imapumpkin

It's probably because our blood volume is even LOWER than our already low blood volume so it's important to stay extra hydrated during those days. I am usually extra fatigued and definitely have to work harder to keep my blood pressure up on those days, but I also feel somewhat better because that's my placebo week and I'm pretty sure my bc pill is making me sick and my tachy worse.

I was told by my neurologist that it is possible to get better from POTS and only have occasional minor flare ups. She is a specialist in dysautonomia so she knows her stuff. I can't give you any personal examples but if the DR says its possible that is a good sign. I hope your son feels better soon. We all get discouraged and from what I understand, teenage onset POTS is much more likely to go away within a few years than later onset. Hope this helps!

...are they for real? like the above posters, i'm also pretty uncomfortable with all the somatic suggestions made in the article, especially the ones suggesting that somatic hyper-vigilance is what makes this illness chronic. i'm sorry, do they think that we should just all put on a happy face and pretend we're not affected/scared by all these debilitating symptoms?

have you looked into abdominal compression? it might help with pooling in your stomach.

sometimes my pupils are slightly different sizes but they are always more dilated than they should be and i have to wear sunglasses whenever i am outside, even if it is overcast. The autonomic nervous system controls pupil dilation so it makes perfect sense that after a potsy episode you would be having dilation abnormalities.

it can be a number of different things...since the blood flow is off often your body tries to digest when there is no food in your stomach and other times blood is not going to you stomach when it does have food in it. it could also be delayed gastric emptying, and tachycardia can cause nausea

thanks, ashley. i'll look into those treatments. Canadiangirl, I also really really hate the chest pains. it's hard to tell yourself you're not having a heart attack when common knowledge is chest pain = bad news get help. it's just so disheartening to keep discovering new symptoms. just when im trying to manage my symptoms, a new one pops up. it's like the fun never stops at the POTS party.

I get the throbbing the most intensely when I go to get out of bed, but all of them are the throbbing kind and happen sporadically throughout the day for no apparent reason. I also have been having them for half of my life and not just since I have had POTS so I'm sure POTS makes them worse.

It's not "normal"...but it's also not dangerous. some days i have no palpitations, some days i get them all day long, some days i get the during my bouts of tachycardia. People get palpitations for any number of reasons...hormones, anxiety, arrhythmias it can be dehydration...palpitations suck and they feel really scary--- i get the throbbing contractions too and often they make me very nauseous, but palpitations shouldn't be a cause or concern. like a lot of POTS symptoms (chest pain for instance) it seems like it should be really concerning but unfortunately it just goes along with the territory. If you think your doctor is blowing you off you can always get a second opinion...but from what I understand palpitations themselves are not dangerous and not nec indicative of a dangerous condition. blinkofani explained it well in the post "Tachycardia Palpitations." You can search it to see her explanation.

This morning I woke up and as usual was greeted with my typical tachycardia, nausea, drop in blood pressure, heart palpitations...but this morning I also felt like I wasn't getting enough oxygen when I was breathing. I've never had shortness of breath with the tachycardia. The only time I really get out of breath is going up the stairs or over exerting myself (like lifting a full laundry basket) and even then it goes away shortly after the exertion. Today I felt like I couldn't catch my breath even though I was just laying down. When it didnt go away after 45 minutes I called my PCP's office and asked if I should be seen (Even though I knew I should). Of course my doctor was out of the office, she always is, and her nurse is a nightmare to deal with. She's rude, judgmental, doesn't have a clue what POTS is,and worst of all, she thinks I'm a hypochrondiac and doesn't take me seriously because I've been so sick lately that I call more often than I'm sure she thinks is necessary. She said, sorry, we have no appointments available, go to the ER. (After asking me twice if I was sure this wasn't just anxiety. I told her no, anxiety makes me hyperventilate, not short of breath, and I am not really anxious, I just woke up). Went to the ER. Vital signs okay, pulse ox good. Blood tests normal, chest x-ray showed nothing concerning. ER doctor (WHO KNEW WHAT POTS IS AND specifically said he never assumes anything is anxiety off the bat, therefore I love him forever) thinks this could just be a fun new manifestation of the POTS. I've never had prolonged shortness of breath from my POTS. Does anyone else get shortness of breath for over 2 hours at a time with little to no exertion? It's very disconcerting.

this might be a stupid question but as someone who has POTS without syncope, and i'm not too familiar with TTT-- do they do it until you pass out? because i've never passed out from it and really dont want to during the test... that sounds pretty unhippocratic to put patients in a situation like that.

