Tella
Senior Member
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Have u been diagnosed with one? If so how did it happen and how did u treat it? It seems I may have it and it can be dangerous but hard to diagnose and treat ahhhh
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Have u been diagnosed with one? If so how did it happen and how did u treat it? It seems I may have it and it can be dangerous but hard to diagnose and treat ahhhh
I was concerned about this due to some symptoms last year, but fortunately a neurologist examined me thoroughly, and a CT scan confirmed it wasn't happening. I am glad.
It can be seen through close and deep examination of the eyes....if you know what you're looking for, so I was told.
Interesting i.e. you can examine the eye's to establish whether there is a problem with intercranial pressure.
This is an area of interest for Dr Diana Driscoll (author of the 'Driscoll Theory'), an opthamologist who has POTS and EDS herself and has a POTS clinic.Yes, it's not so much the features of the eyes themselves, but what can be seen through them and behind them. But only a neurologist (or possibly a good opthalmologist) would probably be able to spot it (or if it's absent -not, as the case may be.
Interesting! Has anyone been to the clinic or knows how exactly they treat it? It seems they do standard tests, try to look for intra pressure, give u supplements but not conventional meds. Not sure what else is there to do? She says she and her kids got curedThis is an area of interest for Dr Diana Driscoll (author of the 'Driscoll Theory'), an opthamologist who has POTS and EDS herself and has a POTS clinic.
https://potscare.com/about-us/
http://prettyill.com/ (there's a patient forum on this site)
I have constant pressure headaches and pain at the back of my neck, base of skull. I am suspecting cranial cervical instability. As soon as I can travel safely (thanks covid19 for the delay 😭) I will have an UPRIGHT MRI scan and send it to Dr. Gilete in Barcelona. In the meantime, Tramadol/aset, Benedryl, laying flat, in a dark room, with noise cancelling headphones and ice ❄️ packs are my tools. They only take the edge off my pain but it's something. Much 💕, AudsHave u been diagnosed with one? If so how did it happen and how did u treat it? It seems I may have it and it can be dangerous but hard to diagnose and treat ahhhh