Lulu

no way will i get another one, even tho dr g *really* recommends it for me. i got flu horrible 2 yrs ago w/o shot, so i relented and got the shot that fall. i became immediately sick for 3-4 days, just your basic POTS aggravation, and then in a few months i got the flu anyway! (a different strain than the one i had been immunized for). so last year i didn't get it--the shot OR the flu: however, i was a FIEND about washing my hands (even more so than most nursing students) with ANY contact with ANYONE did lots of Lysol spraying of doorknobs, light switchplates, phone receivers, blanket and towel washing and maintained my vitamins. maybe i was just lucky? or maybe those tactics worked well enough for me? i still ended up really sick at the turn of the year well into may, but it wasn't flu. :shrugs shoulders: probably a good thing i didn't get both...ack! i think it's really a personal choice and it is good to give your doc a listen it it's recommended for you. i'm glad that so many have found the shot staves of the flu for them. it is horrible to get it on top of POTS. healthy days, everyone! lulu

nina, i am so sorry for your loss! please know you are wish strength, comfor and peace in your time of sorrow. i hope you are cheered by all your many warm memories of jeri. they are our family. please know you are in my thoughts. peace, lulu (school is leaving little time for being active here, sorry i'm late in posting)

Hello, BeStill, I am so sorry to hear about the way this turned out!! Of course I still remember you. I wish there was something that could be said to make it better, perhaps the only thing is that you're not alone. I wish you strength and peace, and happier, brighter days ahead. I am glad to hear the gluten-free diet is working and that your son saw dr g! Take care, (HUGS) Lulu

hey dizz, i don't think you're looney, but look who's talking! LOL i've had breast pain and what my doc thinks is "fibroid" type lumps. he wants me to have a mammogram and when i tell him all the sxs i have w/ my periods and how it's terrible, he says he wants to do a hysterectomy!! (maybe he figures if i haven't got the stuff, i'll quit bugging him w/problems?) i talked w/beverly @ dr. g's office about this and she thought i needed a 2nd opinion, gave me names of a couple docs/nurse practitioners familiar w/ dysautonomia. i am thinking some of this stuff has *GOT* to be related, w/ all of the posts by women who have female problems of one kind or another. but i've never had anyone "confirm or deny" just say they seem related. i hope maybe some folks here have better answers? but you're not alone with weird sxs, that's for sure! i hope you feel better and get some answers! lulu

goodness, linda! (hugs) but not too hard to squeeze your chest when i had bad chest pain like that, the cardio actually dxd me w/ GERD and gave me protonix, which i eventually had to take 2ce/day. now i take nexium, same stuff basically, cuz of insurance. the GERD dx was confirmed later with an endoscopy, they found acid all the way up to the back of my throat and extensive scarring. sometimes i get chest pain from anxiety...being warm and doing whatever to relax generally helps in those cases. i hope you feel better soon and find something to help relieve the pain! it is NO FUN, that's for sure! you hang in there, girl! love and ((HUGS)) lulu

hi, kim! chiming in a bit late (as usual) but just wanted to say "hang in there!" and "you're not alone!" i've been almost continuously in school my entire life in one way or another, & it's almost always been accompanied by at least part time work and a couple volunteer jobs. (i've listed my saga below, if anyone could possibly care...i can honestly say i've gotten as much "crap" for being "in school so long" as i've gotten for "being sick all the time." some ppl, including family, just don't get either one.) i've really noticed those big blanks in thinking a lot, especially after my concussion this summer. & some subjects are more difficult than others. i also talked to my school up front & have talked w/the ADA rep at my school. (nursing school: they eat their young is all i'll say) i would agree with all the advice here....school is important, it is such a good feeling to achieve your goals! but your health is #1...so take care of yourself and get help where you can! [my sordid life as a scholar & semi-productive member of society: initially in my 20's, i had many incompletes as an undergrad (full time student, working, etc), later had to drop out of grad school for a year even after having cut back to part-time (again working full-time plus), then finished grad going PT w/ a few more incompletes, and after grad school continued going part time while working FT. then illness worsened, dropped work to PT & then decided to change careers>>so went back full time, plus work, got more sick>> then went to PT school & PT work, now "just" PT school. (i told you it was a saga)] kim, you can do it! best wishes for your success and good health, lulu

oh, dionna! i'm sorry i'm chiming in late, & i'm so sorry to hear of your unsupportive & very stressful situation!! ((HUGS)) i know there are resources out there for you and i hope you get hooked up w/good help soon! i wonder how much of your sxs are due to your stressful environment? ack! and it's your family? double ack! at least you seem to know the score...some ppl go their whole lives and never see how their family is hurting/has hurt them. not that it makes it any easier, but you are aware of what you need and have some ideas how to get it. those are good steps, and you are a strong person. please keep us posted...you are in my thoughts and wished strength and continued courage! hang in there! and remember we're all here for you! more (hugs) lulu

hi, amy, sorry you're feeling icky w/ a cold....it's so frustrating!! each time i get sick (again) even something small, i freak out that i'm going to get "really bad" again! usually it passes w/i weeks, (tho never as fast as i want it to!) it's enough to make ya crazy! i hope you feel better soon and are not too hard on yourself. give yourself some TLC and know you're not alone! (hugs) lulu

