shathaway0811

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 feeling, that it's not as bad... it's just I've been dealing with these symptoms for so long that until they get to the point of being unbearable, I suck it up and go along with my day. My frustration tends to come out in emotion which also contributes to them thinking things are psychosomatic, as you said. I love my parents and I know they want the best for me and that it's difficult for them to not be able to fix things, but I just wish things weren't minimized, even unintentionally. I don't want anyone to feel sorry for me, I just want to be validated and acknowledged.

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 consistently? Any other tips of things that are a good idea to have on hand? I am just desperate to make this as productive as possible, and to finally get some answers... or at least begin the process. Thanks and hope everyone is okay! Sarah

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 extreme tachycardia as well as GI sypmtoms and tremulousness. It's a pain in the butt, that's for sure. No one likes to wake up to feeling like you just ran a marathon!

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?

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 constitutes emergent (i.e. worthy of going to the ER) and whether or not even going that route is something that would expedite the process of having some kind of study done over a weekend rather than waiting until I'm done with my service term?? I just really am exhausted and over the stomach discomfort... I can deal with the BP/HR issues, even though they're a pain in the butt, but the GI problems are reallyyyyy getting to me, and trigger a lot of vasovagal reactions, as well. I'm also concerned with how much worse it's gotten recently. Thanks everyone, Sarah

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 appointment in 3 weeks with a cardiologist at MUSC who specializes in autonomic dysfunction and I'm definitely going to bring this up to him and record how frequently these low-grade temps are occurring. Has anyone experienced this before? Has it turned out to be related to dysautonomia or have people found they've had other issues? My primary symptoms other than HR and BP abnormalities are major GI issues (severe bloating, almost constant nausea, abnormal bowel movements, etc.) and I have noticed a correlation in when I'm having these low-grade temps and when I'm feeling really crappy stomach-wise. Just wondered if anyone else has had these issues... Also, in terms of physician visits, I've been and am going to continue recording all my noticeable symptoms and BP/HR fluctuations so that the cardiologist will have something to reference in addition to my medical records. Have others done this and found it was well-received? Hopefully the doc will have some insight! Sarah

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

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.

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 like I'm going to pass out every time I change position; to not constantly just feel worn down and gross. However, I really hate that it's gotten to the point where NOT feeling normal is my new normal... I want my bad days to be the ones that are few and far between and stand out, rather than vice versa. That's not to say that I'm totally non-functional usually (I'm incredibly grateful that it has not yet gotten to that point); however, there have been lots of days recently during which my discomfort and pain levels are higher, to the point where I could easily just sit in bed all day but I just ignore it and keep on going with my life. I don't like that I'm USED to feeling bad. But at the same time, I'm grateful that I'm able to push through and I'm appreciative of the fact that I have a greater appreciation for feeling well... I don't know if that makes any sense at all but basically it's just a very strange way of existing for me as I'm not used to this whole chronic illness/living in the medical unknown thing. How do you all deal with the emotional instability and changes that come with the physical issues?

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.

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!

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

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 small - like last night being late to/not knowing what was appropriate to wear for an event, which normally would not bother me at all) to breaking down completely and feeling overwhelmingly bad; angry, sad, guilty, everything all at once. Again, because I've dealt with mental health issues since I was a child, I can say with surety I have never felt this before and it is very different and seems to be coming from somewhere else. Just thought I'd ask for some insight! Best, Sarah

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 when I bike.) Kayaking is great too!! Sitting down and just using your arms/building core and cardiovascular strength (which they suggest for POTS) is perfect. I've also ridden horses my entire life, and I'm not sure if that's an option for you, but I would HIGHLY suggest taking basic riding lessons if you can. It's calming and helps keep you centered while also allowing you to get exercise that is only at the intensity you want it to be. Hope that helps!

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