I am new to group and was diagnosed Chiari 1 in 2006, cci 2008(eds classical in 2008) but my spouse “poo poo”ed on the eds and cci diagnosis. Have had the dizzy, chronic pain, fatigue , etc. seen all the PCP, cardio. ent, Neuro, Neurosurgeon, etc Have not worked since 2008 due to my symptoms. Just found Mayo clinic and had to force my cardio to refer me to them for the autonomic testing. My previous doctors all awful. never would refer me when I asked for a Vit D test, they said NO. and now this cardio said NO. I had to threaten to call the medical board! Anyway, saw the Neuro, he did the ttt, only had me upright for 10 min , it did not trigger my symptoms. but did trigger erratic bp. He diagnosed me with Orthostatic intolerance. I also, have mine trigged when I go up my 16 stairs of my house, it will ususally trigger my heartbeat to 180 . I told the Neuro at Mayo this. He started me on 2l water day, salt 6g day, elevate head of bed, compress stocking, exercise daily, it is helping some, I can feel the difference. I have gotten my Vit D up from 11 to 30 now. Now the doctor wants to do a CATECHOLAMINE BLOOD DRAW TEST. What is the point of this? is it costly? It says will take an hour and a half. drawing blood at 30 min and then after 10 min of standing?
Hi Stayingstrong,
Oh, so many of us understand the bad-doctor experience! It doesn’t help with your spouse being unsupportive either. If he understands the Chiari 1 thing, where your hind-brain is escaping down your spine, ask him to imagine what happens when that rogue piece of hind-brain is getting battered by the back edge of your ‘skull hole’ (foramen magnum), every time your head shifts – it’s not going to help it any, is it ?!
I had my catecholamines taken during my tilt-table test. I’m not too sure (Dr Diana’s probably the best one to answer this) but, from memory, it’s to check how your Adrenaline, Noradrenaline and Dopamine react when you stand up. For most of us with ‘regulatory’ problems the Noradrenaline goes up too high. I’d say, it’s probably a good measure of part of the problem. What treatment do they intend to give you, as a result of this test ?
Regards
Barbara
(UK)