Lukkychrm42

That might make more sense, Melissa... at any rate, I was always confused when told it was blood pooling, and my feet stayed at 78 degrees. And then I heard Dr. Stewart in NY had an opposing opinion, and to be honest I'm not sure I know the difference between high and low flow POTS. Obviously all these researchers have varying opinions (for better or worse?), though. Hopefully some day they'll figure it out!!! As to the cold feet, in addition to heating pads and such things, I absolutely love slipper socks!! I have so many pairs! For me, my hands aren't as constantly cold as the feet are, but none of them seems super painful like many patients with diagnosed Raynauds describe. That sounds excruciating. One of my friends is diagnosed as low-flow and her feet have become frostbitten with the Raynauds, such that part of a toe has been removed.

Yeah, I've never been officially diagnosed with Raynauds- it's always been chalked up to circulation/POTS issues. What I don't get is if blood is pooling there so they're purple, why are they so cold? Shouldn't it be the opposite? Warm feet?

Are you on medications? Before I became super-symptomatic a few years ago, my HR might be in a normal exercise range of 135 or so, and it might be more along 180+, depending on the day and time. Now that I'm on medication, when it's WORKING and at an OK time for exercise (like after 4 pm or so), then my HR often doesn't go over 110 when doing moderate exercise on the recumbent bike (AKA sitting down!!) More often on the recumbent bike it might be 85-95 with my meds, and my resting HR at 45 or so. Since there's so much more to POTS than just tachycardia, most of us, I think, get various symptoms even when our HR is in the "normal range." Anyway, if you're on meds, then that might be why your HR isn't going up higher when you exercise. If not, it could be more natural variances in your body. Also, if you were doing exercise standing up, it might fluctuate more. But I don't think it means that your body isn't working as hard or harder when you exercise now as when you were before. I think it's normal for you to feel the difference, because a HR of 100 when you're lying down is high, but when you're exercising, it's not considered high or too high. Moreover, if your HR runs like you're doing a marathon when you're lying down, I don't think it would be that strange for it do do the same when you're exercising, even if it's not going up higher.

Oh no, sorry. I didn't mean that I also had a problem with all lower case letters... that was supposed to be more of an example of run-on sentences without punctuation.

Hi, It could be related to your medicines. It might also be easier to attribute it to something if you can say why you're waking up, and is it hard to go back to sleep when you do? FX are you waking up to go to the bathroom, is your mind running like crazy? Or is there pain or something else?

I thought wellbutrin was supposed to do the opposite: help with fatigue... maybe it just takes more time??

I have all of that. If it is TMJ issues for me, then it's probably pretty mild, but I think it's more from the fact that my jaw pops out all the time and so it hurts. I get numbness all over, even lips, butt, ears, EVERYWHERE. This has only been attributed to circulation problems with the POTS.

Hi there! Mine fluctuates pretty drastically, too. ON medicine, it jumps between a low normal (90s /60s-100s/70s) to a high normal 120s/ 90s at rest. Off of medicine it usually spans 50/30 to 180/120 because it jumps up when I stand. When I stand on medicine it still jumps up a bit, but usually goes between 110/70 to 140/100 or so. Sometimes it surprises me, but this is about as much of a generalization as I can make! Plus you know, the normal thing about POTS is that there is no normal!!

This isn't aimed at anyone in particular, but I've just been noticing recently that when I've got lots of brain fog or a headache, it's really hard to read a post with no punctuation or in all caps. I think it would help a lot of us to be able to read more easily if we remembered some basic punctuation. I'm not suggesting that you spell check or grammar check everything, because even I don't make posts that I would turn in for a grade! Anyway, if it's written all LIKE THIS WITH ALL CAPS or like this: i don't know about you but it makes it hard to read and maybe we could all benefit a little from making sure to punctuate you see what i mean everything kind of runs together and becomes a big blur im going to go now but i just wanted to add in my 2 cents. Thanks!!

Thank you for posting this, Sophia. I just want to say that I'm incredibly sorry, Jan. We love you here, and I'm sending lots of love your way.

I don't have MVP, but I also have mild regurgitation, specifically tricuspid valve. I am also short and sturdy, as Nina put it! I was a gymnas until age 15, and that's probably why the joints are so bad now. No one in my immediate family has had heart issues to warrant an echo, but none of them has POTS. I would be interested to know, too, if any of them has any kind of regurgitation with the EDS. You might like the book the MVP syndrome/dysautonomia survival guide by Durante, Durante, and Furiasse.

My rates b4 meds were in the 160-180 range, but now that I'm on meds it's more like 90-100, and my resting HR not standing is about 50. Off of meds my resting HR is about 55.

That is way cool, Becky! I hope you enjoy getting back into the groove of school!!! Good luck with everything!

