cmreber

I think I had both tests done the same day at Mayo, but not at the same time. For the NE they had me lay down in a dark quiet room for a long time, then drew my blood. Then I had to stand for a specific amount of time and they drew again. At least, I'm pretty sure this is how it went. During the TTT they did the sweat test, valsalva testing (with this breathing tube), and monitored hear trate and blood pressure contantly throughout; they didn't draw any blood at that time.

Not very long ago, I would have voted for light headedness/ dizziness/ pre-syncope. Lately, I have been having a lot of breathing issues, which have been pretty unsettling. And the fact that it hits at any time makes it potentially very embarrassing too. The other day I was at yoga and during the supposedly relaxing breathing part of the practice, I started getting the "not breathing right or getting enough oxygen" feeling, and I about had a panic attack right there in class! ;P That certainly would have been quite the spectacle! Fortunately, it passed fairly quickly and after a quick step out, I was able to get back to the remainder of the class. I think the worst part, though, is the sleepless nights from it.

I don't know much about my parents, but I do know that my grandma (on my mom's side) had a disorder called Idiopathic Thrombocytopenia Purpura, which was basically an autoimmune problem where her body would destroy it's own platelets. Not sure if this has anything to do with my POTS issues or not. I have one brother, two years older than me, and he doesn't have any health issues at all.

Seriously, Foggy01! I never thought I'd say this, but I think that I prefer the dizziness, being tachy, and even the pre-syncope "fade out" to the breathing thing. I guess just because it's so scary. I mean, feeling like you're going to pass out is one thing...being afraid to sleep is awful! I would love to figure out what causes this for all of us, and how to make it better. Wishing you a good and restful night!!!

k&ajsmom, I responded to another post about having this problem. I just wanted to say, like you, when this first started happening, I also was afraid that I was losing it or something...and that it was all in my head. I think that's the biggest benefit of this forum, though, because then we can see that these things happen to so many others and that we're not totally insane! LOL

This has been a very recent symptom for me. When I first got sick, that was the first time in my life I had ever experienced heartburn at all. I only had it two, maybe three times, and then it went away, though all my other POTS stuff was at its worst. (I ended up the hospital, which is what led to my POTS diagnosis.) Interestingly enough, I have becoming increasingly better as far as most of POTS symptoms are concerned: i.e. dizziness, light headedness, pre syncope, very high and low blood pressure fluctuations. However, now that these all seem to be getting under control, I have now started to experience heartburn almost every single day, if not more than once a day. I just started taking over the counter antacid chews and it does help a little, but I think I'm going to have to talk with my doctor about some options. It's the very worst at night, which can make going to sleep pretty uncomfortable sometimes. I don't notice that it changes during any other symptoms. In fact, aside from shortness of breath/breathing issues, this is the main symptom I have been dealing with for the past month or so. I did read that sometimes beta blockers can exaserbate the problem, which I am on a fairly high dosage of. I have been wondering if that has something to do with mine? Other than that, I have not been doing anything different diet wise to account for the sudden change.

I take Metoprolol 50mg twice a day (at 5:30am so I can get up in the morning by 8-9, and then at 5:30pm); also on high salt intake and lots of fluids. So far, aside from fatigue, this seems to be working for me.

This is actually a fairly new symptom for me. It's so strange too, because everything else seems to be going pretty well. I seem to be on the right dosage (beta blocker) and a high salt intake and moderate excersize is helping so much with most of my symptoms. But then, a couple months ago, this happened to me out of nowhere on the way back from a trip, and then again a few weeks later I had a very scary episode at night. Ever since then, it's been happening on and off, usually at night, but sometimes out of nowhere in the middle of the day. In fact, the other day my husband was driving and we just fine, talking and listening to the radio, and then suddenly, I began feeling like the breaths I was taking weren't giving me enough oxygen. The epidode didn't last very long...maybe ten minutes? I'm not sure if there is anything to do to help this. Usually, it sends me into panic mode, but then, once my heart rate shoots up like crazy and I feel like I just got an adrenaline rush, it starts to feel like the oxygen is getting to where it needs to be again. If it happens at night, I do find it almost impossible to get to sleep, because I have this crazy feeling that if I go to sleep my breathing will stop altogether because I'm not manually doing it/thinking about it. Especially because I have read that so many people on here experience this, it must be a part of the autonomic disorder. I would love to find something to make it stop happening though!

Thanks guys! Good to get some feedback. I guess we're always looking for something to make everything better lol. Maybe someday...

Randomly, I ended up reading up on the benefits of seeing a chiropractor, and I came across a lot of information about how it has a very positive effect on the nervous system and ANS. I know it sounds odd, but it got me to wondering about the effects it might have on someone with POTS and whether or not it could possibly help with some of our symptoms. Has anyone on here ever tried this, or maybe gone to see a chiropractor for something unrelated to POTS but noticed any changes? Just curious. I know that since I have been doing massage therapy once a month for about a year and a half, just that seems to have helped with some of my issues. (Or maybe I just need it to help with stress LOL) Hope everyone has a wonderful Thanksgiving!!!

