Relax86

Right after I was D/C'd from the hospital in 2012 I started googling my issues of course. I told my Dr that all my symptoms were vagal. I was researching ways to get the vagus nerve healthy. I found the forum and realized that dysaut/POTs best described me. One thing I think I found in my research was the vagus nerve innervates the ear drum. And thru all of this I have always had R ear pain. Not sure this is high level research such as Rich's but it connected for me. Also, Rich's theory is why I was always so hesitant to try a bunch of meds. I understand on peoples worst functioning days there needs to be meds to get us by but I was never convinced that any of my providers had a clue on what they were treating - just firing off drugs for symptoms was never an answer for me. I did use hydrocortisone and some midrodine in order to survive but the Docs never knew why I needed those drugs. Which is why Rich's work and all the work that forum members provide is so important. Too many docs saying "you may never know why Tracy, but just take these pills to help - the body sometimes just doesn't do what it's supposed to" SO thanks Rich for helping to someday answer my question to my Doc's - Why?

#3 is my battle. I'm in a small flare right now and handling much, much better. Usually January is my "flare season" but the last week has been a little bit funky. Less fear this time, feel more in control and can ride the wave a little better as a consequence. Very true that my main symptoms have been different - annoying none-the-less but will muddle thru. Beating the worry seems to be my biggest game these days.

I had very mild POTs symptoms as a kid. Had 2 children with no real POTs flares - POTs seemed to get better while pregnant. Had my worst flares in 2009 and 2012. I completely recovered in 2009. This flare has been formidable. But I have learned a lot. I worked thru all of it except in Jan/Feb of 2012 I was on disability. Like Momto - not working is not an option. I work thru flares and crappy days but I can do it. Truth is most days I feel about 85% better. Some days on the forum I'll read my posts and they say 95%....I'm not a telling forum fibs - lol - it just depends on the day. My life is close to normal with modifications that I have begun to accept.

I have found that meditation, and breathing help anxiety. It doesn't help my POTs. I actually think reading and hanging out on the forum brought me peace from the anxiety as I found more people with like symptoms. Reducing the fear made a big difference for me. I'm in a little flare right now and with the anxiety reduction I have less surges so POTS is tolerable. I hope you find your center or distraction from the anxiety. When it was bad I played mahjongg on the computer. It passed the time and helped me focus on something other than symptoms. Good luck

Smells are a problem for me - they cause flares and I'm intolerant during flares. Can't walk down the cleaning isle in a store; the dog food isle makes me sick to my stomach; the perfume department in Macy's shuts me down. All normal for me. When my girls decide to paint their nails my symptoms go bonkers. Smell intolerance can be our normal. Good luck with the cleaning.

Very much a trigger. Also prone to tachy episodes after showers as well as short of breath. Will get these symptoms when I'm flared.

I also had absence of sweating. The list is comprehensive and it made me sad to see all the things I could check. I tried to be conservative and not over think it. Still a lot of checks. But also comforting to know there's people out there that understand and feel the same. It's nice to not be alone. Good luck all

I have high prolactin and I did have some lactation over the summer. 44yr old non pregnant female...kinda weird. I told my primary I had breast milk and let downs and he thought I was probably over thinking my symptoms. Besides offering to feed him I really had no intention of proving it. He ordered bloodwork and my prolactin was high. I had Pit MRI which was negative. The lactation seemed like it was mid cycle and has since gone away. My meds at the time were Midrodine and a little hyrdrocortisone.

I don't check HR during exercise unless I'm feeling terrible. My biggest problem with cardio is not that my HR goes way too high but my HR will stay elevated for hours. It's like my body doesn't realize that I stopped the activity.

Congrats... love to see people progress

Originally my POTS came on strong after a 4 day hospital stay. Way too much blood work and chronically low BP was a terrible combo to me. Florinef didn't work; made me worse; but I seemed to tolerate salt and water. The combo only temporarily helped along with hydrocortisone. At some point I could no longer sustain my BP without some extra help and I used midrodine. Once I stopped craving salt I stopped using salt. AFter only a few weeks with midrodine my BP returned to my normal. I guess my point is that while hypovolemic the salt and water helped; once that seemed to resolve then salting didn't help. I am currently exploring my + ANA. Unsure what came first the possible autoimmune or hypovolemic POTs caused autoimmune flare. At any rate, it seemed like for me salt had it's place but only temporarily.

