kmichaelson

Hi Katie, I'm sorry can't offer anything on why this happens, but I just wanted to say that I've experienced the same thing. It seems that any sort of incline or stairs have a much more extreme effect than they should. Like you described, I can increase the difficulty of my exercise and not have such a bad reaction on a level surface, but even taking it pretty easy on an incline brings on the POTS symptoms really badly.

That's great news that you're seeing so much improvement! Did you have arm weakness before or is that just a side effect you're having now? Thanks for reporting on what it helps with and where it isn't so great. I'm on midodrine right now and while it's helped some, it hasn't made as big a difference as I'd hoped, so it's good to have an idea what other options are and how people respond to them.

That's something I have a lot of, so I just wondered if it's a pretty normal POTS thing or if somehow your medication is overcompensating in some way...? Anyway, I'm very glad to hear it's more good news than bad!

I googled "itchy, swollen, red hands" once and that brought me to a thread on this forum. That's how I discovered this place in fact! Were you googling POTS in general or something more specific (if you don't mind my asking)?

Yes!!! I described my mornings to people using almost these exact words--that it feels like I'm waking from a coma. It takes me so long from when I first wake up until I can move, open my eyes, sit up, etc. It's quite a process! Sometimes my husband will try to talk to me in the morning while I'm still in bed and it's like I can hear him and I'm awake, but I'm not yet awake enough to move or respond so I can't say anything back.

Then I'm also very sore and achy once I get up. Like my feet hurt a lot in the mornings...why this is I have no idea since they should be rested you'd think. I stumble around like a drunk tin man for the first couple hours that I'm up.

Hi Ginger, I've had this before as well, but mine went away after maybe 15 minutes so I think my legs or arms were just REALLY asleep in my case. Did you get pins and needles when the feeling and control came back? That's what happens to me, so (maybe mistakenly) I've always assumed it's just an extreme case of my limbs going to sleep. It's so weird though having no sensation at all and no control over a body part like that!

As far is if it's a POTS thing, I don't know for sure, but my circulation is so terrible sometimes that it kind of makes sense that we might be more prone to this.

This isn't something I'd ever considered being related to POTS, but now that you mention it, I have the same enamel issues (the tips of my front teeth are translucent and my teeth are really sensitive). Also, I've never had any cavities at all (knock on wood), so my teeth are pretty healthy otherwise.

I don't think I have ongoing gum disease, but I seem to have "flares" where my gums recede and hurt really bad. I also get really bad flares of mouth ulcers like someone mentioned. I used to get those a couple times a month, but thankfully they're much rarer now. I've wondered about having EDS based on other symptoms I have, but I haven't had any tests or dx for it.

P.S. I sometimes feel like a complete "snowball of random oddities" too! I might have to borrow that phrase.

I tested positive for EBV reinfection about 6 months ago, and when I originally had mono in college it was pretty severe and I realize now that some of my symptoms began at that time (though I wasn't diagnosed until more than 10 years later).

Hi Jen, I'm glad to hear you're feeling a bit better today. I'm the same way where I try so hard to stay positive, but when you feel so bad I think it's impossible not to get down at times. I hope you can find the right team of doctors... sorry I don't have any constructive help for you, but I feel for what you're going through and wish you the best. <virtual hug>

I've talked with my neurologist about Parkinson's Disease, Dizzy, because I will sometimes freeze, and fall over, and he says that even though we may have similar symptoms, we have no more chance of getting it than the average population, but then I read some scientific posting that said we had a 44% chance of getting it, so I don't know what to believe. Maybe that would be a good question to the physicians who are here on DINET...

That's interesting--I would love to get a specialist's opinion on this too.

I have this sometimes as well, especially (like you said) when I'm awakened suddenly. I don't think mine is as severe as yours, but it is kind of a "tuning fork" feeling, like my adrenaline or norephinephrine just kind of went off the charts!

Hi res, Welcome to the forum! I've never had a Holter, but interested in one just to see what's going on during the times when I'm feeling so bad. It's hard to go get your blood pressure cuff when you can barely get up! It seems like you should be able to get the data since it's your medical info... did you ask the cardiologist for it, or did they only give you the report?

I just wanted to chime in that this is very familiar to me too. I definitely have brain fog and recall problems, and they're worse when I'm standing. For instance I was at the pharmacy the other day and when I went up to the counter they asked my phone number and I couldn't remember it! Things like that happen frequently to me now, and I used to have a pretty good memory.

My lack of coordination and dexterity has been a big concern to me. While i hate that others are having these issues as well, it's a bit comforting to know that others with POTS have experienced the same thing. I have trouble sometimes just with the motion of walking and it's almost impossible for me to make any sudden movements any more. Other than having a tremor, my symptoms are almost identical to the onset of Parkinsons. It's weird all the things this disease can cause that you would never know about until you experience it!

I just wrote all about how another POTSy and I actually went nuts on ABC and the other POTSy was the one who spoke with Dr. Fagoros (who is super cool). Hope its ok to post this, but its a really interesting story. She spoke directly with Levine as well, who is very nice, but refuses to stop using the Grinch term.

