Hello everyone! This is my 1st post and I hope it will bring me a lot of insight into our condition. According to this one study I found on Dinet.org, Shortness of breath is a symptom of 27.6 % (Grubb, 2000). So it seems pretty common. This is my chief symptom and my scariest one, so I hope I get a lot of responses because I want to put together a list of who has this symptom, what type of POTS they have (i.e. Hyperadrenic, Neuropathic, etc..), what underlying cause they are aware of for POTS or the shortness of breathe (if they feel its separate) and what medications are working for this symptom. If you want skip my story straight to the bottom 3 questions Here's my POTS breathing problems story. In 2005 I has pretty normal and healthy. I had decided that after years of inactivity (because of lower back injury in High School while playing tennis) I would start to get back in shape and I started biking long distance. After the spring, summer and fall of 2005 I could just about bike 20-30 miles. I was feeling great about myself. In the winter of 2005 I got food poisoning from chicken and then a stomach flu in December of 2005. I lost a little weight but recovered. Then I decided to paint the basement where I had been renting an apartment so I could move some exercise equipment downstairs to make more room in other parts of the apartment. Big mistake, i painted myself and the room was not well ventilated and I used a thick special paint to coat the cinder blocks with. 2 weeks after the painting I decided that it was too cold to bike so I would try my new treadmill. I started running and after 5 minutes I noticed my pulse went up to 190, and I was way too overheated even with drinking water and then all of a sudden I couldn't breath. I instinctively ran outside took off my shirt to cool off in the freezing weather and it worked to help my breathing. Then about 2 weeks later it snowed and so I dressed very warm and was excited to start shoveling (it was pretty outside). I started shoveling very fast and again found that I was super overheated and could not breath, so I had to undress in the snow and again that saved me. At this point I knew something wasn't right but I ignored it again. one week later I went to bed late, a little dehydrated and I woke up 3 hours later with my pulse racing and I found it hard to breath. I took a shower and it didnt help. That was my 1st trip to the ER. In the ER they gave me Albuterol nebulizer and tested my heart. My heart rate was 150-160 initially and for 24 hours would not drop below 120. Wow I was scared and worried. After 20 hours they gave me a Xanax I passed out from exhaustion and they said while I slept my heart rate was 80-90. But when I woke up it was back to 110+ and still not breathing great, but they sent me packing with some Xanax. I got home and then 4 hours later went to a different ER. Same thing another 24 hours they sent we walking having me thinking it was anxiety. But along with the heart racing and breathing, I was completely disabled and fatigued with chest weakness for 3 weeks+. I went to a Cardiologist, he didnt find much besides the racing heart after all the typical cardio tests. I saw a shrink didnt do much, he actually fell asleep during one sessions haha. Then about 4 weeks after the attack my breathing was still suffering so I saw a Pulmonologist. He told me the tachycardia was because of Albuterol and that I should switch to Xopanex. He gave me a powdered inhaled steroid (Asmanex) and tried me on Singulair. I wasn't feeling any better so he told me to keep increasing my Asmanex until it works. I upped it from once a day to 4 times a day. It was a miracle, It started working and I recovered. I hadn't had a major attack until January of this year and if my breathing acted up I would just take Asmanex. I stopped Singulair after 6 months and i would carry around the Xopanex but never use it because I didnt want the tachycardia. Fast forward to this year. I've had 6-7 attacks, mainly walking to the train from 10 blocks away. The first two helped me to lose my last job. The last two are what helped me diagnose myself with POTS. I ended up in the ER 5 weeks ago, my Asmanex wasn't helping or at least enough, so I finally used 2 puffs of the Xopanex (which irritated my trachea) and both were not helping. I was driving, and the nearest hospital was 20 minutes. I willed myself to get there and almost passed out a few times. When I got there, I was very tachy and my breathing was like breath hunger. My oxygen level was good. They treated me for asthma. But everyone thought I was crazy. I felt like an elephant was sitting on me I could barely move. After two days they basically kicked me out. I went home and my body shut down, it was scary. I researched and researched. I got an oximeter. After a week of doing breathing flow meter readings I stared to write down my pulse. I thought I had IST but then I realized the huge differences in pulse in positions. Yup like many of us I figured it out on my own, then I made a POTS specialist appointment and the Dr. confirmed it for me, but that same day I wore myself out at this new job 2 hours away and ended up in the ER 1 week ago. Back to my Post subject. So I have tons of POTS symptoms, but now I'm on the hunt for something that will help me especially with breathing. My breathing is worsened by heat, walking, walking upstairs (I'm trapped on my 3rd floor walk up apartment), fatigue (especially at night), dehydration, stress, Allergies (for the first time I counldn't breath after touching a dog, I grew up with a dog and cat and never happened before, I'm a big animal lover), GERD and exercise. Right now I'm taking 6 Asmanex inhales a day (doesn't help that much), I started Singulair again (1 week so far), And Prednisone from 5mg-30mg (that seems to help the most but gives me really bad acid reflux and makes my breathing worse. I'm taking Nexium and Zantec to help with that). I take B-12 1000mg for fatigue (helps a little). If I have really bad breathing I take Xopanex nebulizer (it helps a little not not completely, but gives me tremers , makes me lightheaded but only makes my heart beat go up 10-15, that's another reason I learned I had POTS, it doesnt make me as tachy for that long as the pulmonologist said). I'm going to find a top Pulmonologist to look for COPD, ILD, Sarcodosis, and Lung Caner and an Allergist for mast Cell disease. Maybe check out my Liver which could affect breathing. If anyone has any of these can you let me know your story. I've read that some of these can cause POTS.. Can everyone list: What type of POTS do you have (i.e. Hyperadrenic, Neuropathic, etc..)? What underlying cause are you aware of for your POTS or the shortness of breathe? What Medication are working for this symptom? Thank you everyone! Rich
