RunningWild

I am able to work, but I think I will continue to work even if my symptoms get worse. I can't afford to lose my job and my insurance- so I will do my best to continue to come in every day. The waking up early is rough- but for the most part, my daily work is not too stressful or hard on me. I black out almost everytime I get up from my desk to walk to the bathroom, but whatever. I wouldn't do well if I didn't have the minimal amount of social interaction that my job provides. I'm a needy person. haha

The appointment went well. I so wish my EP knew more about POTS, because he is one of the most caring doctors I have ever met in my life. I told him I have been feeling like crap lately, had some passout spells, and that I just need some help because my day-to-day life is beginning to seriously suffer. He looked at me and told me he understands how frustrated I must be, and that he wishes he had a magical pill for me to take and feel better. While that's not the case, he did offer some other options: He has prescribed Midodrine since the Florinef didn't work. I can't afford to pick it up until I get paid, so I will give it a try later this week. He also gave me a referral for Cleveland Clinic so I can make an apointment there (I have seen their doctors on Dinet's list) So once my insurance changes over on Jan1, I will see what I can do about that. I guess I'm just a little bit ... skiddish? I know I've been dx'd with POTS, and that the symptoms are all there- but what if I get to Cleveland Clinic and they tell me that I'm fine? That all this stuff is in my head? I can't keep going through that. Three days sitting next to my bf in the hospital when they basically said the same thing- its not fun. blaaaah. Thanks for welcoming me to the boards. I know I'll find a ton of support here, and hope I can be helpful to some of you as well.

Is probably becoming THE most annoying phrase, ever. My PCP: "We all feel like crap sometimes. You'll get over it" A friend(?): "Get over it already, take a vitamin" And probably coming soon from my boyfriend: "I'm over it"... Blah blah blah. Don't these people understand that if it was that easy, I would have done it already? Hello to all my fellow sufferers. I'm new to posting, and new to the concept of POTS, but I guess I'll be here awhile. Let me share my story (very long winded). I was born almost 23 years ago with some health issues. Congenital heart defects. My mom was afraid I wouldn't make it. -Patent Ductus -Pulmonary Stenosis I had the PDA fixed when I was one, and had the Pulmonary Stenosis monitored until I was 16 or so. When I was a teenager, I was morbidly obese...My cardiologist at that time had blamed any and all of my complaints on my weight. "You're fat" he said, to a 16 year old girl. Wow. Fast forward a couple of years...I had gone to college, lost 100 pounds, and began running regularly. I loved it. I finally felt healthy. In May 2011, I ran a half marathon with my mom. It was one of the most rewarding experiences of my life. >>>>>>>Here is where everything went downhill. After the half marathon, I never really felt like I recovered. When I went back to running, I felt like I could never catch my breath. My heart would RACE even at a slow jog. This was not normal. I began lifting weights to get some form of exercise. By September, I had seen my PCP for what I thought was a sinus problem. I told him I was constantly tired, I had passed out while walking up my basement stairs, and that I was having a hard time breathing. He asked about the old heart problems which I hadn't had looked at since I was 16. He then sent me for a Pulmonary Function Test, an Echo, some XRays, and bloodwork. The results: -Anemia -Asthma (?) -Hole in my heart (?) Upon follow up with my PCP, I had notified him that I was having severe headaches with visual disturbances- I would go blind in one eye. He immediately had me admitted to the hospital because he thought I was passing clots. After speaking with multiple doctors- this was a wild assumption. After 3 days in the hospital, and a battery of tests, I got the following results: -Iron Deficiency Anemia (which is now slight iron deficiency, but no anemia) -Patent Foramen Ovale, with Atrial Septal Aneurysm -Exercise induced asthma (they assure me this is the case, due to hyperventilation during stress test) -Various findings related to pre-existing Pulmonary Stenosis -POTS (?) I followed up with an electrophysiologist that I had seen in the hospital, and he had me wear an event monitor. He assured me after two weeks that he was not seeing anything out of the ordinary. I asked him about the occaisions where my heart would race beyond 200bpm. He says this is normal for a young person like me. I disagreed when it occurred while walking up a flight of stairs. I had a TTT three weeks ago, and it tested positive. At this point, another EP had been overseeing my test while my Dr. was in clinic. He told me "I really don't know much about this syndrome. But I will treat it the way other doctors treat it." He sent me home with .1mg Florinef per day. After 1 week, I was still blacking out constantly and still had a racing heart. The inhaler slightly improved my breathing, but made my heart race more. I quickly developed the worst muscle pains of my life. It felt like I had been hit by a truck every morning when I woke up. I was swollen all over. It hurt to move at all. I went to the ER and was told I had slight hypokalemia, but mostly they just pulled me off the Florinef and told me to follow up with my EP. That's where I am today. I have an appointment with my EP at 9am. I'm pretty much convinced that it will be a waste of my time. That he won't take my concerns seriously. That he won't discuss other possibilities with me. I'm so sick of being brushed off. Anyway, here is my latest list of concerns: -Everlasting headache that gets worse or stays the same. Never goes away. -Mental issues. Having a hard time finding words when I'm at work. Fuzzy mind. -Spasms, tinglies, numbness -Horrible exhaustion, but I can't sleep. Tired when I wake up -Anxiety -Still passing out (twice) and blacking out (daily) I wish I could just get over it.