hoop311

agreed with OI and reactive hypoglycemia - I had a continuous glucose monitor test by the endocrinologist i saw and she is the one who picked it up - i eat every two hours practically - it helps - I can not let myself get hungry because usually by then it is too late...

i was given a beta blocker as soon as had TTT - i have had mini bought of tachycardia while on it but, it absolutely control my heart rate. I recently had to get a new cardiologist due to moving to a new state and he had me do another event monitor for 30 days and try to wean off toprol to see if episodes of psvt came back - i was terribly symptomatic without it - I also have EDS and my dx for dysautonomia came before starting an any meds at all - I think it depends on your individual case - i dont think there is any blanket statement that applies to this crazy disease!

i take midodrine on and off because I have orthostatic hypotension and labile hypertension - i end up taking my bp to decide what to do - I would absolutely agree that it helps with my ability to think - today my bp was low and i struggle tremendously to get out the door to work - i almost backed into the closed garage door! i am super crabby right now about things...but am grateful for the midodrine!

this is all so interesting - I have not been diagnosed with hyperandrenergic POTS but seems like some of it applies - i.e. high bp on standing only at times - mixed with hx of PSVT and the vasospasms - i moved recently and started over with a new cardiologist who seems genuine and helpful and was happy to have all my records to review - he suggested an event monitor for 30 days which I also did 5 years ago when i first got diagnosed. I have slowly titrated off toprol XL and I feel like crap - more than usual - he wants to see my underlying rhythm which i respect - also to see if the BB affected my BP whic it does not - it is as low as ever off he BB - it all frustrates me really...

Eligiamore wondering how u got that specific of a dx? I have similar issues and everyone just seems perplexed... went to Cleveland clinic and had event there... ms tell me how the meds work am gaunt each other but don't have any better suggestions to treat the sx...

Looking for input... have he of psvt and EDS and autonomic dysfunction. .. cardiologist wants to wean me off toprol and see if psvt comes back and if so use ablation to control I. Order to get off meds... any advice?

gjenson i agree the "too much" remains a mystery... i tend to do too much and pay the price...can't seem to help it... nitro is a potent vasodilator so it is good to have on hand - I also take 81 mg of aspirin daily which everyone agrees is a must.... the issues all in all are like moving targets and I keep my same medication routine so as not too further confuse my body! Norvasc of all meds made a huge difference in the amount of CP I was having - I recommend it for this problem in particular...

i have this diagnosis as well. I causes intense chest pain ( inverted t waves on EKG) and I have also had episodes where I felt like my heart and throat were being squeezed and a intense burning sensation along with it - my dx came from a tilt table at cleveland clinic when I was there for testing and acute EKG changes caused them to stop test and call a cardiac rapid response.... talk about embarrassing! in any case, i started on norvasc after that and it helps a bit but it does not prevent all episodes. I find the more stress I am under the more likely this is to happen. The cardiologist i see brow beat me until I quit taking midodrine - she insisted that the moddrine and norvasc where at odds. My understanding of midodrine is that is acts on peripheral vessels - ( I have considerable blood pooling) - in any case, even not taking midodrine I still get CP on and off - I have rx for nitro just in case... you should be as proactive as possible to avoid stress - careful with exercise - drink enough fluids etc...

is he not at Rush anymore? I saw him there last fall - he definitely gets it but had nothing new or helpful to offer me ( already have dx and on meds...) could not offer anything more than what I was already doing - said I was in worst possible profession for this disease (RN) - and to expect and accept episodes of complete bedrest - nothing you can do so do not feel bad about it...

i am moving from chicago to WI in the coming months - i am at a loos for switching Drs - I found that Chelimsky is in milwaukee area but his schedule is on hold - i need a primary and then anyone who knows about OI etc and I am hoping to find a decent cardiologist... Anyone know anything? Ty!

question re: palpitations... does anyone get the kind where it feel like there is fluttering and you spontaneously cough?? it has happened for some time but, getting more and more pronounced.... i never know when to pay attention or ignore things - any insight? ty!