DancingLight

tearose! you brought up my favorite subject! food! i bet the latkes were yummy! 9 nights sounds good to me! how did you get started on that tradition? emily

nope, never even heard of it. what's in it? but, i do like the thought of a jewish lady sitting and drinking her mistletoe tea emily

HAPPY HANNUKAH!!!! i just wanted to wish my fellow jewish friends on this board a very blessed holiday... and that lighting the candles will remind you, if you are going through a potshole right now, that there is always light to be found in the darkness...even if it is just a teeny-tiny bit! also, has anyone noticed that there are a lot of jewish folks on this board??? hmmm....i've never met so many jewish people in my life! i'm not kidding! but, then again, i don't exactly live somewhere overflowing with a jewish population. still, it is curious to me the number of us jewish POTsies with cervical/spinal issues. guess what? time for dinner! later alligators! emily

goldiedance! i really just want to send you good wishes...and lots of strength and courage. i try to hold onto that during the potsholes. i also know how overwhelming those trips can be and all that 'doctoring'. but, hold on to the fact that you have done so many tough things so far with POTS, you can do this! although, i know we can all think of a zillion other things we would rather be doing, than using every dribble of energy we have left to go to the doctor and then recover after that! do you have anything to take on the trip that will make it less 'yucky'...i always take a book on tape or pics of my pooches! if i look at a pic of my pooch...it can make me smile pretty much no matter what! how will you be traveling there? car? plane? it is quite a trip for you, isn't it? i hope too, that the trip is worth it in the sense of answers! please update us when you can. emily p.s. will send that darn email again! warning to dinet: do not, i repeat, do not entrust me with any volunteer activities that require computer skills!

oops, did i miss something? speedy recovery from what? sorry....am all mixed up! (cajangled is it julie? ) emily

celery??!?

so, i took the slow boat to china route and mailed a check...so, now i am getting jealous of you all who have yours already! somehow i just knew with my computer genius i would mess up paypal. no worries nina, i put in plenty of extra for shipping! k? thanks again! emily

gena, that comment from the doctor is INFURIATING! (did i spell that right) grrrrr! i love word finds for the middle of the night...they don't take a lot of concentration but still distract me. and i can do them lying on my belly propped up on my elbows. klonopin is often used to help with sleep....so i do hope that it starts to give you some more consistent nights' sleep. goodnight for me too! emily

why did i have in my mind that your appt. was on a monday/today? better check my facts next time. does anyone else remember that commercial with the little kid and the chocolate chip cookies? it was for a cold medicine or something? emily

bump! i'm still trying to find you!

wsc, there are several discussions in previous posts on hair loss and menstrual stuff...if you have energy to do a 'search'. also look under the topic heading 'nicole's hormones are a mess' about supressing menstruation. i lost a ton of hair at the beginning too. i had gone off of the pill and was told that was the cause. i really don't know. it was alarming at the time as other folks have experienced! now, the crazy thing is....i feel AWFUL all of the time...but my hair and nails are as healthy as can be. my hair all came back eventually and i get complimented on my hair and nails all of the time. it is so bizarre. now, if the rest of me could just figure out how to follow that pattern! emily

Cookies: "Take two of these and call me in the morning." Have you tried that yet merrill? eating two toll house cookies to see if it makes everything 'go away'? just teasing you! anyway, bumping up this topic to see how your 'doctoring' went today (that's how my grandma would say it). guess what? off to eat dinner! i ate some gluten-free, dairy-free, egg-free, corn-free choc. chip cookies today...and guess what? they weren't toll house, that's for sure. emily

hello gena, did you try the klonopin last night? how did it go? i just wanted to let you know that i feel your pain! your desription was so good...about trying to do the meditation cds and then feeling like it just makes it all worse! that is what i do at night. then, i make it worse by getting mad at myself too that i 'can't meditate' and am not a more 'skilled meditator'...that i 'should be able to calm myself down'! sometimes, like you, when i focus on my breath it gets worse! also, i almost constantly have the sensation of a forcefully beating heart, especially when i am more symptomatic. i am not sure that i know what it feels like to NOT feel my heart pounding in my chest. i can feel it along the whole left side, middle and upper chest. sometimes it is VERY VERY strong. and it has nothing to do with the speed of my hr, which is controlled by a beta-blocker. well, i guess, at least i know it's still working! it feels like it is working so hard though! like, my poor little heart, it must be so tired! hope you got some sleep. i'm not sleeping so hot these days either. i've been up in the middle of the night doing word finds, reading the paper, you know, all that good stuff. ugh! i hate it! up at night, exhausted and good for nothing during the day! aaargh! okay, this turned in to a vent on my part. oops! sorry! later alligator! emily