I was also tested for pheo prior to my hyper pots diagnosis. In fact, because that came back negative, that was the reason I was sent to Stanford, because my cardiologist didn't know what else to test for. It was the cardiologist specialist there that first diagnosed me with POTS and then that was confirmed at the Mayo Clinic.

Except in the very beginning, I have not had too much of a problem driving. (I fainted a few times early on when I first got sick, but I haven't ever since, so I would say I'm not a fainter.) I have had to pull over once or twice in the past because I got a little presyncope going on and felt like I had to wait until it passed to be safe. Monstrosity, I totally feel your pain with the motorcycles! My husband and I are big into streetbikes and used to ride them out on the racetrack for track days. I have decided against it since getting sick, just because I am fearful of how unsafe it might be for me and the other people on the track. I do have hopes to get back out there someday...just not sure when to go ahead and give it a go again. I do also ride dirt bikes, which I have started again very recently, but I feel like that is easier to stop and take many breaks and if I feel bad I can just stop and chill on a stump or something! lol I would actually be interested to hear if any that have this who can drive have tried motorcycles again....

Arizona Girl, thank you for the info! (& you're right, they did the emg thing on me). I seriously feel like there is so much to know about all of this and even though I've tried to educate myself, it seems there is always more to learn. It probably doesn't help that I live in a small town and no one here has even heard of POTS. Seriously, my general doc gave me an internet printout once I got my diagnosis after finally being referred to a guy in Stanford...and still doesn't really know anything about it. I haven't had too many occurences lately, though I have had a couple weird breathing episodes in the past couple of months. I am supposed to go back to the Mayo Clinic in November and will definitely talk to them about it more.

I was experiencing this a lot for awhile there. I mentioned it to the doctors when I visited the Mayo Clinic in Arizona in May, so they did some testing with nerves and needles or something? Anyway, they found that all my nerve conductivity was normal and there was no neuropathy or anything going on. In the end, we chalked it up to just another symptom of the POTS. I do notice that it happens when I am either having breathing issues (what I think is a product of the occasional panic attack) or if my BP goes very high. It has also happened with the tightening of the BP cuff. I find it interesting that it affects your left hand, pinky and ring finger, because it is the exact same for me. It also happened to both of my hands while I was doing the TTT, but my BP and heart rate were both very high at the time. Someone had mentioned to me it may be caused in part by high CO2 levels, which would happen if hyperventilating, etc. I'm not sure, but lately, I have only been experiencing it every once in awhile. I hope it gets better for you too, because it is INCREDIBLY uncomfortable!

My experience was the same as Peregrine's. They did mine during the TTT; they took a before and after blood pressure with the regular cuff, but also had a finger cuff that constantly monitored my BP throughout the entire procedure. I don't know a lot about it, but I was under the impression that both heart rate and BP reactions had something to do with the Valsalva test results?

I've also had this happen, especially in the beginning when my symptoms were at their worst; it usually happened when I felt faint and got that "red vision" thing. Sometimes I would have to try it a couple times before it would read and then it would be very low. I agree with the others, I think it has to do with it not being able to detect it because it is low?

Thank you everyone for your replies! It is nice to hear that it happens to others--not that I would wish it on anyone or WANT anyone else to feel that way, but I think you know what I mean LOL! (I guess just not to be alone in this) I'm guessing it was just stress and possibly not enough salt intake/fluids, and too much caffiene on top of that (I usually don't have much at all). I didn't really sleep at all afterwards, but I feel fine today...nothing out of the ordinary, or even really "POTSY" for that matter. Ashelton80, I am very sorry to hear about your grandmother. Mine also passed away (the very end of August) and we just spread her ashes this weekend on Sat...so I not only share your pain but also understand that this is a stressful time. I didn't really think that it was still affecting me so badly, but I do tend to hold my emotions inside for too long...which could definitely come out at inopportune times like when I am trying to sleep, etc. Thank you again and hopefully no more of this for any of us!

This whole experience can be so frustrating sometimes! I did the tilt table test at the Mayo clinic under Dr Goodman. Up until that point I had experienced both fluctuations in BP... when I was first in the hospital, my BP would go sky high along with my heart rate upon standing. Later, when I finally got diagnosed by a cardio specialist at Stanford my BP was dropping significantly upon standing. At the time I did the TTT at the beginning of this year, it was back to going very high. Dr. Goodman told me it is because I have the hyperadrenergic form of POTS. (Up until I went to see him and had a bunch of tests performed, I didn't realize that there were so many forms/factors of POTS!)

