#who referred me to a cardiologist who did a holter monitor

[normal-with-adhd-is-a-joke]

If you are hungry and need to shower, and you have CFS and/or inappropriate sinus tachycardia, always prioritize food over clean. In addition, do not sit down on the shower floor for a little break, that is the devil speaking, you will momentarily lose vision when you stand up causing you to feel even more faint than before. I will not be following my own advice and I will be almost passing out in the shower again in the near future

[heather-lee-health]

first appointment with Dr. Kshatriya

August 24

Dr. Kshatriya is the cardiologist Dr. Clouse referred me to, and I had my first appointment with her today.

She and the nurses who worked with us today are AWESOME.

Today, we did an electrocardiogram (EKG), an echocardiogram (heart sonogram), and a orthostatic blood pressure test, and I am wearing a Holter monitor (portable EKG monitor that continuously records the heart's activity) until tomorrow. I will also be doing a tilt table test; Dr. Kshatriya's nurse is scheduling it with the hospital.

So here's the gist of what's going on with my heart: Dr. Kshatriya believes that I have neurocardiogenic syncope. She's very confident about it. My blood pressure is low to begin with, apparently, and when I stand, it drops, which causes my heart rate to rise. My echo showed low heart function, but nothing critical (I'm using that word in a medical sense).

She's having me wear the Holter monitor to make sure that there's nothing else coming into play, such as an arrhythmia. Then we will be doing the tilt table test to judge the severity of the issue I have maintaining blood pressure when I am upright. If we don't find that anything else is wrong, Dr. Kshatriya says that we can treat the neurocardiogenic syncope with medication and salt, and see how many of my many symptoms improve. And that will give us an idea of what, if anything, we'll need to do next.

Mayo Clinic is still in the realm of possibilities, but treating NCS may help us significantly narrow things down and isolate remaining problems. And if Dr. Clouse continues to refer me to local doctors as responsive and aware as Dr. Kshatriya, we could be sitting pretty not long from now. So we'll see what happens.

As always, I will keep you posted about results and next steps.

Ta ta for now~

[lmactans]

In retrospect, that ruthless and selfish aspect of my personality is the only way I’ve ever made any progress with my health I’ve been sick since I was six, and it was only by demanding that the doctors listen to me and not just my parents, standing in front of doorways blocking exits and forcing them to assess and treat my complaints instead of shrugging their shoulders and leaving, and nagging doctors who wouldn’t refer me after reaching this point into doing so that I’ve ever been able to get treatment for any of my dozen or so chronic illnesses. If you’ve never been seriously ill, you’d be surprised by how little of an effort doctors make at even diagnosing you, let alone treating you if the first line of treatment fails. One doctor specifically told me that because of my demographic (mentally ill, AFAB, very young) I was making my problems up, and was told to seek psychological help, and that this doctor would not refer me to another physician. I called his office multiple times a day and showed up in person several times a week for two weeks until he finally relented and referred me to a doctor who DID successfully treat me, albeit with a method that *I* learned about on the internet and suggested. During the period before my dysautonomia diagnosis (which I only knew to suggest because of a friend on this site), I was dismissed by the ER doctor as merely being dehydrated, when I was showing all the classic signs of POTS, which I demonstrated by doing a poor man’s table tilt test for the doctors, and was told to stop monitoring my vitals because it was just making me anxious. My GP, who suggested that I go to the ER in the first place, later failed to address my situation OR refer me to another doctor, so I had to find one on my own. This doctor had decided upon reading my chart before meeting me that I was suffering from a medication side effect, but did a week long holter monitor test to be sure. Even though I was called multiple times a day by the monitoring service to tell me that my pulse was dangerously high and to lie down and rest, he thought that I was just a healthy young person who was on too many meds. He only did a tilt table test when I insisted that not only could the symptoms I’m describing not be caused by any of the medications I’m on, but that these symptoms came on nearly overnight with no change in medication or dosage. He arrived three hours late to my test because he had forgotten about me (his own admission), and then interpreted the data incorrectly, using blood pressure as the metric instead of pulse. He refused to refer me to another cardiologist or the nearby dysautonomia center because he said he knew it was my meds, and only referred me when my multiple daily calls began to annoy him. When I was examined by competent doctors, I had my dysautonomia/POTS diagnosis AND treatment in one hour long visit.  It took me FOURTEEN YEARS, dozens of medications, and more than eight psychiatrists giving up on me to get adequate treatment and full acknowledgement of my conditions. It took even more time and effort to get all of my physical illnesses diagnosed and treatment.