Relax86

I drink Smart Water also; 2/day. 0 sodium. Bottle says calcium chloride, magnesium chloride, and potassium chloride added for taste but it does not give quantity which makes me think it's so minute that it's not even measurable. I could be wrong. It was much cheaper before Jennifer Aniston was doing the commercials. But I can still get it at my local BJ's for a dollar ($11.99 for a case of 12). I buy 4 cases at a time. Sometimes at work I'll drink the first bottle and fill up with the water cooler just to try and save a little on cost. But my mental status thinks it helps and I try not to cross my emotional needs...

That's a guy who would have found an excuse to cheat even if you were healthy. Don't blame yourself and don't blame your illness. It's all him. There are great men out there - I believe that to be true. I am lucky to have one and I realize that makes it easy for me to post here to you. But there is a girl on this forum who posted wedding pics this summer - she has active POTs and found someone who loves her for her good and bad days. Try and stay positive in that things always have a way of working themselves out. I'm sure you have inner strength that you didn't realize you had. That's what women are all about. And when you're ready - you'll find your soulmate!!

In January I needed help to the bathroom; today I can walk indefinitely to do most of my activities of daily living (work, shop, socialize). I do have fatigue limits and if I'm tachy I slow my pace but I don't stop. I also had to do a re-training because the more I sat the less I could get up. I also had noise, light and smell sensitivity and I had to re-train to tolerate those things as well. My experience was when I did push my body slowly and carefully I had an increase in symptoms that would lead to an increase in tolerance. Is that confusing?? If I used my treadmill for 15min on Monday I would struggle with tachy, breathing, internal tremors, ear pain, stomach pain later, but on Wednesday I would have a very low symptom day. So there was a payoff with a little push. I don't have any medical reason to not try. I don't know what type of POTs I have or why I have it. I had cardiac clearance. I am 85-90% better since my crash in January of this year. I look at the forum less, but still read b/c I really want this to get better but more importantly I don't want it to come back. I am grateful for my recovery ~ keep the faith.

Just wondering if people are having continued success on this drug, or any of the new members have used this drug with positive results. Still calling myself 90% better. Also, feel very uneasy about my recovery....as if I could be one bad day from a relapse. There are days when the POTs fear just gets in my head.

Made me feel much better, then after some time my BP seemed to return to normal and I no longer need it. I would jump on it again if I ever experience BP lows again.

For me when I did get my HR and BP under control I felt much better. I was low BP/high HR. I havent' yet gotten an exact POTs type diagnosis, but recently had positive autoimmune blood work. Rheumy visit isn't for a couple of weeks. My flare started almost a year ago and I consider myself 80 to 90% better - depends on the day I post - hehe. I also believe that most of us learn to tolerate our symptoms significantly, so while I say I'm definitely much better a good day may entail R ear pain, throat feeling sore, no deep breaths, but HR under 95 - so I consider that a good day. I actually think most POTs/dysautonomia peeps are heros - going thru every day being symptomatic, possibly judged, not a really good treatment option that works for all or even consistently and yet we still keep on looking and trying. Even the bedridden people are positive and super helpful on this site. That being said - you can get better with POTs, - I did. I credit this forum for the recovery I've made. I'm sure you can get better too!!!! Good luck

When I would have the inability to breath for days and days in a row the low dose of hydrocortisone would take it away immediately. I also notice that when I am more regularly attempting to walk on my treadmill I get that symptoms less. It's just hard to convince myself to get on the horse. I also notice that breathing techniques work for me - specifically a gentle inhale, specifically trying not to inhale thru the resistance, followed by a long slow complete exhale seems to help. About a week ago I was having a tough time breathing along with sore throat on 1 side and tons of sneezing/reacting to perfumes and smells...etc. I almost gave an allergy pill a try, but afraid of increasing my HR. Good luck

Good luck with that Yogini. In July I was out for 12 days and we have well water....luckily my husband hooked us up to a generator for the important stuff, but life was primitive for sure. It was hot and I had no AC - really hard to control symptoms. My symptoms post the storm today have improved. I am hoping as this thing totally clears I'll be back to where I was. Good luck all

