Faye

Thank you all for your feedback, never thought I had a low sodium diet, and since benign advised to have a high sodium, realize it was far from high... KS42, would love to know what you came up with as well...if you don't mind sharing looking for varieties to help keep my body getting use to one source....

I have chosen pedialyte to help with sodium and way to stay hydrated....Gatorade seemed higher in sugar...but even getting the store brand adds up...looking for other high sodium/electrolyte drinks that may work as well... Any alternatives even if other choices are welcomed....I sometimes also do 1/2 teaspoon of water with lemon juice, but I kinda am burning out on choices.....

POTS hangover is what I will call it, drunk on dancing, feet where on the floor dancing like I use to, had about 120 oz water, had several lay down flat moments due to high heart rate... and today can't seem to get it any lower laying down below 115....guzzling pedalyte hoping it will help, and of coarse very little sleep....but like back in college days it was worth it(minus the booze) ... With dancing and high hear rate that was plent a buzz... Lol....a day for sticking in bed....but I knew this was likely the outcome.....so I can't be down about now....I enjoyed myself and will hold onto that as I try to meditate e and guzzle electrolytes

Oh yes paying big time, it's ok

It is so bitter sweet to here you are all on the same page....I think one of my first post was about going from being very active, always on the go, hiking,dancing, daughters school sports....and it is and probably will be for some time the whole cycle....today is a very "pots day" heart rate being unstable all bouncing like a basketball, and bp not too far behind...feel my pulse in my ears and throat kinda day....but I have an ugly sweater party and darn it all I am going! My hubby will wash my hair, daughter will dry and flat iron....and I will do the face....hey team work...good thing I am wearing leggings under my long ugly sweater, fix these feet aren't touching the floor....short of breath, like I ran a marathon....but you all really just help me to keep fighting and accepting this is doable, may need to inlist help, may need to do it differently and not as long, but you can have a life and it can be fun....tomorrow will be a 100% bed rest...probably won't have a choice, but today I do, so her we go....

Yesterday evening had an hour where my BP and heart rate where what it use to be....I was so excited, thought about the day and tried to replicate it...but nope, it was back to business as usual with wonky high hear rates and BP all over the place...major headache this evening...really started to get upset...but trying to remind myself to be thankful for having that moment yesterday and though it is not great today, it's not the worst...just roll with it, breath, and lay down....sigh...

I was on depo for 14 years do to endometriosis, and the shot was no longer working and stared to yield other issues, had a hysterectomy best thing for me.....but Depo was pre POTS with multiple symptoms and I loved depo it was the cure for me for a long time.

Thanks for your responses... I may need to have more fluid then the 64 oz of fluid and with electrolytes I have just now this week again trying light exercise again..use to do 5 miles a day, now a stroll of 15 minutes sends me to a bad place. I tried to get back to my yoga but everything I do it makes me so dizzy and things start going dark....I may need to just find some floor exercises and think of baby steps... Just a whole new world for me....and I hear a lot of Trail by error here and wax and Wayne.....don't care for it, but am trying to learn to embrace it and work thru it. Nice to have a place to get to hear all of ppl experience....it helps a lot

I had read that it could cause higher heart rate and some facial twitches, I am not sure what to a mkame of it. I have had 2 cardiologist, primary, and GI dr say the dose is so low.... Since being off the beta blocker for past 5 days it almost seems like the high rate is almost the same as my bad day on it... I do wonder tho if that has been making more emotional in the past I did not do well on antidepressants, if anything they made it worse. I have actually done better with anti anxiety meds.... I would say for sure it has helped a little with sleep and empty bladder, side benefits not accounted for...

I can say for myself since I become multi symptomatic, that is how I feel....kinda frustrating at times, not knowing how to plan to get thru what symptoms are the worst and plan life for them. Trying to learn how to live in the moment, and have those in life we work with, or friends and family to understand and roll with it, has been a challenge for me. All I know to do is to try to educate and explain how POTS impacts me, and how it may impact them. I am blessed for my boss tries to understand and be flexible and I push myself and he knows. My family and true friends love me and tho may not always understand are willing to ride this fun house of a coaster. I hope you have support that surrounds you, at times we are harder on ourselves than we would be on others and we need to hear that from time to time...

I take nortriptyline 20mg for my GI spasms, they were pretty debilitating...was wondering if anyone has any experience with this med...it has for sure helped to calm them and now even when they break thru for the most part they are manageable. But has anyone had any negative experience with this and if so what?

I am not sure what to make of it, but it seems like being off the beta blockers the last 2 days are manageable, I am very grateful and trying not to think about tomorrow, just be happy for the moments...I actually had a very busy last 3 days and was able to pull thru without too many issues, I had to make adjustments, but am very pleased with having what is closer to typical life... So for I will be grateful for it. Just wasn't sure if others found they could manage their pots without meds and life style changes, I mean we all have really trying times regardless or meds, but am hopeful if it is possible to do it medication free...if long term the answer is no, I will go with it...but still hoping

For me for sure stress with trigger my rapid heart rate and GI spams....strange I recently found if I over eat my heart rate also seems to increase for a while....hmmm nice to see it is something else noticed.

Awe it's the little things that mean so much, and true compassion and a way to make us smile, that is so touching

4 full days beta blocker stopped to do a tilt table test, first 2.5 days I felt really awful but last day and half felt better. I am noticing my body seems almost confuse, my blood pressure has been higher (well for me) 120 ish over mid 80's to low 90's or low 110/80... My rapid heart rate seems better then some of my bad days on beta blocker... Not ideal... But manageable as long as I don't stand still for too long... My Bp use to be 90/70 sitting and her 80... I haven't see that since symptoms in last two months... I am still having dizzy spells but the tightness in the chest is not as bad.... Maybe my body is going thru withdraws from beta blocker and confused trying to adjust... Just wondered if anyone is medication free or stop normal Pots meds if not having a flare or if symptom seem dormant? I have never been more confused by my body or how it behaves then I have last couple of months.

