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POTSmom2

CSF leak misdiagnosed as POTS

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I've read a bunch of recent literature talking about patients with CSF leaks who were misdiagnosed as having POTS.  For 2 articles, see https://spinalcsfleak.org/pots-spinalcsfleak-or-both/ and http://www.painmed.org/2016posters/abstract-112/

Has anyone out there with CSF been misdiagnosed with POTS?  What advice do you have for the rest of us?

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Still up in the air on an official DX on pots (ttt was 50bpm rise to 150) but did have cranial CSF leak (confirmed in surgery) amongst a few other issues. I still suspect a CSF leak as the only thing that has helped the constant headache is a blood patch. However the neurologist that looked at it was of the opinion that if it's not on the MRI it isn't there. I'm still looking to see if this can be investigated further, but this takes time. 

From what I've read it is more than possible that those with spontaneous CSF leaks have an underlying issue that includes a strong likelihood of pots. I'm fairly sure this is probably my major current problem, and the pots symptoms would have remained unnoticed if I hadn't had fairly serious other medical issues. 

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I have read articles about the same thing. Even pulmonary hypertension as a possible alternative for POTS. POTS is technically not a disease. It is a cluster of symptoms with an underlying cause. I kind of hope I have something that can be "fixed" so I can magically get rid of my symptoms. Probably won't happen considering I suspect a hereditary underlying cause but until I have an answer I still hold on to the hope. 

By the way I have seen a an article on a CSF leak misdiagnosed as allergies. It is crazy what a CSF leak can do to you. 

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