Merrill

I'm confused--you were just diagnosed with POTS? Or with a condition causing pelvic pain? Did you have a TTT? I don't know that pelvic pain is necessarily associated with pots ... (rapid heart rate yes, low bp yes, and a whole host of other symptoms that are brought on by dysautonomia...) ... but people with pots do often have other conditions concurrently. Is your pain--and your pots--worse at different times of the month? during ovulation (which for me can be quite painful) or just before your period? Maybe that's related... Sorry to hear you're not feeling well...You'll find lots of companionship and advice here, so welcome! (Wish I could help more...)

Hey, Emily--know what you mean about the tourniquet around the thighs--I experienced that very thing when I tried to save money and buy ames walker brand ... even tried several sizes larger, but no go. Those suckers sucked! but Mediven brand fit me great! So all that's to say, our legs are our legs, and it just takes experimenting to find the right brand and style that fit that is comfortable--the last thing any of us needs is to wear something that increases our discomfort level during the day. Seems beside the point, huh?

Ginger--I hope you downstaters will join us in the state of Chicago and vote!!! Please oh please??? (I guess my candidates of choice got edited out. Oops; that must've been a no-no. Hope I didn't offend anyone. I had to add this b/c the post sounds so goofy now!)

Hi, Ginger. Just wanted to say welcome to the board, fellow Illinoisian ... I'm up in Chicago. Sorry to hear you're having a tough go of things ... that skiing accident was sooo serious! Uch. Having a good cry sounds like a fine idea; I have them all the time...but finding conversation and humor and support on this forum is an even better one, so come here often. I can't answer many of your questions ... but I'll say that POTS isn't always secondary to another health condition. That's true for me, anyway. I have pots and pots only--and I've had it for more than 30 years since I hit teen years (but I was only diagnosed 9 months ago as symptoms had gotten worse). Actually, looking back on my life, I can say that I've had years of better and years of worse, with some symptoms just being part of my identity (e.g., exercise and heat intolerance and super-fast heart rate). By the way, my blood pressure didn't drop during the tilt table either; for some there's no blood pressure change at all, while for others, bp drops, and for still others, bp goes up. BP isn't the most important thing they look at during the TTT; heart rate is. If I weren't so tired, I'd give you some links to other resources you might want to read... the dysautonomia book from the references section of the NDRF site for example. Gotta run, but take care.

danelle, just a quick thought--that heart rate differential sounds "normal" for people with pots...

rqt, you may want to do a search on this forum on the topic of compression hose, say, for the last 6 or 8 months--there's been much discussion on this topic! I can tell you that you'll find nearly unanimous support (pun intended)! I too started out with 20 to 30 compression, first knee socks, then after a month, I moved to thigh highs ... and after about 2 or 3 months wearing 20-30 thigh high, I switched to 30-40 thigh high and I've never looked back! I love 'em (mediven elegance brand fit me especially well and are very comfortable). I wear them every waking hour (except when I'm in the shower). I wear the thigh highs b/c I could never stand having anything tight around my waist...though I do know that blood pools in the abdomen too, which is why the pantyhose are recommended. (My cardiologist says knee socks are not recommended, thigh highs are OK if you can't wear the panty hose.) All that's to say, maybe the slight nausea was from the tightness around the waist? I would doubt that the hose would cause a headache ... did you wear them again today? Keep trying... They can help so much! (I find increased energy, capacity to walk and stand, less heaviness in my legs, even probably lower heart rate.) good luck, m

Hi -- here's my 2 cents -- I used to take Claritin when it was prescription b/c I had some prescription coverage w/my health plan. When it went over-the-counter (and therefore expensive), I switched to Clarinex... pretty much the same drug only still prescription and cheaper for me. So if you have any prescription coverage w/your health insurance (if you have insurance...sadly too many millions are without ... grrr... ), I recommend calling your physician and getting a scrip for Clarinex. Many doctors will prescribe that w/out putting you through allergy testing. My bottom line on those two drugs--I have zero side effects, and they do work for me. (I too suffer in the fall, esp. w/mold and ragweed!) If you buy the OTC Claritin, stay away from the D (decongestant) version. I agree w/earlier posts--decongestants can really make your heart race. (I couldn't make it through a day w/Benedryl--makes me too tired! Actually, a key ingredient in Benedryl is what makes you sleepy w/Tylenol PM.) Here's hoping for an early frost, m

I just saw this on the drweil.com web site and thought some of you might be interested... the recipes sound good for just about anyone! best, m http://www.drweil.com/app/cda/drw_cda.html...AM-articleId=48

I wish I knew how much money we were talkin' about--and if that's what's most needed right now to complete the project! (I imagine it's complicated--creating a plan for shipping, payments, etc.) thanks to everyone who's done research and participated so far...