Hi Claire, Thanks for posting that and for all your efforts to get ABC to refocus their story! I'm so grateful that you guys were able to discourage them from using the term "grinch" at least! I might have to share your blog with my family members who keep sending me the ABC story so they can see what an inaccurate or incomplete picture it presents. Also, that's blurb from Dr. Levine about excluding everyone with other POTS causes from the study is really amazing. Granted I'm not a scientist, but it seems awfully obvious that if you screen out anyone with noncardiac reasons for their POTS, your findings are going to be pretty skewed in favor of the "small heart" theory.

Thanks both of you for your responses! It's a relief to know there are treatments that will help if this is rosacea. I just thought it was interesting the info I read related rosacea to flushing and capillaries, which seems to be a common topic here too!

The past month or so I've had a couple of small red spots in the same spot on both of my cheeks. The spots are really small and hurt a tiny bit (like there's something under my skin)... I have a dermatologists appointment scheduled but its not for almost 2 months. Does this sound like rosacea to those of you who have it? Also, I was reading that rosacea can happen because the capillaries overly dialate, so I wondered if its more common us?

THANK YOU for making my day, Bananas. So well written, concise, and logical. What is all the talk about the media? Has the Grinch Syndrome been publicized lately?

I so love that guy right now- had to go back and look at his name.. Dr. Fogoros- you, sir, ROCK

Jen

Hi Jen, There were some stories on ABC news recently that talked about Dr. Levine's studies and promoted exercise as the cure. Here's a link to the story: http://abcnews.go.com/blogs/health/2012/02/29/what-astronauts-have-taught-doctors-about-fainting/

Thank you for posting that! I've been so disappointed that when POTS finally gets in the news, it has to make it sound like we're all just out of shape and need a bit of exericise to perk back up. (Maybe it's not that bad, but I feel like that's the impression people will walk away with.) It's wonderful to see a doctor explain and verify what we've experienced to be true!

I have lost the curve in my neck like katy describes as well. I had an MRI of my neck and it showed a bulging disc, but the doctor said it wasn't affecting my spinal cord. Those of you who have been diagnosed with Chiari and stenosis, is it a pretty straightforward diagnosis or does it take some specialization to know to look for it? (I just wonder if it's something my doctor would have looked for on my MRI or not.)

Hi Cindee, I get a lot of joint pain as well like others have described... my doc hasn't really related that to dysautonomia and I haven't been tested for anything so I can't share much insight there. However, one thing that was interesting when I discovered I had POTS is that my leg aches that I've had my whole life were finally explained. I guess lower leg pain is pretty common with POTS (due to blood pooling I think), so it was nice to finally know what was going on there! Of course the "coat hanger" pain you described in your neck and shoulders is a common POTS phenomenon too (in this case, I think, because not enough blood is reaching that area). It's annoying when doctors don't put the whole picture together--I'm sorry yours is not taking all of your symptoms into account.

Thanks Kimbellgirl & Jangle! I did my exercise today with the knowledge that even if it's not fun, it's worth it!

We need to listen to our bodies; we have good days and bad days no matter what...Don't overdue, because you will suffer the consequences!! My heart rate is all over the map when I exercise. I've gone from 50's to almost 200 beats/ minute, while on the elliptical, and of course, that causes symptoms...I just keep going; if it's a bad day, I only do 2 miles, if it's a good day, I try for 4. I usually only go to the gym twice a week, so I won't burn out. I walk my dog short distances every day, though. I have done a lot of different exercises over the years, tried just about everything, and I know my limitations, especially now. My ANS doctor said I was in the best shape of anyone she had ever seen that was just diagnosed with dysautonomia, and that is because I am determined NOT to let this overtake me!! Even when I was so sick, with insomnia, tremulousness, nauseous, and tachycardic, if I didn't exercise, I was worse, so I would start up again!! I am very driven, and nothing will keep me down...Attitude is everything...I choose to be as healthy as I can be

That's inspirational to hear! I've been trying to get back into exercising the past few months and like most people have said, it pretty much kills me for the remainder of the day. I miss the good old days when I used to get a high from exercising. Now I just have to drag myself through the bare minimum. Still, it's good to see that it can pay off in the long run! Maybe one day I can even enjoy it again.

My hands and feet swell like others have said. I especially notice it in my hands because they get super itchy and red when it happens!

I totally agree, Marti! This forum is such a blessing. Not only are there are so many well-informed posters here gathering all the disparate information out there on this disease, but it's just immeasurably helpful to have a group of people who can actually understand what it's like to go through all of this.

Good luck with your appointment today--I hope it goes well!

Yes, I've had spells of pain like you described too. I had an endo and colonoscopy as well, but everything looked normal, which was kind of a relief, but at the same time made me wonder what the heck IS causing it! It feels like very really severe cramping/contractions in my stomach and like descriptions of ulcer pain I've read, but no ulcer showed up.

Good job!!!! I'm so impressed that you were able to take them on. It's infuriating that you had to go through so much hassle that to get what you're entitled to, especially when you're so sick. That's what always makes me the most upset in dealing with insurance is that they pick on you when you're at your weakest--but it doesn't sound like you're weak, and they know that now. Good luck with your visit and let us know how it turns out!