shathaway0811

Hey y'all, I'm just trying to establish how typical my symptoms are for POTS/Dysautonomia, and I've noticed several patterns including my heartrate increasing greatly after I eat. I'm just sitting at my desk right now and had a sandwich and some sunchips from subway, and my heartrate is a steady 105 bpm. This is getting incredibly exhausting... Turning over in bed at night raises my heartrate, sitting still too long tends to make me feel light-headed, but also walking around or bending over/any change of position also makes it worse. I'm so annoyed with this! I'm so exhausted all the time plus I'm not sleeping well because I wake up consistently with tachycardia episodes and it's so frustrating. (I am on propranolol 10mg twice a day, and unfortunately that does not do a whole lot except immediately after I take it. I really just want to find a physician who can address this in a specific, well-informed way. My PCP is great and knows about POTS but she's not a specialist.

Josh, I have faced similar issues, as well. My problem is primarily that both of my parents are physicians (my dad is a cardiologist, specifically) and because I have shown no majorly alarming symptoms (fainting, vomiting, etc.), they have often brushed aside my complaints as either being unproductive/unnecessary or somatic. I also have always had panic disorder and anxiety/depression, and the unfortunate thing about dysautonomia is that there are many overlapping symptoms. What I have started to do is emphasize my physical symptoms more to my parents and physicians during times when it is clear that my mental status is high-functioning and overall healthy so it can't be immediately dismissed as psychosomatic. My parents also find it difficult to cope with the fact that I feel physically ill BECAUSE they're doctors and they have no answers. My dad told me it makes him feel helpless, which I understand, but I also want to be able to go to them for advice as they are obviously knowledgable resources. I've had to adjust that expectation, however, and realize I have to be my own advocate and not worry so much about what my family says or thinks because ultimately, I'm the one in pain/discomfort daily. I don't know about you, but I've gotten really good at hiding/dealing with it too so I'm sure on the outside, and to my parents, I seem fine. Doctors are hard, in general... Some know about these things and some don't. I'm lucky to have found a primary care physician who is aware of dysautonomia and its subsets of disorders, but I've had a much harder time making headway with getting referred to specialists to confirm all of it. You just have to keep fighting for your health and being your own advocate. If you want to feel better, it absolutely IS worth fighting for a diagnosis because treatments can't happen without one. Good luck!!

Hearing it from physicians, I mean.

Thank you, yeah I looked up Gastroparesis as I know that is a subset of dysautonomia and it definitely fits everything I've been experiencing (minus the vomiting, but apparently not all gastroparesis patients have vomiting.) I'm just tired of hearing the IBS thing because that doesn't help me at all to know that lol.

Hi all, First I just wanted to say thank you to those of you who responded to my previous post. I sincerely appreciate all of those responses, they were very kind and thoughtful and made me feel a lot better! Secondly, I saw a GI specialist yesterday (not really informative, he barely examined me at all and didn't really seem like he thought anything was going on despite the fact that I've been in pain for 3 years since the last time I saw him and things have gotten progressively worse despite me doing everything I was told to treat the symptoms... nice guy just don't know if he took it seriously). But anywho, I will be having an endoscopy and colonoscopy for exploratory/diagnostic reasons. I'm just wondering if any of you who have had GI issues have had those procedures done and if they found anything related to your dysautonomia? I don't want anything to be wrong, but at the same time I kind of hope they find SOMETHING just so I have an explanation and there can be something done to treat it effectively. IBS is not what's going on, my symptoms are far worse and consistently different than those experienced with IBS (I have had that issue before now) and everything I've tried for that hasn't worked at all. Thanks y'all, and have a great Friday and Valentines Day Weekend!!!! <3 Sarah

I can't emphasize enough how meaningful all of your words are. Thank you so much for your insight!

jknh9, Thank you so much!! This is such a great community with such great individuals. I'm sorry you're struggling as well, and I appreciate your kind words more than you know! Definitely excited for spring and warm weather, I could use some time by the pool! Haha.

I don't normally like to complain or voice how frustrating all of this is, but I felt this is the most appropriate place of any since I don't want to put it on my bf and family anymore. I'm just having a very difficult time lately with all of the symptoms and fatigue that I'm experiencing, and the strain it's putting on the people I care about. I generally have a very high tolerance for pain and physical discomfort, but when it's like a million mosquitos biting you all the time verses one occasionally, it gets the point where you just start to go a little crazy. Individually and sporadically, the symptoms are tolerable, but together and constant, they start to get really frustrating. I think it's especially frustrating because my parents are physicians, and they don't know what to say, and it's not fair for me to expect an answer for them. They have to be my parents, and not physicians, and it makes them feel helpless when they don't know what to tell me. So I end up feeling like I shouldn't talk to people about it and I feel a tremendous amount of guilt when I do need to get it out because other people can only take so much. The worst thing about all of this is that I don't "look" sick, so it's (understandably) difficult for people to get just HOW crappy I feel and how FREQUENTLY, and therefore I don't fault them at all for being tired. Yesterday, I was light-headed and short of breath just sitting at my desk at work all day long. It felt like I was fighting to stay conscious. And the strangest thing was that my heart rate was unusually slow for me (60-65 bpm) and then overnight became very high (woke up with 110 bpm). Everything is just so all over the place and I'm really scared of it getting worse. I can't eat anything without feeling sick, and I'm exhausted all the time. My boyfriend jokes around with me about how much I sleep (all in good fun, of course) but what I thought before was me just needing more sleep than most people to function is actually my response to feeling like crap all the time. Basically I just feel like I have no concrete answers and that everything is just getting progressively worse, and all I want is someone to tell me they know what's going on and to fix it. I have a GI appointment on Thurs. and I'm hoping to gosh he knows about dysautonomia. I HATE THIS STUPID ILLNESS!!!

