Per my sweaty feet, one neuro gave me the 24 hr urine collection test for catecholamines a few weeks ago - was negative.
Am taking valium (2mg) 3x per day and metoprolol (25mg) 2x per day. I have have stopped the Trazodone (50mg) at night for now because another Kaiser neurologist had a theory on Porphyria and is testing me for that and wanted the Trazodone stopped - looking like it will be negative, though.
As to why valium, it's because I started having these autonomic storms of BP and HR going sky high and chest pain/pressure. It was horribly scary, and they'd come out of nowhere, with BP 170's/110's, and it felt like my chest would explode. I ended up at the ER - could not get any help at all there - told panic attack. Was not a panic attack. Could not get out of these storms. Found this -
Amyotrophic Lateral Sclerosis with an Acute Hypertensive Crises and a couple other PubMed docs referencing valium as treatment for autonomic storms. Also read about others treating autonomic storm high BP with metopropol in this forum. Desperate to get relief, asked doc for valium and metoprolol. So, yeah, was my idea to take them out of pure desperation because I just cannot medical guidance for this. These autonomic storms are apparently rare, and I have no diagnosis, except MIP/MEP being low, so I am flapping in the wind, increasingly weak, needing a wheelchair for longer distances, and basically don't have energy to leave the house except to see a doctor. Episodes of being horribly short of breath out of nowhere, even with O2 not being low on oximeter...so am afraid to leave the house - no portable BiPAP.
Every day/night is a struggle to sleep and breathe, and I'm getting worse. And yeah, heart and lung tests normal thus far (except MIP/MEP). Wore a 24 hr monitor for heart and had echo test and EKG(s).
Abdomen has twitched and shrunk, intercostals have shrunk and deformed my back.
I will have an overnight sleep study next week, tomorrow a swallowing test, and hopefully soon, EMGs. ok, I will post again afterwards and hope I make it because every day/night is a challenge of breathing problems and chest pain/pressure. Things that are a week away now seem like a year. I can't believe how much I'm suffering and with no recourse - in the ER, there are breathing problems involving heart and lungs - muscle breathing problems or autonomic breathing problems are not even acknowledged there.
I never have taken these types of drugs in my life, and I suspect they are having some negative impact, but with them, the BP goes 140/95 instead of 175/115 during the storms.