Could you explain what that is as I haven't read the thread? (I also tried to look it up on the Internet but it was showing other things instead of a health condition.)
Also I don't think you need to leave the forum necessarily especially if your disease is similar to ME/CFS.
You might even be able to help someone else here who also has OCHOS but is undiagnosed. ??
@Mary was a moderator so maybe she can say if you have to because of guidelines.
@Judee , I’m so sorry I didn’t reply to this at the time.
OCHOS is orthostatic cerebral hypoperfusion syndrome. Basically it means having an abnormal drop in cerebral blood flow when you are upright, but no unusual changes in heart rate or blood pressure related to being upright.
Measuring cerebral blood flow needs to be done with specialised equipment, so people with OCHOS might slip through the cracks because their problem can’t be “seen” in the same way that POTS or orthostatic hypotension can be.
Dr Peter Novak, the doctor who described this syndrome, has diagnosed at least three people with ME/CFS with OCHOS as well (he mentions it in his paper). Maybe more by now, as the paper came out in 2016.
The treatment for OCHOS follows two possible paths, depending on whether the patient tends towards low blood pressure or high blood pressure. (Note that these are overall tendencies, and not related to blood pressure going up or down during a standing test.)
If the patient tends towards low blood pressure, they are treated with typical orthostatic intolerance measures, such as compression garments, increased salt and fluids, fludrocortisone, maybe midodrine.
If the patient tends towards high blood pressure, they are treated with vasodilators to lower the blood pressure and counter what Dr Novak believes is abnormal vasoconstriction in the head that prevents enough blood getting to the brain. He usually starts with a calcium channel blocker – just the normal kind you would take for ordinary high blood pressure.
I’m in the high blood pressure category, although my blood pressure didn’t go up until about 15 years into being unwell. I am getting some relief from taking a low dose of two vasodilators plus I’m trying a couple of supplements off my own bat.
Initially I took a standard dose of a calcium channel blocker and felt great for a week, but then side effects showed up. Frustratingly every class of blood pressure medication either causes me insomnia or reduces my urine output when I get near a therapeutic dose.
Sorry for the long and late reply, but hopefully it might help someone.