I had positive ANA and the pattern was nucleolic. Supposedly indicates scleraderma. I have had no skin issues from the start of this journey/nightmare. My endo ordered the panel then referred me to rheumy. Appt isn't until December. I've been sick for almost a year, and quite a bit better these days so I am prepared to wait. I am somewhat glad to find a reason for the POTs, but of course no one wants to find disease. My symptoms today seem to be more vessel related and specifically on the right side. I feel my carotid pulsing, burning, then I'll feel my right hand burning and see all the veins pop out and turn dark blue. It's a better symptom than fainting, or steadily taching with low BP's, or the internal tremors that I used to have so regularly, but I would like to know a little more about it and how to manage. All along I responded well to hydrocortisone so I suspected I was autoimmune. My endo said the doc I'm going to is a friend of hers and is great at putting together a puzzle...said this doc would patiently look for help for me. Fingers crossed and good luck to Abby and all

I completely had a return of portions of my symptoms. I thought I was crazy for thinking the storm. Then some FB people were posting ear popping and head pressure. I told my kids to turn off music because it was incr my HR and that's a symptom that's been long gone. I also felt nervy, ear pain, had blue veins popping out in my hand all day. I live in SJersey. Sandy made landfall not too long ago and it's very quiet here as we are supposedly in the eye of the storm. Just about 10 minutes ago I started to be able to breathe a little better and it dawned on me to check the forum to see who might feel like me. There's comfort in numbers. Thanks shan1212 for starting this post ~ it helped a lot. Prior to today I was claiming 90-95% improvement. Anytime I have a little off day I let fear sometimes overtake my positive energy. This thread helped calm me....thanks to all that posted.

Really great news POTLUCK...I'm also about 95% better theses days and off of meds right now. I used weight training to help me push through. Light weights and higher reps. It raises my HR by about 40 bpm very quickly and takes an unusual amount of time to get it back down. I don't feel comfortable. I've been cardiac cleared. And the overall result is that I'm better. Calling it 95% these days. Good luck to you

I took a small amount of a probiotic at night, tried to add yogurt to my diet which I never liked on a good day, I also used Prilosec approx 20 mins before a meal. For whatever reason ginger ale seemed to help after a meal and yes, very small portions. I avoided red sauce, gravy, chocolate, soy sauce as they seemed to be big triggers for me and my reflux/pain. I just seemed to eat the same foods daily that did work. For me rice and chicken; hard boiled egg whites (of course everything salty - which bugged my stomach but I needed it). Good luck Hughes.

Jan 2009 - moderate onset lasting 4 months then mild for 3 months Jan 2012 - severe onset lasting 7 months then symptoms tapering, and still mild at month 10. I'm starting to fear January's

I would say most recently - in the past 2 weeks - my POTs has switched from a daytime issue to night. Since January flare I have usually been able to get a good nights sleep with the occasional tachy episode, or waking too many times to pee. I feel like I might by 85-90% better during the day and I'm incredibly grateful. But at night I feel like blood is rushing threw my carotid artery one way or another, I get very tachy, lie awake, awake many times t/o the night, sleep very lightly, usually feel like I have to pee. I have R ear pain and R sided shooting head pain. So I guess I didn't offer any answer but as I travel through this flare and I am hoping to be coming out of it, my symptoms have switched in their timing. I was on hydrocortisone (recently weaned), I suspected adrenal fatigue. I also recently had autoimmune bloodwork come back positive. So still putting pieces of the puzzle together. Good luck with your night time symptoms.

Once I started to exercise I noticed my fair days turned to good days...it progressed from there. The bad days were still as bad and I had the urge to blame the exercise but really for me POTs does what POTs wants to do to my body. I couldn't have done it without meds at the time - currently I'm med free. Also I started with low weights/low reps resistance training. I added cardio a little later. I am about 80-85% better. The drug I used was hydrocortisone....I weaned without adrenal difficulty - (lucky) - but I liked how my body felt on it. I miss it. I also think it wasn't the best steroid to chose but it was the one that was prescribed and it worked. But back to topic - for me if I didn't keep re-attempting the exercise I would not have gotten better.