Haha that's cool- I know what you mean about the size... mine is cute but it doesn't quite fill my large mug up. Of course maybe that's significant, but I'll ignore it for now! I went out for coffee today with some Italian boys, and the first two places we tried were packed without anywhere to sit, so we ended up going to Starbucks- at their request! I haven't been since I got back to Boulder, and I would have thought that Italians would despise the idea of Starbucks.. they got fancy frappucinos, and I think appreciated the fact that they were more like large desserts than coffee. We still had to sit outside, but it was still a good time. Though I think if there were Starbucks in Italy, maybe they wouldn't be so open to it! Oh well, I think I'll stick to my local place. ) Yummy! Enjoy!!!!

Hey there, I have a very low resting heart rate, and always have had. So for me I'm "tachy" when I notice that my heart rate is way up- it might be relative sometimes, but it often coincides with being more POTSy, and is not fun. FX If I eat a larger meal, my HR will go up maybe not over 100 BPM, but up to 90 from my usual 50 which is definitely noticeable and uncomfortable especially if I'm just sitting there. I also experience irregularities sometimes, which I consider palpitations- sometimes they're fairly regular but just very forceful and uncomfortable. These have only been associated with normal POTS symptoms for me, though. I hope you guys figure out the problems soon! It definitely stinks to have this kind of issue, and sometimes worrying bout it can make it worse. ( Feel better soon!!

Hey, so I cut myself chopping veggies tonight, and the blood that came out of my hand was like mucus. It clotted super quickly, and I've had the stomach flu for over a week now, gotten IV fluids twice, and since my hematocrit is under 40, is that normal, or could that be from dehydration, or do any of you know anything about this? very weird!! Thanks!! PS the IV line I got on Friday clotted up in the 5 minutes I was in the bathroom, and they had to put a new one in. Hmmm.

When I can drink hot coffee, I love my Bodum french press. Yummyy!!! I love the caffetiere for making espresso, but the ones I got from the market in Rome always broke and didn't work well on my parents' glasstop stove.

I heard elsewhere that SIDS was thought to be related to autonomic abnormalities, but I'll have to read this and see what it says.

Hi! I get that all the time, too. Sometimes I'm fine and can be in a restaurant, but other times, it's absolutely miserable, especially if I'm trying to listen to someone talk (especially in class)... sometimes I just have to leave because I can't handle it. Yuck.

That is so awesome! You rock!!!!! CONGRATULATIONS!!!!!!!

Hi Ernie, I can't speak from experience, but it certainly seems ridiculous on their part to declare you fit to be discharged at such a point. Do you have to sign something, or don't they have to, to get you discharged, and does it say anything pertinent to any problems you might have post-discharge? I know that here if you come into urgent care, you cannot leave without being seen, because it could cause them potential liability problems. It is so irresponsible on their part to make you leave when you're so sick. The only thing I can think of would be related to legal issues, and I'm sorry I don't really have any advice as to what you can do at the point they discharge you even when you're obviously not well... I mean, i'm sure you're already protesting as much as you physically can... I'd guess that you'd have to be considered stable, though, to be discharged... hopefully next time there will be SOMEONe there on your side who will see and admit that you're not stable. I'm so sorry you have to go through this, and I am hoping that it doesn't happen again.

Hey there! Does anyone know if POTS affects or can affect the thyroid? I just found out yesterday from a blood test that my (hormone level, I think) was on the high side, but I've never been called on having any problems with it, and I was just wondering if that might be normal for a POTSy? I'm just curious, because I don't remember reading anything about it, but it seems like it could be related like other hormones and whatnot. Thanks!!!

I've never heard that term before. Does your neuro actually know anything about POTS? If so, I would think that he would have indicated what type of POTS, because genetic POTS could be hyperadrenergic, which is the only "subset" that has a gene identified specifically. Otherwise it could be related to Ehlers Danlos, which they could clinically identify for the HEDS type. But otherwise, it seems like he might need to be more specific as to what he means by metabolic based POTS. I'm not aware of a type of POTS that is categorized as such. There are other types of disorders related to dysautonomia that might involve such function, but I'm not sure to what extent they cause POTS symptoms specifically. For example, the catecholamine related disorders including dopamine metabolism disorder or various other catecholamine deficiencies such as the baroreflex, monoamine oxidase, and all those various things that are still being studied.

Even if the doctors didn't actually mess up around whatever parts that control your ANS, I believe that general anaesthesia itself can cause complications including but not limited to damage to the ANS. Correct me if I'm wrong, but I'm pretty sure I have heard or read this somewhere. The only genes that they have actually found linked to POTS relates to hyperadrenergic POTS which is seen in only about 10% of patients and does not result from surgery. Other than that, there are a large number of us who have POTS related to Ehlers Danlos Syndrome, and that is also usually genetic. Also, there are people who seem to have a genetic tendency to develop some form of dysautonomia beginning perhaps around adolescence, and often getting better upon adulthood. Finally, there are those who develop POTS after a virus, and as it results from damage to the ANS, I would suppose that damage from a surgery would fall under this category. While in theory there is an average of about 5 years in which patients are expected to improve, it's only an average, and there's not always a definitive end to which patients improve... whether 100%, 80%, or whatever. But as far as I am aware, these POTS patients will not generally pass on dysautonomia to their children.

We had it twice in the past week, but tomorrow it could be 70 degrees. Ya never know!