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About shathaway0811

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  • Birthday 08/11/1991

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  1. Amalia, I am sorry. I know it's tough. I'm lucky in that my dad is aware of dysautonomia and actually was the one to suggest POTS/autonomic dysfunction as part of what was going on with me; however, where my parents tend to drop the ball is in understanding how debilitating and actually uncomfortable it can be. Their justification is it's not "serious" because it's not "life-threatening".... I'm like yeah I know it's not gonna kill me, but it makes it extremely hard to function and it's hard to be in some kind of discomfort or pain 24/7. They also think that because I don't show how I'm
  2. Hey y'all, I have my first appointment with an actual dysautonomia specialist (as oppose to GI/Primary Care appointments previously) in less than a week. It is with Dr. Glenn at MUSC, about whom I've heard nothing but incredibly encouraging things. Just wondered if people had suggestions as to what is a good idea to bring? Since dysautonomia can be so non-specific when it comes to symptoms, do people find it helpful to bring a record of their symptoms to demonstrate any patterns? Do you find it's a good idea to simply come with a list of things that tend to be most present most consisten
  3. I have this happen very frequently. There was awhile where I would wake up to my HR being 160-180 in the middle of the night - which would consequently cause a panic attack and make it worse - and it wasn't until later that I learned this is very common in POTS. If you look up typical symptoms, episodes of tachycardia in the middle of the night are listed as a known associated symptom. It's especially common with hyperadrenergic POTS as it's a rush in adrenaline. I will often wake up extremely jittery, as well. I can just feel the adrenaline running through me, and it causes the immediate extr
  4. You have described my feelings exactly!! I've had an incredibly frustrating time trying to regulate my emotions. The instability has increased since my symptoms have increased. I get angry and frustrated for minimal things (totally out of proportion to the circumstance) and cry about absolutely everything! It's embarrassing and emotionally exhausting. What did you find out about this, if anything?
  5. Hey y'all, As always, hope people are doing well! I'm in a bit of a dilemma... I was scheduled to have a colonoscopy and endoscopy at the end of this month but have had to reschedule due to restrictions in my job (work for Americorps, so lots of grant stipulations) on how many days I can take off. Already had to take a medical leave. The procedure is now scheduled for June. However, I have been experiencing increasingly unavoidable stomach pains and nausea/bloating/diarrhea. The only time I don't feel it is if I go without eating (obviously not a good thing). Any insight into what consti
  6. Hey everyone, Hopefully everything is going well for y'all. Over the past couple months or so I've had relatively frequent spells where I've felt a bit feverish (achy, tired, just generally kind of a "sick" feeling, if that makes sense) and when I've taken my temperature during those times it's run 99.6-99.7. I've also taken my temp as a point of comparison when I've felt totally fine, and it's a normal 98.6, which tells me that 1. it's not in my head that I'm feeling that way because it's reflected in a documented temp increase and 2. that something is going on... I have an appoin
  7. Angelloz, Yes!!! I felt like CRAP yesterday. Lots of GI symptoms and fast heart beat all day. Interesting. And yeah I really hope physicians start to be able to look at this disorder in a big-picture way... Some do but it's hard to find them! Sarah
  8. So while driving my car today, my fingers randomly got super wrinkly. My hands were not sweaty and had not been in any water... It was quite interesting. I didn't think much of it but out of curiosity looked it up to see what causes wrinkled/pruny fingers aside from water, and much to my surprise, parasympathetic nervous system issues (i.e. autonomic nervous system issues) can be a cause for this! Has anyone else experienced this phenomenon that they've noticed outside of water? I'm curious to know! Human bodies are weird. Lol.
  9. So this morning, I woke up feeling not so great emotionally, but forced myself to get up and get dressed and get moving! After a couple hours I realized I was feeling better and pretty much normal physically, very different than things have been recently which was awesome (much less symptomatic, especially in regards to my GI Issues) I then, however, realized how much strange it is that my GOOD days are what stand out to me... which is where the catch 22 comes into play. It's obviously awesome to feel GOOD. To not get nausea and a lot of bloating immediately after eating; to not feel li
  10. If you ever have shortness of breath and chest tightness, especially with preexisting medical conditions that affect your heart, you really should either call your primary care/cardiologist or go to the ER to check on things. Not worth letting go unknown.
  11. I get this periodically in my feet and in my hands; they feel very hot and like they're vibrating strongly. It may just be a normal sensation. Not sure it's related to POTS, but would be interesting to know!
  12. Hi! I've recently been starting yoga. It's great exercise, for sure, but it was a little triggering for my POTS symptoms due to all of the changes in position in a class setting (the instructor guides you through series of poses). I would mention it to your instructor before hand if you have any restrictions and they can give alternate pose options, usually. Hope that helps some! Sarah
  13. Hey all, Hope your weekend has been great. I've read in several places that high seratonin levels are a factor/side effect in POTS/dysautonomia for some people, and while I've had anxiety issues my whole life combined with mild depression occasionally, I've recently been experiencing completely inexplicable major mood swings (NOT PREGNANT). This has DEFINITELY come in conjunction with an increase in POTS physical symptoms. Has anyone else experienced these/what have you learned about it? It generally consists of me going from totally fine to some kind of emotional trigger (big or extremely sm
  14. I find biking is great! I tend to have a much slower increase (and less substantial) in heart rate when I bike for extended periods of time, especially on flat ground. My family often goes to Kiawah Island in SC and it's a great way to get cardiovascular exercise without the incline or stress of hiking/running. However, when possible, I do go running when I feel like it because I find that it helps with other activity. My biggest issue is any kind of incline (stairs, steep trails, etc.; my hr goes from like 80-90 bpm to over 150 in less than a minute or so, generally. I don't have that issue w
  15. I thought I was the only one!! I am very clumsy, especially when it comes to dropping things. I notice it's much worse when I'm experiencing any kind of adrenaline rush - and anything can make that happen for me - and I'll get shaky and then bam. Dropping things all over the place. I would assume it has something to do with the hyperadrenergic element of my POTS? Lol or maybe I'm just a clutz
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