EarthMother

That's what friends are for. :-)

As you have heard above, each person is different and each pregnancy may be different for the same person. I have three children and each pregnancy had it's own unique challanges and delights. Best advice ... find a team of GOOD doctors that you can talk with openly about your condition and your desires. For instance, I don't like to take a lot of meds and I really wanted to do things as "natural" as possible at the hospital. I was fortunate to find an OB that even though my condition was labeled "high risk" by the hospital, he made sure we could wheel in any equipment needed into a birthing room that was small and cozy rather than be forced to move me into the O.R. (which of course was still right across the hall.) I also opted to nurse all three of my children -- once again finding a team of doctors who understand my preferences was important. Sometimes I would have to take a medication ... and while many uniformed physicians find it easier to say "wean the baby" I would go back and do my research to find out if and how much of the medicine was excreeted in the breast milk. Sometimes it was a matter of regulating a dose so that I didn't nurse right afterwards (possible when you are nursing a toddler, not practical for newborns.) The Le Leche League was a big help in finding a network of doctors and pediatricians who were supportive of my efforts. Good luck to you on your adventure! EM

Good luck! Our thoughts are with you and your daughter. Out of curiosity what kind of symptoms does your daugher exhibit and how old is she? I have noticed that my 7 year old (thin frame, tall, lanky etc.) tends to have a 20-30 HR jump when she stands but otherwise she is completely asymptomatic. EM

http://libraries.claremont.edu/research/da...ect/PubMed.html Is that the abstract that you already have? Oh wait ... here's a PDF version of the whole article: http://www.mayo.edu/proceedings/2002/jun/7706a4.pdf Hope that helps. EM

Silvia, How long did they keep you standing on the tilt table test? Did they try it again with the IV and whatever that drip is they use to "force" symptoms? Sometimes it takes 10 minutes before we notice the rapid pulse. And the BP doesn't necessarily have to fall at all. Good luck and congratulations on gaining 6 years back! ;-) EM

We have such expectation about sleep that starts when we are just tiny creatures. "Good" babies sleep through the night etc. I also wake up several times during the night, but I'm not convinced this is a problem in and of itself. The worrying, the racing thoughts, the guilt, the exhaustion ... these are problems. I produced a CD last year on meditation -- it has seven 10 minute tracks on a variety of topics. One of them restoring sleep. If anyone would like to try the sleep soundtrack you are welcome to download it from my site: http://www.coolkarma.com/mp3/sleep-m.mp3 Enjoy. I hope it helps. EarthMother

My insurance covered 12 visits a year so I did a round of this in the fall. Unfortunately this was before my POTS diagnosis so I think we may have been doing a bit of stabbing around in the dark. However, the accupuncturist was the one that kept telling me that I have something with my autonomic system. Turns out he was right. One of the best things I liked were these little ahesive strips that he would place on my neck (I tend to get swollen glands with my epstein barr). One of the "side effects" I would notice for the first couple of hours ... was that I could STAND. I actually felt pretty good. Not sure why. Though my HMO doctor hypothesized that the "heat" from the strips actually caused more blood flow temporarily to my head. I also do massage therapy once a week. I think it helps my body to *remember* what goes where and helps it fine tune. Really wished my insurance would cover the massage. Or more of the accupuncture because I really do think that these avenues could be a help. I'm currently reading a book on Qi. (chi) And thinking I might start a very small Qigong practice. Qi is all about channeling energy and has been used for healing in China for centuries. Here's a quote from the book that I particularly found attractive: "Qi is free, it is everywhere, and everyone has access to it through simple methods that are easy to learn and practice. Qi can be cultivated purposefully to resolve any challenge or enhance any function." Free ... I liked that. Here's to cultivating our own Qi .... in whatever form that takes for each of us. Good thoughts, EM

Your are NOT whinning! This is real. The nausea is real. The limitations are real and it REALLY (insert explitive of your choice :-) I have a handful of things I try when the nausea is unbearable ... some work some of the time and other times nothing seems to work but time for it to pass. * Wrist bands. They sell these at the pharmacy for sea sickness ... a little sweat band with a marble inside that you position on your inner wrist. * Crackers or juice BEFORE I try and get out of bed in the morning. * Mint or Chamomile tea. * Lifesaver peppermint candy. * Very small frequent meals. Maybe even just a bite of mellon or apple every 10 minutes. * Ibuprofin. Don't know why but sometimes an Advil seems to help the nausea. Good luck. May you find moments of comfort and hidden treasures in the dark moments. EM