E Soskis-- I am seeing a surgeon who is a pioneer in minimally invasive mitral valve repair and replacement so I'm told i should expect some stitches, not a cracked chest thank goodness. AllAboutPeace-- I'm told that I was born with the the MVP but my POTS symptoms have gotten much worse in the past few months and my cardiologist told me back in Jan that I was a-okay to keep going without repair surgery, but now is telling me things are concerning enough that he wants it taken care of. He said I might have some relief from POTS symptoms once the valve is fixed. So some correlation? he thinks perhaps. Anaphalaxing-- it totally does help I need all the reassurance i can get that this will be a helpful procedure and that people can bounce back from it.

Thanks everyone for your advice/well wishes. I appreciate the support and will def try and talk to the anesthesiologist beforehand.

My cardiologist told me today he was sending me to a cardiac surgeon in Boston. I very likely will need my mitral valve repaired within the next few months I knew this was a possibility because I have a Mitral Valve Prolapse with moderate regurgitation, but I figured we had years to monitor it before I'd need surgery to repair it. I'm kind of numb and haven't hit that "OMG HEART SURGERY" panic yet...but its still big, scary news. My cardiologist even said that I might experience some relief from POTS once the valve is repaired. He also said we kind of need to put my POTS on the back burner. I'm having autonomic testing in two weeks in Boston but it's hard to know I can't really try anything else to help my POTS until my heart stuff is resolved because beta blockers are really the only medical treatment that someone can be on with a leaky valve and i can't tolerate them. Florinef and Midodrine are a big no-no apparently. I'm also nervous about the anesthetic because I know POTS patients need to be closely monitored and I'm extremely sensitive to all meds/drugs. I just want to make sure the surgeon understand about dysautonomia before surgery. Part of me wants to get it over with, the other part of me is scared because every surgery is a risk. And all of me is going "why is all this crap happening all at once?" ...I'm hoping that I can get all this scary/crippling medical stuff out of the way at once so I can have some good health karma coming my way after that for a long time. yikes, it's been a hard day

My fatigue is getting worse and worse. I know this may sound silly but sometimes i wonder how much more tired a body can get. My anxiety goes up and I worry that my heart/body is just going to give out because my energy just keeps getting lower and lower. I know it's an irrational fear and I don't want to sound melodramatic and say it feels like you're slowly dying but I'm irrationally scared that each day that passes the less energy I have I don't know how I have energy to function at all. I know I've been posting a lot lately but it's because I feel utterly exhausted, sick and isolated and I feel like the people on this forum are the only ones who understand or who have any answers. The specialist I see is EXTREMELY busy so I obviously can't bother her with every question and anxiety I have and I feel like no non-Dysautonomia people get what I'm going through. I'm exhausted. I'm sad. I'm frustrated. I feel like I don't have much of my dignity left having to be sick and dependent on others. Every night I go to sleep hoping the next day I might be better. I'm not giving up and believe I can get better but right now I'm feeling kinda helpless. Does anyone ever bounce back from this all-encompassing debilitating fatigue?

Since it's started to get colder (or for whatever reason because obviously POTS has a mind of its own) my blood pressure has been doing better this week. Normally I hang out somewhere around 95/55 but this week I've been doing 112/70 ish range. However, my heart rate has not been lower than 94 and is often 112-120 at rest. The past two days have been a complete drain on my energy. I know what to do to adjust my bp symptoms (stockings, increased salt intake, constant fluid with electrolyte intake) but there's really not anything I can do about the constantly pounding heart and its exhausting me. Beta blockers worked miracles but apparetnly i don't tolerate them. I thought since my pressure is doing better my tachy might chill out? How does one know if their symptoms are better? I just don't know what to do to feel better at all. sleep and rest don't help. trying to be active doesn't help. i wish more of the medical community knew about this stuff and could help us deal with it.

