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Time: 9:57:42 AM
Remote Name: 22.214.171.124
Consult a physician about a Tilt Table test. Is anyone on medications for this. I was diagnosed yesterday from the Tilt Table test and was prescribed a Beta Blocker
I was diagnosed with VVS at age 10, went through blood tests for diabetes, an EEG to test for epilepsy, etc. Vaso-Vagal Syncope was the diagnosis, although now I believe I really have Reflex Anoxic Seizures, which I believe is a different disorder. (By the way, there is a charity organization out of the UK called STARS, which is a support group for people with these and related disorders - might want to provide a link! http://www.stars.org.uk)
The medical community is not very sympathetic or supportive, although my last contact with regards to this specific disorder was 18 years ago. My pediatrician, who did order the blood tests and the referral to a neurologist to get the EEG, said it was probably 75% psychosomatic. I can't say this is completely wrong, as I have learned to control some of these episodes over the years without medication. I now have many more "near misses' than actual attacks. But the fact that my body still has this reaction to certain kinds of pain can't point to the psyche, especially with the types of involuntary reactions I describe below.
When I experience sharp, unexpected pain, I have episodes. It's difficult to manage that part, because not all sharp pain produces this response, and it's been different kinds of pain each time, but always sharp and unexpected. Twice abdominal cramping, once hitting the bridge of my nose on a door frame in the dark while walking to the bathroom at night (it was funny later), once hitting my elbow sharply on a car door, closing my finger in the stall door in a bathroom, standing up suddenly during a time when I wasn't eating enough salt, the list goes on to total about 15 episodes in 18 years. My blood pressure is almost consistently around 90/65.
I experience tunnel vision, a rushing in my ears, and bright and black spots in my vision. I have enough time to sit down. I black out, but I am not aware of having passed out at that moment. I actually start to dream, having no idea in my dream that I am currently passed out. I have full dream sequences, starting in the middle somewhere. Then, after what I'm told is about 30 seconds, I hear a rushing again, and I start to wake up. My body is very, very cold. I am shaking. Sometimes I start crying and feel terrible for hours. Sometimes I get nauseous (which I'm told is the adrenaline starting my heart beating again). I have also found a slight correlation to having my period - I usually feel terrible and have very bad cramps, so it kind of sets the stage.
The reason that I believe that I have RAS and not VVS is that I had an episode in the hospital 5 years ago, and the doctor told me that my heart stopped, and I had the classic stiffening of a seisure-like state, and the dead-white face of RAS, although he referred to it simply as a syncope event also.
Anyhow, the first step to learning to control these events is knowing that you might have some control. It doesn't always help, if the events are very sudden, but it can sometimes. When I first got this, I would try to remain standing, but now I always sit down, and this seems to buy my some time. I realize the I'm holding my breath, and I start to try to breathe deeply, pumping oxygen and blood through my heart to keep my BP up. I can bring myself back from the stage where I can start to hear my blood rushing from my head. I have had about 15-20 near misses like this (one three days ago) from using breathing and trying to regulate my body's response. It might not work for others, especially those with more severe or frequent reactions, but it has worked for me. Good luck.
From: Lisa M.
I just got back from the doctor where I passed clean out after a steroid injection. He mentioned "vaso-vagal" a term I'd heard my rheum. say before, so I got on line and found this. I just read your post and now I'm eating a bag of pretzels and boy i REALLY feel better, fairly instantly! No wonder I like salty foods so much!
Also, as a former bodybuilder, I can say a lot of nutrition info about salt and especially FAT is dead wrong. Only people who already have high blood pressure, heart problems need to worry about overall fat and salt, although lots of water and good fat sources (nuts, olive oil) are essential.