shathaway0811

Sorry for the less than sensitive title to this post... But since I've started propranolol 10mg (very low since I already have low blood pressure), I've been almost entirely unable to use the bathroom. This is very unusual for me, in particular, since I have chronic GI issues that generally cause an over-frequency of bowel movements. I just wondered if anyone else had experienced this phenomenon? Also, does anyone else have physician family members who are hesitant to believe how generally uncomfortable POTS/dysautonomia symptoms are? It's hard for me to express to my family how crappy I feel on a regular basis, partially because I have a high tolerance and am good at hiding it (it's my norm) and partially because I just get told to learn how to handle physical discomfort better... It's like, if you only knew... Lol. Anywho, hope everyone is having a good relaxing weekend! Sarah

I agree with the too much lying down! I often notice random spikes in symptoms when I've just been vegging out hard core over a weekend. I go to get up and my body can't handle it - I'm assuming because it's regulated to that position and my blood isn't circulating as much. The dizziness and vertigo are exactly what I feel.

big trouble, I have near constant diarrhea (meaning my bm's are rarely normal) and I have nausea and cramping quite frequently; I also have acid reflux issues and spasms in my esophagus every time I eat with early satiety. Essentially my digestive tract is always a mess. I've been referred to a GI place for an endoscopy per the suggestion of the physician I saw who diagnosed the POTS; she suspects it's related and that I may also have ulcerative colitis. My normal is essentially an abnormal digestive system haha. I've had these issues since I was in middle school, and it was always dismissed as anxiety. However, it has become apparent (finally) to my physician parents that it is more than that and they have advocated me investigating.

Hi! I'm glad you have a diagnosis, I finally got one as well recently (though had been pretty confident for awhile that POTS was what was going on per the suggestion of my father who is a cardiologist). You and I sound quite similar - I do have times when my heart rate is exceptionally high and I'm super sensitive to positional changing and standing still/exercise; in general, though, it is relatively mild as compared to some others. I do notice, however, that mine is EXPONENTIALLY worse when extreme stress is involved! I also have panic disorder and major anxiety disorders, and during the times when that flares up, my POTS is terrible. I first felt as if something was going on with my heartrate during one of those flare ups! (But of course everyone just told me I was anxious haha as it's super similar in how it presents itself physically). Turns out I wasn't crazy! I would assume the correlation between stress and POTS has to do with adrenaline levels which increase with anxiety anyways and which our bodies don't regulate properly (or at least some of us); I also have GI issues related to it, and notice that is worse when I'm stressed and therefore when my heart rate is wacky. I just recently started a Beta Blocker, and it has helped SO MUCH! I feel like a normal human again! Haha. I hope you get some relief! Just remember, even though it's frustrating, and makes you feel ******, it won't kill ya We just have super human hearts that like to work out a lot! Lol. Good luck! Sarah

Thanks everyone!! I'm definitely really happy. No fatigue right now as I'm on a really low dose. If anything, I'm less fatigued as my heart isn't beating a million miles an hour all the time! That definitely takes it out of you lol.

So for the first time in my life, they have FINALLY put me on a beta blocker. Because my blood pressure is so low all the time, I'm on 10mg of Propranolol twice a day, and I can feel a tremendous difference just within the first 48 hours that I've taken it. Things that generally make my heart rate shoot out the roof don't, and I don't feel out of breath constantly... In general I finally feel as normal as I've felt in a long time!! Thank goodness for finally finding a doctor who recognized and labeled the POTS/dysautonomia symptoms and was proactive about it. I hope some of you all have had the same results!! Best, Sarah

I have to change sides constantly at night, as well. For whatever reason, if I lie too long on one side, my heart starts to race and it's mitigated by switching sides.

I often wake up in the middle of the night with a racing heart rate of around 160-170; sometimes it's caused by being startled awake and sometimes there is no real trigger. It is always accompanied with nausea, which is part of your adrenal response. I'm very sorry you experience these too, as I also get panic attacks as a result occasionally, and I wouldn't wish the feeling on anyone! I find taking a benadryl before falling asleep reduces the frequency of that happening. They also seem to be cyclical for me, happening very often for awhile and then all but disappearing.

