Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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yep! same here! all year long now.....and meds and supplements that were helping now aren't so much after my crash...it is sooooooooooooooooooo frustrating. I also feel like my brain is broken after 4 straight months of this day and night.
Do you wake in middle of night Betty with heart pounding? confusion? blurry eyes? and can hardly get up to go to bathroom?
this is just cruel. I am so over this. No one should ever have to continuously go through this
Yes, occasionally I have to eat at nights.yes, please reach out anytime....this is so very difficult to go through and I haven't met many with as severe of symptoms as me.....do you get weird night time stuff too and have to eat through night? like nuts etc?
saaaame!!!!! no one knows what it is, not diabetes, not this, not that yet I am completely disabled by it at this poit with two small children to take care of too.Yes, occasionally I have to eat at nights.
Al the doctors I have meet say that I'm the most spesial patient they have ever met
no will watch today.
Can you get up at all in wheelchair to go bathroom? It has been so difficult for me because of no stop dizziness/vertigo, tachy, blurry eyes but I do my best hoping and praying this settles more.
I BARELY upped my supplements in August and had this epic of a crash....unreal.
I do the sameI use a pulse watch and goes to the toilet when my heart is at it's best (60-70 minuites after taking propranolol). Try this It helps!
I just watched it--extremely interesting! Dr. Systrom reports a lot of success using mestinon but also indicates that it enhances vagal tone and parasympathetic function (among other things). I test as parasympathetic dominant (I have neurally mediated hypotension) so I have never thought of trying it. Has anyone else had success with it who is parasympathetic dominant?Have you seen this interview with dr. Systrom?