Mytwogirlsrox

Have you looked into mast Cell issues? I thought dematographia was something they look for ?!?! I might be wrong though

Interesting! Thanks for sharing!

I'm not from Nebraska, but I was interested in your story. I saw in another post that your pots came on post pregnancy. Mind sharing your story?

I had whooping cough when I was 16 years old, I think I was on DayQuil/nightquil for 6 months lol

Sounds like when my baby wakes up unexpectedly from a deep sleep. She shakes and shakes almost like a seizure...she is almost 2 years old.. I thought it was kinda normal for kids (I know your not a little kid) I wonder if there is a name for when little kids/ babies do it? Some sort of clonus maybe? I don't know, but I wonder if it's the same thing?

I have weird aches and pains too. Sometimes It's on the top of my hands, back of my arm, my forearms.. Sometimes it's weird pinching sensations... I swore for a long time I had MS. My leg would go numb for days, my hands would burn etc. my anxiety was through the roof at the time, my cortisol was super elevated and my potassium was low. (I started Florinef then stopped--depletes potassium) when the anxiety cooled down so did my numbness and burning sensations. However, the aches and pains still Plague me I have a cold right now, and it seems a lot more noticeable.

Contact dermatitis? Any new soaps/ lotions or detergents?

I wish we could have some sort of open forum q&a with researchers.

I would be really interested in knowing if any of these study patients with pots had positive anas or sed rates or anything to indicate a possible autoimmune problems in the first place. And the population was so small in this study, I think it's great that this study was performed, but 10 people?!? That can't represent us all! What if they chose only patients with positive Ana's? Regardless, im la they are investigating pots deeper!

I'm battling asthma/ reactive air way/ allergies/ eczema blah blah with my 3 year old and 1 year the past couple months! And now my youngest has croup! Wheezing, barking, strider etc.. These girls have been on more prednisone in the past month! They're already on singulair, I just feel like health wise my little family is falling apart! Although my pots is not bad, my anxiety is through the roof. I can't sleep, I'm glued to my one year olds pulse ox, thinking she is going to go into respiratory failure or possibly be damaged forever by this virus! I would just like to say down with POTS for making me into a health anxiety freak!!!

I've had pheo testing as well.. I cried hoping it was in fact a pheo & not just pots & anxiety

Do any of you POtS + EDS people have any valve problems? I wonder if the relationship is because of structural problems in the heart also?

So do you typically get an EDS diagnosis before a POTS dx? Or vice versa? And since it's hypothesized that "loose" vessels causes POTS in EDS does that mean it won't get better or go away? Does mididrone help tighten up these vessels?

Could it be acid reflux?

I know! Im pretty sure I have health anxiety now.. When I take my babies to their dr appts I have to fight tooth and nail to not pass out lol.. I have vasovagal syncope too .. Real Exciting! Honestly though, I couldnt have crawled out of this hole without Xanax and celexa. I was literally curled up in bed, not sleeping or eating crying thinking I was dying .that was in march of 2012, now I'm applying for nursing school, doing spin class and Zumba. Living my life! Oh I also went to a counsellor

Coffee & diet coke. I think the vasoconstriction properties help me. I have issues when I'm by suped up on coffee lol

Hi, I can totally relate to the anxiety. It's my most disabling symptom. My attacks come out of no where, not positional in nature at all. I have come to accept this as a part of pots. I've never had anxiety prior to pots, so it must be pots. I Do however think that things the relieve panic help me. Dr stressing my life is a major one. I try to not get bawled up anymore. The more stressed I get, the more anxious I get then it seems like the attacks happen more frequently. Have you started journaling? That helped me identify situations that trigger.. I don't avoid those situations now, but I will do breathing techniques to manage during a trigger situation. Plus a lot of positive thinking! This is pass.. YOu have had enough I'm sure to know that you will not die today from these attacks. Mine usually last a few Minutes 10 at the most, so finding somewhere to sit breathe and think positively helps a ton. I had to start with celexa an SSRI though. I don't know I you have tried this particular one, but I was per scribed it for anxiety/ depression and it actually really helped my pots. My blood Pressure stabilized, and my tachycardia dropped about 15-20 Bpm plus the anxiety stopped. I had to take it for approx 4 months to see results, but it got me into a better place. I built up my confidence during that time. I have now been off of it for 2 months. I have little attacks maybe twice a month, but I can cope a lot more now. it might be worth trying? Exercise now really helps calm my attacks. Anyways, I hope you find something that helps. Like I said, I can relate to being miserable From anxiety

What about your blood pressure are you hypotensive during these episodes? Are you hyperventilating by talking too much or hypercapnic? I can somewhat relate.. I get flashes or moments of over stimulation I also have NCS so then it feels like in gonna pass out lol Im buckets of fun

Jangle-- if that's he case then I'm hyper too lol. Have you had your catacholamines tested standing? I haven't, but I have anxiety, hot flashes, sweatiness need to move move move. Sometimes, I feel so uncomfortable in my skin like I could burst out of it ... Weird, it has nothing to do with posture though

Wow, that's great that you have more answers! I hope that this helps you feel better. I have researched EDS quite a bit, I think I have EDS tendencies... I'm sure that people on here have more first hand information. I know it can cause POTS because your veins can loosen up due to the problems in connective tissue. I'm so happy for you though that you are finding more pieces to your puzzle.

Kay... Crossfit... Awesome! I'm interested I trying it

Thanks for sharing yogini. Sometimes I get some wonky sensations when I work out too

Goodness.. I've felt such a array of feelings since my diagnosis. Today I feel like I'm rejecting it

Yogini what happens when you exercise upright? Just curious...

Interesting! I know we have diurnal variation. However, I'm dont have the 30 Bpm increase unless it's after spin class or getting out of bed in the am. It's so weird. I don't diurese at night, so it must be something like vagal withdrawal in the am? Does anyone know what normal is? Like what does a normal persons heart do right out of bed? I've never seen a comparison study