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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Testing for low or high pressure

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Testing for low or high pressure › Reply To: Testing for low or high pressure

April 13, 2017 at 1:50 am #6149
Yvette
Participant

I am having trouble getting a proper diagnosis as well. But no one has mentioned drilling a hole in my head. I did take a sample of what is leaking out of my nose to the doctor and it is confirmed spinal fluid. So that much I know, I am diagnosed with EDS and MCAS. So far the tests I have done are a CT scan of my brain, MRI of my brain with and without contrast and a CSF flow study, MRI of my neck and spine, X-rays of my neck with neck flexion, EMG and then I was sent to a cardiologist. I have heard of people getting a spinal puncture to test for inter cranial pressure but I haven’t heard of the skull drilling. Here is what I have learned so far. With High inter cranial pressure you don’t get relief from laying down I was told to recline semi upright by my doc, I personally take 600mg ibuprofen with a Mexican Coke and go see my Physical Therapist ASAP. I know that it’s high pressure when it feel like my skull is going to crack open and my teeth and face go numb and I get intense pressure behind and above one eye. The high pressure causes me to spring a leak out my nose and then I have low pressure from the leak. With that the pain is very constant and dull and awful. Not as intense as high but equally as awful. My doc told me to lay down and get plenty of fluids. My cardiologist told me to make sure to have plenty of salt for my POTS so I take NUUN tablets I use NUUN especially with low pressure days. And I still don’t have meds for this since all my tests came back normal except the CSF coming out my nose and symptoms of sometimes high and low pressure. So this is my routine and its debilitating but I have noticed I feel better when it’s sunny. I hope this helps:)

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