You should ask your cardiologist for a referral to an electrophysiologist. This is a cardiologist that specializes dysautonomia. The specialist will probably order full autonomic testing. If they know anything about EDS, they will also order head and neck MRIs.
I had full autonomic testing with the following:
1. Tilt table test with nitroglycerin provocation.
2. Catecholamine level determinations.
3. Intrinsic heart rate.
4. Beta adrenergic hypersensitivity.
5. Alpha-adrenergic activity and sensitivity.
Hi, well, my cardiologist is also an electrophysilogist… Main problem is that no tilt table are accessible where I live and I can’t travel because of my severe panic disorder… Also no money to travel since I don’t work and I’m disable from work for life, have university student loans to refund every month, money for pay the rent and don’t have enough for foods so have help from my family…
I had my catecholamine level check in 2010, a 24 hours urinary test… The results was somewhat weird with low cortisol, was about 60 but need less than 20 to qualify as Addison disease. Epinephrine/adrenaline was not detectable so vey low and noradrenaline was borderline low… But at the time my anxiety and heart symptoms wasn’t the same at all, it was mild compare with now! Sure I will ask for that test again…
B-adrenergic receptors sensitivity, need one. I had one stress test done with dobutamine and the cardiologist had to abord it after only receive 20 seconds of the injection cause my heart rate was already at 200… That’s why they sent me to another test call a persantin mibi nuclear test,
They inject a drug call persantin who narrowing the coronary vessels like vigourus exercise… they do that test on people who cant run on a treadmill or cant have chemical stress test….its to evaluate the patency of the coronary vessels. Anyway, everything is recorded on an EKG when the persantin is injected… They record the EKG for 5 minutes and then inject an antidote to stop the effect of the persantin… You go eat and return 1 hour while you lay down on a table and a MRI machine take pictures of you heart at work… After 20 minutes you can return home and you have to return the next morning, they shoot a mibi , it’s a nuclear contrast agent and they take pictures of your heart at rest… They compare both pictures when the heart work and when it’s not working and they can see things like ejection fraction, evaluation of your blood vessels near the heart, and many more things… It’s better than an echocardiography or a stress test, but not as good as an angiography… Anyway in 2010, I was able to run on the treadmill and reach the target heart rate and have the echocardiography done and my ejection fraction was 60, wasn’t on a beta-blocker back then… In 2012, I try the treadmill stress test with the echo but wasn’t able to walk on the treadmill cause of the dizziness and also weakness. So the cardiologist just said that he will do the dobutamine test insistead… And I had a bad reaction… The day I had the dobutamine injected, I didn’t take my beta blocker… The cardiologist said that my beta adrenergic receptors are very sensitive to the adrenaline and noradrenaline effect as well… The Persantin drug was also bad, it stress the heart like exercise after all, my blood pressure was sky high and pulse rate was 130 lying on the table! September 2012 my EF was only 45!
Alpha adrenergic receptors are also very sensitive for sure. I took a med call seroquel, it’s an atypical antipsychotic, took it for insomnia so low dose but the main effect is as an antagonist of the alpha 1 adrenergic receptor… Very bad tachycardia from all th meds who affect those receptors… Same thing happen with the mirtazapine (remeron) who is a weird antidepressant med with main action as an agonist of the alpha 2c adrenergic receptor who increase the release of noradrenaline and serotonine in the brain… Low dose act mainly at the H1 receptor as an antagonist… So strong sedation… But tachycardia from that med as well… In fact my panic disorder start again after several years under control, while my old PDoc put me on the seroquel to help my insomnia… I had tachycardia all the time at daytime and that’s what trigger the panic attacks again and that’s when I start having heart related symptoms…
Well, will bring the list of tests you wrote to my cardiologist and will hope he will be able to at least do more testing on me…
I had to go to the ER yesterday, I had and still have bouts of tachycardia, chest pain, left arm numbness, difficulty breathing… I had the usual EKG again, had blood test, X-ray of the lungs, a test done for my lungs to see if I’m having emphysema… Th Doc at the ER say that all my tests are normal… Did had tachycardia in from of him, I show to him that when I’m sit its ok but as soon as I’m standing the heart rate jump by about 35… He said to not worry… And said to ask more tests to my cardio Doc next week… He didn’t wanted to change the propranolol for another med and said that my cardiologist will do that next week… But he told me that the propranolol is probably why I feel so weak and tired… He said a newer beta blocker or better one like bystolic or Coreg will be better for me… I don’t know what to think about that…
I know that I produce more adrenaline and noradrenaline now… I have some clonidine at home but don’t want to try them since I’m already on a beta blocker and don’t want to have rebound hypertension… I remember that the clonidine was ok before going to the gym and keep me from having panic attacks cause my heart rate was too high while I exercised… But never take it to reduce my heart rate only… I don’t know if the clonidine have some protective effect on the heart also like the newer beta blocker or the ace inhibitor?
Well thanks for your help! Vincent