I like your idea of doing the 4 times a day cortisol test . Why don't you go ahead and order that now? this way you can see if these must stay in bed symptoms are due to high coritsol, low cortisol, or have nothing to do with cortisol altogether.
I should do that, it will take a lot of effort though since last time I tried it I needed one from the UK (I am in the Netherlands where we don’t have it) and DHL didn’t want to send it back
can you say more on melatonin affecting cortisol during the day? I've been taking a small amoun t in a patch at night about every third day. Haven't noticed any bad effect but at this point who knows.
I have read about it once, basically melatonin and cortisol are opposites but you likely know that already. It is often rumoured that messing with your natural melatonin levels affects cortisol too since the body usually balances them out. Just found this study which didn’t find any effect though: https://pubmed.ncbi.nlm.nih.gov/8548054/
to give input into what you asked @Booble, maybe remind yourself that whatever you think now will change?
I know that it will change, it’ll get better from here at some point but my main concern, and you address that below, is that I have to do it all over again. I spent almost 3 years in bed and from my lowest point in early 2019 it has taken me 2-3 years to get back to the level I was at a week ago. My POTS builds up very slowly, I went from sitting cross-legged in bed for 10 mins per day, to sitting normally in bed, to super slowly expanding the time sitting in bed to hours per day, then sitting on the couch, then on a chair, then on a higher chair, then standing, etc. My ME is not that bad, fatigue is rarely my limiting factor, it’s always POTS and especially OI. Anyways, right now it just feels I’m all the way back to square 1 or even lower than that (I literally can’t sit upright without my heart rate going up quickly and getting air hunger). It feels my nervous system did a hard reset but maybe and hopefully I’m just panicking and my body is just reassessing and finding a new balance. I’d be fine if that new balance was just sitting on the couch but there’s just no way I can handle having to be bedbound long term again. I can’t do it anymore. I just can’t fathom the thought that everything I built up in years was lost in the matter of an hour.
what was the trigger last time? that sent you to bed?
It was a very slow process of multiple small relapses. Adrenaline rushes always give me relapses, and early on, everything I did that was mildly stimulating, including watching a sport game or even masturbating, gave me an adrenaline rush and subsequently worsened my OI. Staying upright for longer than my body tolerated caused a relapse and worsening of OI too. In early 2019 I had a consistent series of relapses which over the course of a couple of months put me in a similar state to where I am now. Then my doc put me on propranolol which brought my adrenaline rushes down and calmed my ANS and following that moment my POTS has basically always improved.
look up the humming and deep breathing to turn on the parasympthetic nervous system. may help stop the runaway stuff.
I do a lot of deep breathing, thanks for the tip, will check out the humming too.
Can you go to the bathroom by yourself?
Thus far, yes, I try to stretch my legs and just walking a few steps every every few hours because I don’t want to decondition so quickly. I also try to spend some time in the living room on the couch just to not get super sensitive to stimuli again
Thanks so much for all your attention and interest in my situation, I’m very desperate right now and every little thing I can cling on too helps