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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
Oh..where to start... Let me start by saying I still really like this Immunologist. I think he is open minded and is a "healer" not just a doctor because someone gave him a license. Also, let me apologize, this is gonna be a long one. We talked for a long while. I spent half of that time with my head on his desk, leaving sweaty hand-prints, and fidgeting because I was having an acute attack of what ever this is that I have (I've decided POTS+ is a good name.). It was triggered by walking from the waiting room to his office (50 ft). I knew while waiting for him it was going to happen, I could feel it coming sitting in the waiting room. He did offer assistance but I told him we needed to keep going cause I was gonna run out of steam if we didn't. He asked what my goal is in seeing him and my answer was this, "I want to figure out if there is an underlying cause to my POTS and if there is, treat it the best we can in hopes of getting my life back." He said well, "Good! Well, POTS isn't a diagnosis...it's a syndrome and you can't have this many symptoms going on at one time without having at least one disease process going on, maybe more. We need to treat what we know and see what symptoms we eliminate so we can then see if we need to do more diagnostics." (He wasn't being a jerk about POTS, just saying that he thinks there is something more sinister causing the POTS.) He then said, "You definitely have environmental allergies, we have no question about that. You also have mast cell involvement, I am sure but we can't really prove it anyway. It's really not a separate issue as they are related and go hand in hand. We are going to put you on an H1 and an H2 antihistamine and immunotherapy and see where we can get you with that. Then, we will see what else we need to look into." There was a lot more conversation reviewing my history, my current meds, my familial links to allergy and auto immune. I couldn't think very straight so I didn't ask nearly as much as usual...just tried to answer his questions thoroughly. I asked what the official Dx is and he said POTS and atopic allergic rhinitus. (That's POTS and "severe hayfever"!) I also inquired about the issue someone brought up to me about the allergy shots with a beta blocker and he said that is correct and we will have to be extremely careful. So here's my issues: 1) If I do have mast cell issues, I would like that figured out and spelled out so future doctors, insurance co., and SSA take it seriously. I'm afrai they won't take "hayfever" very seriously. On the other hand, is that important or is it more important that he is basically treating for both possibilities and is really trying to get me better? Thoughts? 2) Here's my bloodwork and I don't really understand how it relates to the allergy vs. MCAD issues: IGa = 99 Normal = 81-463 IGg = 707 Normal = 694 - 1618 (No abnormalities in my IGg subclasses) IGm = 33 Normal = 48-271 ***Low*** Ige = 53 Normal = 0 - 114 No food allergies showed up even though we know I have clinical sensitivities. Basophils and Lymphocytes all at normal levels No natural immunity to pneomococcal infection Good immunity to tetanus toxoid Insight? 3) I am really scared to try these shots again because of the last time (and I usually have no fear abuot medical procedures.) I am torn between fear of it really going badly and the feeling of needing to try because I am not getting better on my current tx plan. What's a girl to do?