Welcome Sylvia! This board alone has helped me to "feel better" more than anything I've done/tried in years. I have chronic fatigue syndrome (in addition or maybe because of POTS), similar in nature to your fibro and yes all of this *does* feel scarry. My body still shakes when I've over done it. If I am working on the computer for too long (which may be 10 minutes on a bad day or 2 hours on a good day) then my arms start to tremble and the rest of me feels like I am going to collapse. When I was much younger I had high blood pressure and also did the low/no salt thing .... but now I am popping salt pills three times a day and sprinkeling all my food. Strange how life works. This site has so many wonderful suggestions. I use the full thigh high compression stockings instead of just the knee high ones and they do help especially on hard days. Sometimes I think they help because they keep my legs a bit warmer. With CFIDS and FM we go through lots of different emotions. Longing to regain our remembered health, guilty we can't do for our family and friends like we did before, uncertain what the future holds etc. For me .... I try hard not to look too far into the future. I take great pleasure in "little things" and for the occasional "good day". It's hard to stay "in the present" when we have a chronic illness ..... because after all -- we are sick and who wants to live in the NOW when the NOW is so dismal. But if you break it down to this tiny little moment, this little slice of life ... it is easier to handle. Try not to get caught up in the stories our mind tell us about how long we've been sick .... or what our next blood test might reveal ... or the bills ... or the worry ... or what will my boss say if ........ It's easy to get carried off into a mind made future. Welcome to the boards. You are among people who understand and care. EM

I've noticed this a few times in the last month as well. It is strange. The room really spins, not just dizzy "feeling" ... real spinning. I suspect this is what people call vertigo. Mine has gone away each day that it happened and it hasn't happened more than maybe 3 times in the last 5 weeks. Data, data, data. Good luck to you in your search. EM

So right Dawn! People often come up and say I wish I had your disease so that *I* can loose a few pounds. They totally don't get it. Thanks for sharing that. EM

I have the same question. My most recent "down cycle" with POTS began in August when I dropped 10-15 pounds in only a week or two. As with you it was unintentional. And despite efforts to put the weight back on (because I KNOW it makes my POTS worse when my weight is down) I have not been sucessful in putting on an ounce. However, in late December I started DDAVP (an anti-diuretic) that was listed on this web site -- I take just a tiny dose like .1 once a day -- and I am now about 2-4 pounds heavier. My doc says the DDAVP is really safe and I can stay on for some time. I figure when I get back 10 pounds I'll see about tapering back off. Thanks for asking the weight loss question, I've been wondering as well. EM

That's what I love about this board ... a chance to feel NORMAL!! The key for me is layers, layers, layers. I wear a sleeveless dress, with a long sleeve sweater and I keep a light pair of knit glove in my purse that I often don indoors!! I read something about this once ... it said something like we expend all of our "energy" trying to regulate our temperature that we deplete on of our amino acids. Actually it was this article that I read that led me to talk to my docs about POTS in the first place. Here's the quote: "In order to conserve scarce heat and thus maintain the core body temperature at the normal level, which I suspect would have a higher priority than maintaining orthostatic tolerance, the sympathetic nervous system constantly constricts the arterioles serving the skin, which happens to be the largest organ of the body. I suggest that the resulting high demand on tyrosine leaves the sympathetic nerves that are supposed to regulate the constriction of veins in the lower body with a shortage of the raw material needed to do their job, and this in turn leads to the observed orthostatic intolerance." http://www.immunesupport.com/library/showa...cle.cfm/ID/5168 EM

Good question and thanks for the tip on mother - daughter links. I have some real questions about my 7 year old daughter. She's real thin, small frame and tends to sit at the kitchen table with her knees up all the time. (Well so do I, but as I look back on these "habits" like sitting down in the shower etc. I think they stem from POTS.) I have several HR monitors etc. I may do some informal testing and then see if it warrents taking further steps.