Hi, i would agree w/ spike that it is often more the doctor than their "department." i was initially dxd w/NCS by a cardio who started me on toprol, which worked well for some time. after a few years, symptoms worsened, i was dxd by an EP w/ POTS. i am lucky to have a great PCP who is on board w/learning new things and working w/my EP, who is 2 hrs away. the neuro i was referred to said he didn't think it was possible for me to be passing out as many times a day as i "claimed to be." yeah, right. and in b/w getting sick & getting a solid dx, there were many wrong dxs, let downs, bad meds, frustrations... i know how frustrating it is to go to a doc w/ the expectation of "finally!" and then there's a big let down and you don't know what to do. i would guess a lot of us have been there. best of luck to you! i hope you find some answers... take care, lulu

miriam, i am sorry to hear when any of us has something else to deal w/ on top of POTS! i wish you strength and health as you go thru this! i had a friend who was in the prime of life (good health, late 20's) who had exactly what you've been dxd w/. it was not brought on by drinking alcohol. i do not remember his treatment specifically, but it was successful. i hope your treatment is also successful. again, best wishes for good health! take care! lulu

hi, willows, the vitamins i take everyday contain L. acidophilus and i have found it very helpful indeed. even more beneficial has been increased fiber in my diet and supplementing the fiber when i can, but only with bulk fiber, never stimulants, etc, b/c the body can become dependent on them. i read where you take pain medication, that can be extremely hard on your insides & it's even more important & difficult in that situation to ahem, keep regular. it can be difficult for me to remember to take fiber supplements, b/c they can't be taken w/i 2 hrs either side of taking medication....some days, it's like, "okay, what time would that be?" lol i'd be wary of anything purporting to be a "cure-all," and to be careful not to get overrun w/friendly bacteria, which can also be a problem...but it sounds like you know what symptoms to look for there. i wish you good luck with it and would again encourage anyone with constipation or pains to look at the fiber amounts in their diet, increasing natural fiber has been crucial for me in bettering my health, along w/ the vitamins. best wishes, willows! keep us posted. take care, lulu

i'm so terribly sorry for your loss. i wish you comfort, peace, faith and strength, especially during this difficult time. you are in my thoughts. ((((HUGS)))) lulu

hi, amby (((((((BIG HUGS))))))) sigh. what a bittersweet situation! i know how you feel, many of us here do. *you are not alone!!* i am glad you got the medication, that was what i was started out on years and years ago & it worked great for me for some time. i got it after a (+) TTT, tho. maybe you can request one?? i do hope the med works for you and you see a difference! i also hope your insurance picks it up! $$ is such a stressor on top of all this! it's sssoooooooooooo frustrating not to have clear answers, tho for many of us, even once we knew we had a form of dyautonomia, it was just the *beginning* of the unclear answers! lol i wish there was something we could do to bring your hubby around, some ppl just don't get it, but that doesn't make it less real or less hurting for you....i'm sure you'll be in our thoughts and prayers, you continue to be in mine! dionna's right, things will work out! remember to have faith, especially in yourself--you're not going crazy!--and be patient, even tho it's SO HARD to do. you have support here! hang in there, amby!! :) love and (((((SUPER GREAT BIG HUGS))) that go all the way to AZ from OH lulu :)

your daughter and your family our in my thoughts. please keep us posted!

i'll second that , persephone. CBT has also helped me as a patient and has helped many of my patients when i was a counselor. i don't think anyone has said it was a cure all. & it's not anything that would hurt someone to try. therapy of any kind is always a challenge to grow from, if you're ready for it. persephone, good for you for trying CBT, that is very brave, and for finding you're benefiting from it and sharing that with the forum. you have my continued support and admiration!

i'm from Ohio, too! born and raised in north central ohio, about an hour north of columbus, lived in bowling green (wood county) for about 12 years (i began having debilitating symptoms there, dx in toledo for NCS) moved back to my hometown, dx'd a few years later w/ POTS by dr. grubb. this is really strange that so many of us are from Ohio. i too, know of at least a dozen other ppl (my sister, among them, was recently dxd w/ NCS, she lives in columbus area; mother has had POTS sxs for years, she's not dxd) with autonomic dysfunction, all from OH or strong connections to it. i've also heard about the high MS rate in the midwest, specifically OH, but didn't know if it was true or not. wow, this is freaky. it certainly makes one wonder! peace, lulu

welcome to the forum! i'm seconding what others have posted, but wanted to extend my support and sympathy to you....especially to say that your son is lucky to have you on his side, rooting for him! & i also had dozens of incorrect dxs over a period of years! you're not alone in your frustrations, if it is any comfort at all. it must be devastating to watch him go through this and not be able to get him the help he really needs. i wish you all speed in getting proper care for your son and i wish him good health and bright days! best of luck and good wishes to you and your family! lulu

