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Guest Hanice

Does Anyone On Here (With Pots) Only Feel Bad When They Stand Up?

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Nope - some symptoms persist at times even after sitting or lying down. Ex: headaches, tachy can persist, head feeling full and generalized "wonky" feeling

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Guest Alex

This is something I've been trying to understand for quite a while - if it's called Postural Tachy why do my symptoms persist even when lying down?! In most cases lying down doesn't relieve my symptoms. The tachycardia persists most times, the chest pain is there regardless of my position, as well as the generalized "wonky" feling, like Enid said above.

How about you Hanice?

Alex

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Heck no, I have symptoms all the time. Before I got on meds I was sick all day every day, whether I was standing, sitting, or lying down. Of course standing made my symptoms worse but I didn't know it. Sometimes, before I got diagnosed, I took hot showers to try and calm myself, thinking it might make me feel better, ha. POTS is a misleading title. POTS is so much more than tachy while being upright. I would not be surprised if it gets changed once the medical field becomes more educated about the disorder. Maybe if the title better represented the disorder, it would come up more often in the doctor's office when a person complains of fatigue, insomnia, nerve pain, etc.

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It makes sense to me certain symptoms persists even after lying down but the name makes it seems this wouldn't be the case (I prefer to just say a type of dysautonomia called POTS). It is sort of like how it hurts where you got punched even after the actual punching part is over.

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Guest Hanice

Alex, I feel awful when Im sitting down too, breathlessness, sever "anxiety", just an overall "I'm dying" feeling. I get these little poking pains in my heart area. It really just gets on my nerves. Lol Im so punny.

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For me, lightheadness, brain fog mostly happen when standing up or sitting. Tachycardia is worse. As for other symptoms, that list is long, I don't notice a relation to orthostatic posture.

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me too! the symptoms never really end......just wax and wane no matter the body position.....I usually tell people now I have autonomic nervous system disorder.....POTS just doesn't cover everything especially now with the MCAS/EDS on top of it.... :P

Bren

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I definitely feel best lying down, worse sitting, and my worst standing. The hallmark of the syndrome though is very clear for me - I have tachycardia generally only while standing.

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a little of both worlds for me. i feel worse standing and sitting in an upright position. at work, i lean my chair back as far as i can, and it's pretty low to the ground (reducing the length from the floor to my brain). i definitely feel better sitting with my legs up or curled beneath me (like sitting on the couch), but there are times when i am symptomatic no matter what i do, on bad days.

if i sit, it's best not to sit all the way upright.

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This is something I've been trying to understand for quite a while - if it's called Postural Tachy why do my symptoms persist even when lying down?! In most cases lying down doesn't relieve my symptoms. The tachycardia persists most times, the chest pain is there regardless of my position, as well as the generalized "wonky" feling, like Enid said above.

How about you Hanice?

Alex

it has been a long time since i've been active on this forum. the names of some active members have changed. so, i may be repeating things i've said earlier 1-2 yrs ago. ;)

i don't think the terminology actually matters. i prefer to use "dysautonomia" because the details of each illness may be different, but the overall illness is the same. i don't technically qualify for POTS becs my HR jumped 20 and not 30 for the TTT. however, i pool in my feet and my vitals get hyper before they drop and i get pre-syncope symptoms. pretty sure you couldn't call this NCS, either. i honestly don't know what my true diagnosis is, and my doc didn't label it, either, other than "pooling." and neuropathy. i do call myself hyper POTS, though, because i know i'm hyper and POTS is what people recognize most when referring to this illness.

the postural part is just one of the details that is used to label the illness, but i think the illness needs a better name.

i think what they do at autonomic centers is basically figure out the mechanism of how your body fails so that they can target medications better, and that is the reason for the labels. i have yet to figure out if people are really helped by any treatment, or if their illness simply runs its course and goes away.

as for having symptoms while lying down, i think a lot of us go through that (see my sleep / nighttime incident thread).

my first doc (well-meaning but not very experienced with this) told me to stay hydrated and lie down when i had a fainting episode. when i asked him what do to when i got a fainting spell in the middle of the night and was ALREADY LYING DOWN, he was stumped. lol. he had nothing to say at that point!

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I think the problem, Anoj, is unfortunately much greater than that. POTS is just what its title says - a cluster of symptoms, a syndrome, caused by a variety of different diseases. The people on this board that label themselves as having POTS as a primary condition are actually generally suffering from a large multitude of different diseases in my opinion. Therefore one's advice about what works is often useless for someone else. The only thing everyone with POTS for sure has in common is the abnormally high rise in heart rate when standing... of course if you zoom out further and look at dysautonomia, not even that is held in common... and then we maybe dealing with yet an even bigger set of conditions. Sorry to derail this thread a bit.

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I wholeheartedly believe that if POTS had a more accurate label, my doctor would have recognized it sooner. It took a year and a half of countless tests and specialists before I was diagnosed with POTS, because neither me or my doctor realized that posture played a significant roll in my condition. Yeah, I felt better when I was resting, but doesn't every sick person? It is not always as clear as it seems. Maybe it is too much to ask that all doctors suddenly familiarize themselves with the disorder right now. Obviously that is going to take time. But giving it a title that points doctors to the right diagnosis, that would be huge for those people who are sick every day and still don't know why. They should at least put fatigue in the title, I mean, come on.

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I think the problem, Anoj, is unfortunately much greater than that. POTS is just what its title says - a cluster of symptoms, a syndrome, caused by a variety of different diseases. The people on this board that label themselves as having POTS as a primary condition are actually generally suffering from a large multitude of different diseases in my opinion. Therefore one's advice about what works is often useless for someone else. The only thing everyone with POTS for sure has in common is the abnormally high rise in heart rate when standing... of course if you zoom out further and look at dysautonomia, not even that is held in common... and then we maybe dealing with yet an even bigger set of conditions. Sorry to derail this thread a bit.

i agree with you, and that is evidenced by the fact that tachy is / was not every my main problem - fainting was. or, pre-syncope. my heart only races when i am in a severe crisis, about to faint. so, i'm not in the tachy when standing category. and, honestly, that hasn't happened in a while. (knock on wood) my main problem is lightheadedness, pooling, fatigue, sleep problems, and dizziness. imo, symptoms of "dysautonomia."

the problem is the whole "syndrome" aspect of diagnosis. a syndrome is the end of the problem, not the beginning. what actually causes things would be more scientific and accurate, as i'm sure many of us would agree.

i will post some more in the other thread about labels.

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Nope. I feel a lot worse standing mostly, but I can feel very bad sitting or even lying down. The tachycardia is worse standing, with occasional exceptions.

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I understand the frustration. As someone with neurocardiogenic syncope, you would think i'd only have problems standing, but it's just not true. Sure, my worst problems are while standing, but I always had a lot of problems, even sitting. Low blood pressure, high heart rate, all that happened while sitting around. The standing just made it worse.

Thankfully my medications are helping out a great deal, along with fluids and salt. So it's not quite so bad as it used to be!

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yes as long as I haven't eaten any of the foods that I'm intolerant of

or taken too much of any med that affects my brain (benadryl, klonopin,

or pain med) and I'm not hungry or suffering from low blood sugar.

it takes me a solid hour to recover from a pots episode tho. I have pots

episodes everytime I'm upright for too long. For me that's typically 20 - 30 minutes of standing. Doing the dishes or cooking nails me.

Most of my symptoms were from intolerances and allergies.

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