Thanks for the warning Michelle, I'll have to read more when I am feeling REALLY REALLY good. :-) The other "odd" thing I've noticed is the propensity for herpe strains ... like chickenpox or other viruses in that family. I can't remember now if EBV is in that family or not. I had chickenpox as an adult about a dozen years ago. Some of these viruses just stay in our system and manifest in the least expected ways. EM

I often have nausea and lightheaded feelings, but twice now in the last 4 weeks or so I've had really bad vertigo or dizzy spells. I notice it first lying in bed then when I get up to use the bathroom the room is actually spinning. Real strange. Then even when I get back in bed and it seems to subside, I roll over and poof the room is spinning again. Both times it only lasted maybe half a day. It is strange indeed.

Hi Lisa, Sorry I didn't respond sooner. I have high EBV titers but I can't ever remember having a formal mono diagnosis in my life. I am however very suseptible to strep throat or other throat bugs -- though it could be post nasal drip causing throat sensitivity in some cases. In any event ... yes I have high EBV titers and POTS. EM

Get some help. Don't feel bad about asking. Each of us are different and indeed each of us go through different stages of this illness. For me, I don't stay alone if I am in a bad POTS adventure. If you don't have family around ... get some friends together and have a rotating "companion" plan. There are also temp agencies where you can hire a housekeeper for the week. Your insurance may even pick up some of the tab for a CNA (wishful thinking.) Whatever makes you feel comfortable. Don't be afraid to ask for what you need. I have the following pinned up on my bathroom mirror it was given to me by a wise woman I met who also had a chronic illness: No Blame No Guilt No Fault No Judgement No Comparing Myself To Others No Expectations NO EXCEPTIONS! Be good to yourself. And good luck getting your needs met. EM

Thank you so much for sharing such good news!!! What a way to start the new year!!! Good thoughts, EM

So so sorry for you. Do be gentle with yourself even after you start to feel better it's so important not to overdo. Follow your bodies wisdom, perhaps propping up with pillows instead of lieing flat. There is a wonderful tea I use called "breathing thyme" -- that is great for respiratory issues. Good thoughts your way. EM

Thanks everyone for such thoughtful responses. Ling: I feel for your story about the education process we go through with some doctors. One of mine recently referred to POTS as a nuissance. Nicole asked about testing for EBV and what my doctor was doing for it ... unfortunately we aren't doing anything specific to the high epstien barr titers. We don't know of any anti-virals that will work so we've kind of put this on the back burner in hopes that my body will find it's way out on it's own. Dan: I think you may have hit the nail on the head with the Synthroid dosing ... I have Hashimoto and take "full replacement" meds in an attempt to keep my own thyroid supressed. But my blood work last week came back with my TSH at .13 (range .34-5.6) so it would appear I am probably taking too much Synthroid. I'm currently at 112 mcg and will need to talk with my doc about dropping it down a tad. Hugs to everyone. EM

Answer C -- All of the above! :-) The week before my period is just ick all around. I've just recently started using progesterone cream. We'll see if that helps at all.

I told my doc about this web site and he asked me if other POTS folks also had positive tests for Epstein Barr Virus (EBV) or Thyroid Anti-bodies. I have autoimmune thyroid disease and we were trying to see if either it or the positive tests for EBV seemed to be correlated to the POTS. Searching, searching, searching. EM

I also have a hard time rebounding from anything. I like an over the counter product called ZICAM. The company is making lots of different kinds now so read the labels ... one is for allergies, one for sinus congestion and one for colds. I've only taken the one for colds .... it's just zinc that you spray into the nostrils. Some studies have shown that it can kill the cold virus. So I actually take it anytime I'm around people who are sick. I also notice that for me it works like a mild nasal decongentent. So sorry to hear about the difficult time with the doctors. Sometimes our mission is really one of education ... we preach, we teach and we hope that the seed that we plant will one day sprout and help another patient the doctor sees later when he/she has become enlightened! ;-) Good thoughts your way, EM

Ok, I'll be the guinea pig! Here's what I know so far ... the med comes in two forms 1)Nasal Spray or 2) Pill. I got both to see what I liked better. But the nasal spray had several possible side effects listed (most related to nasal irritation) and the pill listed NONE. The spray also had to be refrigerated .... So I'm taking the pill! Actually half the pill. My doc says to try the lowest dose .1 mg for a week or so and increase to .2 mg if I still do not notice any difference. The med seems to be a common drug used for bed wetting .... so they have lots of data on giving this to little kids. Apparently it is considered very safe. I'm on day three -- will keep you posted! EM