Once I finally got in to see my EP (took forever, had to wait BEYOND my originally scheduled appointment for my rescheduled one (as with all my reschedules there, it was because THEY had to reschedule, not me) to start on the recommendations from Vandy. I'd called a couple times asking if he would call something in for me so I could be trying it and then if it was going well/not helping, by the time we got to my appointment, I'd have already TRIED something on the list. No dice. And this summer got hot. Too hot, too fast. Big Daddy bought me a Frogg Togg Chilly Towel (the one linked). I love it. I even activated it once with super hot water and it still got really cool. It is definitely worth the price. I'm not a huge fan of the material it uses but I guess that's how it works? You can definitely tell it's not a "towel" or plain fabric but overall, when I'm sweating, dizzy and my heart rate is going crazy, I can deal with the rubbary feel. My only complaints are really cosmetic, the feel and the one I got has a zebra print and the print faded. I liked it so much I gushed to Big Daddy and he had his boss go out and buy several for the paving crews (obviously not the pink ones). They are so handy, especially this summer where I was basically unmedicated for my Dysautonomia. I was really struggling. (Disclaimer: this is not an official review, just me gushing, I did not receive anything for gushing).
Finally got into my appointment and Dr. M called in a couple of the meds on the list, Propranolol and Aldomet. It's not perfect but it helps a LOT more than all the other meds I've tried over the years. I like propranolol MUCH better than atenolol. It helps so much more. Watching my heart rate be somewhat NORMAL and not having to struggle AS much while doing things is awesome. I'm not so sure how affective the other has been but my heart rate is loving it.
My eyes have been bothering me more and more for a while now, I may or may not have mentioned it, but I went to an opthamologist several weeks ago. My vision is perfect/near perfect. 20/15 in one eye and 20/20 in the other. I'm thinking it would've been 20/15 in both if not for the blurring/photosensitivity. (As I'm typing this in a darkened room, I can barely see, so please excuse typos). I believe this one is brought about by an aura preceeding a migraine so I've taken meds to try and head it off. The Opthamologist, Dr. C, said a lot of it is dryness which could be caused by Sjogren's (which at that point, I had not been tested for). She told me to try *polarized* sunglasses instead of regular which helps a bit, and increase my use of eye drops from PRN to no less than 3x per day. Which also helps. Then she put something called a Punctal Plug in my left tear duct to try and prolong how long I hold my natural tears. If I see improvement she'll do the right side. I'm not sure how I feel yet (it's only been 2 days so far). She also ran the panel for Sjogren's because none of my other doctors would since they don't treat it. And mentioned having some kind of adrenal test. She referred me to an internist to coordinate all my doctors/diagnosis since problems like this arise. All these disorders are treated by different doctors and they have comorbid conditions that need yet another doctor. I have to basically fill out a request to see if one of the internists will accept me as a patient.
So lets do a run through.
Neurocardiogenic Syncope (NCS)
Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (Hyper POTS)
Insulin Resistance Polycystic Ovarian Syndrome (IR PCOS)
Inappropriate Sinus Tachycardia (IST - which I believe is replaced by the POTS dx?)
Premenstrual Dysphoric Disorder (PMDD)
Migraines with and without aura
PACs and PVCs
Benign Paroxysmal Positional Vertigo (BPPV)
Allergies (seasonal, food, environment, some anaphylactic)
*Adrenal problems also makes since because HyperADRENERGIC POTS, plus lots of Hashi patients also have adrenal fatigue. But again, none of my current doctors want to test for it.
Just keep swimming.