Sunfish

i hope all goes well & is as uneventful as possible! :-)melissa

my guess is that the reading may be a combo of a super small difference & a BP machine that is then confused. but again...who knows. personally i tend to feel pretty cruddy when my systoolic & diastolic are either really close OR really far apart...go figure. an interesting conundrum for sure... :-)melissa

i have had many good docs lately....not necessarily having answers, but open & willing... that said, this definitely fits the bill for some...one in particular...that i have seen over the years... it's perhaps one of those "have to laugh to keep from crying" scenarios? :-)melissa

personally i can tolerate a small dose of non-drowsy sudafed. but i know many others cannot tolerate this. we're all so different. if you can't get through to a doc, perhaps you could talk to a pharmacist as he/she could at least look at your list of meds to factor in that issue in terms of safety. hope you're all feeling better soon! :-)melissa

in and of itself, the fee for the filing is not unusual...the court itself has a fairly hefty filing fee. i do, however, find it wrong that it's only now being sprung on you. the fees for records, however, particularly in duplicate, seem to be over the top. i would ask A LOT more questions about this. i'm coming from the perspective of someone who worked with attorneys & firms for years at my office...having to hire them for consults, litigation, etc...i realize that it's different for an individual than a business, but there's still room for questions. you should not be paying such a high amount if it solely is just for copies. there may be other things that you're not aware of but they should be able to explain... good luck...both with your decision-making & with whatever direction you decide to proceed... :-)melissa

julie- i'm so glad to hear that you're going to see the new NP & that you made the appointment with beth. also that you had a good phone call from your brother & that your plans are set for your trip to see dr. h. i know for me that no matter how bad things are i always feel better when i have a "plan" of sorts looking ahead...appointments, calls, etc....i think it just helps me feel that there is something i can be doing, ya know? i'll be curious to see how your appointment goes tomorrow...i hope it's helpful & that the wait isn't too long. :-)melissa

very very cool:-) i looked at the link you posted & while i've never studied anything of the sort specifically i had a history prof in college who had spent time at oxford (& a lot of other locales) studying ancient texts and he would slip in bits & pieces of things here & there that i always found incredibly interesting. i think the religious poetry sounds particularly interesting...i'll definitely be routing for you! :-)melissa

so sorry you're having such a frustrating time with the ride situation. i've been there & know how taxing it is - physically, emotionally, mentally, financially...you name it. one of the toughest things about my health limitations is having to depend on others so much more than i like to. other than the things that have already been mentioned, i would osuggest possibly calling your local library to see if they have any ideas or any flyers in their entryway that would be of any help...i say this b/c i have found some info on various ride programs at the library, even some supposedly "sponsored by" the very agencies i had previously been told were only for the elderly. i would also press & press with anyone who tells you there are age requirements...sometimes the original person you talk to doesn't know the "behind the scenes" rules or the possibility of exceptions. hang in there & good luck...if i come up with any other flashes of insight i'll let you know asap! :-)melissa

I have had parts of this feeling, but none of the positive "on top of the world" part. I've had it both on & off of various meds. Sorry I don't have better words of wisdom to offer, but you're definitely not alone! :-)melissa

hi - sorry to be a bit late chiming in, but just wanted to say that i've definitely had thoughts about the car accident connection. for me it was not the initial cause, but i have had certain exacerbations after accidents - on two occassions. one was pre diagnosis & one was post, and this would be expected b/c obviously any stress on the body has the definite likelihood of causing problems for one with a chronic illness. i have heard others in similar situations to mine as well as who had no problems until a car accident. good luck, :-)melissa

