Relax86

I'm afraid this nightmare will never end. I'm usually a little afraid to go to sleep at night thinking that I will wake up having taken a giant step backwards the next day for some unknown reason that will never be figured out. Snakes. ~ ew. Also I'm afraid that I might miss the one post on this forum that will be my answer...

I was in total denial in 2009 but this 2012 bout pretty much put in right in my face. I'm with Chaos...when I have a decent day I actually believe this is over and the next day I'll be me. But symptoms inevitably return to some degree. I am not as sick as a lot of folks on this site which makes me feel guilty when I post. I actually feel like I'm going to get better...I really do. My only consideration this time is ..... when will it strike again, and how will I be able to come out of it the next time. I worry about the financial impact, the impact on my career, and mentally ... I just couldn't believe this happened to me. I was fairly convinced that death was a better option. I only hope that this site has helped me to prepare and cope....and also always dreaming that this is my last bout with POTS....again probably more denial :-)

My BP drops in the supine position - which is one of my main symptoms that makes starting my day so difficult. I wake up with 80/50 and tachy as my heart tries to push that blood to my head and organs. Staying hydrated helps, gets worse around my menstrual cycle. Before I go to sleep I take sea salt and swallow with Gatorade. It's been much better with that combo. Good luck

As with each new introduction it always seems like I have 2/3 of the same symptoms...we are all the same yet different. I have helped myself more thry finding this forum then most of my tests or Dr.s....The people here have done their homework/research and I have benefitted greatly from them. Good luck.. ~ Tracy

I open my eyes and hope this nightmare is over. Usually tachy, sometimes dizzy, sometimes SOB, urinary urgency but can't really hurry to P, I check BP which usually too low, I have the shakes but inside, not visible. I brush my teeth, beg God to save me, thank him for making me not the worst dysautonomia case....then get ready for work. :-)

You essentially just told my story -- different but the same. I have the same personality but not recently pregnant. I became sick around New Years and my entire life has changed. I did well not letting the anxiety get ahead of me and it sound like you did as well. The symptoms are so sudden, severe and worrisome it's so hard to not have concomitant anxiety. It nice that us Type A's usually know who we are....hehe...therefore not bullied into believing this is just an anxiety issue. I did not go thru as much testing to rule out the things that you did. Mostly because I'm not in a great location for medical care and I believed they would find me to be healthy or find vague things that would be inappropriately treated and make me worse. I'm doing better than most but still feel like I'm teetering between days of learning to live with this, hoping it will magically go away, and just plain giving up. I am amazed in the last 6 months how many more people are being diagnosed. This forum is full of very smart people, I think I've made some good decisions about my own care based on what I've learned here. Good luck in finding answers. I am sure you'll be able to start and complete nursing school. Will be watching for your success story. ~ Tracy

Rich ~ I have not been tested for pheochromocytoma. I was diagnosed with adrenal fatigue with just a conversation about symptoms by a women's health Doc that mixes some Eastern thought with traditional medicine. She originally prescribed me the Hydro. I was fine on 5mg 2x per day. I sought an endo who went ballistic that I was on it. He asked me to get off for 2 weeks then I had the test which ruled out Addisons. He told me he also found low aldosterone and renin but believed I skewed my own results....because of course I was just looking to be sick (insert sarcasm font). He told me that I didn't need an endo which was fine with me as he wouldn't have been my choice. He severely cautioned me about the use of the hydrocortisone; also saying that adrenal fatigue is an internet disease. I took his words about the misuse of hydrocortisone seriously and therefore attempted to d/c use. Within 3 weeks all my symptoms were returning and it was like I could do nothing about it. I'm day 4 on it and I feel nearly 90%. Which makes me not 100% sure I'm POTS but my symptoms are just so close to many people here. As far as adrenal insufficiency he seemed to believe the testing was black or white....Addisons or healthy. I have had an MRI with dye which was clear. I just wasn't it a good hospital and always wonder if something was missed. Using the cortisone alleviated my R inner ear pain and R neck spasms as well. I have this image of a small harmless mass on a nerve that's impacting me in a big way. I just feel crazy I guess. I believe that I'll get better but only due to this forum. So thanks for your thoughts and research.

