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

I'm definitely going to have the tests, and I do know they will be helpful. What was frustrating for me was just that I barely got a chance to really detail what had been going on, which had SIGNIFICANTLY changed since the last time I was seen. And even my mother, who is an internal medicine specialist, felt that while the endoscopy/colonoscopy would be helpful (and is a very immediate move for most GI docs and is sometimes a costly and non-specific diagnostic procedure), I really needed a motility test given all the symptoms I've been experiencing. And those are the symptoms I wasn't even able to detail because I got cut off. The appointment was a total of 15 minutes. It's not that I'm ungrateful or ignorant to how medicine works - in fact I think sometimes it's a bad thing that I've literally grown up immersed in it and so have more knowledge than the average person (in a bad way lol) - it just gets frustrating when it feels like you're trying to explain what's been going on and it's minimized and dismissed in some ways, especially under the pretext of mental health. This concept that if you have a mental health-related disorder then that is obviously the explanation for ALL of your physical symptoms (which is a very common thought process) is EXTREMELY frustrating for me. I'm very in-tune with my anxiety and it's repercussions, so therefore I'm also acutely aware of when something is different and entirely unrelated. On a positive note, however, I was referred to a cardiologist at the Medical University of South Carolina who specializes in dysautonomia. So I'm hoping that will bring some clarity and he will be able to help narrow all this down, some! His name is Dr. Glenn. After I see him, I will submit his information into our physician network. Hopefully he'll be great Sorry for the venting y'all, I really hate and feel guilty for being a negative person and it's not at all that I want sympathy, it's just helpful to have somewhere to get insight and advice for those who have been experiencing similar circumstances. I'm actively avoiding bringing it up to family and loved ones unless absolutely necessary.

Hey everyone, Hope the weekend was nice for y'all! It was so pretty outside. As I've mentioned in previous posts, my GI issues have been getting much worse and much more noticeable over the past several months. I've always had cramping, chronic diarrhea, occasional constipation and gas with almost constant stomach pain for as long as I can remember. That being said, recently, nausea without vomitting has become a thing for me - which is out of the ordinary as I NEVER throw up and am therefore rarely nauseated. I can be nauseated to the point of gagging and still not be able to throw up. It's generally induced by either something pressing on my stomach (jeans/paints that are not leggings, even tight leggings occasionally cause it) and eating/drinking (regular liquids, non-alcoholic). Basically anything that puts any pressure on my abdomen, either internally or externally. I've also been experiencing major bloating; I asked my boyfriend (not to be inappropriate but he is the one who sees me most regularly in any capacity within which the visual symptom would be apparent) and he has said recently it's been very noticeable and strange because some days I look completely normal and others I look like I've gained about 5 pounds. So I went to the GI to discuss these things, and was COMPLETELY dismissed aside for them saying they wanted to do a colonoscopy and endoscopy; I honestly would have preferred to have someone really hear me out and listen to my symptoms rather than immediately say "you need this procedure" - he just seemed as if he wasn't curious and didn't need to know anymore even though I barely got a chance to emphasize how much worse things have been. I saw him once before for what was labeled as IBS from my PCP and he had clearly carried that over into this appointment, even though I did tell him I had a new diagnosis of POTS; didn't bother asking any follow-up questions or anything, and emphasized my anxiety/depression... ALL OF MY BIGGEST FRUSTRATIONS WHEN IT COMES TO PHYSICIANS! Not asking questions, having preconceived notions, and getting caught up on mental health... It's like YES I have anxiety and depression, but ***** people with those orders can also be physically ill too!!! It makes me so angry... Any who, I wondered if any of you all have experienced these things, particularly with gastroparesis? I would be beyond surprised if they didn't find anything indicative of that during the endoscopy as I get full very quickly and have major GERD (but am literally hungry all the time, it's the weirdest thing, except when I'm extremely bloated...) and have eating-related symptoms. I really just want a freaking explanation for all of this and hope someone eventually listens. I'm also a bit worried about the anesthesia as he didn't even bother to ask about my POTS symptoms when my heart rate and blood pressure are all over the place, and I have required more anesthesia in the past for whatever reason, and then added oxygen post-op...

