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Rebekah18

Dysautonomia hodge-podge—What about you?

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Hi everyone! 

My name is Rebekah, I am 28 yo and new here! I’m married to my hubby David and the mama of our 9 month old boy, Owen! Excited to be finding answers after years of confusing and difficult symptoms.

I am wondering if any of you have experienced what I’ve experienced, or if my other symptoms are more rare/less typical. I do have POTS (not all the time, but sometimes), but I also have:

  • Reactive hypoglycemia (non-diabetic)
  • Vasovagal syncope
  • Hypotension
  • Arrhythmia and elevated pulse, especially while exercising
  • Constipation/diarrhea
  • Incomplete bladder emptying
  • Mild photophobia (have to wear sunglasses a lot/can’t see well at night because of headlights)
  • Ptosis in one eye
  • Sleep issues (fainting during sleep; paralysis; waking hallucinations; etc)
  • Poor memory/brain fog

So... can anyone relate to these? For years I just thought I was a weirdo with all these random problems but now I know they are connected!!! Which is kinda relieving in a way :)

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That's pretty much most of my daily list, except for the ptosis--sorry you have that :-( This is all part the experience. I often wear sunglasses and also wear noise cancelling headphones which cut down on a lot of street or store noises when I must be outside. 

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Sounds all too familiar!!  Welcome to DINET!  I'm a caregiver to my daughters who have it, in addition to Ehlers Danlos Syndrome.  I remember when we finally put together that all of their symptoms were part of ONE thing.  You feel like you are finally there!  Now we usually look within the confines of EDS.  It has saved a lot of time!

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