Question re symptoms

SETTINGS AND SYMPTOMS

by BradyJohn - 2023-11-12 17:41:04

I would say,  start by keeping a log of what you are feeling and when.   Be specific and think carefully about how to describe your symptoms.   That will help your team to correlate symptoms and settings.  And, hard as it is,  try to be a bit patient.  I'm 3.5 years in, and three weeks ago one small setting was changed that has really helped me. 

Take care, 

You will get there! 

John 

That's a Tricky One!

by Penguin - 2023-11-12 18:07:01

I'd echo BradyJohn's suggestion above, but I also try to keep in mind that symptoms aren't always down to settings and the pacemaker. Sometimes it's something else like a virus, medication or another condition that you have.  

When there's direct correlation it's relatively easy. E.g. if you go into the pacing clinic and they change one setting and you develop new symptoms afterwards it's pretty obvious. 

If something is worsening or changing, and the settings need to be tweaked or changed it's a lot harder to recognise that settings you have found helpful may not be helpful anymore or may need to be tweaked.  

You could always try a bit of trouble shooting on here.  It's not always accurate, but might help you think it through. 

PS: I've posted a comment on one of your old posts about hiccups. 

Years of training in human physiology and years of experience...

by crustyg - 2023-11-13 05:30:06

...that's why they are called 'Doctor'.  It's not really your role or area of expertise to correlate settings and symptoms.

There's no doubt that you can help your EP-team by making measurements of your HR at times when you feel unable to do what you need to, but you'll still find that your team are more interested in how you feel, faint, breathless, muscles like jelly, than they are in your HR numbers.

crustyg

by piglet22 - 2023-11-13 05:57:22

Not so sure about that.

If I had relied on my GP to make a good assessment of my symptoms over 18 years ago, I would still be rubbing my neck to cure heart block.

He had no interest in plainly obvious symptoms of not having any rate reaction to exercise.

The surgery has a spiral staircase covering three or four floors.

On one occasion, I suggested that if I went up and down the stairs, it would bring on the symptoms.

Not interested.

Only by being persistent and keeping good records did I finally get a proper consultation and diagnosis.

A cider vinegar and honey man.

Blind Spots & Language

by Penguin - 2023-11-13 07:05:01

I find that when patients tell doctors about new symptoms and there is something like 'anxiety' written in their history, doctors have a propensity to lean towards the anxiety diagnosis first. 'Exhaustion, weakness, shaky feelings' can be transposed onto anxiety disorders and stress but may be due to something else.

In a short appointment a gut reaction like this can take over the course of the consultation. 

Then you've got to factor in language. A relative of mine used to say, 'I just don't feel right' and that was as much as anyone could get from them to describe their cardiac symptoms.  It used to irritate me, but when I suffered my own cardiac symptoms I couldn't describe them easily either! 

GPs who know you, your family, your history are invaluable. Pacing clinics and consultants who build a relationship with you and understand your history are invaluable too.

There's no time to build these relationships any more and everyone is getting short changed as a result - doctors and patients - although I have been fortunate of late. 

Symptoms and settings

by Selwyn - 2023-11-13 09:56:57

Such common sense from Penguin.

Of course, as a patient you cannot correlated symptoms with  pacemaker settings.

As a patient you gather symptom evidence ( as BradyJohn suggests with memory, a  diary/log).

You then have to present your symptom evidence to your physician  - this is best done without embelishment and self diagnosis. 

Your physician is then free to evaluate and if necessary explore ( with questions, and or investigations) your symptoms and your perceptions.

The outcome should fit into a recognised pattern ( training, understanding, experience). Hopefully, this correlates to the perceived problem ( diagnosis), and further management ( settings) can be undertaken if necessary. An explanation of that process should be presented to you, so that any questions you have are answered.

The aforementioned involves good communication ( a two way process). This may be less than ideal from one or both parties.  You are then in a mess! If that is the case, both parties may have to accept their own  responsibilities.