potsyturvy

Does anybody else randomly get a bright red nose? I have noticed that I get this when my POTS is flaring, when I'm super tired, or when it's winter and the heater is on indoors. Sometimes one of my ears will turn red too. It is also really hot to touch, but it doesn't itch or hurt or anything. I'm just curious if this is a POTS thing or if anyone else gets this! I feel like Rudolph!! lol

Thanks Kate2011! Our stories sound pretty similar! I'm 22 also. I went to college in another state for a while, but had to move back home for my senior year. Luckily I graduated, but it was really tough. I'm sorry you're parents aren't very supportive. It is so hard for people to understand what we go through on a daily basis!

I'm a 22 year old female, who isn't very active thanks to POTS. I'm currently taking Zebeta (Bisoprolol). I have been on the same dose for about a year now. My heart rates usually run in the 70's to 80's on the beta blocker. Right now I'm on my period (sorry for the info, but thought it might be helpful to know), and my resting heart rate has been running in the low 60's. I know this isn't technically bradycardia, but it seems low for me. I have felt really lousy the last couple of days: dizziness, light headed, extreme fatigue, weakness, etc. and was wondering if it could be due to the lower heart rate or if it is just due to my period. Before I started the beta blocker, my resting hr was 100+ so I'm not really sure what a good hr is for me.

On my first ttt, before meds, my bp stayed the same and my hr went from 100 laying down to 180 standing

I have low grade fevers when I am in a flare, a lot more dizziness, and can basically do nothing. If I am not flared up, I just have more of my typical symptoms and am able to do a lot more.

dizziness/balance problems, anxiety, exhaustion

Doing better. I was bedbound from January to March and have slowly gotten better since then. I'm still not back to where I was prior to this last big relapse, but I'm now up and just started doing volunteer week 1 day a week for 3 hours, that still is enough to wipe me out, but so much better than I was months ago!!

I had never seen them before.. they are so pretty! I want them to be popular again!

I found this really cool website that sells rings made out of vintage spoons. I think they are soooo cool! They totally make me think of "The Spoon Theory". We could all use an extra spoon or two . I so want the daffodil one, maybe someone in my family will get it for me for Christmas!

http://www.etsy.com/shop/Spoonier?ref=top_trail

I'm with Yogini.. I hated the article calling POTS "Grinch Syndrome". This wasn't a perfect article, but it was much better than most I've read.

I have hypovolemic POTS... I don't see a huge improvement from exercise. It mainly just helps me to maintain my current activity level. I use the recumbant bike 6 days a week. I also make sure to do exercises that strengthen my arms and abdomen. My doctors have also suggested swimming as a good exercise but I find it takes to much energy just to get to the local pool and having a recumbant bike in my house is much easier!

Frugalmama, I've been diagnosed with CFS by a couple of doctors. I try to exercise in the early evening so if I have side effects from it, it doesn't interfere with things I have to get done that day. It took a while to learn to listen to my body and learn how much to exercise and what kinds of exercise I could do without aggravating my POTS or CFS. It's a pretty delicate balance, but I know exercise is crucial so that my POTS doesn't become worse from deconditioning.

I'm not sure if mine is the same as yours or not. When I lay down at night, my arms or legs will jerk multiple times (kind of like a really bad spasm) and then finally they will wear out and quit jerking. Mine didn't start until I started having really bad adrenaline rushes, so I have kind of attributed it to that, though I really don't know what causes it. Sorry I couldn't be more helpful!

I have this happen a lot. I always get vertigo when my ears are stuffy and I used to just attribute it to allergies. Now I think it is partly related to POTS because it has gotten a little better since I started taking florinef and bisoprolol. My doctors always tell me my ears look perfect when they feel super stuffed and clogged up! It's crazy!

I have had pheo ruled out. I am going to a new pcp Thursday and plan to bring this up. I don't think it's carcinoid, but I want to get it ruled out. I am also curious, Tee601, who could test for MCAD.

I have a hiatal hernia (and I get ovarian cysts all the time.. go figure! lol) and GERD. My doctor just told me to take Prilosec for it. At one point, it was flared up so much that I had stomach acid get into my larynx and cause asthma like symptoms (but mine wasn't true asthma). My doctor just made me take Prilosec more often until it healed and now I'm back to a normal dose. I think as long as it doesn't bother you and isn't causing serious symptoms, overall don't worry about it. I think surgery for it is pretty much a last resort.

