Pounding slow heart

[xtrillian]

I have problem with a very heavy pounding heart. My heart goes slowly when it does it usually about 55-65bpm but it feels likes pneumatic drill in my head. It is particularly uncomfortable when I lie down when it feels like the pressure is constantly changing in my head. If I get it bad which I do often it can stop me sleeping for hours and occasionally days and there's little I can do about. If my hearts not doing it I will just fall asleep but if it is I can lie in bed for hours and I wont. I don't focus on it i think about something else. It's just as if my bodies just in a state it can't sleep. Every time I get out of bed it get worse. Occasionally if lie down long enough usually about 3 or 4 hours without getting up i will fall asleep. Normally if my heart isn't been weird my heart rate is about 75 and I'm not distracted by it and it doesn't give me a headache and I can sleep.

I've been told by GP to just ignore it but It has been stopping me sleeping well for 5 years now and means I never have regular sleep and having poor sleep makes my health much worse particularly if I only have 4 or 5 hours. I'm not anxious about it in that I don't think I'm going to have heart attack or anything and I don't really focus on it's just that my body wont sleep in that state. While my heart is doing it I'm also very dizzy and exhausted and can't do anything but sit down as I have so little energy.

It almost almost happens at the end of the day when my blood pressure falls or when I get up to go to the loo in the night even if I sit on the end of my bed for ages and get up very slowly. This is particularly bad as I wake up reading the loo after 4 hours and then wont sleep again if my heart goes off. It's much more likely to happen if I've really over done it in the day. I can also set it off any time by not drinking for about 5 hours.

About 30% zopliclone will knock be out but I will sometimes wake up and my heart will be doing the same and about 50% of the time if I eat a big bowl of pasta covered in salt it will stop it. But it will only stop if I eat loads of carbs and salt and water. A small meal or sugary meal or crisps doesn't help. I have had an ecg which was normal. I tried repeatedly to do relaxation techniques which haven't helped. I don't really get anxious about it as I don't have to go to work in the morning as I'm off sick and my heart stays slow. If I get anxious my heart goes fast. Also when I stand up when it's been doing this I often feel like I've got cramp in my heart. Usually after 2 3 days of not sleeping I will finally fall asleep.

Anyway because of this and my sleep routine is a a wreck I constantly have to cancel doing anything because I have had days of 4 or 5 hours sleep or have gone 70 hours without sleep and as my worst symptom from ME is orthostatic intolerance and brain fog not sleeping makes it much worse. I drink loads of water and have lots of a salt but I can't drink too much before I go to bed as I have prostatitis and I will wake up needing the loo which will set my heart off. Amytriptaline and beta blockers make it much worse as does doing even small amounts of exercise in the day.

Help! any suggestions welcome. I'm 27 and this symptom has destroyed my life! I've had ME and OI for for what seems like my whole life. I got gradually worse and missed loads of school from age 5 to 18 because of illness but wasn't diagnosed with ME till aged 20 at which point I had never heard of it. I'm mostly housebound now and have been for 5 years after pushing myself massively for years and years and a number of viruses made me much worse. I tried everything I've been told do to do to improve and I really feel if I could improve my sleep I could make my health better and at least massively increase my quality of life.

Thanks in advance for you help.

[Dr Charles Shepherd]

You clearly have a number of rather complex problems which may (or may not) be associated with your ME/CFS

They really need to be assessed in a face to face consultation

Have you ever been referred by your GP to an NHS ME/CFS clinic where a multidisciplinary team would be able to look at how they might be linked and advise on the best way to manage them?

If you come back please let me know roughly where you live in the UK

[xtrillian]

Thanks for your quick reply.

Yes I visited ME/CFS team at Frenchay. They talked to me about sleep hygiene, pacing, grading exercise and trying to ignore my palpitations. I did all they said but have not improved I haven't been back for years as it made me very ill going there. I'm about to move to Coventry so are currently in between GP's.

[Dr Charles Shepherd]

We don't currently have any hospital based ME/CFS clinics in Warwickshire listed on the MEA website

Details for services in Leicestershire and Rutland:


Leicestershire and Rutland
Referrals are currently being directed to the Brandon Unit at Leicester General Hospital, where the clinical lead is Dr Trevor Friedman, a liaison psychiatrist: Brandon Unit, Gwendolen Road, Leicester LE5 4PW, tel: 0116 225 6193 (As at December 2012, we are informed that it was agreed that patients with M.E. were to be dealt with via neurology at the Leicester Royal Infirmary but that there are no current services available there. We suggest that patients discuss the services available with the local support group in the area – click on this link to find our local support group contacts page.)

MEA website: http://www.meassociation.org.uk

[dorothyt]

Hi
I also get these slow but pounding heart beats. Spoke to Gp and ECG showed nothing. So can you explain what is causing this as I thought it was like an erythmia. Comes out of the blue and makes you stop in your trackes, can be quite frightening. West Lothian 48 yrs old.

[xtrillian]

I think there is a specialist service in Birmingham much nearer to Coventry. All as I've had so much experience of seeing OT's and physio for ME I'm not sure it's worth me making myself really ill by going to be told aload of stuff I caould probably write a book on! But anyway thanks for your reply.

Just one more qeustion I wasn't sure whether to start a new topic. Some people have told me that I don't have ME as I had no trigger, no before and after I just got gradually iller my whole life. Does this mean you don't have ME?

[Dr Charles Shepherd]

Most people clearly predate the onset of their ME/CFS to a specific infective episode - often a viral infection

In a small number of cases the onset appears to be linked to another type of immune system stressor - eg a vaccination

A small proportion have no clear onset and report a more gradual onset - sometimes with repeated infections having a cumulative effect