Struggling with Low Sodium and Health Management

I see a cardiologist regularly to help with my POTS. I tried the salt pills, compression socks, I’ve doubled my water intake but nothing seems to be helping. One minute I can be perfectly fine and the next I feel like I’m going to pass out. I can’t go out and do anything or make plans with anyone because I never know when I’m gonna get these “episodes”. I’m only 19 years old, and I have absolutely no quality of life. Everyday is a constant battle with not only my physical health but now my mental health. I’ve seen several different doctors and besides my normal cardiologist they all read me googled articles on my diagnosis… like I couldn’t do that from home. How do you guys cope with this? How do you guys explain to your friends and family that you’re trying your absolute hardest to be productive but this disease is so uncontrollable and the doctors lack the knowledge needed to efficiently help us. How do you live with pots, instead of just surviving?

Anyone with Diabetes Insipidus (DI) or anyone out there that has Complex Central DI? I am wondering what meds you take, What your struggles are? My struggle is with me forcing to drink a lot of water to make sure my sodium isn’t too high. (160’s been the highest for me) I also cannot lower sodium too fast bc once in the hospital, the nurses did with IV, and i was an 8 year old hallucinating, very scary. Average sodium is 155ish for a “normal” level. Major med i take is Desmopressin. Used to take nose spray but endocrinologist changed it to tablet to be more effective. I am on a bunch of other meds as well, but Desmo is one i NEED.

Could my doctors be missing something? I'm 20 and I have several ANS dysfunctions/disorders and autoimmune diseases, Since October of 2021 I've lost weight (138 lbs to 118), have become more fatigued, nauseous, bp did a flip from having to take high BP meds (propranolol) at a low dose for POTS to being unable to take them due to severe bp crashes, I eat as much as I can whenever I can but it never seems like enough. In this time Fram I was also diagnosed with a form of anemia related to B12 deficiency, but treating it with IM b12 injections hasn't made me feel better (a month later). Did a colonoscophy/ endoscopy and blood tests galore, gastro found nothing. my doctor put me off essential pain meds (duloxetine) to try to encourage me to eat more ei. every 2 hours or so (she was concerned about side effects of weight loss being from meds). Anyone have any ideas?