I read that singing can make POTS symptoms worse. I know you breathe differently when singing but does anyone know why medically/scientifically singing would be bad for POTS? I always have to stop myself from singing along to the radio, and its rough because I used to do musical theater and am a shower-singer and before POTS was constantly singing. I also find that belting out singing is really therapeutic for my anxiety. Does anyone have any insights? I'm just curious because I'm used to singing being something that makes me body feel better.

thanks E Soskis that's very helpful. I take multiple readings sometimes because i have to take it sitting, then immediately after standing up and didnt realize how much it fluctuates.

So sorry this is happening to you . abby is right, this is something we all go through...why else could go wrong, why is my body doing this to me...when will i have my life back? it really is a grieving process. and its hard to give advice on how to deal with it because often times I feel like its just getting through the next hour, the next morning, the next day. It sounds like you have a group of doctors who have their stuff together (rare because many doctors are clueless when it comes to dysautonomia) and who are actively and quickly working to help identify the problems and find solutions, so that's definitely a positive to hang on to. you are not alone, we all feel like our bodies are failing us. something that helps me (well, i don't know if it really helps but it's something i do) is to hope tomorrow will be better. i go to bed at night hoping "maybe tomorrow i will feel better. maybe tomorrow will be a good day. maybe tomorrow i will have more energy." because we have to live for when it will get better. POTS is so all-encompassing that it can feel like its all that we think/feel about and all that defines us. its not, and tomorrow it could be better. my mom always tells me "there's no point in looking for trouble and expecting the worst" and often i get annoyed at stuff like that because i feel so crappy and am constantly worried something else is going to go wrong. but i find myself feeling mentally better when i believe that things are going to get better. good luck i hope that you will be able to drive after all. maybe if things went downhill so fast they can go uphill just as fast?

Because my doctor wanted blood pressure readings, I have a pressure monitor. What I don't get is sometimes I will take a reading, and then another reading right after the other and the numbers will change drastically even though I haven't moved or change anything. Why would my blood pressure be fluctuating so rapidly if I'm taking one reading after another?

palpitations in my case feel like my heart skips a beat and then the next beat is super strong, then skips, then pounds. Often it will happen for 5 or 6 beats and then go away (I'll have them intermittently throughout the day). Today it felt like my tachycardia (which is normally a pounding racing heart that feels like it is trying to escape my chest via breaking my ribs) was ALL palpitations...racing, but the beats would skip, POUND, skip, POUND. I am seeing my cardiologist on Monday and had an echo-cardiogram last week so hopefully he will be able to shed some light on the palpitations, even though he doesn't know much about POTS.

I'm used to tachycardia when I get up in the middle of the night to go to the bathroom or when I have to get out of bed in the morning, but today I was experiencing not regular tachycardia, but a pounding palpitating heart. Every time it was beat it would palpitate and each time it would palpitate I felt incredibly nauseous. Has anyone else experienced this? I have had palpitations for years but usually not during a tachy episode and the only thing that helped was lying flat on my back.

I would check with your doctor before doing anything 60 mg seems like a really high dosage, but definitely don't try and take a quarter or try and self-medicate. Beta blockers are nothing to mess around with. If you think your doctor gave you something too high, talk to him/her about it, but don't take any actions without consulting your physician

I just went on and off propranolol. i was getting tingling instead of burning in my hands feet and face. The doctor said it could be transient blood pressure and heart rates and should stop on a lower dose, but it didn't. It sounds like it could be an adverse reaction to the meds.

Is it weird that during the storm yesterday I actually felt pretty good symptoms-wise? Heat makes me feel worse and usually so does humidity but yesterday felt really mild despite the crazy weather. I was very sleepy but my blood pressure was excellent all day and I had better than in-the-gutter energy level. Today, however, i feel like i've been hit by a truck.