Mytwogirlsrox

It's pretty good, did you see the links to the pbmed articles? Good stuff

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=38847

I'm only POTsy in the morning now. Usually right when I get out of bed my HR jumps to 115 ... Then for the rest of the day, Im below 100 bpm standing..anyone else? It gets slower through out the day too.. Sooo weird!!!

Ana! Amazing! Thanks for sharing your success, it very inspirational

Batik-- I was curious because I gained/ lost huge amounts of weight prior to pots. Around 30% of my body weight lost in 6 months. I wonder if the weight loss could attribute to ans deregulation. My weight has fluctuated tremendously in the past 4 years!! Compounded with hormones & surgery sounds like a recipe for disaster Wendy-- very interesting! I have also had weird fluctuations in weight, especially right before my diagnosis. I could lose 7-10lbs in one day. Plus, I was eating like a cow and not gaining weight. I was also well below my usual weight. Now I'm back in my normal weight range, and my weight barely fluctuates. The only explanation that seems logical to me would be losing water weight or not holding onto water properly. I don't exactly feel "normal" but I'm able to ignore my symptoms most of the time. I read that sometimes pots can "heal" slowly over time.... I'm hoping this is the beginning of healing.

Batik did you have pots post this weightloss Or prior?

Interesting! Thanks for sharing your experience. I wonder sometimes if my body doesnt hold onto salt properly? Or lost it ability? Who knows but retaining fluid for a hypovolenix sounds good to me

Just thought this was interesting & wanted to share Pre-pots I was always extremely sensitive to salt. I never cooked with it! I would eat pizza per se and my hands, feet and face would retain so much fluid.. IV fluid would also do the same thing. But since POTS came on, I stopped having this annoying thing. I could eat COstco pizza (the worst ofender) and not have a bit of swelling. Now the swelling is slowly coming back. I haven't a clue what has changed, but I hope this is a good thing. I haven't seen much improvement in HR, it's still about 95-100 standing but my fingers are crossed that this is a sign my body is getting back to normal.

Interesting too when MCAS is considered an etiology

No need to be embarrassed I haven't felt this way during climax, but I do feel like this after I work out. I imagine it being from an already charged up Nervous system, then activating it even more. Like its irritable, does that make sense? When you talk about oxytocin, I had (excuse me for saying this) but the best orgasims while pregnant and nursing. And I know that oxytocin plays a huge role in pregnancy.. So who knows, maybe it's ramping up your orgasims? I suggest trying some breathing techniques after or during orgasims to soothe your heart I do them after work outs to slow me down

So when you get a tilt table what resting HR does your Dr decide to use? For instance when I lay rested my hr fluctuates sometimes .. So do they take an average of readings?

Are you symptomatic when this occurs? If not, I wouldn't worry

I decided to stand test myself tonight I guess u don't have POTS lol. My HR went from 60 resting to 80 standing at 10 minutes. I only have POTS in the am apparently lol

Thanks for posting!

I hope so And I dont think they're hanging around here sad for us, I would love to hear more success stories

Well I took a break from running for about a month. I gave myself tendinitis from the treadmill & I already have a bad knee.. So now I'm trying to get back into the gym. I'm completely med free (besides aspirin gotta have it for my hole in my heart) soo.. Im curious as to how long it should take to start seeing some results? Cardiovascularly wise? Dr Levine says we should be cured (kidding) after 3 months, right? Im really looking to lower my resting HR. it's like 70 right now ;( kinda high for a 27 year old. My goal is 65... Any ideas how long it takes? I'm trying to do 30mins of cardio everyday at 75% of my target HR. (without hurtingy knee) I will slowly get back to 60 mins 5 x a week. Anyway, to all the exercisizers what is a realistic expectation in HR reduction? Thanks

I still find this number 30, weird! So 25 bpm is normal but 30 isn't.. But it's really 10bpm is normal? Kinda weird. I've read conflicting studies that say it has to be a sustained rise, and some say an initial rise. I guess it just depends on if your symptomatic. I never knew I was having tachycardia.. Just felt anxious, my HR goes from 70 ish to 105 ish in the first 10secs of standing then hovers between 85 to 95 depending on the situation (time, heat, etc) but I'm hardly symptomatic... And I was diagnosed Pots. I still suggest getting a second opinion, maybe with an ANS doc?

Thanks all for the great responses! I'm going to keep a food journal to see if I can find a culprit. It's so hard when eating out since yOu don't get a full break down of all the ingredients. I'm pretty sure PF changs says they're MSG free, but you never really know. I know preservatives give me headaches ... Hot dogs are killer. Maybe it is nitrates then? Well I guess I get to do more research

Thanks all for the great responses! I'm going to keep a food journal to see if I can find a culprit. It's so hard when eating out since y

Funny u mention this.. I was at the gym tonight pushing some *ahem* iron lol and was thinking I should google how to breathe when lifting.. I was holding my breath, then wooaaah I would get tachy and dizzy. I have a double whammy, I have a PFO so I'm sure that valsalva-ing that deoxygenated blood to my brain isn't good for my PoTS.

High Ana = autoimmune right?

Last night my hubby and I went out to Pf changs. I ate hot and sour soup, crab wontons, spicy scallops, spicy chicken, wine and cheesecake. Probably 3-4 bites of each item. Anyway, nothing out of the ordinary.. I drink wine 3-4 times a week.. I've never had any allergic rxn to food etc.. But last night when I went to bed my standing HR was 135 and laying down it was 95. Waay high for me, especially at night. I was instantly bloated after eating too. (I don't have any intestinal ans dysfunction) So maybe I have a food sensitivity? Or my POTsy-ness was just being wack?!? I don't know where to begin with the food allergy stuff.. Just seems weird to have bloating &bad tachycardia out of the blue.. Especially the high HR laying down.

Asheltin80-- I stopped taking florinef for that reason. I turned super crazy!! I was having the worst anxiety, numbness/ tingling etc.. Really weird stuff happened after I started it. I think I remember reading anxiety was a potential side effect.

Music lover -- is yours related to EDS? Have you always had translucent skin?

How weird that we all have this... I can't even postulate why this is... My veins stick out at night, buy really it's the visibility through the skin that is kinda freaky... Anyone know how to post Picts?