I've been off of HC totally for about 2 weeks. I recently had pituitary MRI - negative (ordered b/c I'm lactating - sorry gentlemen), and blood work that showed Low hematocrit, hemoglobin, ANA screen IFA - positive, ANA pattern - nucleolar, ANA titer - 1:40 H. No clue what this all means except maybe this years POTS was brought to me by autoimmune attack of some sort. Tests were done by a great endocrine but I'm guessing she'll refer me to Immunology...not sure my next path. I do miss HC - it really quieted my symptoms quickly. Im not feeling significantly worse without it but it did give me some boosts. Good luck all

I tried it every other week for about 5 sessions along with Chinese herbs. Seemed to make no difference. Didn't hurt at all. I'm going back soon just because I don't think I gave it enough time and was in a little flare by the 2nd or 3rd try. Also, he positioned me supine which is bad for my BP.... I just need to open my mouth and get him to sit me up or semi recline so I don't lay there thru treatment worry that my BP is/was dropping. I also sought out a licensed provider. And I believe it's worth another shot. Good luck

I smell something burning when I sleep. I wake up usually sweaty, definitely tachy, and light headed. Most of my issues occur - I believe - while I'm sleeping. My BP drops to 85/45 ish during a bad flare (been better the last few months) as well as adrenaline issues and the feeling that blood is rushing thru the vessels in my neck. You can see them spams...can't tell if it's too much blood in the brain or not enough. Lots of head pressure for me and always Right ear pain, into my neck and when it's bad my upper right jaw. Smells are a challenge for me b/c I can smell 100x better than most. So my kids have to hold off on the Abercrombie and Fitch perfume, I no longer light candles, etc. But I do smell burning things on my bad nights

My BP drops when I sleep. And I can experience some of these same symptoms. I'm a low BP POTS person so if it's been too low during the day I'll salt before bed....usually helps. I know we all have our little nuggets of things that help us manage and somethings don't work for all. I'm not even sure that salting before you sleep is a bad thing....but it helps my body to maintain a little salt during a time when my BP's drop, I get fainty and lose hydration thru night sweats. (Not sexy by the way)

I'm out of it after about 5 vials....takes me about 2-3 days to slump then about 2 weeks to perk back up....usually just in time for my cycle (sorry to the boys). I feel always behind the eight ball with blood supply. Have been diagnosed hypovolemic but what I've learned from this forum the test I had was not a true test of blood volume.

Hydrocortisone helped me a ton....Midrodine second. I just had a Positive ANA. Which helps me understand why I was pushed thru POTs with a corticosteroid. Now to try and figure out which autoimmune I am...we shall see

Beautiful... Congrats...best wishes!!!

I also got better with steroids. I used HC. Which one did you use and how much - if you don't mind me asking. I just weaned from the HC and I'm pretty much scared to death.

I have/had low BP's while I sleep. No one has figured out why. I'm 85/45 and it feels crappy. It got better with a late night dose of hydrocortisone. Some of the forum people may know that I have responded fair to HC. I don't necessarily think this is the best drug for me but in my worst flare it seemed to pull me out. I've been off of it for almost a week - tapered slowly and BP is hangin in there around 106/58 in the am. If I wake up in the middle of the night I pump my ankles for a little until I fall back to sleep. I also eat some salt before bed. I'm being assessed by an Endo at this point, heading to autoimmune after that. If I get an answer to low nighttime BP's I'll pass it along. As far as how we present to DR's I make the mistake of sometimes downplaying how I feel. For one: the list is a mile long and makes me look crazy and two: we are all so used to living with such a struggle that we actually put up with way more than we give ourselves credit for. The reality is that what I call a good day would have the average person either calling off sick, or at the ER. We are unfortunately adaptable to the struggle and unpredictability of this syndrome. Good luck with your BP

I was a little bit of an advil abuser. Confessing