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Wufflebear

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About Wufflebear

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    Advanced Member
  • Birthday 06/12/1972

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    Female
  • Location
    USA
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  1. My doc thinks my nausea (along with stomach pain when eating) is gastroparesis. My understanding is that gastroparesis is your stomach's version of dysautonomia. I do a 3 day liquid diet (except breakfast, I just can't) and the symptoms improve for a bit.
  2. Sorry for the delay in responding. I had a port placed on Thursday, and they nicked my lungs, so I suffered pneumothorax (collapsed lung) and was in the hospital. Luckily it stopped collapsing at 15% so they did not need to do another surgery. My doc is Dr. Feldman in Bend, Oregon. He is great! I believe they did 20cc and injected it right in the middle of my spine. Just one injection. It was all done under MRI and followed by contrast to make sure it was in there.
  3. bombsh3ll That was the freaky part for me. Afterwards they sat me up and then stood me up and I had NO symptoms. It was so freaky I started crying and told them I needed to lay down NOW! lol The doc was very concerned until I explained. No orthostatic intolerance, no plugged up ears (i did not even realize I had tinnitus because I have been leaking for so long), no numb face/hands etc. For the first few days I actually felt worse laying down (also very freaky) because my inter-cranial pressure was doing a rebound high (very common.) After two days the symptoms started coming back, but per
  4. I'd look into it. The reason, if nothing else, is that it can make the symptoms curable. Not everyone is super lucky like that, but it is way better than the alternative. :)
  5. I would look into it. https://spinalcsfleak.org/pots-spinalcsfleak-or-both/
  6. Yea Elhers-Danlos is a connective tissue disorder and your Dura (the Ling that surrounds your cerebral spinal fluid) is connective tissue. So tears can happen with no other cause.
  7. I don't think my face droops. Mine it is just like the top several layers of skin, kinda, are numb and sometimes numb and tingly. Turns out I have a CSF leak that they think is causing that. I had a blood patch this past Thursday and for a whole day I could feel my face. lol MIne comes and goes. The more I am up, the more it will happen.
  8. yea there can be a mild tingling. I mean more mild than after dental work, but still definitely reminiscent of it! Sometimes I will get the spasms too. It is weird.
  9. I am noticing that one of my warning signs now is that my face feels vaguely numb.. almost stiff and not like totally numb, but like the top few layers of skin are stiff. Anyone else? It is weird. I mean I will take any warning sign I can get, but it is weird.
  10. Mine says 'Autonomic Dysfunction - lay me down and give fluids.' I get syncope a fair amount. If nothing else it makes me feel better to wear it and handy when I have to sit down in public or take liquids into a court room when I was on jury duty.
  11. I have been fainting since 3 yo and was not diagnosed till 34 (42 now). So I had no choice but to push myself. In college and after I would stand near the bed and push it and throw my weight at the last minute so I landed on the bed. I am not a doctor in any way, shape or form however. I just did what I had to do. I think the key to it is getting to know your body very, very well.. So you know the warning signs and when you can push it, and when you can't. That is my two cents.
  12. I dont think anything with me is swollen.. but.. Yes it can be dang near impossible sometimes to get the big "O". Yes it can hurt like heck sometimes, like the poor guy is individually poking all my organs and after the big O, I feel very briefly like I might faint, then sometimes my skin gets really sensitive and painful for a bit and yea general flu like feeling for hours.. I try and reserve the small cry for when I am alone, but did not make that last night.. Just had it out right there.. Morning nookie is out of the picture for me, except on very rare occasions. Shower nookie is really not
  13. I did too, but it made me symptomatic the one time I tried it.. SO I am going to give it some time and try again.
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