I have noticed for several years now that my face flushes really bad at certain times. Sometimes it's my whole face and other times it is just my nose or just my ears. I can usually tell when my face is flushed because I can feel it radiating heat. I have used a thermometer to measure my facial heat when it is flushed and it is usually 101* or higher. I have noticed that I experience it more in the winter when I have heaters on at home and in the car. I also flush really bad if I am out in the hot sun too long. My friends will tell me that I have a horrible sunburn, but the redness always goes away within 30 minutes of going inside. I also flush way more when I haven't gotten enough sleep. I have read about mast cell activation disorder, but it doesn't totally sound like it to me. Is this common with POTS? I have been diagnosed with Raynaud's and suspect erythromelalgia, though I am not sure if this could be caused by either of those. Sometimes it is hard to determine if certain symptoms are from POTS or from something else!!

I get dizzy when my allergies are bad. My sinuses swell, making my inner ear swell, and causing vertigo. I also have migraine associated vertigo and the immunologist I just saw said that allergies can trigger migraine symptoms. I've been to a bunch of doctors for this, since it is one of my worst symptoms and most say that bad allergies or sinusitis can cause vertigo symptoms. Hope it clears up soon!!

I don't know anything about metoprolol, but I do know some about doctors in Oklahoma! My main POTS doctor is in Dallas, but that is about 5 hours away from me. I only see him every couple of months or so, but for more urgent stuff, I have a pretty good cardio in my home town (a small town near Tulsa) who knows some about POTS, and recently went to a lecture on POTS. I've found that having my Dallas dr who is really up on all the new research and treatments, combined with having a local doctor who is fairly knowledgeable about POTS has been my best bet. Hope you find a good doctor soon!

My rbc and hemoglobin always come back on the low side of normal or slightly lower than normal. I don't know what it would mean if it was high, wish I was more helpful!

My weight fluctuates by about 5 lbs on a daily basis. I had a bad flare up earlier this year where I lost 10 lbs and was down to 85 lbs. Since then, I have gained 15+ lbs and am up to 100 lbs give or take a few.

My doctor gave me a prescription for IV saline to use "as needed". I have had some saline from shots before and it made me feel great for a few days until I had blood drawn and then I felt lousy again. I am curious what you who have used/are using IV saline think is good/bad about it. so, what are the pro's and con's of IV saline?

That totally makes sense Green. I think it is weird that I feel worse than I did a year ago when I was diagnosed, but because the meds make my heart rate and bp look normal the doctor thinks my POTS isn't causing the problem and that it is something else.

Thanks everyone for responding! It makes me feel better knowing I'm not the only one who looks like I should feel better when I don't.

Maia, the catcholamine tilt was a tilt test where they measured the norepinephrine, etc while laying and while standing. It all came back normal. I had a 24 hour urine test a year ago and the catecholamines were normal in it too. Occasionally my norep has come back a little high on blood tests, but not enough to concern the doctors.

Sandyshell, lol. I have sooo wanted to do the same things to some of the doctors I've seen too!! When I brought up 1st brought up POTS to my primary, he said he'd bet money on it that I didn't have it. Once I got the test results back that I had it, I totally wanted to be like "In your face!! Now pay up!" lol

I just got back from seeing my ep-cardio and he did a tilt, sweat test, echo, qst, and gastric emptying test. Everything came back mostly normal. He said if I wasn't on meds for POTS and he hadn't seen my numbers before my treatments he would not diagnose me with POTS. I know this is a good thing and means that my meds and exercise are working, but I still feel awful! I have no energy, I have a lot of GI problems (GERD, IBS, constipation), I'm dizzy, and I feel like I am having adrenaline surges (my catecholamine tilt came back negative for hyper POTS). How can it be that my tests all come back normal but I still feel so bad?

I have the vertical ridges in my fingernails and both vertical and horizontal in my toenails. I am anemic, so I guess that's the cause of it.

22 year old female. German, Irish, Scottish, and Native American. More German than anything else though.