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Everything posted by brethor9

  1. Hi All!! So I have another odd question I am looking for input on?? Over the last year or so I have been having alot of issues with my spine, nerve pain etc.....about 6 months ago I had a spinal tap to rule out MS and other diseases unfortunately a few days later I developed a spinal fluid leak and had to have a blood patch. Here is where it gets weird; when the specialist did the patch initially it mirrored all of the severe head pressure, etc I had been suffering only amplified by 1000...then 2 days later I was almost symptom free!!! That lasted for 3 weeks then I hurt my back again and within hrs was completely bedridden by symptoms again....a 2nd blood patch followed...again with the same results...weird right??? I was doing ok until last week when a uninformed Dr in emerg decided he was going to adjust my spine without even asking my history (frightening right?) before I knew it the damage was done...again several hrs later I was unable to walk and bedridden for over a week to present. My specialist is doing an MRI to rule out a CSF leak but his other theory is this.... when I get hurt or severely stressed could my body be catecholamine dumping?? and causing these strange episodes??? I have been diagnosed with very high amounts of adrenaline and severe sensitivity to norepinephrine......these episodes literally make me feeling like I am having a stroke...severe lightheadedness/head pressure, neck pain, complete loss of balance, migraine, massive surges, nerve pain, burning toes, numbness in left arm,chills..the list goes on and it lasts for days to weeks...does anyone know anything about catecholamine dumping syndrome?? I am still waiting to hear from my specialist...I would love any input Thanks Bren
  2. Thanks everyone for your kind welcomes!!! I am literally overwhelmed by everyones knowledge and kindness. Its so nice to know I am not the only one suffering from this sometimes "invisible" disease. There is light at the end of the tunnel.... Bren
  3. Hi Everyone!! First off I just want to say thank god this forum exists!!!! If it wasnt for all of the people on here and the wealth of information I would know absolutely nothing about this disorder! So brief background; I am a 36 yr old wife and mother of 1- 8 yr autistic son. 3 years ago I started suffering from subtle symptoms at first..mainly 24/7 head pressure with lightheadedness fast forward to my partial hysterectomy in 2008 and suddenly afterwards I was completely engulfed by physical symptoms I had never battled before mainly absolutely horrid adrenaline attacks which my fam GP passed off as panic attacks although I had never ever suffered anything like that. Over the next several years more and more distressing symptoms came about......episodes where I literally felt like I was having a stroke, severe balance issues, severe lightheadedness, mottling in my legs, my body temp would tank so low I would be having hot baths 3x a day just to keep warm and yet once I was in became so hot I had to get out. The worst episodes came at night...adrenaline surges that would wake me from sleep with pounding head pressure, loss of balance, heart rate through the roof, shakes so bad, sweating and then chills so bad...these episodes would last for hours and were utterly exhausting and terrifying.... emerg would do nothing. Finally after firing my GP and stumbling on some good specialists I was sent to an autonomic facility at Hamilton Mcmaster Hospital here in Ontario Canada where they finally diagnosed me with; POTS with beta-adergenic hypersensitivity and highly elevated norepinephrine at baseline and upon changes in position along with hypovolemia. I have been started on a beta blocker (which I find causes nothing but chest tightness) and florinef which helps but I find finding the right dose is difficult. I also suffer from severe spinal pain and have been having some nerve issues because of that. So my question to everyone one is....am I considered to have Hyper-POTS? what medications have been the best for others? Does anyone suffer with nerve pain and is there a med they can recommend for that?? Sorry for the long post....its so overwhelming!! and when you finally find people who understand....I just dont even know where to start lol!! I would love to hear from anyone any advice or guidance would be hugely appreciated! Here in Canada this disorder isnt heard of much....makes it hard to get good information Many Thanks!! Bren
  4. Diagnosed May 2011 After 3 yrs of ****) with OI/POTS with beta-adrenergic hypersensitivity and elevated norepinephrine baseline and during orthostatic stress....so glad to have found this website!!!! scary stuff!!!

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