Chest pain

[Rosserk1]

Hi I'm new here and desperate for some advice. I suffer from a connective tissue disorder known as Ehlers Danlos (EDS). I have been having chest pain and extreme breathlessness on exertion, feel unsteady on my feet and profus sweating. I am also cold and clammy to the touch and wake in the night saturated. I had a 48 hour holter which showed a heart rate range from 55-144 although I have recorded much higher and lower rates. I then had an angiogram which was horrendous! People with EDS are typically resistant to pain killing medication and anesthetiser. I have very tiny arteries which made it extremely difficult to perform the procedure.

Anyway the results were normal and I received a letter saying that my heart rate was within the normal range and I don't have Postural Orthostatic tachycardia (POTS) and therefore the pains in my chest are not caused by my heart! I still can't believe what I have read. Firstly and angiogram is not a diagnostic test for POTS which is common in EDS patients. Secondly how is 55-144 a normal range under normal day to day activity when the patient has the above symptoms. I can go from a resting heart rate of 55 to 120 in the space of five minutes just walking from the seated to the toilet! The consultant has referred me back to my doctor whom I am confident won't order any further tests! Any advice would be appreciated?

[Goldfish_]

Sounds a complicated problem. Can the Ehlers Danlos Patient support group help? The POTS support group has useful advice as I gather most of the treatment is through self help/ lifestyle potsuk.org/general_advice

At least you've had coronary artery disease and arrhythmias excluded.

Maybe ask your doctor for a tilt test???

[Rosserk1 in reply to Goldfish_]

Hi thanks for your reply. I am not convinced that i have had my AD and Arrhythmia ruled out particular as the Doctor is claiming to be able to diagnose POTs through an angiogram.

[Goldfish_ in reply to Rosserk1]

Point taken, but since the management of POTS is largely through self care, why not just do the self care anyway?

If you are in the UK, I can see that there may be a reluctance to investigate further unless you go privately

[Rosserk1 in reply to Goldfish_]

I've tried everything and I'm getting steadily worse. Not sure chest pain is associated with POTs but I could be wrong . My blood pressure which has always been solid at 120/70 is now 148/90 at rest and plummets when I stand up so starting to get pretty scared now. I had a lot of problems during the angiogram the consultant almost abandoned it. They also couldn't seal it and the bruising is horrendous two weeks after the test. I have also got a couple of lumps like marbles in my groin which are adding to my stress.