brigit2006

Thanks, Chaos, for the support. I do so hear you about living in the moment. It took me a long time to get over feeling sorry for myself to moving on to realizing that I am not rowing the boat. When I have the bad days I keep telling myself that they will end and I'll go back to being the other me. I've been keeping a journal and that's helped a lot to see that the seeming chaos of these attacks (just like chaos theory) eventually have a pattern, which is to have no pattern. teach1994

Hi: I'm a newbie but I hope you'll find this helpful. I get SOB often when I leave the house. I think some of it in my case is a panic attack about getting dizzy, etc. when I'm not in a safe place. However, I also have a lot of allergies and get reactions often from drugs. A couple of weeks ago I had a chemical stress test and ended up with hives everywhere and on Prednisone. My doctor and I think that the culprit may have been being stressed by the test that released histamine like crazy. At this point I would have to be convinced otherwise to submit to another stress test. I do believe that histamine release leads to SOB. I mean the POTS does as well, at least for me. Good luck with your allergies. It's so unfair to be allergic to Spring.

As a newbie, I'm taking the risk of opening a new topic and hope that's OK. I had no POTS or autonomic insufficiency history prior to having a left and right thoracotomy approach to strengthen a long fusion that I have from T6 to the sacrum. There was incidental nerve damage to my thoracic sympathetic nerves, which has left me with little communication between my spine and my adrenals. Is there anyone out there who has neurological damage as a result of surgery? I don't have any idea if developing POTS + overnight is different from having it come on gradually. It took a while to find a doctor who could see beyond the massive surgery to the problems I was having: dizziness every day that often kept me in bed most of the day trying repeatedly to get up. It got better some by later afternoons. Then my sodium was in the tank. I had tachycardia that hurt and I was so SOB it was almost impossible get up a flight of stairs. I also have abdominal pain and swelling from the waist down. For the last year + I've been on Florinef 0.1, nadolol 20mg. sodium chloride tabs, chicken boullion when I need a salt fix and lots of water. I have good weeks and bad weeks and don't see any reason why when my program stays the same. It drives me nuts that I can't make plans because I never know how I'll wake up. Will I be me who can get out bed and function (not as well as I used to but better than I was doing) or the not me who can't stand without dizziness and nausea. Now my interest says I have low thyroid tests. Is this common in POTS +? Help! The sudden onset threw me for months; I'm still trying to adjust to living with this. I welcome thoughts and comments from everyone.

Hi: I'm a newbie here. It was really interesting for me to see that there are a lot of POTS sufferers diagnosed over the age of 65, since I was diagnosed about 14 months ago. Actually, the POTS goes along with autonomic insufficiency in my case, caused by nerve damage during chest and back surgery. I'd love to know if people diagnosed at 65 or later find that doctors blame many of our symptoms on old age. It's true in my case, that plus they blame the aftereffects of the debilitating surgery. Thanks for asking this question and taking the survey. If nothing else, having these diseases certainly doesn't make life boring, just one more challenge to aging.

Hi: I have the same frustration with exercise and breathing. Sometimes I get on and off the treadmill and do short walks several times over the course of the day. Usually, though, I work up gradually to my target and just try to push through it. I adjust the speed down if I'm having trouble breathing. Sometimes this works; other times no. Actually, I have the added problem of needing to exercise because almost my whole spine has been fused; if I don't walk I get frozen. Guess my advice is to try pushing through and adjusting speed up and down. Maybe the target heart rate isn't as important as just walking, even if it's slower than you want. Hope this helps. bonnie

Igail: I too am a newbie and will be 71 next week. I was diagnosed almost 2 years ago with autonomic insufficiency and POTS. Mine began after extensive spinal and thoracic surgery where there were injuries to my thoracic sympathetic nerves. Once I was finally diagnosed I was put on Florinef, metoprolol, increased salt and water intake. I've recently been switched from the metoprolol to Nadolol and it works much better for me. I did not do well on attenolol. It may well be that it's more difficult to get docs to listen to symptoms of fatigue or even lightheadedness since they so often blame the symptoms on our age. I hope this helps you. Bonnie