Holly B Posted August 16, 2015 Report Share Posted August 16, 2015 I was recently diagnosed with POTS and have had a very rough summer. Some of my symptoms (GI, tachycardia, lightheadedness) are improving; however, for the last week and a half, I frequently feel like I can't catch my breath, or like I don't have enough air and I am yawning a lot. Its uncomfortable. I just saw a POTS specialist last week, but there is some more testing that I need to do. While I said I was struggling with this symptom, there wasn't any real suggestion as to what to do about it. I am on Florinef 0.05 mg once a day and just started citalopram last thursday at 5 mg once a day. I was on metoprolol and thought that was causing the trouble breathing, because it started a few days after I started the beta blocker, but I have been off of it this weekend to do another holter monitor. Any recommendations for what I can do to improve this respiratory symptom? Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 16, 2015 Report Share Posted August 16, 2015 Hi Holly,Feeling this way is not unusual for POTS. Unfortunately, I think the doctors don't give clear answers on this because there aren't great answers. The best explanation I've heard for why it potentially happens is that some POTS patients may experience thoracic perfusion due to blood pooling in our lower extremities. It also may have something to do with your underlying cause. For example, I have mast cell activation syndrome (MCAS) which makes me feel short of breathe....actually, like it takes an effort to get a deep breathe and like I'm not getting enough oxygen even though the reality is I can fully inflate/deflate my lungs and my oxygen saturation is always fine.Humidity, carrying things out in front of me like a laundry basket, tasks that involve bending or squatting, and stairs seem to be my worst triggers. On humid days I need to keep my house cooler and stay indoors as much as possible. I've learned to modify tasks such as using a laundry bag that has a shoulder strap to make these types of tasks easier. I keep a reusable grocery bag at the top and bottom of the steps so I can put things in there that need to go up or down so I minimize trips up and down because I forget things. I do sometimes have to take a dose of benadryl when I feel like I am having a mast cell reaction. Finally, I do as much exercise/physical activity as I can to try to avoid deconditioning. There have been a few times through the POTS years when I haven't been able to manage exercise and it definitely affects my feeling of shortness of breathe. Quote Link to comment Share on other sites More sharing options...
Holly B Posted August 17, 2015 Author Report Share Posted August 17, 2015 Thank you for your response! This is so frustrating!! I am doing a 24 hour urine collection for histamine today. What do you feel like when you are having a mast cell reaction? Does the benadryl help you breathe more easily/comfortably? Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 17, 2015 Report Share Posted August 17, 2015 Personally, I have severe nausea, sometimes diarrhea, abdominal cramping, I feel like an elephant is sitting on my chest, various hives and rashes, itchy without rashes at times, dizzy, disoriented, brain fog. The benedryl does help some. I take an H1 and H2 histamine daily plus prednisone daily. Benedryl and/or Phenergan as add on as needed.It is very difficult to diagnose mcas. Here is a very comprehensive paper on it. Especially read the "figures", if you choose to read it. http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.