My BP rises significantly when I stand. I'm usually around 98-110/62-85 ish when I'm seated/lying down (significantly lower when I lie down) and then I have a substantial increase when I stand. The highest it's gotten for me is 135/98. And my HR was about 110bpm. I often feel more light-headed when I'm seated, that in between position just does not work for me lol.

Thank you for all the insight everyone. Alicia, I've never actually passed out from the discomfort but I have come very close and it's not a pleasant feeling. I'm going to be having some tests done soon, and I am definitely going to bring these things up to the GI since I can tell for a fact they are related and not simply anxiety the more it happens. I just want to feel normal!! Lol.

You sound exactly like me!! I have been told all my life my physical symptoms are somatic and therefore a result of my anxiety and panic disorder. It wasn't until recently when I decided to assertively call BS on the whole thing and take my medical care into my own hands. It took me finding a doctor who treats EDS (and has it herself) and who is therefore very familiar with diagnosing and treating autonomic dysfunction to be validated. That's all I needed to get the courage to stand up for myself. Yes you can have autonomic dysfunction without a specific type being given; it is a rare and poorly understood condition and so most doctors have barely heard of it and it's compounded by the fact that there are so many shared symptoms with entirely separate illnesses. My suggestion would be to keep a detailed diary of your symptoms so that you can prove a pattern of coexisting issues and repeated complaints to show whoever you go see. I've finally been referred to GI for an endoscopy and colonoscopy, got put on a beta blocker (which actually raised my blood pressure and has done a tremendous amount of good for me, if that helps your fear at all!) and am not going to stop pushing until someone gives me an answer. It is incredibly discouraging to essentially be told you're mentally ill, believe me I get it. But remember that no one knows how you feel physically except for you; if you're anything like me, you've gotten really good at living with the constant discomfort and it is your norm, so from the outside you probably appear "normal" to a lot of people. It just means you'll have to figure out another way to "prove" what you've been experiencing - hence the written diary suggestion. Good luck and check out the list of docs on here, it's pretty extensive!

Hey y'all, So I know I've been posting a bit about my GI issues, but I have one other question for you all... Does anyone else experience a lightheaded woozy feeling whenever they get stomach cramps or stomach pain? I'm trying to figure out if it's related to my anxiety (I often times get a stomach ache with panic attacks so when I get a stomach ache I'm wondering if my body is associating that with a panic attack and therefore it causes me to be lightheaded a bit...); but I also know that the vagal nerve is responsive to stomach discomfort and the need to use the restroom, and can be dysfunctional in dysautonomia patients. If anyone else has experienced this feeling - the best way I can describe it is lightheaded, dizzy, and shaky whenever I even begin to have stomach discomfort - let me know! Kind of nervous about it... Thanks, Sarah

No problem! I've been taking my temp regularly too in order to establish what my "normal" temperature is which I feel like helps confirm the higher temp is actually a fever. Some physicians argue that anything below 100 is not technically running a temperature if there's no obvious infection (my parents included) but my "normal" temp is 97.8-98.1. So for me, anything above 99.3 or 99.4 makes me feel like crap! Yeah I'm glad I finally have my POTS diagnosis as nurses often comment on my vitals too, so I can tell them with confidence now "It's just the POTS" haha.

Just wondering if anyone had experienced this? I've been getting very out of breath while talking today/walking around today (which I've had before, but it's generally correlated with a high heart rate) and yet have a very normal heart rate and BP at the moment (86bpm - still kind of high but no where near what I usually run)... Any thoughts?

I have POTS and possible MCAS, btw.

Hi Xhale1991! I have also noticed that when I am exhibiting little to no symptoms otherwise, constant change in position or exercise immediately causes my symptoms to show up. I will often times feel fine and then try to go on a run, and be exhausted and have an elevated heartrate for several hours afterwards. I have recently started yoga, and even on a beta blocker/ssni/florinef, some poses are super uncomfortable and cause me to feel very lightheaded and nauseous. I then checked my BP afterwards and have actually been running what is really high for me (120/90 ish). I don't know if that's any consolation or helps at all; I think exercise intolerance may just be a thing for us, unfortunately :/ Good luck! Sarah

I often times have a low grade fever - between 99.7 and 99.5 - although it's not constant. I do feel like I have a fever when this happens though, major fatigue, body aches, just feeling sickly. I'm not sure what's causing mine, though. I have constant GI symptoms so it may be related to that, or just the dysautonomia. Either way, it's not fun and I'm sorry for your daughter!

