Dec 20, 2008
I'm on a mission to get this word out. I had a cardiac arrest in May 2008. I'm ok now but not fine. I did not have any disease in my heart ( no heart attack, no clot, no valve problem, no stent to place or vessel to by-pass) but a rather new to medicine diagnosis of severe cardiac endothelial microvascular dysfunction otherwise know as cardiac syndrome X. After 2 ½ years of problems ( mainly shortness of breath on exertion) and after many interventions and tests which were all negative, including two left and right cardiac caths, I was referred to Emory University Hospital interventional cardiology. I underwent another cath as a way of a diagnosis by exclusion. They were pretty confident of the diagnosis they were to confirm. In the process of testing ( which consisted of adenosine, then recovery/opening with acetylcholine) I arrested and it took them a couple of minutes to get me back. I was awake/conscious for most it and was even pleased when the docs were able to reproduce my symptoms! Unfortunately the recovery drug just didn't work therefore the confirmation of cardiac microvascular dysfunction. Emory, Mayo and U-FL,all researchers working on the same NIH study protocol for this dysfunction had not seen a case so severe. Needless to say a rough few days at Emory until they got my meds correct..............loads of IV nitro.
I had been quite a mess since January 2008, but could never say I was ill or sick, just plain short of air to the point of losing my ability to sustain speech. Lots of chest tightness, angina like pain and coronary spasms. I am thrilled that this thing has finally got a name and that I am on the best treatment for me. Altho' the prognosis is fairly good with aggressive nitro I realize that this may be as good as it gets....... this is very debilitating. Because these microvascular vessels do not dilate when they should (from exertion-any type) I must keep continued excellent control of lipids as any blockages of these vessels would not be good. Plus I am quite dependent on nitro patches 24/7. I am no longer in pain, have no shortness of breath unless I reach some level of exertion, rare coronary spasms, mild to moderate chest pressure and occasional chest tightness that requires nitro SL in addition to the 24/7 three 0.4 mg nitro patchs I need to wear. My heart and other body parts are extremely healthy. I have my moments where silly minimal exertion brings on chest tightness and slams me up against the wall! It's all about exertion and stressors.
To my women friends-pay attention to your symptoms and keep written track of them. To doctors in primary care and speciality care, consider this diagnosis in your patients when otherwise healthy people present with vague cardiac type complaints but always shortness of breath and chest tightness with exertion. My doctors have been just been puzzled by my consistent, persistent, and well articulated complaints. This thing is not real rare, just difficult to diagnose therefore uncommon. It is not defined within any race and seems to hit post- menopausal women. Researchers are looking for the 'why' while looking for a treatment. I'm glad it's 2008; if this had been several years ago the NIH protocol studies would not have been out there for researchers to concentrate on and I would certainly be in worst shape. I am the Poster Child at Emory for this dysfunction and the researchers are therefore learning a lot from my experience. I know this dysfunction well and like many other long term diagnoses this requires management. HUGE lifestyle changes. Emory and similar researchers do not know why this happens, if it is hereditary, viral or anything else at this point.
October 2009: This condition is getting progressively worse. Since Aug.1st 2009 I have had increasing episodes of chest tightening, vasospasm and chest pain only relieved by up to two sprays of nitro. In most episodes it is not brought on by physical exertion but by some other cardiac demand out of my control. The rare but familiar sharp, quick spasms that go up the heart to jaw and thru to the back I assume involve the LAD. The spasming in the microvessels seem to be the chest tightening and SOB that can accompany this. Still no research on this as to cause or treatment. I'm just happy that I pull out of these episodes, tho' very tired, with the nitro sprays. I am still wearing two 0.6mg patches daily 24/7.
February 2010: Now I'm up to 0.16mg daily nitro patch and two calcium channel blockers.There may be some nitro tolerance involved here but it's still the nitro that brings me out of the pain. The pain is assumed to be from the profuse spasms that I have, referred to as variant or vasospastic angina. It only occurs in the prescence of a tight feeling left chest. My ability to do any minimal exertion is very low.
To my readers: I do not want to instill fear or anxiety in anyone trying to figure out their symptoms. I am very outside anything close to what is being seen by doctors with patients with this microvessel involvement. So keep track of your signs and keep involved with your doctors and if you can, get to a large well known heart center; they are best when it comes to knowing about the odd cardiac things that are out there.