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-Yea dkd your kinda explaining it how it feels to me, almost like a you suddenly loose the the sensation for a second, so if its my breathing it will feel like that part of my body just turns off for a second, forcing me to take a forcefull deep breath and kinda puts me in a panic for a second. And yea there is a head sensation each time it happens i just assumed it was my head going into panic mode for a second but that roller coaster thing you describe definately makes sense. -Hanice i think what i'm trying to describe is a bit different, but i do get werid heart sensations like my whole chest will just feel messed up, or just feel "bad", or feel fluttery for a while, or just almost like a lightheadedness for my heart type of sensation.

Hey everybody i wanted to see if anyone get this thing that i do from time to time, its sort of hard to explain but i'll give it a try: i notice that sometimes it almost feels like i get these random sudden changes in how some part of my body feels, like sometimes it will feel like theres a changed in how my breathing feels, or it feels like it just turns off for a second which then forces me to take in a deep breath, or with sometimes when eating swallowing food will feel weird for a second or two and then go back to normal, and with my heart it will seem like something just feels weird with it for a few seconds and then goes back to normal. None of this is painful, and its not exactly a lack of sensation because i can still feel it, its almost like my body percieves these sensations differently for a minute, like someone turns a switch off and then back on a again, and i usually get a quick kind of feeling like my head goes into panic mode for a second and then it goes back to normal agian, just leaving me feeling weird. Hopefully that makes sense its kind of hard to describe if i can think of a better way to put it i'll add it later, but just wanted to see if anyone gets anything similair, thanks.

heres what i have tried, and everyones different so something that didn't work for me could work for you -verapamil- which did not work for me, was a partial preventative but instead of headaches i would get really wierd episodes which were not a normal type of reaciton so it could work for you -amitriptyline- which i'm currently on, and is the only thing that stopped the headaches other than a random one, or if i eat my trigger foods, and for some reason is the only med that didn't give me side effects but i started at a low dose and moved up very slowly becasue i'm supersensitive to meds now -also tried atenolol but it didn't do it for me as far as stopping the headaches

Hey everybody, so i know this is one of those embarrasing or touchy topics but i'm hoping i'm not alone in this and wanted to see if anyone else gets similair reactions that i do. Sometimes i'll notice after sex ill just have some minor head dizziness, and then other times even just arousal can cause me chest tightness and a too much adrenaline type feeling, which it makes my arms and hands feel jittery. This all started around the same time I began having my major POTS symptoms so I feel like it is related, I'm wondering if my body is just more sensitive to the chemicals that are released or something, and also i dont know if i have hyper POTS or what type, but just wanted to see if anyone gets this, thanks.

25, 21 when i started having neurological problems

Here also, i tend to feel like women are much better at understanding the day to day struggles with this disorder and actually want to engage in understanding, while most of my guy friends i tend to loose after i start explaining what POTS stands for, end of conversation, but yes i'm very aware are of the fact that both with POTS and migraine there tend to be statistically more women than men who are affected by these conditions, i just happen to be one of those lucky ones.

momtoguiliana- yes i'm on a beta blocker now atenolol only 12.5 mg because 25mg puts me into a fog and i just feel like i'm not getting enough oxegen to my brain, but since it hasn't had a huge affect on my symptoms other than keep my hr from jumping when sitting to standing, my Dr. wants me to try gabapenton lejones1- yes i also have migraine which was pretty much blamed as the culprit for the last four years since i also had an increase in headaches, so all the visual stuff they say "could" be migraine, as well as spells of vertigo or any other head pains/ pressure. However i also have all the symptoms of depersonalization disorder which most people have alot of those visual symptoms that go with it (but its not written in dsm manuals), but i found its nearly impossible to get a diagnosis of depersonalization disorder because most doctors havent heard of it. but in the first 3 months 4 years ago when everything started i had such bad brainfog and super irritability, like if three people were talking in a room it was like way to much for my brain to handle. And the POTS diagonosis is very recent becasue i became exercise intolerant and have had many other neurological symptoms since one particular headrush, but i'm sure i would have tested positive for POTS as well years ago because i also felt so lightheaded when standing up too long, but my doctors didnt really focus on that because i had so many other symptoms. but yes i get so many of these weird snesations like i can feel tons of head pressure throughout the day and then if i take a shower it might change it to feel like inflamation, and each day is totally different and i might have 4-5 days dealing with one sort of issue and then it goes away and i might get somethign else. But my Dr. whos a migraine specialist kidna informed me that yea i have alot of migraine issues, i hae the POTS, and depersonalization stuff, as well as an anxiety disorder so its impossible for them to say which symptoms come from one thing or the other, and i tend to fall into a gray area of being inbetween a number of disorders. akgirl and everyone else- thank you all for your responses, does anyone ever get the feeling like their head feels fragile or weak? thats one of the worst symptoms for me its not that its painful but it just feels like your brains ready to shutdown, and sometimes i get nausea, or kinda arm and leg weakness when those things happen?

