A lot of us have such low blood pressure that it restricts our functioning, so it's interesting that you're struggling with exactly the opposite. I'm afraid I haven't any answers, as mine usually averages around 90/55 and I'd love to be able to get it higher, but all the talk of sub-grouping ME patients has made me wonder whether this is something else that could give us clues. I hope you find strategies/meds that work, anyway!
My mom had a time for about a year and a half where her bp was spiking way up like 184/101.
She started using NAC because she was also taking Tylenol for pain and that is suppose to help heal the liver from any Tylenol damage. (She was getting jaundice anytime she took it.)
Anyway it helped her liver and all of a sudden her bp was back in normal range or even sometimes too low so now she just takes a pinch every once in a while when she's on the Tylenol or notices it going back up.
Start low if you try it to find your dose.
Also, I have extremely low bp 86/58 to 91/56 and if I drink black tea it gets worse. Some studies online say tea can help lower bp.
Hope you find something. It's really scary when it spikes like that. (The doctor did prescribe something but said only to take it if the bp stays elevated like that for an hour. We never had to use it though especially after finding the NAC helped.)
Edit: One more thought--some pain meds, like ibuprofen, can actually raise bp. Also some supplements like the amino acid Phenylalanine can too. WebMd says that many proteins like meat, fish, eggs, cheese, and milk contain this. I'm not advocating a vegan or vegetarian diet. Maybe just cut back a bit if your intake is excessive and see if that helps. ??
You have probably done this,
but what comes to my mind, is:
Have you explored possible reasons or causes of the high bp, so you might be able to address those, and thereby help the bp and the rest of your health?
It often happens to me.
Perhaps because it takes me a long time to write a sentence, so I am often writing at the same time as someone else is,
or 3 people have written and posted replies, while I am stuck on a sentence of mine!
I just want to clarify , that I did NOT mean that you should not take bp meds.
I would not ignore high bp, and I cannot advise who should take meds . Or which ones.
I hope you get other replies that have helpful info and input, and experiences, about bp meds, if that is what you are primarily seeking.
If my bp becomes high and remains high, then I would want to know if I had some underlying medical condition or disease, causing or exacerbating it, or accompanying it, that is related to the bp, especially if the condition or disease is treatable and significant.
Such as perhaps I would want a cardiology work-up, to see if a heart or valve or blood or vessel problem, is constricting blood flow.
And there are likely many more , other illnesses that possibly could cause or accompany high bp, (or not) that you might want to know about, or have investigated. Or ruled out.
I am not a doctor and cannot list, and I do not know what they might or might not be, or if any of them, are a factor for you, or not.
But again, perhaps a bp med is the best option for you, I don't know. Just wanted to share my thoughts, in case they are helpful.
I have tried diuretics, electrolytes, ACE inhibitors, ARBs, and CCBs with very little effect. My high BP is caused by adrenergic antibodies, and propranolol (a beta blocker) and Mestinon together, 3-5 times a day works best.
All the standard BP advice is useless. The calcium channel blocker almost killed me - many ME/CFS patients don't have normal flow of calcium throughout their bodies.