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ChristinEdwards

Eating Disorders and Dysautonomia???

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I was on Instagram yesterday and came across a girl with bulimia who has pots. I have been in recovery from severe anorexia-restrictive subtype for about 2 years. I know pots and dysautonomia are not rare I just thought that was interesting. Wondering if anyone else has or had an eating disorder, specifically AN-R because I was always told in treatment that my resting heart rate of 100 was "strange." 

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My daughter is/was AN-R.  She is in recovery.  She developed tachycardia when she was restricting and it never resolved.  However, she sustained a skull fracture and concussion that the POTS doctor thinks has contributed to the POTS, more so than AN-R.  On the flip side, if you talk to an ED expert they say that the ED triggers POTS.  She never had POTS symptoms until she fell and got the skull fracture.  I think both have played a part.

 

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I was bulimic around the time when I first got really sick. I believe there's a correlation because now, any time I've ever been sick and thrown up I immediately feel HORRIBLE. 

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I had mild bulimia in my mid teens with a mild relapse in my mid 20's. I developed POTS at 34, sudden onset. For me, I don't believe the two are connected. I had a massive postpartum haemorrhage after my daughter's birth 14 months before the onset of POTS, with a 20 unit blood transfusion, & my onset of POTS symptoms was triggered by blowing extremely hard to blow up a balloon and becoming syncopal.  I think either or both of these are more likely to be related but have no way of knowing. I think if the POTS develops during or soon after an eating disorder there may be a causal relationship eg poor nutrition low blood volume/body weight but equally it could just be that both eating disorders and POTS preferentially affect younger females.

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I had severe anorexia in my teenage years (BMI of 10).  I did quite a bit of damage to much of my body, including my brain, heart, and bones.  There is no doubt that my dysautonomia symptoms are 100% caused by this. 

I remember my first ER & hospital stay where the doctor was looking at my vitals, looking at me, and was floored that I was alive, let alone conscious and talking with him. He said usually patients die before they get that low.  He very wisely told me that from that point forward, I might as well throw out the medical textbooks, as my body was ignoring all of them and will never work the same again.  That's probably the best medical advice I've ever been given.   

Symptom-wise, there was plenty of dizziness and such when I was restricting. However, gaining weight has always been the hardest on my body. Refeeding absolutely would wipe me out.  The nurses would take advantage of this, hiking up my feeding tube rate in the evening and I'd get dizzy, drowsy, and sleep/pass out shortly thereafter.  In the morning they'd throttle it back to almost nothing and I'd wake up a little while later.  With me unconscious, I wasn't burning through calories anywhere near as fast, so they were able to put more weight on without pushing my intake into dangerous territory. 

Even though I've been at a normal weight for over a decade, the damage has been done.  My bones no longer qualify for osteoporosis, but I'm still well into the osteopenia category.  My brain functions better than it did when I was restricting, but there is still serious damage and deficits caused by the starvation.   My circulatory symptoms are worse now than they were then.  My heart's ejection fraction was low back when I was at a low weight.  Now it's being asked to supply blood to 2x the mass of body that it was then, so there's no surprise that I'm frequently dizzy, tire easily, and pass out.  When my immune system is actively fighting something off, I'm wiped out.  There isn't much energy reserve left in me.   The discussion as of late is that they want me to drop ~10% of my weight in hopes of improving this mismatch.  For better & worse, I fully recovered many years ago, so I can't harness anorexia to help out with the weight loss.  I don't even have the mindset anymore.  Losing weight with a traditional mindset is rather difficult, and quite frustrating for someone who could drop multiple lbs in a week. I have a lot of sympathy for my fiancé who is trying to lose weight.  

I also find that it takes already-damaged parts of my body longer than normal to heal.  Last month I managed to give myself my first concussion when I whacked my head hard into the side of a metal beam while walking and carrying a box.  It took 4 weeks for the symptoms of that to go away.  The irony is that I often have to wear a helmet due to my dizziness and syncope, but my first concussion wasn't caused by my dysautonomia, nor was I wearing my helmet.  (searching the forum for info on dysautonomia and concussions is how I found this thread)

However, there have been fringe benefits from all of this.  I've twice had rounds of GI issues.  One was a bacterial overgrowth of the small intestine, the other was C.Diff.   My body has acclimated to starvation, so I fared far better with it than a normal healthy person would have.  My body kicked into its low energy mode and I wasn't losing weight anywhere near as fast as expected, which bought me time to find solutions.  

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I struggle now with flares of early satiety. I suddenly lose my appetite. I have to be really careful with motility and not eat foods that take too long to travel through me otherwise have little desire to eat or drink anything.

 

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