amy, i know it is sooo hard to find a good doctor...but i will say that it is worth fighting for and continuing the search. it is exhausting and sometime seems easier to just let the problems go instead of see yet another dismissive doctor... from your last few posts, it sounds like you are really experiencing more than just POTS, like other folks have said. and your weight loss and such are definitely a concern. i sense from you that you need answers too...that it you don't feel right just letting this go either. is that correct? i agree with katherine about d.o.s in general. i have had a better experience with them, especially for primary care...that is what i have now. also, your cluster of symptoms...like so many of us with POTS...could be indicitive of so many different things it is impossible to say what is the actual cause. still, i am stuck on your last post about GI stuff and still think you need to rule out things like celiac...for which the weight loss, etc. are classic symptoms. we are pretty much the same age and i go through phases of not wanting to see docs too b/c it can be so demoralizing. i have seen two GI docs so far and have been completely dismissed by them. i am currently trying to get up the courage to go to another one. b/c....in the end, when i have pursued things...my instinct is usually right. you know your body the best, not us...so you have to go with your gut on whether or not to pursue your problems further. but, i know that when i read your posts i feel very concerned about you and think that there is something else going on that the doctors are missing and dismissing just b/c you are young. (not saying this to be alarming....celiac is easy to diagnose and treatable...) just my two cents...please do keep checking in and letting us know. here's hoping you find a 'good egg' for a doctor very soon... emily

tearose...you're making me laugh again! i talk to my dog like he understands me.... the sad thing is...in general...our vet gives us the most thorough, understanding care i have ever experienced. i wish the medical world would catch on. although, i can't complain one little itty bit rigth now b/c i am very blessed in that dep't...but wasn't always. our dogs are always taken seriously luckily no one's asked them if they are sure they aren't just anxious! you cracked me up on that though! emily

opus...even most mixes and stuff at the health food stores have SOMETHING in them i can't eat! we are not in a town with big health food options, so i have done a lot of looking on line. when i feel up to it i have made trips to the health food store and have found some 'treats' and other things. we also have a wegman's here with a very large 'nature's pantry' section...so my mom does most of her shopping in that part of the store, the produce section, and the meat/fish section. so that's the scoop! still, i do best sticking with the basics of lean meats, fresh veggies and fruits, rice and potatoes. calpyso...i love baked apples. i have a recipe for a gluten-free apple crisp that i will post for those who can handle the sugar but want the gluten-free, dairy-free stuff. i like having the crumble topping! but your version is healthier! emily

thanks! that should keep me out of trouble (and less hungry) for a while! if tearose was reading this, she would be asking you if you had laundry to do! emily

wow! gena and steph! i am, yet again, smiling from ear to ear! you two went above and beyond the call of duty on this one! i cannot wait to share these with my mom and see what she thinks. i am so excited....am i expressing my gratitude enough??? okay, here goes again, but i must be a computer dork for real. how did you guys find these things? i must not be searching right on google for the casein-free, gluten-free stuff. gena...i am not super-skinny anymore...i always was growing up. i have put on weight on and off during the illness, but it is still so small compared to what i eat i think. i don't know. i'm not a good judge. but when my mom shows me what she can eat in a day on weight watchers, i think i would absolutely starve! i guess you will just have to eat more pumpkin pie huh? if i found more 'splurges' on my restricted diet, i am sure i could put weight on...i feel so deprived on this diet! but, i won't anymore, now that i have my pumpkin pie recipe. that really made my day! THANKS! nap time now...already ate my snack! emily

merrill, i was going to say exactly what your cardiologis said...that the verdict is still out on CQ10. i'm glad that i was on the right track in saying that! as for running to the potty and fight or flight....i have fight or flight feelings all the time pretty much. and i find that i always feel 'clogged' up and if i don't have down time or am too 'over-stimulated' (even watching tv) i cannot go to the BR. i am like a little old lady with my routines to try to go. often, i cannot go until i have taken off my hose, showered, taken clonidine, and then, taken my ambien. it takes that much for my system to relax. and if i have an evening that isn't low-key or something (i.e. the reuninon) there is no hope of movement for me! i can't believe that i am sharing this, but hey you asked. but, when i used to get anxious before POTS...i would definitely have the opposite reaction...the running to the potty thing. hmmmm.... if julie logs on...she has a great way of explaining gut motility in relation to the parasympathetic and sympathetic nervou system. i am going to leave it to her to explain, b/c she does it so well and i will mess it up! for me, it's like i depend on the ambien to go. weird huh? i wonder if anyone else is like this... hmmmm.... hope this doesn't get lost in this thread here. guess what? i gotta go EAT some lunch! later alligator! emily

ohmygosh gena! you just made me laugh, and i needed that so much tonight. you eat 24/7 too? i am always eating you are right! feed me every 2-3 hours and i am fine. otherwise, cranky, POTsy, nauseas, etc. etc. i have been this way ever since i was born, and it hasn't changed. my mom thinks i am a bottomless pit. i drive everyone nuts b/c i eat soooo much, and don't put on the weight. i should weigh a million pounds given what i eat and my low activity level. i am glad to know there is someone else out there like me! eat, sleep, poop, pee...oops, sorry. some things never change, huh? plus, since i have so many food intolerances i eat a lot of fruits, veggies, lean meats, so it doesn't keep you feeling as full, you know? anyway, thanks to you all for brightening my day. ever have those 'flat' days. hey, what was the original topic here? i forget. well, i'm not off to eat. i'm off to sleep! emily