Hello! I hope everyone is doing well and enjoying the holidays! I recently went to the doctor while home in Asheville to get checked out in regards to some chronic nausea I've been experiencing. By chance, my normal GP wasn't there and so I saw another woman who practices at that clinic. She, after seeing my vitals which were 98/62bp and a 105 hr just chillin in the chair haha, asked if I had heard of POTS. I said that I had, but no one has brought it up as a specific diagnosis. She then did some orthostatic tests and also explained my gi issues were most likely related to the POTS/dysautonomia. I was so freaking relieved that a physician brought these things up unprompted, and as she also treats EDS patients and is a specialist in the area, will def be seeing her from now on! Also, I just wondered if anyone else experiences any visual weirdness with a brain fog type feeling? My POTS symptoms have been worse recently and I've also noticed my eyesight is worse, especially in the dark/dimly lit areas and when yhwres any change in light brightness. A little disconcerting and so just wondered if anyone else experiences this?

Thanks y'all, all responses have been helpful. I've finally been able to convince my dad (who's a cardiologist) that something is going on because I've showed him my pulse rate on 3 separate occasions after simply standing up - and one sitting down - where it was over 120. For no apparent reason lol. But he doesn't know what to say, and he's one of the most knowledgeable doctors in the area so it's a bit intimidating for me to think about having to show it to someone who doesn't even know me without it being brushed off... It's clear to ME what's going on, as every single symptom I have fits with POTS/autonomic dysfunction (I got sick of being ignored about it and did a ton of research/am also familiar with a lot of medical jargon as it's dinner table conversation at our home) but I'm afraid that it's going to be much harder to convince somebody else. My dad is actually the one who brought up POTS as a possibility about a year and a half ago, but he never really encouraged me to see someone as I think most physicians are either unaware of how uncomfortable and crappy it can make you feel or it's just not common enough to know the correct treatment approach. Either way, I really hope that this new primary care person can at least get something started because I just want to feel normal! Lol. Have a good fourth!

Definitely could be related to your ear. When you were doing the neck stretches you could have easily triggered vertigo by doing something to your inner ear. Good news is, nothing really to worry about if that's what it is. I would just see your primary care person and they'll tell you if you need to see an ENT What you're describing sounds like vertigo, exactly.

Hey y'all... So I'm getting ready to finally see a new physician that hasn't ever met me before and I plan on bringing all of this weirdness up for her. I haven't done this yet, and figured it might be helpful. Below I've bulleted a list of symptoms I've been experiencing for the last 2 years or more. I was wondering if anyone had any advice on what to/not to bring up to this new doctor, what to emphasize, what maybe you all have experienced yourselves? Just general thoughts would be appreciate. (Sorry if some are a bit TMI, ranked in frequency and noticeability) Thanks so much!! *Stomach issues (food sensitivity, never normal bowel movements, pain, cramping, etc.), literally all the time every day. *Frequent bathroom trips in general (more than 3 times an hour, occasionally) *Frequent dizziness, lightheadedness, more often than not associate with exercise and change in position (although not debilitating) *Temperature sensitivity, extreme both ways (but frequently very cold); heartrate increases with heat, but heat is more tolerable?? *Headaches (feels like tension headache, but usually on right side and won't go away until I sleep it off - I don't get migraines!) *Waking up frequently in the middle of the night with VERY fast heartrate, chest feels hot and burning, usually stomach pain accompanies it. *Sinus tachycardia almost all the time, with generally low blood pressure *Extreme pain in my right lung when running; originally thought it was asthma, but my mother (who is a physician herself) has listened to my chest post-exercise and during the pain and there's no wheezing.) The pain often radiates up into my neck, jaw, under my tongue and ear. Subsides after I stop after about 10 min. I have an inhaler, ineffective. *Bad circulation, mostly on right side; hands and feet/legs especially always cold *Allergic to literally everything except for foods (though likely have a gluten issue, but no anaphylactic reactions to food) So yeah... Lol. It's a lot but I bring these things up as they're pretty constant and noticeable. It all seems unrelated when I look at it but all of these have begun and/or worsened in the same time period and many happen along with the others. Thoughts or suggestions on how to approach without sounding like a hypochondriac? Happy 4th everybody Sarah

I have all of those symptoms, the chest pain and tightness generally happens when I run and/or go to the bathroom/change positions. Do you find it increases then? I also have constant stomach issues. I'm also in the process of trying to figure out what the heck is going on. Let us know how it goes for you! I know it's super annoying to have all these seemingly unrelated issues that bother you constantly.

