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TOPIC: DLA Home medical visit

Re:DLA Home medical visit 6 years 4 months ago #63753

  • originaldave
evaness wrote:

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.


a nice post...but for dealing with dwp who are blinkered its better to put the heart first and say the other me problems stem from the heart as even the dwp admit we have hearts even if they dont :silly:

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Re:DLA Home medical visit 6 years 4 months ago #63758

I had a home medical which turned out very well. I would say have your Welfare Rights worker with you if you have one. We also recorded the assessment which we intended to use to prove any points if necessary though it turned out it wasnt needed.

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