Angelika_23

Don't get me wrong - Covid was awful. I never want to do that again. I think I had ALL the possible symptoms, but the worst for me was the agonizing body aches that made me cry, followed by the 3 days of shortness of breath and low O2 sats (90 - 93). I was terrified I was going to end up in the hospital but I didn't. I took Mucinex religiously, used an incentive spirometer, and my friend insisted I drink Liquid IV often and I think those things made a huge difference. I had a cough for a few weeks and it took a while for my taste/smell to come back but other than that no lasting after-effects. I feel profoundly grateful. As soon as I tested positive I was terrified and anxious. I am so glad I got through it ok, and while it was awful, it wasn't affected by POTS and vice-versa. Just wanted to share my experience. I felt so alone at the time, it was a horrible two weeks. I hope this helps someone.

I don't know if you've thought about this option, but have you seen a chiropractor? I was having those horrible base of the skull headaches. I was nauseated and dizzy with them and light hurt my eyes. I regularly see a chiropractor for my back. (He's aware of my POTS and Chiari.) I told him about my horrible headaches and he was able to mostly make them go away. I only have about one bad headache per month now instead of almost daily. Anyway, that's something to think about. Good Luck!

Thank you for the reply! I had the blood test yesterday morning. Now I wait.

Hello, I've been having some trouble with POTS exacerbations, probably due to stomach issues. My gastroenterologist ordered a colonoscopy and the biopsy indicated possible early Celiac disease. I am getting a blood test tomorrow to test for Celiac disease. I am wondering if any other POTS person has had any experience with this? Thanks!

My incision started bleeding last night. My left leg is really hurting too. I saw my Dr. today, and he put me on an extra week of restriction. He also said my leg pain was due to a bruised nerve caused by surgery, and I just have to wait for it to heal. Nothing is ever simple. Ugh.

I put the stockings on this morning. OMG that hurt! Probably wasn't my best idea ever. I am waiting on a call from my doctor anyway because one side of my (large!) incision is still leaking clear fluid. I need to make sure that is ok. I wonder when I will be able to sit or stand again without pain?

I thought about that, but I'm afraid I'll rip my stitches getting them on! I guess I could try it and if it's too hard then stop. Thanks Katybug!

I get this, and I have Klonopin for it. It really helps when I have adrenaline rushes too. I generally only take Klonopin in the morning, but sometimes I need it at night too, for this reason.

Hello, Completely by accident, my doctors found out I was severely anemic. After a little investigation and a trip to my OB/GYN, we had the answer. I needed surgery and I was terrified to the point of being physically ill. So, last week I had a hysterectomy. It was supposed to be a vaginal hysterectomy, but my uterus was too enlarged so they had to cut me open. I was so worried about anesthesia and how it would affect me. The surgery actually went pretty well (other than having to cut me open). My POTS didn't act up too much at the hospital, thank goodness. The only issue I was aware of was my oxygen sats took about 24 hours to improve to where I could be off oxygen. Now I am at home, and I am having hot flashes and my ankles and feet are swelling. My doctor feels the swelling is because I was on my feet too much the past two days. I guess I might have been, but only because they scared me by saying if I layed around then I might get blood clots. I was determined to NOT get blood clots. I was either up walking or sitting upright in a chair (with my feet down.) I was off my midodrine while in the hospital, do you think that is why I might be swelling now? 5 days post op? I have stayed in bed mostly today, have restarted my midodrine, and the swelling is better but not gone. I was hoping to get through this without any major problems. I am still hurting and still taking pain medication religiously. I have a cough, which is really making my abdominal area agonizing at times. So now I am trying to find the delicate balance between up and down. No swelling, and no blood clots either. I would welcome any suggestions. Angela

You should probably be wearing compression stockings. I wore them religiously for a long time, but over the summer I really wanted to wear flip-flops. I got out of the habit of wearing my hose, and last week I took a good look at my legs and I'm getting varicose veins. My veins are also protruding out on my legs like blue cords. I'm back to wearing the hose.

I take 12.5 Metoprolol twice a day. It is very helpful.

It took 7 years for me to get a diagnosis. No one knew what was wrong. In 2007, I was admitted to the hospital and out of sheer luck, my doctor had just been to a seminar by Dr. Grubb. Because of that seminar the day before, she gave my mysterious illness a name. I wasn't crazy and I didn't have anxiety. I was so relieved. I had validation. Even my husband had started doubting that I was really sick. Unfortunately, she put me on Cardizem upon discharge, which made me infinitely worse. That was a bad couple of days.

I take 12.5 Metoprolol twice a day. It definitely helps. At first they tried me on Cardizem and it made me soooo much worse. Different things work for different people - good luck!

It can get better, even if you're not so young. I got POTS in my 30's and now (seven years later) I am starting to feel better and function more normally. I'm not back to dancing yet, but I think it's definitely in the future as long as I'm careful.

Thanks everyone! Bigskyfam, my meds are on my signature. Those are what I take daily. I should exercise regularly, but being a mom of three and being busy cuts into that, plus trying to work a little. I honestly believe what Dr. Grubb said about it receding over time, and I think I needed to give my body time to rest. It's been a long time, and I can't say I was patient at all in the beginning. This illness did teach me some valuable lessons; I learned to let go and not try to control so much. I still get funny heartbeats at times, and I still have days where I am more down than up, but I am getting back some sense of a normalcy that hasn't been there in years. My biggest problem now is dieting (I am one of the few overweight potsies) and getting enough salt. Dieting and salt don't go well together and I can definitely tell when I am low on salt. I've lost about 20 lbs (yay!) and I still have a lot to go. Thanks again for all the support everyone!