DLA Home medical visit

Hi lauranjohn

Just to add my tuppence worth - problems with the heart and M.E. often go hand in hand. I have had them for years.

Many patients suffer from tachycardia (fast heart rate) and or irregular beats which can be felt as a pounding in the chest and/or neck. This is due to low circulating blood volume and low blood pressure (also common in M.E.) The heart beats a lot faster to try and keep blood pumping to the brain.(Orthostatic Hypotension) BP should be measured lying down then standing up for 10 minutes. In some patients BP drops when in a healthy person, it should rise and the pulse rate goes up to compensate. This is called POTS - ( which Postural Orthostatic Tachycardia Syndrome)Many people with ME have this. Unfortunately the NICE guidelines specifically prohibit GPs from requesting a Tilt Table Test to check for this in ME patients. (Scared patients will actually be able to PROVE they are seriously ill!)

Also due to the dysautonomia with ME sometimes the electrical firing signals to the heart just get messed up.

This is why most M.E patients feel better lying down. Standing upright and still is the worst thing for M.E. patients. It can lead to a drop in BP and loss of adequate blood supply to the brain. This is why patients can suddenly feel dizzy, feel faint or actually faint and go a bit confused and suddenly have to lie down.

Walking about a bit is better than standing still as the circulation is helped by the calf muscles pumping blood.

If BP is low it can be helped by drinking lots of water and extra salt. Best to get your own meter to check at home as most people's BP rises at the surgery due to "White Coat Hypertension" i.e people get stressed seeing the doctor so the BP goes up and may be recorded as normal or even high.

It is also very common for M.E patients to have A Mitral Valve Prolapse,(cause as yet unknown) which may or may not be bad enough to need treatment.

A check by a Cardiologist is necessary to rule out other problems from other causes.
Sometimes they will do a Holter Monitor test. This is wearing a heart monitor for a day or a week to try and catch any underlying arrhythmia (abnormality of the heart beat,) which can be missed on just a quick ECG.

Dr Paul Cheney in the US has done a lot of work on this as have others and views ME patients as suffering from a conventionally undetectable form of cardiomyopathy.That is one big reason why ME patients feel worse after exercise and exercise can actually be dangerous for many.

There are supplements such as Co- enzyme Q10 that can help (but expensive) and your GP probably won't know anything about it.

Of course there could be a more another problem going on, nothing to do with ME, but either way should be checked as heart failure is one of the leading causes of death in ME patients.

Hope you can get a cardiologist who knows something about ME,

Good Luck
Evaness.

Hiya evaness your comments have made so much sense to myself and my partner John, especially the feelings of dizziness etc on standing still. he has had the halter monitor (still awaiting results from that from may), finally had his cardiac mri scan 2 weeks ago and appointment with the consultant is on 14th oct although will hopefully get a cancellation as this is another long wait. thankyou very much for sharing your knowledge with us.

Do be careful if he decides to stay in bed, as he should if that is how he feels on the day, don't give the impression that he never gets up or goes out or he will not be considered for mobility allowance.

thanks bee will be sure to remember this when the doctor visits.

Hi All

got the letter this morning that the doctor will be out to do medical home visit on Monday 08/08/11. Any more tips, partner spends most of his time in bed at the moment due to mc/cfs and heart abnormality. should he get dressed and sit downstairs, something that he hasnt done for some time now or should he stay in bed and explain to doctor. probably worrying about nothing but he just finds this so stressfull. his memory and concentration are effected so are we able to write things down for him to tell the doctor. any tips would be helpfull.
thanks laura