Ditto! best to you, m

Hi, Stacey -- I get incredibly melancholy on my birthday too--and have for at least 10 years now (I'll be 43 in Nov. and posting a similar message then! ) So you're not alone in that piece ... but I was glad to see the forum has helped you find your smile today and that your husband has some fun in store. I bet he's a great guy... I agree with all the great advice offered so far... revel in your blessings today (which include having a place to share your sorrows) and consider this the first day of a new year of surprises ... May they be good ones and may you have healthier days ahead. m

Yes, you can have POTS for a very long time without knowing it or even considering you have a diagnosable condition. By the way, this term "full blown pots" -- where does it come from? ... I've never heard any physician use that term or read it in any of the medical articles I've seen. I have a feeling people use it to mean "the time when they felt at their worst" (and maybe then sought a diagnosis or medical care) ... and that can mean different things to different people too. One person may be able to work full time and still be at their personal worst; another person can't get out of bed without passing out. Everyone's experience with this thing is unique!

I've worn a 24-hour holter monitor and had an ekg and a stress-echocardiogram. (A stress echo, by the way, allows them to do a baseline echocardiogram and then they do a stress test right after, where you walk on a treadmill and they monitor your hr and bp etc for a set amount of minutes. They stopped mine after about 9 minutes, not because I was too tired but because they "didn't want to see what would happen if I went over 200 bpm." (Would I have exploded? I'm still curious!) Then you lay back down and they do another echo, watching the heart go back to resting. It's my understanding that the echo provides the information needed to rule out mitral valve prolapse as well as other structural/mechanical problems. You don't need a stress test for that ... I don't think I'd pursue one if I'd already had an echo and other cardiac tests AND been diagnosed with POTS. Amy, you do wear 30-40 compression hose (or thigh-highs), don't you? If not, give 'em a whirl; I find they help with all my symptoms, including shortness of breath! m

Amy, it's a good question, and you might want to start a separate strand with that title... (I'll post my answer there... unless you don't, in which case I'll come back and post here! )

Amy, I spoke with a high-risk cardiologist as I was undergoing (unsuccessful) fertility treatments, because I too was curious about all the "what-ifs" ... and knowing that heart rate increases with pregnancy anyway. And I wondered about beta-blockers etc... She said that if it was necessary, we could consider beta blockers AFTER the first trimester ... but that it was better if I could avoid. I know many people do take them successfully throughout pregnancy (or at least during the last two trimesters). But in any event, my regular cardiologist said he wouldn't give me beta blockers without also putting me on midodrine; he said that in my case, given what he knows about me and my particular physiology, they would make me feel worse. Just to clarify--my hr does go down to the 60s and 70s during sleep... resting as discussed below meant lying down for awhile ... and like I said, the non-med treatments and trying hard to keep stress at bay or redirect my focus with meditation-type techniques when things get icky help a lot to keep my hr closer to 110-120 than 150! I should also mention that there have been some years in my life when I think my rate was slower and I was healthier overall. In my late 30s, I gained 40 pounds without trying (and I lost about 20 also without trying when my pots got bad again about a year and a half ago). The heart is a very strong and flexible muscle... My simple advice is to try not to worry about it or think about it too much if you can. take care, m

Amy, I know you addressed your question to Katherine--but would you mind if I threw my 2 cents in? My POTS was diagnosed by a cardiologist...I had a whole battery of cardiac tests to rule out a bunch of problems before beginning autonomic nervous system testing. My resting heart rate when I went for my stress-echocardiogram was 148; it was also 148 when they strapped on a holter monitor weeks earlier. My heart rate has ALWAYS been high--at least since I was a teenager, anyway... and I'm nearing 43. (In the past, doctors said things to me like "does your heart always beat this fast" and I'd say "yes" and they'd move on. Next question? I guess it hasn't bothered me too much in the past--you accept what you're used to. ANYWAY, I don't want to make this too long... but because the structure of my heart is OK, the cardiologist assured me that I oughtn't worry about the kind of "inevitable damage" you describe. The heart is responding properly to the lack of venous constriction in my legs. It's not dangerous (tho it can certainly be uncomfortable at times! And yes, I have tons of irregular beats too...) I suppose I'll be monitored a bit more closely now that we know why my body is doing what it's doing...but it's certainly not a given that I'll suffer heart damage as a result of POTs! The salt, fluid, and high compression hose have brought the rate down to probably between 105 and 130 most of the time, and that's fine with me... Take care, Merrill

