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Everything posted by Wufflebear

  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 periodically I will stand or sit and for a few minutes at least nothing happens. I usually sit back down again because it freaks me out. lol I am told that if a blind blood patch relieves any symptoms, then you are definitely leaking. My doc chose not to do imaging first as it is expensive and has a high false negative rate. Yea honestly I am still dumbfounded... Doc thinks I have been leaking to greater or lesser degrees my entire life... 47 years... and no one figured it out. Initially I pushed back on the diagnosis and blood patch because "surely if it was something like that a doc would have found it in all these years." My doc now (great doctor) just looked at me and laughed. He has folks come from all over to see him (he is a nephrologist who finally agreed to see a child with POTS when the mom had no where else to go. He is now THE person to see around here. If you are in Oregon, or can get to Oregon, inbox me and I'll give you his name. Not sure if I should share it openly or no. lol I do agree with what was said above however, if your face is drooping that warrants an ER trip just to be safe. Routine POTS stuff no, but that I would go to the ER for, unless you can get into your PCP that same day.
  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 fun. My husband doesn't so much even try that anymore. :/ But yea I will feel bad for a day or two.. But like most chronic conditions, sometimes I am fine, other times not so much. Periodically I get really bad stomach cramps.. feels like labor in all honesty and it can last hours.. Last night was just an hour. I went to the doc for it once and they said maybe Uterus cycst.. but then they could not find any. (they thought that would explain the pain during sex as well..) Shockingly.. the test came back normal... of course.
  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.
  14. I have had this several times too. Last time was when they took me for a walk after I had my son via c-section. They couldnt figure it out. The head nurse came over, grabbed a wheel chair and started barking orders. My BP was too low for a reading.. they had been trying for several minutes before she came over and finally figured it out. I had been trying to tell them this as I sat without vision/hearing and begging for a bed.. But my speech can be pretty messed up when I am not doing well.
  15. Yea I have pooling issues. they evaluated me for migraines when I was a child, but it I think was more a symptom than the cause. Like after you have been passing out or are having autonommic instability issues.. I get a bad headache..
  16. i second the remove work folks from your FB. And set your privacy settings to Friends only. All that was said above..
  17. That is a question I would like answered as well. I have a severe allergy to doctors, so I only go if I really, really need to and I can direct them.
  18. Yea it used to be a fleeting yucky feeling but now it is hoursZ face goes all tingly and mildly numb or stiff feeling, tummy problems, nausea, dizziness. Not having fun. It got triggered yesterday and I have jury duty today. I have my feet up and ok to bring in a Gatorade. Praying I don't get picked. I have been sitting for 20 minutes and I already feel terrible.
  19. that sounds great. I will look into it. Thank you!
  20. the other aspect I worry about is that I can be "bad" for a year or two and then good for a while.. So if I am good, can they take the dog away? or would he get untrained due to lack of needing his skills? That sort of thing.
  21. I have a relatively new symptom. It has been here for a while, but not anywhere near this pronounced. When I see a bright light (car headlights in side view mirrors, The lasers at airplanes story that was on cnn today).. It makes my body have that 'blood run cold' feeling like after a strong, sharp pain.. only it lasts for hours.. and then I get very nauseated.. Oddly enough headlights coming at me don't bug me that bad.. maybe because they are not there for very long... or maybe the side view / rear view mirrors amplify the light. Anyone else? is that a Dysautonomic thing? btw my kids blinky toys freak me out too.. I was tested for epilepsy as a child and that was negative.. No seizures or anything like that.. just terrible feeling.
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