valliali

yes, and they have definitely not always been like this. after i shower, the veins in my arms and hands are huge and bulged. i look like one of those really muscular weightlifters. i have a roadmap of veins on my chest and legs.

hi,

i am sorry that your daughter is not well, especially at so young. i was 23 when i became sick, and it has not been easy (i am 25 now).

the thing with POTS is that it seems to come and go, and it affects everyone really differently.

i do not experience nausea, so i cannot really offer any tips regarding drinking the recommended amount of water. your daughter might also find compression hose really helpful - they can be found online and there are a ton of recommendations on this website.

i find that i will sometimes go a couple of weeks feeling almost normal. then i will go through a couple of weeks where i cannot function at all. usually, i am somewhere in between. i have had symptoms that have remained constant these last two years, i have had symptoms that i haven't had for a year and a half, and i am still developing new symptoms. dealing with POTS is not consistent, which is why it is so hard to treat.

i would suggest that you and your daughter read up as much as possible about POTS. the medical community is not very well-informed about POTS and how to treat it, so i have found, and i think many others will agree, that i need to be my own advocate. i've had to request every drug i have tried, and finding the ones that work best for me has been entirely trial and error. i have gotten really sick on a lot of drugs, but have found relief from others. but i have had to do all the research to be my own advocate. i would encourage you guys to really research what you can expect.

again, i am sorry your daughter is dealing with these illnesses. however, you guys are fortunate to have a diagnosis, and now you can focus on treatment. hopefully she will find some good medical help really soon!

interesting. did you have symptoms of this all your life? did they come on suddenly? what triggered them?

hi -

i am going to look for your study, it sounds really interesting. i believe that i have a norepinephrine problem, and that is my main issue. i do not have pots. i don't have tachycardia upon standing, nor am i ever hardly dizzy. i do, however, have severe heart issues, inappropriate tachycardia, all kinds of arrythmias, as well as lots of panic, flushing, tremors, etc etc.

what is interesting to me is that the beta blockers help soooo many of my symptoms, like ones that i wouldn't think beta blockers should really help. it makes me wonder if i am super sensitive to norepinephrine or if something is off with it. i tested very low for normetanephrines, the metabolite of NE, but no one can explain the implications of that. all that indicates to me is that i am not metabolizing NE properly, or hardly. i had two 24 hour urine tests, both of which showed normal, even a little low-normal, values of NE.

did you have high values of NE? did you have your normetanephrines tested? how did you get your NET tested?

very interesting. thanks for sharing.

i believe anxiety in the morning can be a sign of low blood sugar, obviously because you are not eating during the night when you are asleep. have you had glucose tests? with insulin?

thanks, guys.

ramakentesh - your story is interesting. how did you get your carotid blood flow tested? i have sworn up and down this whole time that it feels like the blood is not able to flow out of my neck and gets blocked - clogging up my head and neck. i would like to get that checked. i seem to be intensely sensitive to norepinephrine because a beta blocker helps me soooooooo much, like more than it should, really. it helps symptoms that my doctors are really surprised about, and suspect it is because NE is really screwing up my body. i find the beta blockers help the pressure in my head and neck completely, here in california. but when flying or when in maryland, the beta blockers couldn't fight it off.

i am wondering if those of you sensitive to barometric pressures also have heart problems with it. i have a psvt, which almost never ever occurs in california. even when active or stressed. it has occurred minorly several times, but severely, only twice or three times. however, again, it was when i was flying, during the landing, and right after the landing, that i had debilitating episode after episode. SAME thing when in maryland. it was like constant arrythmias, sooooo intense. heart rates in the 230s with severe pounding.

after i flew the last time, i also found that i was having severe panic attacks the entire next day. in fact, it took days upon returning to california for that to subside. i honestly didn't even correlate it to the flying because i just assumed i was so worked up from how uncomfortable i was from the flying. but perhaps that was what caused the extreme rushes of panic and not feeling well for days, even a week, after?

i am really curious as to why this is happening. i would like some explanation as to why the pressure and heart are sooooooooooooooo ridiculous with low pressures. here in california, i feel my best in hot, dry temperatures. ironic huh? i loooooove the heat and absolutely no humidity at all.

