I give up

[sam295]

What do you do when the cardiologist does not know how to treat you and says dont bother coming back to A&E, Just try and not to collapse on the pavement. I got a pacemaker but am still fainting possible low BP.

[beech]

Go back to your GP and ask for a referral to a new consultant!

[Fredders]

What an appalling thing to say! Completely agree with Beech, get a referral to another consultant. Tell your GP what the cardiologist said, they need to get to the bottom of it.

Wendy

[Shoshov]

I'm still waiting to see a cardiologist 4 months after heart attack. I'm passing out a lot at the moment too but it's not speeding things along. I agree get another referral. That's just not good enough

[sam295]

Thankyou for your help I am very lost right now

[Hidden in reply to sam295]

I believe you can complain to PALS the patient liason people at the hospital. I feel for you I have been referred for a 2nd option at a different hospital too. Good luck.

[Hidden]

Hi, first comment is the best one. Go back to your GP, bang on his door util he sees you and make sure you leave with a new referral. Repeat with the referral person. If it is too stressful for you, which i would understand, just get a friend to go along with you. Once this is in well underway, take time to think if the first guy is worth reporting but tell your GP what happened anyway so he can decide for those that follow your path.

Hope you get sorted quickly and get on with treatment and recovery.

N

[Midgeymoo17]

I am going to give advice that is a little to the country to the other people (I am also going to make the assumption by collapse you mean blackout)...

Clearly you have had an issue with heart rate and pacing. Presuming this diagnosis was made after the appropriate tests, the pacemaker will have resolved that problem. If you are still collapsing/ fainting this would indicate that the problem is not heart related and the cardiologist was right to say he can not treat you- as whatever the correct diagnosis is it is out of his remit. A referral to another cardiologist is not going to change this.

If I was you I would be asking the following:

(1) Does your pacemaker store data about you heart rate around the clock that your cardiologist can view? Or does its automatically store data about abnormal rhythms, if you have one, that your cardiologist can see? If the answer to either these is yes, then you can be rest assured the problem is not cardiac/ cardiac cause has been ruled out. If no I would ask number (2).

(2)Ask for a 24/48 hr holder monitor with 24hr BP monitoring. This is a continuous ECG worn for 24hr and has a BP cuff attached. The BP cuff normally inflates roughly every 30 minutes and has one inflation at an unplanned time. GP's can normally orders these without referral to a consultant and it would check the function of the Pacemaker and investigate the low BP theory at the same time.

(3) If asking for a second referral, I would be asking for one to a multidisciplinary syncope clinic rather than just a cardiologist if this is available in your area. The advantage of this is the team viewing you case will come from a number of specialities that each treat different causes of blackouts, this will likely include a review of you cardiology notes by another cardiologist. Else, ask for a second opinion by another electrophysiologist, however, as I said earlier, if the diagnosis is correct they are unlikely to give any other advice.

I would be doing:

(1) Document every minute of every day through the next three or so collapses. This may sound like a lot of effort but virtually anything can cause something caused vasovagel syncope. For one of my friends, like you, kept collapsing had all the heart test- normal. Was asked to do this by the syncope clinic, diary revealed all collapses followed eating bread, and only bread. She was then asked to repeat this under observation- again lost consciousness but observation revealed no dangerous issue. Cut bread out- episodes went. So even the smallest detail is important. Equally, if no trigger it may reveal a timing pattern you did not see before and help work around it for the time being.

Isolating the causes of collapse (blackouts) is very difficult. Heart tests are performed because when the cause is cardiac this potentially life-threatening but most blackouts are not cardiac in nature. The other causes are much harder to identify and take time- do not give up but be open to the idea the issue is not heart related and work with your GP to find it.

[sam295 in reply to Midgeymoo17]

Thankyou all advice is gratefully accepted. I have had pacemaker checked x3 times and been told it is working normally. I have documented the details of collapses and the theme is that I have high BP or exercise followed by resting then collapse as maybe BP goes too low. I understand it could be epilepsy but have a neurologist saying he thinks it is cardiac. I suggested another opinion maybe EP but my cardiologist said if it was due to arrythemia they would have seen it by now. I am struggling to get them to listen to me . I know it is not straight forward but I really need help.

Thankyou for your comprehensive response

[JP42 in reply to sam295]

Hi have you been tested for Autonomic Failure by a Neurologist?

I have had my pacemaker for 5 years now and mine was related to Autonomic Neuropathy.

Or maybe your symptoms are related to Postural Orthodostatic Hypotension, which most cardiologists are not interested in.

[MichaelJH Heart Star]

Tend to go along with both types of response. The consultant's attitude is totally unacceptable! However, it is worth thinking outside the box. About five years ago someone I know collapsed a number of times. The initial thoughts were heart but it turned out to be epilepsy. Hope it is not but unfortunately one condition does not exclude others.

[kerrynj]

Hi Sam, I had similar response from the cardiologist, it was my GP who tweeked my meds to enable me to stand up again! When you see your GP for a referral to a different cardiologist I'm sure she/he will be able to help in the mean time. Good luck .