Thanks so much! I actually haven't taken the Florinef yet so the increase in BP was kind of strange. I just got the Florinef yesterday. I believe it's short acting as I take it twice a day, and it's only 10mg. And hmm that makes a bit more sense now with the temperatures... This whole thing is just so strange!

Yep. To clarify, since there are rules about asking for medical advice, I meant I wish a physician could give me an explanation haha. But thanks for the insight, it's good to know I'm not the only one who has experienced this. It'll be interesting to hear about anyone else. Do any of you all run the low-grade temps, too?

Has anyone else experienced a rise in their blood pressure after starting on a beta blocker? I just feel like my body is all over the place... I've still had tachycardic episodes, especially at night, since starting propranolol. Occasionally it's good, but it doesn't seem to work consistently; I also got a BP monitor to see how my blood pressure is responding to that and the florinef I was just placed on, and I took it this morning since my heart rate was quite high (explained by the fact that I had just taken a shower, and that's generally what happens) and I thought my BP would be low, but it was 135/90! For a person who generally funs anywhere between 95/62 - 105/70 ish that is crazy high. I've also been having days recently where I run a low grade fever (like 99.8) ish and feel absolutely awful, generally with a headache and exacerbated GI symtoms... Basically flu-like. But those days are interspersed between relatively good days. Just wondered if anyone else has experienced these things? I really just want an explanation for all this. I wish my symptoms were more consistent, too because then it would be an easier case to argue to physicians. I know it might not be possible, but a generalized explanation for the craziness would be great.

Thanks everybody. Unfortunately, the dose I'm on is now too low and my heart rate went back to being super fast farely quickly... So my physician has added Florinef as she thinks that I'm not retaining any sodium at all since I tend to drink constantly and therefore have to use the restroom constantly, as well. Hopefully the combo of Florinef and Propranolol helps. I'm having a lot of headaches and fatigue recently, for whatever reason... But I think they're exacerbated by my GI issues so hopefully once those get figured out everything else will, as well. It's crazy how much of these issues are like puzzle pieces that make no sense by themselves but are so dependent on one another.

Katybug, how did you end up getting diagnosed with MCAS? Did you have to self-advocate, and if so, how did you approach it? My physician mother thinks it is a very distinct possibility for me given my lifetime symptoms (which is a major thing for me, considering physician parents like to live in denial haha.)

I have had very little testing done besides positional testing for blood pressure and heartrate. However, after being given a few different informational websites from my doctor to look at for information, I just recently came across MCAS/Mastocytosis and the systemic manifestation of that describes me EXACTLY. It encompasses symptoms I have had since I was a child, and that have recently gotten exponentially worse. I'm hoping I can convince my primary care to refer me to someone who can order the necessary tests for that.

Hey y'all, I'm just curious as to what general GI symptoms those of you who have POTS or other autonomic dysfunction experience? For as long as I can remember, I've had chronic gastric symptoms and it has always been dismissed as IBS as a result of anxiety. However, I'm at the point where that is not a good enough explanation for me as I have been diagnosed with POTS and over the last few months my GI symptoms have increased significantly and it's getting to the point of me losing weight and it being intolerable, which has not happened before... I have been referred for an endoscopy and colonoscopy as diagnostic tests but am trying to decide whether or not the POTS is worth mentioning to the gastroenterologist - which is why I'm curious what other symptoms people on here have experienced. Mine include: Frequent diarrhea (I NEVER have normal bowel movements) Cramping, sometimes severe, on a regular basis Occasional severe constipation Food coming up completely undigested hours later Esophageal spasms every time I eat (sometimes when I drink) Difficulty swallowing Early Satiety (most recent and most bothersome, as it inevitably leads to major stomach discomfort every time I eat) Bloating, sometimes painful to the touch Gas (both ends...) Chronic hemorrhoids and pain/discomfort Nausea daily I don't notice a direct correlation with the severity of these symptoms and the severity of my POTS symptoms; these tend to be much more consistent and chronic - the POTS, though uncomfortable, tends to be pretty moderate and has been under control with a low dose beta blocker. If anything, my GI symptoms have gotten worse with that. Thanks y'all.

Thanks for the advice and kind words, y'all! It is very frustrating. My father is a cardiologist/the CMO of our hospital systems and is one of the kindest, most competent doctors out there (our hospital system is top 15 in the country) but I think it becomes much more difficult to acknowledge illness in your children when you constantly see things that are so much worse, which is understandable but SO FRUSTRATING. And you also develop your own biases and emotional responses towards your child after awhile when it puts a lot of stress on you - I've been dealing with anxiety disorders since I was a toddler. It doesn't help when those mental health issues have a myriad number of overlapping symptoms either. It's just a conglomeration of confounding factors that make it difficult for them to take me seriously when it comes to real physical symptoms, I suppose, but I've never been one to exaggerate so I just wish people would listen occasionally. I wouldn't make this stuff up! Haha. I HATE being sick and don't like putting it on other people AT ALL.