I've been diagnosed with POTS (via tilt) and ME for a few years now and it was fairly well managed I was a bit limited in walking, I don't have EDS and prob not hyper-adrengeric. Then 5 weeks ago it got a lot worse, I started having worse anxiety and getting more fatigued so much so I found it hard to sit up for evening meal and my stomach symptoms of trapped gas were also worse and seemed to be in turn affecting my POTS symptoms and giving me chest pains that were relieved totally if I burped.
Then 3 weeks ago shortly after dinner I had a sudden hyper feeling like I would imagine if I'd had lots of caffeine (but I never have any) and had a brief spell of high heart rate and sweating nd then my legs started shaking and spasming. At the time I assumed it was a panic attack. After that was mostly bedbound with short trips downstairs and was slowly improving until monday when I had the hyper feeling again on waking and none of my usual anxiety interventions would help. Then after lunch I had another high heart rate spell and called for medical help, para-medics were sent and my ECG/EKG was fine and blood sugar normal and BP 145/80 (it was 115/75 after they left on my home monitor so I suspect it was up due to the stress of them being here) and normal blood sugar. They didn't seem concerned about the hyper feeling. I felt hyper all day until my wife gave me a very deep massage and then I had the legs spasm/shake again.
Yesterday I was alright but today had another short spell of high heart-rate from sleep (meaning I only had 4 hours). I called my GP but her attitude was that she couldn't help me unless I could get to the surgery as they only do home visits for the elderly. She felt it was likely all POTS + anxiety and should up my Ivabridine and come in if things didn't improve, even though I told her I can't get downstairs.
So what to do?
How to improve myself and get better without further medical support or so I can get more tests? I've had a lot of anxiety recently, but how to manage my POTS, sleep and anxiety around these occaisional hyper feeling attacks (these have only happened very rarely in the past and not all day like monday)? I need to build up sitting so I can at least cope with wheelchair rides and be able to manage getting downstairs.
Feeling really lost as rarely been this bad. Any advice?
Has anyone else had the hyper-wired feeling before a heart rate increasse due to their POTS?