Lukkychrm42

Sorry you're having so much trouble, pooh!!!! I'm so glad that you've got your shower chair and stuff, though, that must be a lifesaver... I usually just sit down on the shower floor when i get really bad.. yeah, just imagine sitting down on the floor of a dorm shower.... who knows what's been done in there!!! Oh and I don't shave- LOL well, OK I do if I'm wearing a skirt or something, but I always wear pants... Haha... I have reasons for not wanting a boyfriend now- see, it's too hard to shave!

Yeah- I find that when I feel the worsT, I often have high to normal BP, with a fast heart rate (yeah ok duh), but when i'm the most lethargic and brain foggy, my bp is very low, and my HR low or normal for me (40-60)... Even before I was diagnosed, I told my PCP that I thought my BP fluctuated and was actually normal, but she didn't believe me and sent me in for an echo for hypertension. I still don't think she believes me, but luckily I won't have to see her for another year or so.

Hey, I had 'morning sickness' just about every day this summer and again in the afternoon.. I'm not pregnant either- I've got an IUD!! Luckily it's mostly gone away for now... I think for me part of it was the heat and working too much (as usual). hOPE YOU GET SOME RELIEF SOON!!

Thanks, guys, that's very helpful.

Everything falls asleep in my body, I think. More often than not, I get up from sitting down for class and start to limp, and someone asks what's wrong, and I just say, oh it's nothing, my foot's asleep. My feet, legs, butt, back, (now those two feel really weird!!), hands, arms, and sometimes face all seem to enjoy playing this little game. I have no idea what causes it, though.

I'm so sorry it's not working out for you the way you had hoped. Please know that we're here behind you no matter what you're able to do. We're so proud of you for getting into a program and going for it, and I think everything you've done so far is just wonderful. I admire your courage, and I hope you recognize it, too. Best of luck with your remaining classes, and I hope you get to have the awesome prof later on!

Haha who wants to go to the gym when you can just stand up? *sigh* Yeah I notice that too... I also get hiccups ALL the time and they do the same thing.

Hi there My average healthy baseline BP is about 115/75. I start feeling dizzy (apart from the HR) when it drops below 100 (top number), and when I am lying down on no meds it's anywhere from high 70s/40s to 90s/60s.. When I stand up it usually jumps up to normal or sometimes high. (Haha this is why I got my first echo- my doctor took my BP ONE time and it was high, and with my dizzy spells she brought out the big guns.) During my tilt, (which isn't the most controlled test in the world), my bp went from 112/78 to 74/palp. My doctor had no explanation as to why I was still standing, but there I was. (And much of the test they couldn't even find my BP manually.) I dunno- it seems like we're pretty wacko!

SO- when I was at Vanderbilt in August, they seemed particularly interested in the fact that I was often flushed- red in the face. Dr. Raj who did the dynamic volume testing asked if I always had that problem and I honestly didn't know. Paying attention more closely now, I see that I do, and I just stumbled upon WHY I think he was so interested. He published a study in the beginning of this year on the correlation between POTS and the MCA disorder, concluding with MCAD as a probably cause. Reading through it and then googling the term, I found that the list of symptoms mirror incredibly my dysaut. symptoms, including the less-likely BP rising upon standing, my GERD, bone pain, and the GI issues that seem opposite of many others' here, and pretty much all the other ones. Since there doesn't seem to be any other cause for my POTS, I'm really interested in learning more about this. I think I've seen something about it in 1 or 2 signatures, but I don't remember whose.. Thanks in advance for any info or experiences you might be able to share! Megan

Yeah, wahoo, and yippee!!!!! That is such great news!!!!!!!!!!!!!!!!!! Congratulations!!

Hi there Madwife, I haven't been able to find Gatorade in the UK so far (been here for 3.5 weeks), but Powerade is pretty much the same thing. I don't like it as much, but only if I'm desperate. It's sold by Coca-cola, and I've only seen it in blue here. It's got sodium and potassium, which can help us get back on track if we're electrolyte-depleted.

Chad, I get the stomach pulse all the time when laying down, especially if I've eaten recently. I don't know about the tightness, but I also feel bloated pretty much all the time.

I'm with you, Rita. I live on veggie boullion and miso soup packets!! I only drink gatorade or pedialyte when i'm in a pinch.

Hi there. It was Dan's idea, so that we wouldn't have to always review diagnoses and medications when we're answering each other's posts. To add a signature to your posts, go up to the top of the screen under DINET and you'll see 'My Controls.' Click on that, and on the left will be a contents list. Go under Personal Profile and click on Edit Signature. That way you can add info to all your posts!

I think whether it's a healthy food is based on a healthy person drinking it instead of water. Those of us with problems with blood volume, low BP, etc. need the extra salts and fluid that it provides.. I mean, sure, water with sodium chloride and potassium chloride dissolved in it would probably be healthier, but it's disgusting!! It's not a whole food existing in nature. It's got dyes and refined sugars, and stuff like that. But I think it's better for us than it is for "them."

