LastUnicornLady

I do a lot of Gatorade, and don't really worry about the sugar or calories, because I'm having enough trouble keeping on weight as it is without purposefully using stuff marketed toward those TRYING to lose weight. I'm assuming it's the added salt content that's important, as well as making it more convenient and tasty to get enough water.

Heylo, POTSies! I've noticed being really easily irritated lately. I'm not usually the ind of person who blows up at every little thing, but I've noticed being more and more easily unhinged for a while now, and it's getting frustrating. I can't seem to control myself! Before anyone asks, no. It doesn't seem related to "that time of the month" or anything. Does anyone else on here get this? Is it related to the POTS, am I just going through a phase, or what? Any tips and help would be much appreciated.

That happened to me when I was on Midodrine, even though my BP was within normal ranges. I eventually had to stop after only a few doses, because I was having really had palpitations as well. (Not normal, but what the heck. It's me.)

I know I'm a little late to this pity-party, but mind if I join? I just got home from a rather discouraging doctor's visit that mostly left me yelling (mentally) "WHY ME?!?!" I had a stress-test done today. It was the first time I had ever walked on a treadmill, and I've now discovered that I HATE treadmills. It felt really awkward, and I was slightly nervous I was going to fall off as it kept inclining. Needless to say, I ended up feeling really stupid and self-conscious, and only made it for 8 minutes and 58 seconds. Apparently, most active people make it closer to 9 and 1/2 minutes... I have just gotten over a virus, so we built in some room for that, but he said I was probably still a little deconditioned. Well, YEAH! I feel faint pretty well every time I stand up, and get incredibly fatigued with even the slightest bit of exertion... What did you expect??? At least I got in 8 minutes. I just left feeling very bad about myself, and hating life and circumstances, and not very hopeful. Ugh. Now that I'm finished, I thought I'd pull out this lovely virtual chocolate cake. With lots of icing on top. Enjoy, everyone!

I've always been really slender, too. I'm hesitant to say "thin", because it's more of a fit, muscular, type body build, and not what I would describe as "thin." (Think gymnast!) At 5'4" and weighing 49 kilos (108 lbs), I've never had much weight to spare. I've actually been loosing weight because of a lack of appetite/extreme nausea, and I'm really hesitant to say that gaining weight would be some magical cure, and like someone else already mentioned, I suspect I would gain weight because I was feeling better and not the other way around. As for nutrition being the answer, I've heard a lot of different views on that. Several people have mentioned pretty extreme improvement in their dysautonomia by cutting various things out of their diet, whilst others say diet has nothing to do with it. I'm open to trying pretty much anything right now, and am looking into doing something like this- deliciouslyella.com/food-philosophy/ This young lady was also diagnosed with POTS, and saw marked improvement with a vegan diet. Since I haven't seen any great change with the medication I'm taking, and I'm still in a very adventurous mood, I figure it won't hurt too much to give this a try.

Typically, I'm only "tachy" for the first bit upon standing, and if I can remain standing, I tend to do alright. But on bad days, I physically cannot maintain the upright position. My body won't let me, and I end up dropping in a faint or having to sit before I do faint. So some days, I can just wait it out and I get a little better- I'll admit though, I'm at my best when sitting. And of course, there are just some days... Actually, I didn't have an official TTT- only a poor-man's TTT. I've never done the actual test, so they just took the initial readings after a minute or so in each position. I'd kinda like to have an actual TTT, but I don't know where to get one done in my area, and I suspect they're kinda expensive.

Hey, everyone. I seem to have come down with some sort of bug- perhaps it's a cold, and hopefully it's not the flu, but whatever it is, it's not very fun. Do you have any tips for dealing with illness on top of the "normal" POTS stuff? I seem to be feeling a lot worse now than I ever did before POTS, so I suspect the bug is aggravating my already wacky system.

For me, it depends on what kind of pain it is. I usually end up using heat, because it's most helpful with my muscle spasms, which are what I normally need it for.

I've heard that getting nutrients from shakes/smoothies works well! I'm hoping to start doing more of those, especially fruit smoothies, since those are my favorites.

Hello, everyone! Lately I've been dealing with decreased appetite and getting enough to eat, and I've noticed that this seems to be a common problem among POTSies and dysautonomia patients. Since a lot of us seem to deal with this, I thought it would be cool to start up a thread for people to just share tips they have, things that helped them, etc. Do you have any particularly great high-calorie milkshakes or foods that were easy on the stomach? Essential oils that helped bring back appetite? Feel free to chime in!

Thanks for all of the helpful info, guys! I really appreciate it! They seem to be clearing up, and I'm definitely keeping a eye on them for signs of infection and such, as well as keeping them warm and moisturized.

I'm quite the opposite! I had a horrible time this past summer (that was when my POTS really started becoming a problem), and have been able to be somewhat "normal" now that it's cooler outside. But anytime it's too hot inside, the barometric pressure is shifting, or we're about to get rain, I start being even more symptomatic.

