ramakentesh

Lol psuedoephrine works great for my pots

Reduced alpha receptor sensitivity is cardinal pots.

Phenylephrine and dihydroergotamine are other options

U guys have ppts or ncs being prescribed northera?

Ccsvi has zero research basis in pots

I used to also get this. Cant really explain it. Volume loading? Mild sympathetic boost the next day? Funnily if i feel well it can bring on pots but if i feel bad it can help. Weird.

They an help with overstim but not dizziness in my experience.

Haha yeah that sounds very familiar

I can never work caffeine out. Without it im a fatiguey wreck and while my pots meds cut the dizziness they never seem to cut the endless fatigue. so i basically rely on caffeine to function but i become immune to its effects very quickly and have to increase until evrntually it starts making me crash. Mmm...

Interesting read

Hyper pots is a presentation, not a diagnosis: http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=42008

Most pots patient by definition has elevated norepinephrine levels

For me i had a week of jitteriness then vast improvememt

The problem with diy genetics is that it doesnt tell you which genes are actually expressed and which are epigenetically suppressed

Hopefully

An extension of this theory: In most conditions where autoantibodies are found that specifically bloke or bind to receptors such as in Thyroid disease and M.gravis, where there are blocking there is also often binding in a spectrum that varies from patient to patient. What this may mean potentially is that there may be a spectrum - some with only blocking and resulting vasoconstriction failure right through as a spectrum to patients where alpha 1 agonising or activating autoantibodies may be present (hypertensive responses or hyper presentations). And more interesting some may have prominent beta 1 activating autoantibodies (massive tachycardia) right through to potentially blocking beta 1 receptor autoantibodies that suppress tachycardia and cause a state of POTS without actual diagnostic tachycardia! Crazy! And ofcourse these autoantibodies may change over time, meaning that a patient miight be hyper in one period and almost hypotensive at another time. The possibilities are quite daunting.

Its weird I often read about people with POTS doubting their sanity and stuff. I guess because I go it at the age of 26 and everyone who knew me noticed the dramatic change I never really had any doubts and when docs tried to naysay me I just swapped docs. Im not judging or anything I just hear that comment quite often.

yes Naomi mine is also at night and it drives me nuts.

There is a facebook group for POTS patients involved in the droxidopa/northera trial

Working and having a body that doesnt do anything abnormal for 36-40 hours a week is very hard with POTS. Sometimes its not so bad but when POTS is bad its a struggle. Licorice tea basically kept me employed for the first years - now days I take time off and purchase leave so I can.

Just for interest purposes ephedrine is about 4 times more potent than pseudoephedrine, lasts longer and tends to build tolerance less than pseudoephedrine. For some it makes tachy worse, but for some POTS (like me) it works quite well.

Tomatoes are my nemesis

Yes. Was informed its caused by changes in small fibers

Things will turn around

All great advice Angie and parallels my own experiences