Mine came gradually, slowly not feeling like myself over a period of 3 months. I don't know what the cause. I had just started a job in a Long Term Care facility that I hated, that had a ton of diseases and where I had a ton of responsibility. I've had jobs in management before but none that I disliked as much as this one. It's worth a note that in 2009 I made a job change that I loved, in the same time of year and had a mild bout of POTs that I got thru much quicker than this one. Morale to the story for me: don't switch jobs, especially to something that I might hate, and possibly not changing positions around Christmas. As far as what type - I suspect autoimmune. + ANA, + low blood volume, + anemia, + D deficient. All my Doc's are aware of Dysaut/POTs but no one really knows what to do. Good luck to you. For the most part it's the forum that's brought me peace and answers

Anyone have any new thoughts or solutions for the vein issues? My veins seem to only be forearms and hands. The veins burn and fill up and pop out a nice blue. I look ridiculous with my arms over my head but it seems reasonable that I need to get that blood back to the trunk for good use in other areas such as my brain. I'm really trying not to complain these days as my HR and BP are stabile most days. I just was wondering if anyone has updated info on why this happens or what might help. Another question could be ~ is it dangerous?? It happened during my rheumy visit last Friday and she seemed frightened (not going back). Told me I'm not one of her diseases, dysautonomias are tricky and good luck finding what works. Usually, it's the forum. So thanks to any and all who have any input.

Sexual difficulties for me are due to being a breath holder and valsalva is a problem for me....carrying groceries, singing. I had to learn to breath thru which is distracting. Moving my blood flow away from my brain makes me symptomatic. Would rather be Potsy having sex than laundry - I gave up laundry.

Laundry is the worst: Despite my best efforts to reduce and energy conserve there's always some amount of: stair usage, carrying, repeatedly bending, repeatedly lifting arms overhead. I get my family to help me with laundry and even on my best day I feel some level of symptoms. I swear I can smell the tiniest bit of gas from the dryer. It's just a pain.

I always felt like weight training - light and careful - was helpful for my POTS. At the end of the day I still have setback days, good response and bad response to exercise. For me, if I'm not having any serious adverse reactions then why not just do it? I think it does help with stress management and it does make me happy to tolerate it. I feel like my improved conditioning in the last 6 months has helped me build a physiological tolerance to flares as well as emotional. I'm also with Rama in that my general tolerance varies each day. Somedays I can lift 15's or 20's, other days I'm lucky to get in a set of 10 with 4's. At times I can jump rope for intervals or do some burpees and mentally I'm thinking "I have this thing beat!!".....it could be 1 day later or 1 week later that I'm on the couch with a kale smoothie or a brownie (depending on mental state) breathing thru some tachy crap, waiting to pass out making me feel just crazy. Cheers to the good days when they come

Occasionally will crack my own neck and my dysaut symptoms will reduce. HR, blurry vision and headache. It's on occasion that this trick works. It's not my only go-to move but it was worth posting.

I smell fire or gas which wakes me up in the middle of the night during adrenaline surges while I sleep. I smell ammonia before I faint.

Ummm - any tips on not being mental while flaring? I have not figured this out despite knowing how the worry/disappointment of a flare does not help.

Not able to speak to or answer your question. But here's some food for thought. I've had low hematocrit, hemoglobin, low Vit D, positive ANA (supposedly mildly positive) strain of autoimmune is indicative of Scleraderma, recently had low Complement 3 test. The few positive tests I have seem to not equate how terrible I've felt in the past. It doesn't help me figure out why every day my symptoms seem to change. While bloodwork is a very important piece to our puzzle and certainly we all want to rule out stuff - especially bad stuff, if not all stuff, don't let the lack of positive tests dictate your drive for answers or not validate your concerns or symptoms. This might not apply to you, it might just be me but sometimes it drives me crazy to have pending bloodwork that might give me answers only to have most be close to normal. Hopefully you get the answers you are looking for. Good luck.

