I received confirmation yesterday from Dr. Rosner for a couple of other conditions I’ve been diagnosed with on top of Chiari. I have POTS (Postural Orthostatic Tachycardia Syndrome)/NMH (Neurally Mediated Hypotension), as well as mild scoliosis. Both are secondary to my chiari. POTS/NMH are dysautonomia conditions that basically means that when I stand or sit up, problems occur. People with POTS/NMH have problems maintaining homeostasis when changing position (standing up, reaching above your head, etc). In a normal person, when they stand, the 10-15% of their blood that naturally pools in their limbs while sitting quickly redistributes through a series of reactions which causes it to rush to the brain and heart, and they never notice. People with POTS/NMH have a different response. More of our blood pools below heart level and the longer we remain upright, the more it continues to pool. This is exaggerated by an increased heart rate pumping more blood down and a drop in blood pressure. This results in too little blood flow to the brain, resulting in a light headed feeling, nausea, vomiting, dimming of vision, etc. Following episodes, you feel tired and extremely fatigued, with a brain fog feeling. This can happen upon standing up or even remaining in a sitting position for any length of time. Symptoms include lightheadedness, exercise intolerance, fatigue, visual blurring, weakness, imbalance, headaches, shakiness, mental fog, intolerance to heat, sweating and clamminess, etc. Any time my adrenaline is peaked (scared, excited, nervous, anxious, moving a lot, etc), my heart rate increases, blood pressure drops, and symptoms develop. A big reason why my brain and body isn’t connecting properly is due to the chiari. So Dr. Rosner hopes that with surgery, I will get some relief. In the meantime, I am to avoid caffeine (which is awful since caffeine is about all that helps my chiari headaches), avoid overexertion, wear compression hose on my legs to prevent excess pooling and stay hydrated. Although I’m not happy to be diagnosed with anything else, it explains a TON of symptoms that were mildly chiari related, and helps connect the dots. It’s just one step closer to getting all of this mess figured out and treated accordingly. We discussed this at my appointment, and once again, he’s the only dr who has caught it. I hesitated about putting anything on here about it, but I kn0w a lot of people worry and are praying for me, and I feel like I can do some good out of education on this. These conditions are closely related and often undiagnosed. So, if it helps any of my chiari friends, its worth it!
Posted on: Wed, 13 Aug 2014 01:35:38 +0000
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