I'm on a beta block and also have an epipen but its for shelfish and iodine allergies, i've fortunately never had to have used it. Personally i'm more affraide of what the adrenaline from my epi would ever do to me if i had to use it, but i have a couple of them so i guess if the first one did not work i could always used the second, but that might be alot of adrenaline. What is your epi for?

These are all in addition, these all started after having a headrush about 8months ago that follwoed with head dizziness and a prolong thing where my vision felt weird and ever since if i do anything physical i get all these symptoms. However i've only recently been diagnosed with POTS, but for the last 4 years also have had these symptoms: increase in migriane frequency visual snow 24/7 negative afterimages 24/7 depersonalization/ derealization 24/7 brain fog sleep never refreshes me, sometimes i wake up completely exhausted lots of headrushes (only bad since the one that triggered by newere symptoms) pressure in head stomach pains, naseau light sensitivity 24/7 halos around lights at night sensitivity to strong smells (affects my light sensitivity weirdly, could be migraine) i did develope almost constant anxiety type state which was a problem years ago constant hangover/ feeling like i'm in a daze type state (was helped years ago) idk i had like a million symptoms four years ago, still have a number of them but POTS was not considered until recently when basically one day getting a headrush (which wasn't odd for me) pretty much changed everything for my head and the way my body reacts also with the exercise intolerance episodes i also get lightheaded but differently than passing out, constantly feel like i'm in a cloud, random bursts of anxiety while falling asleep, random anxiety/POTS attacks, body weakness, and just overall feeling like death

Hey everybody just wanted to see how each of you feel on a daily basis? I feel like personally i'm constantly in between recovering from one episode to the next, whether it be caused by walking to far, picking something up that i shouldn't have, standing up to quickly, or just a random mix of what the day throws at me. But i guess consistency is something that is non existent in my life, and i constantly have head symptoms or cognitive symptoms, also coupled with the random chest pressure or fatigue and i constantly feel like i'm in some post concussion state (never have had a concussion) and i never feel right, here are my weekly symptoms: -head pressure (can feel either like someone is blowing up a baloon in my head, or squeezing my head with a vice) -head pains (sometimes short sharp stabbing pains, other times just randome pains in different areas of my head, i wouldn't call them headaches because they seem to vary throughout the day and are not specific to one spot, i also get migraines ocassionally) -brain fog and depersonalization (sometimes i just feel like the bloodflow in my head causes me to feel foggy, other times it can be tied with the head pressure, depersonalization is somethign i've had chornically for years but is made worse by my exercise intolerance) -mental fatigue/ malaise (is weird, my body never feels tired but my head feels so overworked but its different than tiredness) -cognitively feeling like i'm in a fog/ like my brain has some weird hangover affect (this usually affects my visual processing somewhat as well) -overall just feeling "fragile" or weak in my head like i've recently had a concussion or drank heavily for a week straight (usually i'll have to lie down, or sit alot if i get these feelings) -all of this is also coupled with sometimes feeling a "lack of sensation of my body" usually with my arms, or the opposite where my arms and legs feel a bit heavy overall my brain just never feels normal it always has pains, or pressure, or feels inflamed or like i'm recovering from some sorte of damge or somethign like i've been through some sorte of trauama only that trauma is usaully walking to far (3 blocks) or standing up to fast which can bring the sharp stabbing pains sometimes, but it just takes so long for my body to recover from these episodes usually each one lasts about a week and they are constantly overlapping. Anyways sorry for the super long post and thank you in advance for any response, just want to see if this is "normal" for any of you

Yea unfortunately i get such a long lasting after effect which puts my brain off for days, still not sure why or if this is normal for POTS? if anyone else has any weird exercise intolerant type issues i'd love to hear your experiences

So i've had more extercise/ physical exertion intolerance stuff lately and wanted to see if anyone could relate, i've managed to get how i'm feeling in to words better so hopefully it makes more sense, weird feelings tend to be difficult to describe, but heres what happend and happens each time i walk too far or exercise etc.: walk to far- head starts to feel swimmy/ vasodilated depersonalization and detached feeling starts (very visual based) brain fog/ spacy/ not in touch with things, and feel weirdly disoriented and not with it pressure and slight pain in the middle top of head, the middle of my head feels fragile (always feel this in the same spot each time) and i get mental fatigue this all comes on pretty quick, in my most recent case after walking 2-3 blocks that whole sequence started and then the feelings last for 3-5 days with weird head pressure and different head pains throughout each day, and a fragile feeling in my head like my brain has recently been rocked, as well as a general malaise/ mental exhausted type feeling the only thing is my symptoms are pretty much just my head, the rest of my body might feel like like my arms in particular on days 2-5, but its mostly just my head not other areas of my body that are really affected, and i dont really feel like my HR is skyrocketing at any point in all of this, any one else? just me?

