Twice in one month...and probably never again

So this happened today and may never happen again...2 doctors said I was right all along. In the same calendar month!

Cardiologist let me out back into the world but I'm still on activity restriction mostly. He said that the way my BP numbers were before the LP and what happened directly after proves that my csf pressure is contributing to the BP changes. Because the BP meds aren't controlling any csf pressure, it's likely that the meds are working but look like they aren't because the csf pressure is causing my body to freak out. He also said that pulling as much as they did off proves that the bigger and faster the change in my csf pressure, the harder to control the BP. He said it's very likely HBP was always a symptom and not the true issue.

My BP has always had 2 cycles, working good meds or not (sometimes low) or uncontrollable. It always stumped him because there was a never a logical reason why it was such a problem sometimes except I said I was in pain. Even in a hospital settings, it could take my regular meds plus IV meds to control it over days when it got really crazy. But now it's making sense to him. He doesn't understand why and how yet, but he thinks my statement almost a year ago that it was the IH all along was right.

He also pulled me off my POTS med. He originally said to call neuro then said stop it then call them. That med shouldn't be in my system right now.

And he said no more spinal taps lol I said how else was I going to prove to the neuro-ophthalmologist that my pressure was high? And how would I have ever proved to you that my BP was related to my IH issue? He said good point but don't prove to them any more with a tap lol

#IH #braindisease #chronicillness #chronicpain #ER #headpain #highbloodpressure #hospital #ih #IH #IHLife #IHer #IHLife #intracranialhypertension #InvisibleIllness #blog