April 23, 2014 at 7:22 pm #693
I had a really severe episode over the weekend. I feel as if it was a severely intense episode of what I go through going to regular basis. I am trying to figure out what this is. Does anyone have any ideas? Thank goodness it lasted less than 15 minutes-I would definitely have had to go to emergency and I don’t even think I could get to the phone.
Here are my symptoms, that left me curled up in a ball on the ground moaning in pain:
Heart pounding EXTREMELY hard
SEVERE pressure in sinus area-I have never felt anything like this before it brought me to the ground
Could not think straight – really out of it
I cannot put into words how severe each of these symptoms were. They brought me to the ground and I could not move I just laid there moaning. Because of the pressure in the sinus area, I am wondering if this is hydrocephalus related? I wonder how high my blood pressure was…
Has anyone else experienced anything like this?
MJApril 25, 2014 at 9:49 pm #5002Dr. DianaKeymaster
Oh, MJ, I think I can relate! Was it anything like this? I turned on the camera during one of those episodes here: http://prettyill.com/videos/watch/emergency_3_months_post_angioplasty (you may have to cut and paste it). Look familiar? 🙁April 26, 2014 at 4:18 pm #5003
Oh wow…good that you got it on video! So what was happening for you? Was it Hydrocephalous related? Or did it have to do with your angioplasty? Was Hydrocephalous causing POTS for you? BTW, I could TOTALLY hear the squishy noise in your ears!!!
I don’t get squishy ear sounds, but I ALWAYS have ‘crackling’ at base of skull/ neck when I move my head – eg tilt back, turn to side; anything. DO YOU THINK MY EPISODE WAS HYDROCEPHALOUS?
I have high BP with POTS, rather than low – but I do get low too, and I know you have the high BP if I remember correctly, and I am just wondering if the high BP and pots could be caused by hydrocephalus?
I want to come to the states to get an upright MRI – my horizontal MRI doesn’t show much, and I am pretty sure about Hydrocephalous, and very sure of CCI. Should I get an upright MRA as well? Where should I go?May 1, 2014 at 11:04 am #5004Dr. DianaKeymaster
Hi MJ, I don’t know if what was happening to me is the same as what is happening to you, but when I reduced my intracranial pressure, these episodes basically stopped. When Diamox wears off (usually in the morning) and/or if I’m reclined, it happens again, but I know what to do (take Diamox, get vertical). I *think* I was tending to sort of “cork”, if you will, at the top of my spine — that is hard to reverse. If the pressure above my brain was lower than the pressure in my spinal canal, encouraging a sort of Chiari, that’s what would happen. I HAD to get my brain to “float” more naturally, then my CCI and retroflexed odontoid was not an issue any more… No neurosurgery was needed, although I had neurological symptoms…. Big hug…May 1, 2014 at 11:53 am #5005
Ok, thanks Dr. Diana. No one would give me DIAMOX before, but I can try again…I also have a video of my pupils dilating in and out, when I have my symptoms in the evening. To me, evening symptoms and pupils suggest Hydrocephalous…
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