I used to work as a nanny for a child one day a week. Every Thursday I would watch a three year-old from about 9:30 am until sometime after 6 or 7 pm.Once I started dealing with this POTS thing, I started having to slowly let go of the job, in spite of the fact that it was my main source of income. I only go over every-other week, and can't really do the full workday anymore. I typically go over now at about 11 am, and leave at about the same time I was before. Even at that, I often can't go over, simply because I'm too sick and know that I wouldn't have been much use. It's frustrating not being able to control my own body, and I really do push myself, but when you can hardly support your own weight, you know you're not really ready to deal with a pre-school age boy...

I drink Gatorade to keep me hydrated, and actually appreciate the calorie content, because I have trouble with loss of appetite and unwanted weight loss.Of course, your good-ole' water is always good, and although it tends to be more expensive, I LOVE Smartwater. It tastes better to me, which encourages me to drink more of it.

Hello, everyone! I was wondering if anyone here had experience with chilblains- though in all honesty most of me hopes you don't! I've been having troubles with my toes the past little while. I thought at first that I might have athlete's foot, though it struck me as odd that I didn't have scaliness or peeling really. It didn't quite look right for AF, but since my toes were red, insanely itchy, and swollen, I figured that was it. Now I'm thinking they're actually chilblains. I can see red bumps on them, almost like blisters. Most of what I read said that people with slightly bad circulation (that would be me) can be more prone. I've noticed that my feet are always cold, and I was thinking this was probably the cause of my chilblains. Does anyone else experience this??? Is it common(ish) with POTS? Any tips on relief from the itching till they go away??? I'm still treating myself for athlete's foot (essential oils and coconut oil mostly) just in case, but I really think it's chilblains.

I couldn't do the full-length because I have nausea and pain in my stomach area that I'm thinking would probably have been exacerbated by the excess compression there...

Before my POTS diagnosis, I had to have four teeth pulled at once. (Not wisdom teeth, thank goodness!) They decided to do the nitrous oxide and not a sedation (so glad of it, too!), so I was "conscious" during the whole procedure. Unfortunately, I started sort of hyperventilating while they were doing the shots, and I'm pretty sure the NOS did very little whilst the teeth were actually being pulled... ah well. When they were pulling the second or third tooth, the dentist accidentally dropped it inside my mouth! They ended up having to sit me up so I could cough out the tooth, and my heart rate sped up to over 160 bpm! He said, "That was a first." Nobody wants to hear that from their doctor/dentist.... That was actually something that helped clue us into the fact that we needed to look at POTS more closely. So I guess it was a blessing in disguise!

I, too, have lost quite a bit of weight since my diagnosis- in spite of being on a steroid. If your daughter has issues with nausea, loss of appetite, or vomiting, those could all be causes of the weight-loss. If she's not getting the nutrients she needs (through no fault of her own!!! I'm not suggesting anorexia at ALL!), then she could be just not eating enough. This is the reason I've lost weight... Or, if she's having issues with (sorry for the TMI) diarrhea or some other kind of absorption issue, then it's possible that, while she's getting enough to eat, the good things she's eating aren't really digesting very well. Or it's also possible that there's something else going on that you don't know about yet. I know that a lot of POTSies (myself included) end up having a lot of things ruled out before their diagnosis, but it's still possible that they missed something. Be sure to keep us updated!

And also, any tips for dealing with/controlling this would be much appreciated. I've lost several pounds due to lack of appetite and nausea after meals, and I don't really have any weight to spare.

I use a 20-30mm, thigh-high, which has worked really well for me, and I've heard that it's one of the most common compression levels for POTSies, although I know people who use a higher level than that. A brand that I like (though admittedly the only one I've tried so far) is Lace Poet. If you order from Amazon, it's only about $20 for a pair of toe-less thigh-highs.

Hello POTSies with gastric motility issues! I know that delayed gastric emptying is common with POTS, and have been a bit confused... Does this affect the rest of your digestive system, or just the stomach? Is constipation involved at all? Because I'm thinking I actually may have issues with this, but I don't have constipation... Hopefully this isn't too weird for anyone. I'm just desperate for some answers!