Hello everyone! I was diagnosed with POTS about two years ago. It's been a long time since I've been on here, mostly because I've been feeling so good and almost normal lately. (Yay for that!) But I just had the weirdest episode and I was wondering if anyone else on here has had the same thing happen. I woke up, went downstairs and went to use the restroom. I did notice that my heart was racing, but that isn't unusual for the middle of the night. I laid back down and was close to falling asleep. It was at that point that I became acutely aware of my breathing and suddenly felt like I had to manually do it myself...like make myself breathe in and out. This made me feel like I was breathing, but that the oxygen wasn't doing anything or really reaching my lungs. Which also made my heart start racing like crazy because by that time I was panicking. The strangest thing was that once my heart really started racing, it seemed to feel like my lungs were actually getting the oxygen again and I was able to take deep breaths again, and then my heart rate went back to normal after a few minutes. My hands (mostly my pinky fingers) were numb for awhile afterwards, which I assumed was high blood pressure, but when I checked it, it was basically normal. It's been a couple hours and I feel normal again. Has this happened to anyone before? It started to happen to me on a recent trip back from Vegas, but didn't escalate quite so far to full fledged panic. I have been bad lately with the caffeine, so I'm wondering if this might have triggered it?

I have been seeing a massage therapist regularly since the onset of my POTS. I do find it helps for a few days afterwards, though right afterwards I usually get a headache, increased heart rate and usually nap. I asked her to save some focus for my legs and arms and I do think, at least in the short term, it helps improve circulation. Plus, who doesnt want to get an hour massage regularly? ))

You both have a good point! I also try to take it as a compliment when people can't tell because sometimes I work so hard to be normal, that if they think I am, I feel successful! ;-) It's also helpful to try & see the silver lining in any situation . but there are times when I don't even have the energy to act like I'm fine, & at those times people don't always understand & it can make you feel very alone. It's just nice to know that other people are in the same boat & it makes me feel less alone in this

About two years ago I was hiking, surfing, riding dirt bikes, snowboarding, kickboxing...you name it. Then I had a sudden onset of POTS, began fainting with small amounts of activity & couldn't even walk through the grocers store anymore. Since then, things have gotten better & I have found a beta blocker that really helps, but I STILL find stairs to be my ultimate nemesis! Lol. Honestly, I can't make it the whole way without breaks if there are more than six, and by the time I get to the top I am out of breath and my arms feel like they don't have any blood anymore (if that makes any sense). I think a big part of it is the constant change of position. The other thing I cannot do is jump rope anymore!

I also get this...it's crazy to me the things that make me out of breath anymore! I have been trying to get back into exercise lately, but it has been challenging to say the least. I keep telling myself that I just have to push through it....but then find that is SO easier said than done . It is frustrating and I try not to be too hard on myself, but I'm sure we all battle with this! I can also be sitting there and my whole body suddenly feels jittery, like I just got infused with a caffeine I've drip or something and I can't find any reason. At these times, my hands (especially the left one for whatever reason) feel strange and want to clench up. Do you experience that as well? Yes, HHolmes, what a fun array of symptoms indeed haha! The longer I have this the more I seem to discover lol

WendyC, your welcome . I had never heard of it and I thought it might be nice to share. There are some personal stories on there I feel we all can relate to, even if our disorders might not be the same. (there is a really great one called The Girl Behind the Smile from someone with Lupus.)

AllAboutPeace, haha then you need to suggest XMen Origins to the hubby . Good news is its an action movie so he should be happy too hehehe. I actually gave up caffeine altogether for about about a year and a half and now I rarely have it...sometimes I slip up and fall off the wagon so to speak. I have a writers group that meets at the local Starbucks and sometimes it is just too tempting!!! Of course, I typically regret the afteraffects of it! But then again, I never learn lol. Linj I definitely envy you for your willpower! ChristyD, I think the times I notice my hands the most is if I am trying to do something that requires very fine motor skills & it sounds like it might be the same for your son. Also, playing video games probably fatigues the muscles in his hands... I used to like to play Guitar Hero with my friends but it is really difficult to get my hands to cooperate like they used to. AAPeace, I completely commiserate with feeling self conscious about it. For awhile I was going to get my nails done with acrylics (because ever since all this started my nails have had weird horizontal ridges in them) but it would be hard sometimes because when i would try to hold my hands out with fingers straight they would shake a lot & i didnt know how to explain to the nail tech why they were shaking. Also, like you said, if I am carrying something where my hands are having to bear any kind of weight. And even if they're not shaking, they feel as though they are going to jerk suddenly, even though they don't. (I'm not really sure if that makes sense, but it's the only way I can think to describe it.). Like I feel like their out of control even though they aren't? Thank you everyone for all the helpful feedback! I just keep hoping this particular symptom might be one that will go away someday!