Hi, Lauren, Chiming in late here but wanted to express my sympathy for your situation! <shakes head> good grief! ppl can be so mean!!! how awful!! i am so glad you are "mostly" OK! i personally believe we are living in a Society of Non-Accountability sometimes....it seems no one has to be responsible for the consequences of their actions, or wants to be....they can just fly off the handle as they please! it also seems to me some ppl are "addicted" to rage. it's a personality defect, a lack of moral fiber, and *definitely* mentally unbalanced! it is a shame that anyone has to be the victim of such behavior (and worse) but especially when unprovoked and arising from true need on the part of ppl like us who NEED the parking space, the wheelchair, the extra time....... i mean really, would it have killed the guy to show some courtesy? or anyone for that matter! ??? again, i am glad you've held up through the experience "pretty much" OK. (hugs) lulu

i recently began exercising again (before a POTS hole last week). here is how i began exerecising after not having done so for a really really long time & what i found works well for me: i have a treadmill that keeps track of my HR. i know a lot of ppl dislike using treadmills, but it was a good compromise for me because i can walk whenever (middle of the night if i wanted to!) and be in my home if i start feeling faint, POTSy, or whatever. (Then i'm not in the middle of nowhere with no way back to safety). there's a pull-tab like thing that stops the treadmill immediately if removed from its base, so that is another good safety measure for me. and when i first started, even though i was going S-L-O-W i had someone in the house who could help me if i got in trouble. i also wear very very loose light clothing so i don't overheat and have a fan blowing on me during. and afterward, i get into a cool shower to help vasoconstrict and lower my HR. i drink a little bit of gatorade before, too. (it's watered-down for me b/c i have the hyperadrenergic type of POTS, which means really high BP & HR w/o meds). i drink a lot of fluids after showering. my HR before beginning was generally in the low 60's, and would go to 130's/140's during, and starts dropping after. i generally feel totally normal after my shower. i have even experienced the "exercise high" (which freaked me out the first time it happened! ). i would generally have better days when i exercised and felt good. of course these are just my numbers....i would expect everyone is different. and i would caution everyone to *be careful, start slow, talk to your doc and have a buddy w/ya* good luck!! lulu

welcome, quiet spike! thanks for sharing your story i hope you continue to find answers and support here on the forum. and of course, i wish you and everyone good health and bright days! lulu

Hi, Tammy i get adrenalin rushes and i *also* get panic attacks on occasion. there's a whole set of criteria for what constitutes a panic attack according to the DSM [the Diagnostic and Statistical Manual of Mental Disorders] (the "manual" that docs and psychologists and other folks use to dx certain types of illness) and many of the symptoms are the same as what happens to some (many?) of us with dysautonomia when we're "surging." i would list them, but i think it's dangerous & irresponsible to do so, because the symptoms can be nearly identical. what you really need to know is that the real difference is whether or not you are experiencing a feeling of overwhelming anxiety, what the DSM calls a "discrete period of fear." the big difference is uncontrollable, bothersome fear. i personally think it has more to do with whether or not you have a predisposition for anxiety, that is whether you experience symptoms as "just" surges or if you interpret them as "panic worthy." that is just my opinion...i would caution you that although i am (was) a mental health counselor, i am NOT a doc & if you think you're having panic attacks, you & a good doc are the best judges of whether or not you actually are. feel free to PM me if you have more questions about it, tho. best of luck!! lulu

hope you recover from surgery just fine and that the pacer helps you feel better!! good luck and take care! lulu

hello, lisa! i have had big time sleep problems my entire life; it is super-cruddy! ugh. you have my sympathy! dr. g also rx'd rozerem for me and i have used it w/ varying results. mostly it does not work all that great for me. it helps me fall asleep but after a few hours i wake up. (maybe i should find out if i can take it again??) i also have very strange, sometimes disturbing dreams when i take it. other than that, no side effects. there *have* been some times when i have gotten a full night's rest w/it. i don't know why i get varying results, probably something to do with if i'm surging w/ adrenalin or just dysautonomia in general?? sometimes it does work great. i wanted to try it (and am trying it again recently...) because it doesn't demonstrate addictive properties in clinical studies. (at least the studies so far ). i do generally get good results w/ klonopin, but sometimes i have to take stuff in addition to that and i know it's not really safe to do that, but i get desperate for sleep! good luck with it, if you decide to go with it and sweet dreams no matter what you decide!! lulu

just another message here to say "way to go!" and so happy you're on the mend. Here's to a great school year! (and no more ear ouchies!) peace, lulu

Hi, folks, I see some people know about this, but just thought I would post it. I was a big fan of Steve Irwin's; he had such a passion for life and for animals. He was an inspiration to many. I am stunned and sad. My heart goes out to his family and to all that are suffering from his passing. What a loss for the world.... http://news.bbc.co.uk/2/hi/asia-pacific/5311298.stm