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Everything posted by Steph2397

  1. I would be careful with Ativan. I haven't taken it myself, so I'm not an expert, but Hospice gives this to my 95-year-old dying grandmother to calm her down because they know it won't matter if it messes up her body anyway, she just needs to be comfortable. It's really strong and knocks her right out. I would definitely consult a few doctors on this before you try.
  2. @cherichair19 Hi Charity, I'm sorry to hear what you've been through that sounds rough. I'm not an expert on medications since I try to avoid them, but my cardiologist said some of them could cause lower heart rate over time and make me feel worse if I have an adverse reaction. Even supplements like Magnesium can cause that, it did it to me. My heart rate was in the 40's once and I was lying down but I felt awful. Maybe that's it? I also don't know why they recommended wine. Alcohol is the worst for POTS and Mast Cell from what I've heard. One question: what were your symptoms for Mast C
  3. @Caty have you looked into testing for other autoimmune diseases? Not to say that you have one, but they could be contributing to your problems. I used to have the tachycardia issue when I first laid down at night, but I was able to calm down after a few weeks of checking my pulse obsessively and realize that it goes back to normal after a few minutes if I calm down. I also get the acid reflux issue, but it often makes my throat tight. Have you done a tilt table test or autoneuro test? I suggest you do those even if your heart doc says your heart is OK. My heart was fine on all board (EKG, Ec
  4. @bombsh3ll yes! It’s called Plasticity Brain centers in Orlando. It’s the only one of it’s kind in the world so if you google that it’ll come up! People travel from all over to go. They treat all kinds of patients including stroke, MS, autism, dementia, concussions and POTS too! They create a unique treatment based off of every patient and it’s all very personal and all natural no invasive examinations or medications. They can’t help every POTS patient, it depends on what causes the POTS, but I thought my POTS wouldn’t work with this treatment but it worked for me!
  5. @bombsh3ll I understand your caution. This is why I'm asking, because I am a very cautious person and I would hate to mess anything up. My POTS does not usually cause intense fatigue, so I don't necessarily need coffee it's just the act of drinking it and the taste that I miss. I will also need it when I return to my normal life and can't rest as much. Also, I know I don't know your story, but I wouldn't lose hope on recovering from POTS! It's chronic but so many people tell me they get to almost normal even if it takes years. I am not fully recovered, but I am trying everything I can to get b
  6. Thank you @KiminOrlando, decaf was something I didn't consider. I don't mean to be nosy, but I notice that your tag says Kim in Orlando. One of the reasons my POTS is starting to clear up so quickly is the fact that I went to a brain center in Orlando. They help a lot of POTS patients (but say that they can't always treat them, it depends on what causes the POTS). I was wary at first because my autoneuro test from Mayo said I had no evidence of dysfunction in my autonomic nervous system, but the brain center found plenty of things wrong with my brain that I didn't know about. I still have some
  7. I never really drank coffee until I was 18, and even then I only had one cup a day if that, sometimes two if I needed it. However, once I realized it made me feel awful and I thought it caused my anxiety episodes (before I knew that these episodes were POTS) I only drank it once or twice a week and eventually stopped it all. Now, after a few months, my POTS is way better and is on the way to being almost gone which is a miracle, but I do still have a long road of building my body up to exercise and be back to normal functioning. I was wondering if anyone who has gotten a little better wi
  8. @aaronh819 My eyes were really bothering me for the first few weeks of my diagnosis and one day I feared that I would lose vision in my left eye as it felt so weak, slow and blurry. My left eye would hurt badly and my eyes would suddenly become sensitive to light. I would feel like I had just studied for 10 hours when all I did was watch tv for a few. I also had TERRIBLE head pressure, I thought I had brain tumors. My eye symptoms went away for a few weeks, but my other symptoms persisted and got worse. I forgot about my eyes and thought they were all fine. Then, I went to a brain center and t
  9. I started noticing this when I was first diagnosed with POTS a few months ago too. I also felt like I would get more nervous with loud noises and crowds, like I was stuck in fight or flight mode and it would send me into a confused state of panic. My heart would pound and I would feel like I was about to give a presentation in class, just with loud noises and crowds. My holistic chiropractor said that my adrenal glands were off which was probably raising my cortisol levels turning it into a vicious cycle. She recommended I take a supplement called DSF, and I can tell you it really helped me. M
  10. @dnet let me know if this diet is working for you! I am interested to see if it improves your condition because I am willing to try almost anything (except drugs to help), I'm more on the natural side of things.
  11. @StayAtHomeMom thank you for letting me know, this makes me feel a little better. It does help when I drink water while eating too. I will get it checked out, but it's good to know I'm not alone!
  12. Hi Pistol, yes I am afraid to eat and I’m aware it’s a problem. I’m trying to slowly introduce foods back into my diet, but it’s hard. I am hoping to see a MCAS specialist while I’m out of town next week, and hopefully get a lot more blood work done. I was just wondering if anyone else with POTS has these symptoms but it’s something else, not MCAS? I want to see what other things I can get checked out.
  13. hi everyone! I was dxed with POTS about a month ago, and the diagnosis was confirmed at Mayo last week. My symptoms are rapid heart rate when standing, lightheadedness, head pressure, neck aches, chest pain, chest tightness, shortness of breath and occasional palipitations. A new symptom that slowly cropped up and became bad last week and became consistent was throat tightness which can occur at any time but gets worse with eating and sometimes drinking.I started doing more research and I fear I may have MCAS and i basically feel that I have a reaction every time I eat. The worst th
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