first off thanks for the replies im glad my question didn't get lost in the shuffle of the other topics, and sorry it is difficult to explain this head sensation unfortunately i feel like there are a million words for the different types of head pain but a total lack of terminology for weird or odd feelings, so i'll try to explain it a bit better it is almost if everytime i do something physical or stand up to fast i am reagrivating something in my head and it just makes me feel like there is something phsyically differnet in my head for the next few days, mixed in with a bit of inner head dizziness (though my body doesnt feel off balanced), mixed with not quite lightheadedness but i definately a drained type feeling , mixed with a weird bad hangover feeling, idk its hard to describe because it doesnt exactly feel like anything else outside of my POTS symptoms or since i've been exercise intolerant so its a bit weird; its almost like if you could imagine being run down on sleep really hungover and being put in a hot environment but the physical feeling is specific to only your head and how your feeling mentally. But to respond to your posts Misstraci and Freaked can you try to explain your "seizurey" head feelings because i think i've had that as well but its another one of those feelings that would be difficult to explain so if you could try and explain that in more detail i'd be interested. bebe i have not been to an ent just neurologists up at Mayo who assume most of my neurological symptoms are a mixure of POTS and migraine (i also get migrain associated vertigo, which i was informed by my doctor is something that they dont even know what it exactly is or at least not the mechanism behind it), and Hanice i've had the visual symptoms for about 4 years without any major exercise intolerance (the exercise intolerance and headrushes is what had the doctors give me a TTT which showed some sign of POTS), but to answer your responce my eye aren't usually dilated which was one thing i used to check just to make sure they were doing fine since my other visual symptoms dont manifest in any outwardly physical ways, but its nice to see i'm not the only one with derealization does yours affect how you feel mentally? like sometimes i feel like i'm in a bubble or just detached from everything, and things look almost picture like or a bit alice in wonderland-like at times? And i do know what you mean by lines and stuff sticking out too much and going to grocerie stores, sometims i find it difficult to find what i'm shopping for because there so many items in each isle its like trying to do an eye spy book, but that sort of visual overload is a bit different to what i feel after physical exertions, but at times it does make my head feel a bit bubbly if that makes sense

Hey everybody i've read alot of posts with people writing of "feeling sick", having "bad days" but i was wondering how your head feels physically during any of these bad days or when you have bad episodes, or even exercise induced episodes. Because for me one of the main symptoms is this odd negative sensation i have in my head starting immediatly after any physical exeration whether it be walking too far (which is not far at all these days), or picking up something heavy and moving it; i get a negative, somewhat physically irritating feeling in my head which is a mix of head pain but on a very low scale, a hangover type feeling, some slow vertigo or head dizziness, and it sort of feels like my head has a split in it. Usually this is the "i've overdone it" signal for me, it imediatly comes after these physical events but lasts for 3-4 days where usually later the first day i'll also get this thing where my brain seems to be processing what i am seeing slower than usual and sometimes i'll be looking at stuff and have a harder time than usual being able to tell what i'm looking it, and i'll have major mental fatigue where i'm just completely mentally exhausted for hours, but my body doesn't really feel bad, nor does my heart. just to mention i also have these 24/7 visual symptoms visual snow (looks like static across my whole visual field) halos around lights palinopsia (trail after moving object, like waving a hand in my face has a trail follwoing it) sensitivity to light negative afterimages from moving objects depersonalization and derealization

Thanks for those quick replies, i guess what my current problem is if i do any "exercise" or anything physical for an extended period of time i will be in bed for 5-6 days just feeling awful and cognitively out of it, or if i do anything even remotely physical lets say carry something thats sort of heavy for 30 seconds to a minute my head will feel bad and i'll be out of it for about 4 days, or this will be triggered by standing up too fast and getting sharp head pains because of it which then makes me feel bad and out of it for 4-5 days. So i'm kind in this endless cycle of doing something that normally for me i would hardly consider a physical exertion and having to pay for it for days so i never really feel good or relatively normal for more than a day or two at a time, so i'm just wondering is this normal for anyone? like this severe and long lasting of a reaction over what seems like very short term and little physical exertion? and how does your head feel or cognitively do you feel when you have bad reactions to exercise or physical exertion?

