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Hey Josh, I went through all the typical heart tests (ekg, stress test, holter monitor, bubble test) and I was seeing my cardiologist for chest pressure/ tightness and just a very uncomfortable bloated feeling, or sometimes it felt like I was carrying a weight on my chest. My cardiologist believed it was somehow related to my POTS, after most my tests were normal, and didn't seem too interested in finding out if it was some sort of microvascular angina.

Here is our physicians list of knowledgable POTS doctors, it may be worth taking a look at and seeing if there is one in your area, they may be able to run a TTT for you: http://dinet.org/index.php/physician-list

Did you doctor's believe your POTS to be caused by an allergic reaction?

Hey Josh, have you had a positive tilt table test?

For myself I find that staying in a routine works best, and I try to get up early in the morning. I usually feel a little worse for the first 30 minutes but overall feel better throughout the day, than if I were sleeping in. If I sleep in too late I typically feel my worst, almost like I have a hangover feeling the rest of the day.

Hi Lee, welcome to the forum, like Katie said it seems like it would be good for you to try and find a autonomic specialist who has a better understanding of this illness. Anxiety is common for POTS people, for me personally, my anxiety is exacerbated by the POTS, I see it more as just another symptom of my autonomic issues. Digestive issues are also common, I find that my digestive tract is constantly out of wack. Have you tried using compression stockings or salt and water loading to see if they help the way you feel?

I have POTS as well and feel as though I always have symptoms to a certain degree, or are always working up to symptoms if I am up and about. For me it is almost like having a new sense of 'normal' that is never completely as stable as the old 'normal' I used to know, my body always feels like its trying to get to a state of homeostasis but never actually getting there; I do tend to feel a bit different from day to day, hour to hour, depending on what I am doing.

Thanks for this Katie

Hey Matt, just had to comment, I that cloudy perception of my surrounds feeling all the time, it's one of the first symptoms that Aleta me that I am beginning to push my body past its limits, but I often get it throughout the day almost as a normal daily occurance.

I've heard of the Alice in wonderland syndrome, you said you had it every day, can you explain what it was like for you? I only ask because I have depersonalization disorder which my doctors thought may have been related in some way to my migraines but it's been a daily thing and when it was at its worst I always explain that the world felt very day dreaming and Alice in wonderland like.

Have your doctors recommended any medications to help with your heart rate increases? There are other members on the forum who have dealt with challenges in the disability process, hopefully they can chime in and share some insight for you.

Has your doctor offered any insight into this? Or any other test/ diagnosis was to exclude other possible causes?

That's great news Draven! Good to see that your neurologist recognized your issues as possibly POTS related. Hope the tilt table tests go well and solidify your diagnosis.

Here is the physicians list http://dinet.org/index.php/physician-list, you can look up knowledgable POTS doctors by state; it looks like there is four near you.

Days like that can be tough, if my body doesn't feel like it's already been pushed too far, then sometimes I find just sitting for an hour and focusing on something else, and then going back to the dishes later after my body had time to settle, can help me get things done. I may also put compression stockings on as I sit, as they tend to make me feel a bit better. Other days though I just have to move the housework to the next day, I do feel guilty about it sometimes, but I'm learning to better listen to what my body needs and not force the expectation of what I would be doing if I were healthy.

I've had the burning sensation, to me it feels kind of like sunburn on the inside of my chest. My chest pai typically feels like constriction rather than pain. All my cardio tests were normal though, so they said its probably related to POTS, might be microvascular angina.

I find that typically before breakfast, so like the first hour I'm up, I am more sensitive symptom-wise. But once I eat and have been up for an hour or so my body is more at its normal state.

Not knowing much about the Polar HR monitor, I'm wondering if it is just a wrist one, or if it has the chest strap? As the monitors that only do the wrist are not always accurate, but the chest strap ones are typically more accurate. Remember that your pulse is just how fast your heart is beating not necessarily how hard it is beating, have you taken bp readings during these symptomatic episodes? Our symptoms do not necessarily have to correspond to our vital readings, so you can be more symptomatic overall even when your hr readings seem "okay", or better than other times.

One of my doctors explained to me that some people have problems with the salt tabs, they mentioned stomach upset and things like that. I get a bad migraines as well and have found if I drink salt water with too much salt my body does sometimes react with head pain. I'm not sure how much salt to water you should be in taking but I typically I will add more salt to my food and then drink a glas or two of salt water a day and use enough salt where it can help, but I still tolerate it. My cardio suggested drinking a liter of water right when I wake up which seems like a lot, but I think it outlines that I should be drinking more water than what my typical diet pattern had in it prior to POTS.

I've been to Mayo to see an autonomic specialist, they did run a bunch of tests (tilt table, blood work, mri, eeg to mention a few) but only the tilt table was abnormal which showed POTS. So they diagnosed me and gave me some leg exercises to start doing. They didn't feel in my case that any meds should be prescribed, and if I was seeing a local doctor at home they would inform them about POTS as an illness. I would say it was good for a diagnosis, and ruling other things about but it hasn't changed my quality of life at all, that being said I am yet to find a doctor or medication that has worked well for me, still searching though.

Did you do any major changes in altitude? That is kinda what I'm thinking my body would react most to, and barometric changes.

Hey everyone I'm wondering what everyone's experiences are with long distance road trips. I live in Chicago and have a family event happening around Miami, Florida. I haven't flown since my POTS was way worse because even when I had very few POTS symptoms flying was very hard on me, especially if I had to drive a while after flying, it seemed like changes in elevation just completely messed with my brain. Wondering how everyone else has responded and how your symptoms were affected? I'm definately feeling some family guilt and I think it's just because it's so difficult for them to really understand how bad "bad" can get, because on those days on the outside they just see me looking fine but laying in bed all day.

That was an interesting read, thank you for sharing!

When I overdue it physically and am recovering from that, my arms would sometimes feel weird to me; not like I'm less strong, but more like I felt less connected like a slight lack of feeling with them even though I could move them around normally.

My POTS symptoms tend to be a bit exaggerated whenever I get the flu, but its always just been temporary until I start coming out of it. I'm not sure if we are at higher risk for flue complications though.