Hello all! I am blessed that at this time a telecommuter and work from home sitting at a computer. Normally I go for walks but these days been a bit challenging.... I wear compression full stocking from the time I open my eyes, to end of day, before my feet touch the floor I drink 16 oz or pedalyte and water combo. These things actually help, I had no idea until I got in a hurry and didn't do it....and I eat every two hours and have Daly snacks .... Today I actually had some better numbers while working for about an hour ....but it's the tightness in the chest that is so uncomfortable ...my rates are jumping a bit around but attribute it to the beta blocker coming out of system... Sometimes I have noticed not just now but before my heart rate can have the same # and feel different in terms of palpitations...could be a low # or high... If you know of any way to get rid of the tightness that would be great! I have tried meditation and breathing as well....just to make sure I am totally relaxed and back to taking me anti anxiety meds just as a double ck....yet that tightness won't go... Maybe it is trying to adjust had a few moments where I got very lighted while sitting and working but by the time the wave came and done and my bp was fine...few times funny spotty vision and then gone...I am very confused by what my body is doing....today is day 3, still fighting....

Hello all Yes Midodrine was the name of the medication. I want badly to try but my pulse resting is sticking to 120 and standing is 180 to 199.The tightness in my chest, short of breath, and dizzy when standing is tough, if I lay down it will go down and bounces from 100-115. But I have to work and can't take time off....with the beta blocker my average resting rate is about 90 and laying down 75 to low 80...and standing is about 120 to 135.. Of coarse more brain fog or confusion than normal and it has been 30 hours.... I am going to try and stick it out....and cope, but a part of me is already tired of the tight chest and shorter breaths...I keep saying as long as I don't pass out keep going...

Yesterday LA school district got shut down due to a threat and it sadden me, today my child drove herself to school and was running late....and for once am glad....she got turned around and told to go home...her school received a threat.....it looks like it was a bad hoax....but the what ifs really scared me....she was upset I could tell so I made it out to be me and held for a few.... It just really upsets me that our children have to feel afraid to go to school....

I find that if I do too much in a day, it is a guarantee to end with me not feeling well, and sometimes leads into the next day or so. It is hard for me to comprehend this....before having all these symptoms I could work a full day, do parent duties ( after school sports), go to a party, have little sleep and still go full steam ahead....these days my body seems to have to remind me regularly that I need to,slow down a bit and do things a little differently....not a fun reminder....but slowly am learning... I hope a good nights rest and maybe a little down time will help...

I don't have an answer but feel for you...my spouse is a dialysis patient.... So thought I would share what they suggest at center....it may not apply here...and may have already tried....sometimes they have him lower his arms down to help circulate and increase blood to arms, sometimes they use warm packs, they try to use different parts of his fistula because over use of an area will also blow his veins...and then they also rotate the RN...I am hoping you are able to find something that helps you .....or a vascular dr who can help

Today met with a local cardiologist for a 2nd opinion and thoughts....after not being satisfied with first cardiologist ... This one said he has been treating POTS patience for about a decade and at least took a full history asked questions listened to all my symptoms....he gave me a choice and thoughts.....come off beta blockers and do tilt table in two weeks or we could start on new meds with trial and error....he is 95% sure it's PoTs...he said either way the treatments could be trail and error while we look at ....forgot the name something to do with cell and nervous not being right....having one of those days nothing is working...but in any case I proposed come off meds, and if while waiting I find my symptoms are unbearable, I will call and start back on beta blocker and new med... Something with an M ... I know I have read about it online.... In office did a mini poor man tilt with ekg....as well.....my brain is not focused today... But I hope I made the right choice I really want to do the TTT and have as pure results as possible.i suppose worse case is I can't cope and I start beta blocker and start on the new meds while getting insurance to agree yo other testing...

I am so glad to hear that positive experience. I overall am doing much better than where i was two months back, however knowing someone will really look at my symptoms, and work with me to come up with a plan to have better days....is encouraging. I keep reading a common theme... Wax and Wayne....I call it my yo yo when friends ask.... It's like I am fully functional and then out of no where I am down for the count....I almost want/wish to display something at my appt....but I have documented my pressure and pulse to at least have some proof of the high heart rate and low pressure....it is sad sometimes because other dr start to point that it stress or anxiety and do not go past, or they think your heart rate is 'acceptable' range , but anyone who has felt th symptoms of POTS knows, there is nothing normal about feeling like your heart will jump out of your chest and things start to go dark when you stand or walk up a flight of stairs.

I am most days able to go for a walk for about 15 to 20 minutes, but I feel the same way as you are describing above plus tight chest...and then It takes a while to come down off that high...is the way it feels to me..with the lightheaded and foggy brain (like being disconnected almost from reality).

I get it usually on my left side starting at top of my amr into my pink and ring finger and some times down my left leg into my foot. I actually went to urgent care. They said if you can move your neck and are able to speak in normal sentences then you are ok, but I think it is always good to make sure with dr to know what symptoms are normal for you and what signs to look for that require medical care. So uneasy with some of the symptoms sometimes and worried I will be called wolf but I would rather be cautious.

Thank you so much for your response! I am trying to be hopeful to find a Dr that can proper testing for POTS as well as being understanding and engaging....crossing my fingers.