Hello, POTSies! After a very frustrating doctor's visit and a cardiologist who supposedly "wrote the book" (or at least a chapter of it) about dysautonomia but only works with two medications, I have been further investigating what might be the cause (or at least the contributor) to my dysautonomia. One of the things I'm really looking into is EDS- Ehler's-Danlos Syndrome. It actually seems like a highly probable diagnosis, because I've always been pretty "bendy" myself. Being a dancer, I am constantly around flexible people, so I never really took notice of it. In fact, I always thought of myself as not particularly flexible at all because I know people who can do "more" than I can. I'm realizing now that I actually am fairly flexible... I self-tested myself with the Beighton Score system (hope I spelled that correctly), and had at least a 5/9. Possibly more, because I can't tell if my elbows and knees actually hyper-extend or not. I've always had really "noisy" joints, as well as pain in my knees frequently, but it was always chalked up to "growing pains". Wondering now if it wasn't actually EDS... Lately I've been having fairly regular pain in one or both of my knees, my shoulder partially popped out of place for seemingly no reason (no trauma or anything), and my knee-cap has been doing much the same thing. When I went to the chiropractor, he said I had three ribs out of place, which explained the excruciating pain in my chest. I also have migraines, which are common with EDS, but they're also just a symptom of POTS in general. Speaking of which, I have a diagnosis of POTS already, which seems to be fairly common with EDS. Other POTSie symptoms I have that are also on the list for EDS are nausea and abdominal pain, fainting, and possible gastroparesis. My skin doesn't seem abnormally stretchy to me, although it does bruise/scratch easily. (I can scratch myself with just my fingernail.) Yet I also had a laparascopic appendectomy about three years ago, and didn't have any healing problems there. So... EDSers... does this sound like it could be EDS, or am I just stretching it? (Hehe... pun intended.) Could it just be simple "flexibility" and not EDS related? Also, I was wondering... Is there any benefit to a formal diagnosis of EDS? From my reading, I've found out that it's not curable, and it's not very easily treatable, either. Most patients (from my understanding) simply have to learn a lot of coping mechanisms and take pain medication as needed. Unless there's vascular involvement (which I would sincerely hope there's not), is there actually any benefit (other than personal gratification) in getting a formal diagnosis? I'll be seeing a new doctor soon who mentioned wanting to see if there was something else going on, and I'm pretty sure he mentioned EDS or something related to it. He also mentioned something else, but in my brain fog, I've totally forgotten what it was... Darn POTS. Ah, well. Any advice or tips are much appreciated!

Well, I guess it depends on what you call "medication trial". One doc I went to told me it was "normal fainting" (is there such a thing???) due to a family history of vasovagal syncope, and told me to take salt-tabs and drink lots of water. We weren't very satisfied with this, because we know the difference between what's normal for our family and what I was experiencing. After seeing a different doc, I was diagnosed with POTS before being put on Florinef. Neither of the doctors I've seen have even mentioned there being subtypes, much less actually telling me which one I am. In fact, the only two medications they've been willing to try are Florinef and Midodrine...

I only take one prescription medication right now- Florinef. I've tried Midodrine in the past and reacted very badly to it, but I'm going to try reducing the amount of Florinef I'm taking to see if the lower dose of that plus the Midodrine will be helpful. Of course, if you included all of the supplements I'm taking... then all in all I'm taking at least 6-7 different types, and about 12 pills everyday.

Well, late last week I posted about migraines and my upcoming doctor's visit, so I thought I would give a little update on how that went- not well. He basically said that we've tried the only two meds that he's comfortable working with- Florinef and Midodrine. I got some relief from the Florinef, but reacted very badly to the Midodrine. It's definitely not the progress that he would like to have seen, but he said that there's not really anything else he can do. He was very nice and gave me a few tips like elevating the head of my bed, doing leg exercises while lying down or sitting, etc., but I left the office feeling very discouraged. Basically we'd sat around for an hour and forty-five minutes to hear basically nothing. He assured me my heart and lungs are fully functional, and said that the migraines are a normal (if there really is such a thing) part of POTS. Thank you, Doctor. I don't really have anything against this guy. He's nice, he doesn't talk to me like I'm stupid, and he doesn't try to down-play what I'm going through. He made it very clear the wasn't discounting my suffering, and he assured me that this wasn't psychological, conversion disorder, or my fault. But no one really likes to hear that it's a lost cause. We had talked with another doctor recently, because we're really interested in natural treatments, essential oils, etc, and is a doctor who actually uses those methods as well as conventional therapies. He said that he had a few other patients with similar situations that he was treating, and also mentioned trying to find out if there was an underlying condition that might be causing this not to respond to traditional methods. I'm not sure exactly what he mentioned, but it was at least investigating EDS (or something like it), and one other thing that I can't remember... I think he sounds like he might be worthwhile to see, and would actually be interested in making him my main care-provider. He is the first doctor I have talked to who was actually interested in looking for a cause, and not just ruling out any "serious" heart problems. I know that a lot of POTSies also have other health issues that either cause or contribute to their POTS, and I was wondering if you guys would be willing to share info about related conditions that you've been diagnosed with. I know about EDS, but I also know that there are other conditions that mimic or cause POTS, and was hoping some of you could share. Until then, we're going to try slowly getting rid of the Florinef to try the Midodrine on its own, and see how that goes. I also got a pair of compression stockings, and have seen noticeable improvement in the fainting while wearing them.