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The Diamox isn’t working on me and so I understand this may be a spinal fluid leak which has gone undetected despite scans etc. I have lower head, neck and shoulder pain and most of the other symptoms in Dr Diana’s book and I have been taking Zantac and Zyrtec. My insomnia also seems to be related to how much I move around. If I don’t do anything, I can usually sleep but, the more I do, the worse the insomnia gets. Your advice would be appreciated. How can I help myself or find someone who can help me?
Best wishes to you all
I understand how frustrating it is—many of us can be intensely ill and can’t believe our doctors are not treating us as an urgent problem, right?! You are not alone in that feeling, certainly. If your leak is through your nose, a beta-2-transferrin test is possible (but very difficult because of the amount of fluid needed). If it is a spinal leak, imaging tests are necessary. A good site for information on spinal leaks is http://spinalcsfleak.org/ We see patients with high and low intracranial pressure at POTS Care and do our best to figure it out non-invasively. If it is appears to be a spinal leak, doctors experienced in leaks must test and repair. It is worth seeking out the experts! On the site mentioned above, you’ll see some of the experts in this field chime in. Worth a look?
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