It's not necessarily "normal" within the POTS community, but there are some of us out there. I have very low BP sitting and lying down, and then it jumps up to normal or higher when I stand. It's not something to worry about, in my experience. As for the heart racing one minute but not the next, for me that's usually related to my medication. When I'm completely off medication, it's consistent, unless I'm having a rare good day.

I definitely notice a difference with changes in altitude. I grew up at sea level, and then I went to college in Boulder, CO. My POTS condition definitely became worse while there, but then I crashed again at the change back to sea level this summer (but that might not have been altitude related). Also, I don't know for sure if there was a connection, but as soon as I moved to Colorado, I started getting heartburn, and now I have GERD. When I feel up to it, I still love to snowboard. I only make it through about 4 runs and then I collapse into my car (not literally), but it's worth it!! but between the dry climate, activity, and temperature, it exacerbates symptoms. If you've found research that notes the ANS, catecholamines, and cardiac output, I think it's safe to assume that it'll affect POTS, though how much who knows. Hope you're feeling better soon!

Good thinking, Dan!

I love slipper socks together with warm fuzzy slippers. I haven't found any good shoes yet, so I usually end up wearing ski-socks with them! (and if I'm really cold and desperate, those ski foot warmers!) Good luck!

Obviously Kristen would know more about this than I, but I think that if you're lactose intolerant, you are still (usually?) able to tolerate yogurt and hard cheeses? I don't do any form of dairy, but I love soy yogurt, and the cultures don't seem to affect me negatively. I, too have GERD, and since my insurance ***** they wouldn't cover the Protonix starting right before I left, and now I have to use Zantax, and the long-term CVS brand acid reducers, neither of which works very well. (Oh I miss my Protonix!!!) I apologize in advance for being graphic, if I am! I have had bad gas/bloating/cramps/diarrhea for about 8 years now. Most days. Unlike some POTS people, I have very rapid digestion, so my problem is opposite theirs. If it's possible, I think the Protonix might have helped my digestion a little bit. That's weird, too, if your acid is in connection with the soda, cuz I always have thought they would be acidic. Also, it does say in "What to Avoid" that dairy might aggravate symptoms in some of us. And hey, if dairy doesn't work out for you, soy's pretty good!

Yup I get this constantly. It's very common for us, but I don't know exactly what causes it. For me it's also difficult to concentrate (the Florinef made that awful), so writing papers is a bit difficult. I haven't found anything that helps, yet, but am looking!

Ha ha it's about an hour northwest of Manchester on the west coast.

That makes sense about the antibiotics... Hmm nope I hadn't thought about that. Definitely worth trying though. I don't suppose that you guys have sprouted bread over here in the UK, huh? Because I LOVE bread and could suvive on bread and olive oil for a surprising amount of time! My friend just asked me if I thought veganism caused this. I said I don't know any other vegans in DYNA, and I have normal levels of B-12 and iron, and I've never broken a bone, so I fail to see the connection. The first time I began to feel lightheaded every day was about a year after I became vegan, but I'd been having other signs of autonomic dysfunction for as long as I can remember (temperature regulation, heat intolerance, digestive issues, almond-shaped eyes, high palate, noise and light sensitivities....etc.) I don't see how cutting out cholesterol and lots of saturated fat, and eating tons of fruit and veggies every day would cause a heart condition. Dr. Robertson (Vanderbilt) said he admired me for it and said that he considered me very healthy except for the autonomic nonsense. Anyway, I'll give the yeast thing a go just in case, and let you know. Glad to hear that you're doing better from the bleeding and pain- that doesn't sound like fun! I'm sorry I don't have any other advice than buying the few prepared foods that might be available. And also to come up here to Lancaster, cuz there's a vegetarian cafe with lots of vegan and GF/WF stuff.

Good for you for getting more involved!! My dad doesn't seem to understand why I can't go on 400 mile bicycle rides with him like I used to... I'm sure your wife and daughter really appreciate your interest, and it will help you all understand each other better. Anyway, thumbs up and I think it's so nice that you're interested!

Hey that's interesting. I'm at my POTSiest between about 10:00am and 1pm (and right when I wake up), and then usually need to nap in the late afternoon. Sometimes I sleep from about 11-9, and then nap from 11-2, (and sometimes from 6-7 or so) and then sleep at 11. As for dinnertime, I usually use my 'second wind' to cook something, whether it's a time-consuming vegan stroganoff (that thankfully allows good quality sit-down time) or a hummus sandwich consisting of bread and hummus! But whenever I cook grains and beans I always cook extra so I can use the leftovers, and I try to get as much premade stuff (whether sauces, spice blends, veggie combos, canned goods, as I can afford and manage to carry home from the store without toppling over halfway. Hey, perse- how do you know that POTS made you wheat-intolerant? Did you just cut it out and you noticed a difference? I've got major digestive problems/IBS, but I cut out gluten and wheat for about 3 months and didn't notice any difference. I'm vegan, so I don't do dairy, and it doesn't get better on the rare occasions when I don't get so much fiber, either. I don't suppose there's any sort of "meals on wheels" program in the UK, is there? Sorry they're being so insensitive down there!!