[sam295 in reply to kerrynj]

Many thanks I am grateful for all support

[summer49]

My husband was told to get a hobby !!!! Your not alone

[KEN65 in reply to summer49]

Joking a side that was funny, but wish him well, I am also frustrated in tackling my fatigue with no understanding but hey ho maybe I'll take up a hobby..

[BigT2013]

U can make an official complaint to NHS England.

I did for my fathers GP after they sent him home then he had a full blown heart attack.

All the staff including doctor's no longer working there!!! 😮

[sam295 in reply to BigT2013]

yes several folk have suggested doing that and I think I will

[sam295]

Thankyou all for your support, I have bought a wrist monitor that notes your heart and blood pressure and heart beat and it has been most interesting. (not a fit bit) a cheaper version. I can see that after some activity when my heart beat is raised say to 85 it then falls to 56 or 59 . I think my pacemaker kicks in at this point it is set at 60. I think I have a tacky/brady thing going on it is pretty clear,

[Hidden in reply to sam295]

I would be interested to know what's the "normal" range of heart rate change/variations.

HR variation is apparently completely normal part of heart function.

Apparently, it is a sign of longevity. Also, there must be some individuality/individual presentations in HR.

[Fortepiano]

I absolutely agree with Midgeymoo's excellent post. Fainting has many causes, and it seems that your consultant does not think the faints you've been having after your pacemaker implantation are due to a cardiac cause, in which case all he can do is send you back to your GP who can consider a referral to a syncope team. Going to A&E is not necessarily suggested for non-cardiac fainting that is due to low blood pressure - I really don't think a complaint is justified here. I suggest getting a copy of his letter to your GP and see if that makes things clearer to you.

You definitely need more help with your faints, but another referral to a cardiac consultant would not be useful if that is the case, as non-cardiac fainting is generally managed by your GP. In any case I suggest going back to your GP and press for a clear diagnosis and help on strategies to avoid fainting triggers. Referral for a tilt-table test might be useful too, and definitely training in Physical Counterpressure Manoeuvres to abort faints, as you say elsewhere that you have sweating and nausea warning you of an imminent faint.

This is miserable for you and you need a clear diagnosis, but if your faints are due to low blood pressure rather than cardiac or neurological issues then lifestyle measures are the main therapy. Medical professionals need to listen to us, but we also need to listen to them!

A heart rate of 85 with some activity is normal. Tachycardia is a resting heart rate of over 100.

[MarkWilson]

You need to get a second opinion . Please pay for it and then sue the Foundation trust

[JP42]

Look at Autonomic Dysfunction.

There are only a few centres that specialise in the UK

"Autonomic Clinic" NHNN Squeens Quare London

[sam295]

I think I have neurocardiogenic syncope, after alot of reading it really fits. It is a pity my cardiologists did not come up with more of a solution.

[Hidden in reply to sam295]

The way they are these days. I made a complaint not so long ago (not Cardiology), the complaint was sent to complaint department after PAL couldn't act. I didn't even receive an acknowlegement. Time to chase up. Complete waste of time.

[mariancolyer]

Sounds as though this man should not be in medical practice. Just seek advice elsewhere. I am convinced you will NOT receive the same reply.

[humph3]

Look up Linus Pauling on you tube and start taking high dose vitamin C

[sam295 in reply to humph3]

will do thanks

[sam295 in reply to humph3]

I tried the high dose vitamin c today and I know it is early to say but I feel like I have more energy

[humph3 in reply to sam295]

I have been on vitamin c for 3 months without taking any of the heart medications and I definitely feel better and are free from angina

[sam295 in reply to humph3]

I am taking 1000mg a day what about you?

[humph3 in reply to sam295]

I take 5000mg a day bit C - I also take 3000mg L Lysine as per Linus Paul suggestion

[Prada47]

Please don't make the assumption the Cardiologist is wrong. His attitude looks like he needs educating in patient care, but you can't sue someone for attitude because you are not happy with the diagnosis. We are very complex individuals and sometimes what's wrong doesn't jump out even to an " Expert " This does sound like it's time for the Expert to call upon other Experts in the guise of a Multi Discipline Team.

Stick with it and I feel sure the NHS will get it sorted soon. Was the Cardiologist the one who suggested the Pacemaker ?? and has he been your usual contact with the Cardiology Department ??

Regards Frank W

[sam295]

yes he was the one who suggested the pacemaker, I understand it is not always straightforward.

[Prada47]

I understand about not quite straightforward. I had a By pass op to clear my LAD only problem was the graft was connected to a branch not the LAD

My GP along with myself couldn't understand why I was no better after the CABG !! During another intervention the Cardiologist just said that's why you have never felt better ( lets get it fixed ) which he did and now I feel like I should have for the past 3 years. I understand it must be difficult working on a stopped heart so I accepted the apology and moved on.

Prada

[sam295 in reply to Prada47]

I had the tilt table test and failed miserably passed out after 8min with rapid fall in BP and heart rate they now think it is neurocardiac syncope

[sam295]

I am delighted that you got sorted xx

[Bizuk]

Have you considered seeing a different doctor? I am sure you have but please don't give up! Good luck!

[Hidden]

Thank you for the great tips & support!

Much appreciated.