i was told today that fludrocortisone can take a while to build up to a high enough level in your body before you notice an effect (2-4weeks), but it also tends to be long lasting so once its started to work you may be able to miss the odd day or two if you forget to take it etc without too much of a problem.
my cool vest was amazing! i LOVE it even more now! it was really hot in the bus on the way there and we got stuck in traffic so i was in there for over 2hours and would have been really ill and heat strokey without it. was 40mins late for my appointment but the lovely autonomic team still saw me (usually you'd be refused if you're that late) but had to wait a long time. the actual appointment went well too, although i was feeling like death and struggling to speak. i'm gonna try midodrine as salt and fluid loading isnt really working and he said he could clearly see it's not working as well as we'd need it to (as i was as white as a ghost and my feet dark purple, just couldn't stop the pooling today), although i was commended on my initiative at getting and using the vest without any prompting from one of the team etc. my hr and bp levels are still very variable but my symptoms are bad enough that they think it's ok to attempt the medication, even though its riskier in me due to my randomness
i'm being sent for another test to check how much i pool in my tummy after i eat cos my symptoms increase tons after i eat and i often really struggle to stay conscious. they scared me by saying i may have to consider octreotide if it's very bad as i looked pretty sick during the appointment and i'd had my ensure drink about half an hour earlier so my extra symptoms may have been from that (as after it i felt b****y awful but 2hours later i felt tons better.. annoyingly my appointment was all over by then... actually, i had a worsening of symptoms half an hour after my chocolate bar too.....). i hope the symptom increase is a coincidence and just related to my tummy rather than my PoTS... octreotide scares me as it comes in a syringe! :^o
actually, i must have been sicker than i realised today as i saw 2 of the team and each one repeatedly asked me if i was ok, they looked really concerned but i totally didnt register this until i got home and laid down and rested a bit so brain turned on.... i usually look really healthy, even when i feel ill so i must have been really very sick for it to show, and for them to be so concerned when they see PoTS patients everyday and are so used to the symptoms that they must seem normal...
bloomin knackered as i was out from 12.30 till 7.40pm.........all for one appointment!