hi -

i am preparing to fly home (from ca to maryland) soon, and am really really nervous. the last time i flew, i had intense series of psvt's and extreme anxiety, not mentally induced. during all flights, i had sudden and extreme reactions to landing. interestingly, i felt really good in the air, but definitely feared my life upon landing.

something i am really interested in is this strong reaction my body has to changes in humidity, barometric pressure and/or altitudes.

several months ago, i moved from california to maryland, having NO idea what i was in for. my father is sick, and i really wanted to be closer to home. however, literally as soon as i hit arkansas (i drove), i felt like death overcame me. i felt so horrible the two months i lived in maryland, before i had to move back to california, where i am feeling drastically better. when i felt my worst on the east coast was when the weather was rainy and cloudy. i am not really sure what this indicates, because it can also be rainy and cloudy here in california, but it is not very humid. so i am not sure if i was affected by the humidity or the barometric pressure changes. whatever it was, it was EXTREME.

in these conditions, i experience this overwhelming sensation of pressure in my head and neck. the pressure feels like blood. it feels like my blood is tar and barely moving through the veins and arteries, thus building up. or like i have had my head hanging over the end of the bed for hours. soooooooo much pressure. no pain though. when this happens, i also feel my heart beat pounding in my ears. it's like i grew a heart in my neck and head and it is so forcefully whooshing in those areas.

also, in that kind of weather or pressure change, i experience a great deal of shortness of breath and even worse, endless psvt's. my heart just races and pounds. i also have panic attack after panic attack.

so, i am wondering a few things. one, if anyone else experiences this? i know that there is talk of people experiencing pressure in their heads, but i am interested in knowing what kind of pressure this is. is it painful? or does it feel like blood clogged in those regions? can you feel your heart beat in your ears and head?

i am also curious about the affects that "east coast" weather have on some of you who live there or have experienced it? i was there for over two months, and these sensations did not get better at all. i do not think it was a matter of simply not adjusting. i do surprisingly adjust very quickly to new environments, so i'm pretty sure that these feelings would have continued if i had stayed there. in california, i am able to work and go to school. i can walk outside, even hike sometimes, and really, function quite well. in maryland, i had plans to work and attend school. i could hardly

thank you all soooo much!!!

i am interested in the mast cell disease. however, i have no other symptoms during a flush. the flushing really only occurs when i am cold and become warm, which, if i had a mast cell problem, i would expect other triggers as well???? also, shouldn't i expect other symptoms? i do feel very very warm when i flush.

i will really have to look into this. i agree that my symptoms sound very much like rosacea.

thanks, heiferfly, for the makeup suggestion! i actually don't wear makeup, but i think that something like what you are describing might really be useful for when i am flushing. when i'm not, skin looks terrific. but during a flush, i won't leave my house or allow anyone to see me. not the best existance.

thanks for all of your support!

thanks, firewatcher. great advice.

do you have other symptoms with your flushes? "allergic response" type of symptoms? do you have triggers?

my docs do know this is a problem for me, and all of them find it very interesting. but have no idea why it is happening. i just went and saw a POTS specialist for the first time who was really into the facial flushing, so she has referred me to an endo to get more help for it.

interestingly, the POTS doc does not think that i really have POTS, just some kind of autnomoic dysfunction with a cause. i got sick right after living in africa, so she is also sending me to an ID doc. she thinks that the flushing could be a sign of an active virus or infection. not sure.

i'm also interested in looking into lyme's.

but the mast cell is something i'm very interested in as well. i read that publication awhile ago, it just kind of got put on the shelf in order to address other problems. but the flushing is killllllling me, so i need to make it a priority!

thanks so much for your help.

thanks guys!! i am comforted to know i am not the only one struggling with this odd facial flushing. has anyone been diagnosed with rosacea? or do your docs think it is part of the POTS picture?

i have had pheo and carcinoid ruled out.

my RBC is normal. but i am interested in looking into mast cell problems. perhaps i should see an allergist?