Crash after. If HR is up during I take longer rests between ex's (I weight train). I also use long exhales which seem to help control. Other times I have no difficulty during ex but later experience the crash. Sometimes happens during the shower - if I let water get too hot. Sometimes it's after my next meal. Sometimes it's the next time I pick up something from the floor, or something too heavy.

I have periods where I get better. I think it's official that I'm a dysautonomia case at this point. I was here at the forum in 2009 but got so much better that I thought I didn't belong. Deleted all my POTs articles and went on with life. Both of my flares happened in January and both after job changes - one job change made me ecstatically happy and one made me terribly sad so I can't correlate to emotion but maybe stress??? That being said this second flare landed me in the hospital for 4 days and I believe I had way too much bloodwork causing POTs. I'm no longer officially POTs but my Dysauto symptoms are still an issue. I also think that I've been a lifer so to speak b/c I remember symptoms like I'm having now in other periods of my life and I just blew it off to being over fatigued and being a neurotic stress-ball. Additionally I had some orthopedic surgeries as a kid and I remember my Dad always saying I didn't bounce back like the other kids who had surgery on my day. And now I believe I respond poorly to blood loss. I just don't think my body regenerates RBS's well. I was tossed out of the red cross when I was 21 and no longer eligible to give blood for constantly being anemic and I never addressed it. Today I take 2 iron pills a day and I'm always low. I never know what makes a good day or bad day. But I'm 85% better and can do most of what I want when I pick my battles. A forum poster from a year ago had said that he feels crappy all the time so he decided if he's gonna feel like crap sitting home he might as well feel like crap doing his normal routine and overall would mentally be happier. Because I'm one of the luckier ones that can function - then I do. I actually have more symptoms the days when I'm sedentary. My blood likes to flow so I let the good times flow.

To find the reason for my POTs, to not freak out and fall apart on bad days. And to not worry about a relapse every second of every day and ruin my current progress.

Crash days feel definitively different than a dysaut day. I found out that long sitting is a posture that helps me. Lying flat on my back gives me some trouble, sleeping drops my BP and walking is a problem. Sitting up in bed with my legs outstretched seems to calm my system. Water, something to distract my mind, meditation/breathing can help. I reduce the size of my meal and I have a 'go-to' food that doesn't make me feel better but also does't hurt: Trader Joe's brown rice, a slice of cheese, a little chicken and some spinach. I might only be able to eat a bite or two as digestion is a problem in my flare - pain, bloating, OI, fatigue and incr HR after eating. Seems like I can't let my belly get empty but even worse is if I eat and get too full. Low light, low noise and no smells (have to throw the kids out of my room if they use their Abercrombie and Fitch perfume). I always can finish my work day but I limit all other activities and use weekends for energy conservation. Being sedentary always hurts me more than helps after a period of time. Finding the balance of rest time and when to get up and go is still a bit of a challenge.

As a kid and youth my family had a relatively healthy diet - no fast food, no sodas and very few meals with processed foods. I cook that way as well. I also didn't party too crazy in high school/college. I've been eating the colors of the rainbow for over 15 years (as per Dr Andrew Weil). As it turns out I"m the healthiest sick person I know. Point being, if ya partied and had a great time I say - glad it it was a blast. I did have some environmental exposures. I I had several major orthopedic surgeries as a kid due to a birth defect. Makes me wonder if my body poorly tolerates blood loss. Prior to my 2nd flare, right around Oct/Nov I was eating salted popcorn and bought salted peanuts like it was my job. I had no clue POTs or a severe BP drop was looming. I craved salt but never put it together. Once my BP stabilized so did my salt craving. The salt I started to use after the flare was a himalayan sea salt and I liked it. My urinalysis has always been close to normal, and I'll be honest I've done a terrible job in the last year keeping my labs together. I might go back and look at which part of my urinalysis was off.