Hi, Joan. Sorry to hear your daughter's having a tough time. A lot of people on this forum report sleep disturbances--whether it's more than in the general population we couldn't really know. You can read many posts on the topic of sleep and/or sleep study by doing a search for those terms. Just be sure you search a while back--say in the last year or so. (It hasn't come up in the last month or two.) I'm unclear as to whether your daughter had a traditional sleep study or not. It sounds like if she did, she didn't sleep...??? Is that what happened? Was she very nervous? (I slept more soundly than I typically do at home, which the neurologist told me is normal--if you remove a person from the environment in which sleep difficulty typically takes place, they tend to sleep better. But I digress...) It would be good if they could diagnose whether she has sleep apnea episodes or not. (THere are 2 kinds: obstructive apnea, which is treatable with a CPAP machine, and central apnea which you can't do much about.) In any case, a mild sleep aid may be all she'd need to get some rest at night. There's a new generation of sleep drugs coming out very soon--but Ambien is supposed to be excellent in the meantime. Good luck, Merrill

You're in my thoughts and prayers, Sue. Please keep us posted! Merrill

Yes, I too get terrible tachycardia when I have to get out of bed during the night to use the bathroom. I assume that at least a good part of the reason is that I'm not wearing my compression hose (which I wear during every waking hour, but not to sleep). Sometimes I swear I can feel the blood pooling in my lower legs--so of course my heart will then race as I'm walking back to bed. It's weird, and I wish it weren't so, but I guess I'm used to it and I know it won't kill me. Sigh. My heart also races when I awaken during the night from a dream or nightmare, even when I stay lying flat. Not fun! PS good advice to get up super slow and in stages; does nothing for the tach, but everything for the dizziness!

I'm not on any of these meds either, but I agree with what Calypso wrote. My cardiologist told me that he wouldn't put me on a blocker without also putting me on midodrine for the reasons Calypso wrote. You'll get some more replies, though, because I know there are others on this forum who have had great success with them (which type I'm not sure!) These people, though, may be dealing with high heart rate all the time, whereas it sounds like yours is only episodic. Maybe you could do what others have done and recommended--start really slow, with only a portion of a dose, to see what kind of effect it has and to build up to a full dose? good luck!

My husband doesn't have POTS and he does both things you describe--sleeps so soundly and breathes so quietly I too get scared ... and he also sometimes suddenly jerks (which doesn't awaken him, but will awaken ME!) Is she waking you up--or are you sleeping less soundly yourself because you're quite naturally and wonderfully worried about her? I wonder if this is new (a side effect from a new medication maybe?) or whether you're only just now noticing? My personal opinion is that it's not something to worry about... but as with anything, if you're concerned, check with her doctor (or ask yours)! Take care, Merrill

Thanks for doing this research, Briarrose -- would you be willing to post a sample message that we could use as a model?

Don't give up on your dream!!!! The world needs kind and compassionate people like you working in the nursing profession... I truly hope you'll do whatever it takes to stay the course... I went back and reread some of your old posts -- did the reglan stop working for you? It seems you got some relief from the nausea when you were taking it. Are you still on it--or are there other meds you might try? Have you tried any alternative (non-Western) therapies yet? I'm thinking acupuncture particularly... That might help! Are there any good practitioners in your community--or a short drive away? I'd also look into biofeedback and/or meditation. I hope you get some relief soon so you can get on with your life ... in the meantime, you sent a message of hope to someone on June 7 -- a lovely poem. Keep reading it...

FIBERGLASS??? Holy cow! What brand, can you say? What do you use now? Thanks, m

mary described perfectly what I meant by twilight sleep ... I hope this test will be just a blip on your radar screen when all is said and done ... and if you do have this, B-12 supplements sound very manageable, whether injectibles or swallow-ables (if that's the course of treatment). Best, m