oh, katherine, i didn't mean what i said as a criticism...sorry if it was taken that way! tone of voice over email is so hard! sorry! i was just sort of talking it through. i completely agree with you. emily

katherine!!! what i REALLY, REALLY, REALLY want is a recipe for GLUTEN-FREE, DAIRY-FREE pumpkin pie!!! i have searched and searched for one...anyone here know how to do this????? i'm going nuts for pumpkin pie! is this even possible? even my mom can't solve this cooking puzzle! i keep thinking, honestly, with all the healthy food i eat...i should be soooo healthy! fruits, veggies, no processed food, etc. etc. well, even if i didn't feel great for my reunion, i guess at least i looked good huh? from all that healthy food. so, when i have so more energy, i suppose i oughta get out the recipes for my healthy stuff huh? my mom is the queen of healthy cooking! she really could have made a career out of cooking i think! i am so spoiled. but alas, she decided to be a sociologist instead! goodnight, emily

katherine, i think that is a good idea... it does create a little more work though i would think...i know that the cfids association suggests maybe a $25 fee a year and it really makes me stick to it b/c they remind me to pay up! they, of course, make exceptions for financial needs and you can still get the mailings and such. also, for a while, ndrf had a thing where you could charge a certain amount to your credit card automatically every month or 3 months or something like that. i liked that idea b/c even $5 every couple of months from many people adds up fast. still, i don't have a clue what goes in to creating and setting up such a thing...time, time, time, and money probably! so, i hate to even mention it! also, DINET is starting up a fund-raising committee so hopefully that will take off in 2005! i hope the bracelets are a big success as the first fund-raiser. geneva, hats off to you for posting that! every day i think...how can i help this site? how can i give more back to the cause? how can i make the world better for people with POTS? DINET is like little miracle to me every day...this amazing testament to what people can do with adversity. okay, feeling POTsy...gotta go! emily

okay, tearose, i have been reading your posts under several topics the past few days and laughing soooo hard! you might not win merrill's cookie prize for solving her puzzle...but you sure win the prize for humor this week! what kind of cookie would you like? i love your line...don't you have some laundry to do? he-he. you crack me up. yeah, for me, i gotta feel well enough to DO the laundry. hasn't happened! all the stairs and stuff! eek! anyway, thanks for keeping us smiling...potshole and all. also, briarrose...love that you are our 'research associate'...and i agree, it is good that at least that stuff is getting out there. my step-sister is like that...no POTS but her bp is like 90/60 all of the time and i think she is kind of tired and low-energy...but i don't know her very well. she has fainted a few times. well, i may not have laundry to do, but i do need to get myself something to EAT! emily

gena, did your doctor already know you had xanax when she gave you the klonopin? usually doctors kind of like you to choose one or the other drug since they are similar. amy really summed up everything well. the topic of benzos has come up many times before and people are on 'both sides' of this one. but i side with amy--use carefully, and under care of a good doctor, i think they are very safe. yes, they are addictive, but like amy, i have used this drugs on and off for many, many years and haven't increased dosage. if you really want more info before staring the klonopin, i'm sure there are 'hot' discussions you can find in old posts under 'benzodiazepenes' and 'xanax' and 'klonopin' and 'ativan'. klonopin is actually less addictive in some ways than xanax b/c it is slower acting and longer lasting. xanax acts fast and doesn't stay in your systme long. wherease klonopin doesn't act quite as quickly, but lasts longer. with xanax, people can get to the point where they feel they must take it every 4 hours or will have a panic attack and then you get in to problems of addiction and sort of this rebound effect of the drug coming out of your system. i used klonopin for sleep for a while. i have also tried xanax, klonopin, and now am using tranxene b/c it doesn't have milk protein in it. since you tolerated xanax and like it and how it helps you, you may really like the klopopin too and it may help you get through the night. like, amy said, it's been around forever. anyway, i started with a quarter of the teeniest dose and only ever made it up to 1/2 and finally 3/4. but, it really made me dizzy at first. so, take it before bed, and well, you'll be lying down already if it makes you tired and dizzy! i wouldn't take that and xanax together though! eeek! i agree with amy...when i hear her story about how much it helped her function in life...i think we make trade-offs. as you know...all drugs have risks, side effects, etc. if we are careful and mindful consumers i think we can make choices that improve our quality of life in a worthwhile way. hooray amy for sharing your story about anxiety. i used to get so anxious about stuff, and i wish someone would have said...hey it's okay, and you don't have to suffer so much. i wonder if part of it was already the POTS coming on and my overactive nervous system? i have mostly used the benzos since being sick for calming my POTS symptoms,not anxiety. hmmmm....i don't know! remember, POTS symptoms can mimic anxiety. this helps me a lot! however, i don't have panic attacks...so i don't have tips there! but, i do hope you get some relief from the klonopin. oh, and i haven't tried the dissolvable tablets. can you split them at all? i know it says not to probably. that will make the drug work faster, so that seems an advantage with a panic attack, b/c you need the relief mroe quickly. okay, gotta get some dinner! please report back! i know, i'm bossy. emily