms which then lead me to ask to lay down or stop what i am doing. Luckily he said i have time to identify when i am close to fainting as the symptoms alert me to this. The doctor has suggested i may need to go on medication to put my blood pressure higher than it is at the mo, salt my food heavily and drink 3 litres of water a day. I'm not really sure what else i will need to do. I'm not allowed to go mad on exercise like i have been e.g. when i am rowing my trainer just gets me to go full speed ahead fast as i can but i now have been told to ease gently into everything (so rowing would be starting slowly before going faster) and i can clench my leg muscles when i feel faint to help circulation improve if i feel symptoms coming on. As they were looking for PoTS and the heart rate didn't go overly high on the test, i think they won't diagnose me with this. The doctor said they may not have all of the answers for me at the moment and may do more tests but i think the fainting thing fits in with my medical issues as I felt that when i had issues giving blood with similar symptoms, that the exercise & giving blood issues were related in some way so looks like that part is spot on.
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