Hey girls and guys i am new to the forum and after recently being diagnosed with POTS find myself with many questions/ experiences that are a bit different from what i have read about from others sharing their experiences so i'm trying to be as concise as possible but if you could give this a read i would really appreciate any support as well as experiences that you all may have that may be similair to what i'm going through. To give you a short backround on my health; for about 4 years i've had neurological problems which consisted of migraines with aura, all the symptoms of depersonalization disorder (constant depersonalization/ derealization 24/7), as well as constant visual symptoms which include sensitivity to light, visual snow, negative afterimages from normal objects, trails following moving objects (all of these are persistent 24/7), generalized anxiety and some panic attacks, and i also had a number of more "physical" symptoms that were never really explained and could be a part of the POTS, those symptoms are sensitivity to all meds/ substances, sleep makes me feel anywhere from tired to completely exhausted and never refreshing, really bad irritability (alot of times made worse by loud environments/ flashing lights and such), brainfog/ just feeling out of it (also made worse by louder more active environments), headrushes frequently, as well as just weird mental hangover feelings that could persist throughout the day, and bad longer term memory as well as short term memory during certain episodes. I also have alot more symptoms that have either gone away or gotten better with the help of medications but alot of it that people dont seem to understand is theres not alot of consistancy throughout each day or hour to hour which all seems to go on its own schedule no matter what i am doing. So here is where my newer problems started, about six months ago i was getting up from a chair walking inside and got a head rush with the whole phosphense clouding over my vision and a few steps where my legs felt heavy and i basically just walked through it, however after the headrush went away i had a pinching feeling on top of my head as well as some inner head diziness, and it was hard to visually concentrate on things and part of my vision just felt off though it wasn't like a blindspot or anything. Anywyas the next 4-5 days i continued to to exercise and about an hour afterwards would have major head dizziness which didn't affect my balance but was just terrible to sit through and it did not seem to get better even when lying down. Anyways stopped all the exercise and basically had like 3 weeks of just feeling mentally mest up and in a wierd hangover state both visually and cognitively for the next 3 weeks and then i started feeling more normal for a week. So i decided to do a light walk/ jog on a treadmill and felt fine during the exercise but a half hour after started feeling awful which i've had on 3 seperate major occasion since, which are all relatively simialir in nature and all last about 5-6 days with day 3-4 being the worse for some reason, my somtoms of thses episodes consist of an overall physical discomfort/ uneasiness in my head (kinda feels like i have brain damage or am getting over a concussion, but it is not physically painful), pressure/ inflated feeling in different areas of my head, at times shaky arms (sometimes worsened by taking a shower), visually feel like i cannot keep up with wats going on around me (eg. wathcing tv its like the scenes of a comercial are moving to fast for me to process), cognitive mental fog that seems endless over these 5-6 days, when sleeping i get these random adrenaline type surges right when i'm falling asleep kinda like a sudden panic just when your on the brink of falling alseep (not myoclonic jerk), random feeling of a certain body function turning off like my heart/ breathing will just have a wierd sudden sense of non feeling or non sensation, and just overall feel like the bloodflow in my whole body is mest up like sitting at a counter i feel like i've had no sleep for days and am getting over a bad hangover and just want to pass out from having to sit up like that. So the last 3 times i've exercised or done anything remotely physicall like walk a few miles i've had these experiences each one worse than the last even though i've done progressively less exercise each time. Also if i stand up to fast sometiems i'll get sharp stabbing pains in my forhead that will then make me feel bad for about 4-5 days, or if i do anything like cary something heavy for half a minute i'll get the same response. Basically have had every neurological tests as far as mris and eegs and ekgs and the only thing thats ever showed anything including even the last 4 years has been the recent tilt talbe which showed i had "minor pots". So here are some questions: Hopefully this doesn't sound stupid (still very new to this disorder) but i I've noticed a number of posts where people talk about their exercise intolerance and say things like "i'll be sick and in bed for days" or "i'll feel terrible afterwards" but if you do not mind could some of you explain exactly what you are feeling? Because for me i always feel fine during the exercise as far as my heart or breathing goes, and even before this bad headrush episode which seemed to start my exercise intolerance i was long distance running and lifting 6 days a week without any symptoms other than feeling a bit disoriented for 20-30 minutes afterwards where now i'm basically in bed for days as explained in the above paragraph. And also how do you feel cognitivetly or mentally after doing exercise, or when you have bad exercise intolerance? because a big thing for me is this feeling in my head where i instantly know i pushed myself too far, and i will be out of it mentally for a number of days, but headaches are not usually a part of this.