hi all -

i just visited a dermatologist for the first time since i started flushing. he is recognized as the "top doc" in this city and came recommended on the rosacea site. just a recap, i don't know that i have rosacea, but i have really intense, bright red facial flushing that lasts hours. and burns like heck. it has been incredibly debilitating. i only flush when i am cold, then become warm. my body temp increases when this happens by a couple degrees, at least. i have had to give up soooo much because of the flushing. i can no longer enjoy my favorite winter activities, and i have had to put to rest my dream of working with wild animals (which would involve being outside in all kinds of temperatures). these things were very very important to me. plus, even worse, the flushing has made me super socially anxious. when i feel my face is red-hot, i can not look at anyone, talk to anyone, or basically function. i hate the flushing sooooo much. it is really unbearable to me.

so anyways, i don't know if this is rosacea or not. but it doesn't really matter what it is. it is debilitating.

so, i finally went and saw a dermatologist. after educating myself about rosacea, flushing, blood vessel damage, etc. i felt like i would be a good candidate for some laser treatment. i joined the rosacea forum, where i have read many many stories of people like me - only flushing; not having the acne like bumps that many people associate with rosacea. many of them have had wonderful results from laser. the reason is because every single time a flusher flushes, blood vessels are damaged, and more are formed. then, the next time that person flushes, the damaged blood vessels get some blood in them, but so do the new ones. then those new ones become damaged, and more are formed. so a person with rosacea, for example, ends up creating many new blood vessels. when you have a ton of blood vessels, obviously that is more room for blood to go, hence more redness and burning. it is a vicious cycle. given my major flushes, i think it is safe to assume that rosacea or not, i am going through the same process. so i went to the derm.

my dermatologist completely writ me off. he kept saying that it's clear i don't have rosacea because i have no inflammation and because i was not red at the time i saw him. he said it is clearly an autonomic nervous system dysfunction, and that he had no idea why i thought he could help me. he completely belittled me, repeadetly asking what i thought i would get out of him. when i tried to share my knowledge of blood vessel damage from prolonged flushing and the benefits of laser in curbing that damage, he told me i sound too educated to think he could do anything for me.

again, this is the top-rated dermatologist in my area.

that is fine if he feels there is nothing that can be done for me. i was not expecting a miracle cure. but to repeatedly ask me why i came to see him, that was crossing the ******* line. i tried to explain how much i have lost in my life due to this flushing and he kept telling me that my other issues (heart problems, etc) are the ones i should be concerned about. yes, i agree, and i do worry about those too, but the psychological impact that the flushing has had on my life is far greater than the other issues. what killed me the most was when my doctor said he would never want rosacea so i should be glad i don't have it. whatever the name of what i have is, flushing is flushing!! plus, if he would never want rosacea, then how dare he question me as to why i am visiting him for assistance. obviously the flushing is pretty darn damaging to me too. i don't know how much longer i can go on with this flushing with no treatment at all. the propanolol helps a little, but not much. i can't even blow dry my hair and straighten it anymore. i look like a crazed mountain woman. haha, not really, but i would love to be able to straighten my hair once in a while without knowing that i will be red and burning for ten hours.

his "treatment" - move to hawaii, southern california or florida. great, huh? oh sure, let me just pack up my bags now!!! doctor's orders!!!

he was the biggest ******* doctor yet. and i didn't think it could get much worse than the endo. he kept saying, "i don't mean to be mean, but i just don't know why you would think that a local dermatologist could help you with your autonomic problems. don't you understand that dermatolgists treat skin conditions??"

how demeaning is that??? as far as i'm concerned, a bright red freaking face that is taken seriously by every other doctor i see, but who don't have the means to treat it because they don't have LASERS, is a dermatologist's concern!!!!

what do i do?? see another? or accept that i am going to be a disgusting red monster forever? for anyone with facial flushing as a result of their dysautonomia, do you treat it? have you had laser? were you diagnosed with rosacea?

thanks for listening.

that is terrifying!!!!!!!!! so sorry to hear that but glad you are ok!!

just wondering if anyone else has severe pressure in their necks and heads? it feels like my blood is tar. i am not exactly sure it is my blood or blood vessels, but it sure feels like it. it's not ever painful, i never have a headache, but the pressure is overwhelming. it feels like the blood is stuck in my neck and head. kind of like if you hung your head over a bed for hours. only in my neck too.

i haven't had this for awhile, but i have it again today after stopping taking propranolol for the last four days because the side effects were too much for me. could my blood vessels just be out of control from norepinephrine?