I had the same sense of relief when my physician recommended this site/forum to me. I have an increase in symptoms whenever I eat a lot at one time. Generally it's light-headedness, a big increase in heartrate, and nausea. It doesn't really matter what I eat, although really heavy greasy stuff is the worst.

Hi! So... 1. I drink gatorade constantly. I would suggest drinking the low-cal gatorade so you're not getting all the extra sugar which can make anyone feel a little crappy (and be an unnecessary source of empty calories); the green kind is my fav! People with POTS tend also to be dehydrated often because of the need for salt we experience, which, as explained by my PCP, causes us to need to drink often which causes us to go to the bathroom more frequently. I feel a HUGE difference in my symptoms when I'm not drinking enough. Ever since I was a kid, my friends have poked fun at me for constantly having something to drink in my hand. Even my professors in college would comment on it haha. It wasn't until I knew I had POTS that I knew why! 2. Which leads me to the salt question... I have ALWAYS craved salt. For as long as I can remember. Premature hypertension runs in my family, so my father (who's a cardiologist and has genetic hypertension himself) would keep my siblings and I from adding salt to anything; it wasn't until my blood pressure started consistently being recorded between 90-100/60-80 at the doctor's that he stopped doing that lol. I got lucky and avoided that gene All of that is to say, satisfy your salt cravings!! I always have salty snacks with me at work and tend to add extra salt to whatever I eat. My boyfriend thinks I'm crazy but it helps a lot. Whenever I start feeling kind of woozy, I try to eat/drink something with a lot of sodium in it. Pretzels and hummus is a great healthy snack with a high sodium content; salted peanuts are as well, but are a little more high in fat. I would look up recipes for those with low blood pressure, and see what you could find. 3. No idea about orthostatic exercise... I know that cardio is good in general, though. 4. YESSS!!! My temperature is always FREEZING or BURNING UP. Whenever my family is warm/comfortable, I tend to be freezing (ice cold hands, feet, nose, and ears) and I also am EXTREMELY sensitive to heat. I frequently feel like I'm going to pass out in the summer here in SC if I stand outside/exercise outside for too long when it's really hot. I also sometimes get night sweats. 5. GI issues go hand-in-hand with POTS - all part of the dysautonomia spectrum. I hadn't really ever experienced chronic nausea until recently as I don't ever throw up. But it has reared its head within the past 6 months or so. No vomiting (though I wish I could because that helps to feel better), but lots of GI discomfort and pain. Pepcid helps with it some, as does the propranolol (beta-blocker) that I'm on. Hope some of that helps! Not sure about the florinef. I was just prescribed it, as well and haven't started it yet.

The worst is the word-finding and not letting my thoughts be disjointed when I express them verbally. It's so annoying! And noticeable, to the point where my team (I work as a team leader with an Americorps program) and our students have pointed it out.

Has anyone experienced increased brain fog with beta-blockers (propranolol)? For clarification, I am not any more fatigued than usual but can't for the life of me multi-task or pay attention to more than one thing at a time, my short-term memory is terrible and I can't find words/remember names easily at all. I've never really had these issues before but lately they have been bad. I'm not sure if they're associated with the meds or increased symptoms (I had a few days where I was waiting for my beta-blocker to be refilled and my POTS symptoms increased exponentially; much better now with med but brain fog is so bad! Haha). Hope everyone is doing well!! Sarah

I feel it all the time! I thought I was crazy and the only one! I get it when I'm sitting at my desk for long periods during work, as well as in bed at night. I definitely find that I feel better in bed lying on my side, for whatever reason. It's almost like a vertigo feeling combined with a pre-syncope type feeling. NOT FUN! Sorry you're feeling rough :/

Thank you so much!!!

Yep, nothing on it.

Also, does anyone know of any physicians who are well-respected and have experience as/are specialists in dysautonomia in SC? My symptoms are getting progressively worse, and everyone is looking at everything as a separate entity and I'm pretty sure that's why every treatment plan I've had given to me (mostly over-the-counter medications) do nothing. I'm also tired of people telling me it's just anxiety. When you look at the list of symptoms on this site, or on POTS UK (which has a great description of the disorder), I fit literally everything on it save for like 5 things. CLEARLY what I'm experiencing is interrelated in some respect, and I feel the only physicians who are willing to recognize these things as connected are those who know about dysautonomia extensively, which unfortunately are difficult to find... Thanks! Sarah