That happens to me all the time!!!! Often times it's triggered by heat/temp. change, sometimes irritation based on contact with fabric or whatever, and sometimes it just randomly decides to happen. Always on the side of my face or on my neck. Super annoying. I usually take a benadryl and am fine

Hey y'all, So I haven't posted recently as I was in the midst of moving back home to NC (YAY!!) And am getting ready to start my job with City Year (Americorps) in a new location. My most noticeable symptoms recently have been hypersensitivity to cold, continued fast heartrate issues even though I honestly am so used to the weirdness I hardly notice it anymore, and constant allergic reactions to stuff (most frequently in the form of contact allergies). The coldness always happens when I'm in AC - I know that's weird, usually people are heat sensitive, which I def do experience in terms of my heartrate, but I am cold ALL THE TIME!! I say it to my family and they take it jokingly, as I usually am sarcastic about it, but it is legit ALL THE TIME if I'm not in warm weather. It has been extraordinarily hot here in in NC for the past month and it feels pretty amazing to me. Does anyone else experience this? Even writing this post right now my nose is numb and feels like I've been outside in the cold for the past hour and I'm laying under 3 blankets in bed lol. Also in regards to allergies, I had an asthma attack related to allergies for the first time on the day of my graduation; I just drove past someone mowing grass on the side of the road and within 5 minutes couldn't stop coughing and could barely breathe. Luckily I was with my mom who is a physician and she told me to use my inhaler and take a benadryl - thank goodness I had both - and was fine within about 20 min. But that's the first time I've ever had that happen... Anywho, I'm looking into getting a new primary care person as the one I have had since I was little is primarily a family medicine person. I'd prefer to go to someone who focuses on adults, and I'm hoping a fresh ear to listen to all these weird but frequent issues I've had will help out some Thanks and hope y'all are doing well! Stay cool in the heat (but not too cold ) Sarah

This made me feel very validated for sure. Because I experience 90%of these things, all of which before I thought were totally unrelated. It's comforting to know it's all part of the same thing going on.

I get short of breath when I talk. I've only noticed this over the past couple of months, and my heart rate recently has been ridiculously irregular and random (irregular in that it will get really high for no reason and really low in certain situations). I also experience that low, thumping heart rate that causes me to have a painful pressure in my head in these situations. I haven't seen anyone yet about all this so I can't really make a suggestion, but you're not alone!

I also have major anxiety issues and panic disorder, and I get MAJOR brain fog related to that. Maybe your anxiety is the root cause? I would mention that to your physician as well. I can't remember anything when I am super anxious and can't even drive safely.

I would also suggest probably not just sitting at your computer all day, that can be under-stimulating. Maybe try reading a book or doing something visual? Some sort of artistic or intellectually stimulating activity. And lack of exercise could definitely contribute, which I know is not necessarily something that you can change right now but I would try to stimulate yourself as much as you can. Anyone, POTS or no POTS, would experience some sort of disorientation if they didn't have a break from the computer. I majored in photography in college and spent much of my time staring at a screen and would feel very disoriented/have a headache/just not right if I spent more than a few hours without a break. I hope that helps! I'm all about art, try that.

That is exactly the kind of dizziness I experience regularly. It's hard to explain because it's not "going to fall over" type-dizzy, it's much closer to just a general disorientation/lack of sobriety dizzy. And it is generally accompanied by palpitations/weird visual stuff. Opposite to you though, it's generally worse in the morning and gets better the more I move around. The more I stay still for a long time (sitting down or standing), the worse it tends to get. Hope that's somewhat comforting! Sarah

Thank you Sarah! You are too kind. I really, really, REALLY think I need to do the holter monitor. I can't ignore this stuff anymore. I'm going to really start pushing someone to listen to me. I can't thank you and everyone else enough, you all have been responsible for making me feel like I CAN push this and not sound like a crazy person.

Thanks ya'll! It's comforting to know that this is not out of the ordinary for others, as well! I can usually tell when my blood pressure is getting low and try to have a gatorade with me almost all the time. That usually helps a lot.

I have some really odd spells where it feels like when you stand up too quickly except it happens when I've already been in one position without a change for awhile (like standing or sitting down.) I feel dizzy and short of breath, and like my blood pressure is dropping really quickly. It's very odd - one of my students today even pointed out that I was short of breath (keep in mind I'm 23 and in shape and was simply walking down the hallway with him...) Afterwards I tend to have a stomach ache/gurgly stomach... the whole thing is just very strange. Has anyone had this issue with POTS? Sarah

I have recently noticed (over the past 3-4 months) that I've been swallowing things down the wrong pipe quite frequently! I thought I was the only one to have this odd thing happen!

I don't get angry agitated but I often get extremely emotional afterwards - particularly when I wake up in the middle of the night with a crazy heartrate; I can't stop crying. I think alot of this has to do with the panic attack that the tachycardia usually triggers but it could be similar to what your daughter experiences. Not sure if that helps at all!