thanks guys.

it is my fourth day on the extended release 60mg a day inderal, and the side effects are no better. i am totally checked out of the world, a definitely zombie. also severe headaches (which is interesting considering the drug is supposed to help headaches) and very lightheaded.

i am feeling really really bummed because this seems to be my last hope to curb the flushing. i know this might sound silly, but the flushing has been the most damaging of my symptoms. psychologically. it has completely changed me as a person and has made me very socially paranoid and anxious. it is probably the most benign of all my symptoms, but it is the one i want to fix the most.

so lo and behold, inderal has like completely stopped the flushing and blushing, and i feel so much back to my outgoing and confident personality. for the first time in two years.

however, i am also a zombie.

i am feeling really really hopeless because i wanted this drug to work sooooo bad. it is my last hope. i have tried all kinds of anti flushing and anti anxiety, and none have helped. the only drug i have been able to tolerate so far is toprol, so i assumed inderal would be my answer.

i definitely need to try lower doses of inderal because i think 60mg extended release is alot. i read the peak levels are reached in six hours, which means that there is a lot of the drug building up for much much longer than a shorter-acting version.

however, i am terrified that it won't work for me, like the tens of others i have tried. i don't know if it is worse to go back to feeling more "normal" but being completely incapacitated by anxiety and blushing and phobias, or to finally be free of all those issues but just be completely zoned out of the world.

yes!!! i totally get this. it's like the pitch of certain lower volumed noises just send my ears over the edge. they get really really sensitive and uncomfortable. and little noises sound a lot louder to me than others around me. no idea what causes this at all.

have you any of you guys taken this, or are taking it? did you have side effects to it at first?

i have just started 60mg of the inderal la (time-released). i have had some strange side effects. for the first four hours, it causes huge panic attacks. lots of sweating, nausea, diarrhea, dizziness, and a feeling of being totally out of it. like "trippy." i also noticed yesterday, my first day on it, that after about four hours on it, my body temperature went up to 99, which is way higher than it usually is (it was 98 degrees when i started on the inderal). today is my second day on it and it doesn't seem as bad as yesterday, so perhaps i am adjusting, but i am concerned about these strong reactions. especially because i had absolutely no side effects on toprol. however, the propranolol is proving to help dramatically with my facial flushing, which i am wililng to do almost anything for. yet, i do have concerns about taking a drug that my body needs to adjust to so much. on toprol, i immediately felt great on it and had no problems coming off of it. i don't really want my body to have to "adjust" because i imagine it will be **** to come off.

i am going to see a doctor who is educated about pots at stanford in two weeks. i have been waiting forever, so hopefully this provides some clues. i am not sure she sees a lot of pots patients though, and i have heard that she typically sends them right over to mayo. i cannot afford that now, or probably any time soon, so my hope is that she either says, yes you seem to have pots, or no and we need to figure out what it is.

i know that there are a lot of things that can cause ANS problems. i have no doubt i have an autonomic dysfunction, but i don't seem to fit into any of the "types." i was also worried about my pots diagnoses because i didn't have the heart rate upon standing. my diagnosis was from a cardio who has never had a pots patient who wrote, "the patient has some kind of autonomic dysfunction, probably some kind of POTS since it is the most common." yea, that is a really confident diagnosis.

but i just can't really find any other explanation for autonomic dysfunction. if it's not pots, then what? i don't really fit into any of the other categories. so i just feel like i have no idea what is going on.

hi heifefly -

i really don't have a change in heart rate upon postural changes from any position, hardly ever at all. from lying to sitting, sitting to standing or from lying to standing. really not much of a change. like i said, some days i will. maybe once a month or two my heart will race upon standing from lying down or sitting, occasionally. when this happens, i also have a huge surge of anxiety. but it is honestly the least of my symptoms. my most concerning is the racing heart i experience upon minimal exertion. and sudden surges where my heart races to high end, pounds the hardest i could imagine it being able to pound without breaking my ribcage, and creates huge huge huge surges of panic. my doc diagnosed me with pots because one of these episodes happened at the end of my ttt, and he said it was sinus tachycardia. he said he has never seen or heard of that reaction before. these episodes do tend to happen when my heart rate was high for a period of time, like with exertion or excitement, and is coming down. my doc suggested that my parasympathetic nervous system wasn't working properly, but whooooo knows. i do find it a bit odd however that postural changes do hardly ever affect my heart rate. my tilt table test showed pretty much no change in hr or bp. i took the ttt around the time i was at my worst, about a year ago. i have come a long way since then, but never really had the postural changes.