Congrats & Good luck ~ I had to visit your profile and read all of your posts to see if there was something you did differently than me that I could include....as of course we are all searching for solutions. I was out of work from Jan to early Feb....returned 3 days/week until March and then up to 5 days per week. My days at work are better than the weekends and I think it's due to the fact that I need to move early in the morning and move my blood. I still have symptomatic days - actually - nearly every day but the conditioning of my job I believe is part of the solution. I'm a Physical Therapist and walking alot during the day. Anyway, congrats!!! I felt like my RTW was a super achievement in a time where I was uncertain about getting my life back.

I returned to a 5mg hydrocortisone this weekend due to breathing issues... it worked immediately. Stairs are terrible for me even when all other symptoms are quiet. I attempted to get off the hydro about 3 weeks ago feeling strong enough to try and be independently med free. My symptoms all slowly returned. I responded so quickly to getting back on the med that it makes me wonder if I really am POTS/Dysautonomia or something else. Although I realize this thing is an individual game I don't see anyone else on the forum using hydrocortisone regularly or saying this med was their savior. I'm just coming off of a week without breathing well so this Poll interested me.

Thanks to all of you for your response. I did try some coconut water and liked how I felt after. So that's something I'll add to my bag of tricks. I am happy my family Doc does have a POTS awareness and in absence of other things it's possibly an option as a diagnosis. I don't have a definitive diagnosis and not always convinced that I'm on the right track....this thing keeps me guessing. I'm happy to have this forum as a resource...I try to not overdose the info because it can make me crazy thinking too much but I'm glad to be here so I can learn.

Hello ~ I'm Tracy. Recovering from my second bout of a POTS attack. First one was 2009 and I never was diagnosed - I just got better over time on my own. At that time I started to research POTS but once I recovered I was pretty sure that I didn't have it. Had my next flare up in January - coincidentally the exact week of my attack in 2009 - and this time landed out on disability, was hospitalized, discharged without a diagnosis and sicker than I went in. Once i came out of the hospital I followed up with my family Doc who said I have POTS. I've done terrible on Fludrocortisone, took Hydrocortisone 2x/day which helped a ton (my women's health Doc thought I had adrenal fatigue), a cardiologist prescribed Midrodine which I haven't tried since I do terrible on meds. Right now I feel so lucky to be 80% better. Back to work and functioning but I'm symptomatic every day. Every single day is hard. I'm off all meds and I just salt and drink Smart Water. I only do 64oz a day because it seems like too much water flushes out my electrolytes. I feel lucky that my family Doc has a POTS awareness but I'm somewhat self treating and not sure what to do next. I still have expectations of a recovery. My main symptoms are low BP while supine - 85/45 usually in the morning. Hard to get moving. I feel like I'm riding on an elevator during parts of the day, and also feel like I'm descending from an airplane with head pressure. I have right ear pain, and a pulsating or spasm in my neck on the right side when I'm real symptomatic. Also I may have blurry vision, be unable to maintain body temp, usually run low, feel cold. If I get hot I don't sweat anymore I just feel sick like I'm in a heat box. Digestion is now much better. But I do get a symptom that I call "nervy" - it's like electricity is going thru my body...sometimes it's just one spot sometimes it's all over, sometimes just right side of my face. Had an endocrine guy rule out Addisons, but did find low Aldosterone and low renin however he told me I was crazy, skewing my own tests and that I didn't need an Endo. Had negative CT Scan, brain MRI, all negative cardio tests. Had a TTT in which I felt terrible but didn't pass out. I do faint on my very worst days, usually in the middle of the night when trying to pee. I use sea salt every day, iron for anemia, have low ferritin and no idea how to correct, corrected Vit D deficiency, take EFA's and vit B. Blood work and my period just about kill me. Just started acupuncture and chinese herbs, able to add some light weight training last week. After being long winded about my story my question is how to take my salt??? Throughout the day, in the morning, at night and how much?? I have no clue and no Dr. I just like it out of a baggie. I measure 1 tsp into a ziploc baggie and lick it t/o the day. Also, I'm not as symptomatic as some of you so I feel so lucky and I still have hopes of getting better. This forum has taught me so much about getting better. And I'm pretty sure you guys are the experts. Thanks for any suggestions on how you all salt. I appreciate your dialog on what you're all going thru. Regards, Tracy