November 9, 2018 at 5:56 am #1777
My name is Josh, im 24 years old and from Australia. I have a bachelor of Science majoring in Marine Biology and approach my health from a science perspective (i.e. don’t trust anything without statistical evidence and peer-reveiwing!). I also do my own experiments to figure out the do’s and the dont’s of my condition.
I was a semi-professional snowboarder and had a bad injury resulting in significant internal bleeding and heamotoma on my left abdominal side. 6 months later i contracted a strong strain of glandular fever; something that i would never recover from to this day. These events would lead to my diagnosis of P.O.T.S by my family GP, who conducts his own research on autoimmunity and the link between underlying conditions and autoimmune complications.
I started experiencing daily panic attacks (as many as 4 major attacks a day resulting in a variety of symptoms from numbness and shaking to fits and seizures) and reactions to food i could normally tolerate, and my mental health slipped drastically to the point of suicide knocking on my door. I had a host of other ‘life events’ that occured during this time that made things worse, but the nail on the coffin was the Mast Cell Activation reactions i was having (namely intense gastric pain, tachycardia and acid reflux but a host of others also) due to the POTS condition. My struggle is like everyone else on here, with all the usual symptoms and battles- but i have found solace in my diet, exercise routine and lifestyle. In early 2017 i sent my disease into remission using a lectin-avoidance diet, acupuncture, water-based exersise (great for POTS) and lifestyle changes (the hardest part- but comprimises now bring rewards later on). If i stuck to the diet, i could do anything i could before and then some- due to the benefits of an anti-inflammatory diet.
However…early this year i found work on a farm that used pesticides routinely, and 3 times a week for 8 months i was inhaling toxins and chemicals that would send me back to that dark pit i started in, great. One day after work i went into shock, though unconfirmed i believe i was having a histamine explosion due to Mast Cell reponse from exposure to pesticides.
Fast forward to November, 2018 and my lectin-avoidance diet is not enough to keep away the shitstorm, and i am starting to see the effects of an ongoing thyroid condition that runs in the family (hair loss :/). I am quietly struggling again and am just so completely down about my outlook on life- years of suffering with no end in sight. I have started acupuncture again with some promising signs, and can get in the water at least once a fortnight without wiping myself out. I have nothing to lose and figured i might as well try this specialised diet for a month and see what happens, so thank you Mikhaila for putting yourself out there for all of us! its a crazy world we live in.December 30, 2018 at 4:33 am #1902
Hi Josh, I saw your post and had to chime in. I have a mast cell disorder (Mastocytosis) so I can sympathize with you. In my case one day I was seemingly healthy then next flat on my back for months, barely functional. That was nearly 10 years ago, now I’m mostly symptom free. Whats interesting about this disease, is it’s not a straight line from the symptoms to the disorder. There is that pesky autoimmune response that seems to confuse everything.
So let me cut to the chase. Diet is everything. I’ve been following a diet prescribed in a paper by Dr. Joneja, MASTOCYTOSIS SOCIETY CANADA. This diet more or less seems to help control my symptoms which are numerous. In the paper it outlines allowed and restricted foods. It also gives a summery of the mechanisms involved. I can provide a copy if you want me to.
All the symptoms you described I experienced them at on time of another, some of them scary as hell. Your not the only one. Hang in there.December 31, 2018 at 7:38 pm #1912
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