thanks, jump. what's interesting to me though, is that i don't really feel like my pots symptoms on a whole are ever not that bad or i'm in a "good" stage. when i took the ttt, i had about 100 really nasty symptoms. just not the heart rate upon standing. it's one thing if i'm having a day where i just overall feel okay. but when i feel like all kinds of autonomic dysfunction symptoms are acting up but not the number one typical "pots" reaction, i do have doubts.

and my heart rate is definitely not low. at rest, it's around 100. well, now, i take 50mg of toprol and it's around 85-90. when i exert myself even a little, it shoots up to about 130. when i try to exercise, even lightly, easily in the 200s. and no, i was not on the toprol when i had the ttt. i was prescribed it because of the wierd reaction i had. and i never had the heart rate increase upon standing before the beta blockers. the few times it has happened have been after them.

it just seems strange to me. i read all these studies and other people's stories, and it seems unusual to have all the other symptoms of POTS except for the heart rate increase upon standing! i am going to see a POTS specialist in a couple of weeks, finally!! so hopefully i'll get some answers!

i feel like the black sheep of the POTS family. my heart rate did not increase, and my blood pressure did not drop, during my TTT. sometimes it does, probably like one day every couple of weeks i'll have a day where my heart rate increases upon standing, or i'll feel really really dizzy upon standing.

the reason i was diagnosed with pots was because after the isuprel injection, after i had been upright for 20 minutes, and after i was lowered, my heart rate suddenly went from 110bpm (where they were keeping it at on the isuprel) to 180bpm. again, this was after the whole test, and i was lowered down. my cardio came over to tell me that i was all done and negative for everything and wham!

this episode happens fairly often to me. my cardio told me it was a sinus tachycardia, which he said was incredibly unusual because he had never seen it happen. it seems that it happens to me after my heart rate has been up (like from the isuprel) and is lowering. then it just shoots up and becomes really really foreceful.

so i was told that i have POTS. but it seems that most people on these forums had an increase in heart rate during the ttt. did anyone here not, and then later find out they have pots? did anyone else have this reaction on the ttt? i wonder if it wasn't an svt that i had, which i know many pots patients have, so would this reaction to the isuprel be something that could induce a svt?

thanks all!

i have heard withdrawal is horrible. i am a little upset my doctor gave it to me without warning me.

the serotonin foods include, i believe, avocados, walnuts, almonds, pineapples, and well, there are many others. there are a lot of lists online. you are not supposed to eat them before having your serotonin levels checked.

i know, me too, which is why we wonder. a small dose shouldn't cause serotonin syndrome, but if we have problems metabolizing serotonin or transporting it, even a small dose could cause a problem. i don't find myself reacting unusually to the typical "serotonin" foods however, so i do believe it was a norepinephrine problem.

wow, well it sounds like many of us have similar issues. so summer, you never learned if you have hyperadrenergic pots or not? did your pots come on suddenly or gradually? mine came on very suddenly, so i suspect that i don't have the hyperadrenergic pots, but i do know that i am extremely sensitive to NE.

did your doctor definitely believe that you didn't have serotonin syndrome?

i would like to try a ssri, but like you, it was like the worst experience of my life and i am scared to death of going through that again!!!! however, i strongly suspect the reaction was due the norepinephrine, so i feel like i should be okay on serotonin.

has anyone tried effexor? if so, did you have a reaction?

after i tried it, the first day at the starting dose, i had a severe reaction. my heart was about 200bpm, my blood pressure high, i was shaking, felt electric shocks in my body, had severe diarrhea, and was extremely panicked for about six hours. my doctor agrees this is probably a huge clue as to what is wrong with me, but has no idea what.

i know that norepinephrine sensitivies are common in pots patients, but am wondering why i have never heard about this kind of reaction to a drug that promotes NE.

thanks everyone.

beg - do you have any of your research that you are able to share? thanks for the link, i will look for you over there!!