YES YES and YES. a couple of things that help me include: -taking my meds before getting up is a must for me. otherwise i'm really not too safe to be up & about. when i'm using an alarm this means i set two - a half hour apart from one another - and have fluids by my bed ready to drink with meds. then i either lay there half-awake for a while or doze again for a half hour or so. -DDAVP at night. the docs at vandy realized that my urine output overnight was WAY higher than norm so that i was waking up super dehydrated. this wasn't an obvious realization for me b/c of my bladder dysfunction. that is, i wasn't waking up overnight to pee, but it ended up my bladder was almost dangerously full every AM when i cathed, despite having cathed right before going to bed. the med has helped me out to some degree... that said, i still have my rougher mornings that i can't seem to pinpoint to anything in particular. the last few have been really tough, although without the above they may have been days that i was entirely stuck in bed all day. you're definitely not alone in this area... :-)melissa

congrats on your successful journey! personally i have never had a problem with flying....i have flown quite a bit my entire life (thanks to lots of frequent flyer points from dad!) and at various stages of symptoms/illness. i have had trouble at times when i had trouble sitting for the amount of time, but not any more so than i would have sitting on land at home. other than that my biggest problems have been in airports - with lines & whatnot - which i've since helped by using a wheelchair. the hydration issue is HUGE though...and i've learned not to depend on drinks provided on the plain b/c the timing isn't controllable. i always bring LOTS of my own water & gatorade b/c i had a situation once wherein i ran out & was stuck sitting on the plane needing to take meds & getting super dehydrated & having to fight for anything to drink b/c it wasn't my "turn"...even when i said it was for meds! regardless though, i actually do better flying than driving in terms of motion sickness. a bit odd, but that's the story of my life:-) anyway, congrats on your success! :-)melissa

Rose - sorry to hear that you had to hang out in the hospital for 5 days but glad to hear that you had a good visit in terms of how you were treated & getting some answers. i've had some similar admissions/stays this past year in terms of people not having a clue but being willing to listen & learn. i haven't been on levsin so can't comment on that but have been on reglan & some other meds. (i have gastroparesis & delayed GI motility from top to bottom.) i don't at all want to scare you but reglan can bring about some pretty nasty neuro side effects in the long term; it doesn't happen to everyone but is something to be aware of. i started to get them some after about 6 weeks along with some weird other symptoms (for instance i started lactating...very odd & unexpected!). the med was only helping me a bit anyway & my GI wanted to try me on zelnorm which speeds up GI motility as well (it's FDA approved for constipation but tests are in the works for the stomach as well & it has definitely helped my motility overall). now i have the reglan to use on particularly bad days & haven't had any problems with it as a extra boost. welcome home & back...enjoy being back in your own bed!! :-)melissa p.s. that is WAY cool that the OT brought you a computer to use!

logically speaking, it would seem to me that if one had a tendency toward vericose veins & also had problems with blood pooling or visa versa, either could make the other worse. as a general rule though vericose veins aren't an automatic with blood pooling...i personally have pretty significant/ visably noticible pooling & no vericose veins....& have had the pooling for years. good luck, :-)melissa

Nina - About "the good": so glad that you were for the most part able to have a good vacation. I remember the pure elation i felt after graduation from undergrad when i was able to read books of my own choosing...it was so grand. About "the not-so-good": i don't know a thing about lupron, but i'll hope that it's the culprit for you as at least it would/will be an answer. sorry that your migraine is still putting up such a fight & i hope it abates soon. i know that i too am amazed by how badly people are doing sometimes when they post as i often am lucky if i can just browse when i'm at my worse...luckily cognitive issues aren't the first to go for me (as long as i'm flat!) but when i've had to be off all of my meds & at other bad times this past year i could hardly string a sentence together, much less type anything...i actually gave my mother her mother's day card not even signed b/c i was too out of it at the time to do so...pretty pathetic, eh? i hope you're able to get some answers & that you're back to your feeling better self again soon, particularly with summer session grad school on the horizon. it was reassuring to hear that the med alert bracelet had a use other than hospital-based too...i never would have thought of that... hang in there... :-)melissa

p - i feel like i could say "me too" to your post. i think you articulated what so many of us on here feel about the forum & others. the power of support & understanding - whether direct feedback or just reading things that make one realize that there are others out there that "get it" - is so incredible. just curious (and possibly i've missed this in earlier posts...sorry!), what specifically are you studying at oxford come fall/autumn? hope you're having better days again...i still smile thinking about your graduation post! :-)melissa

the link nina gave is definitely a "must read". i just wanted to add though that even those with the same or similar diagnoses have incredibly varied reactions in terms of treatments, time to take effect, foods that help/hurt, etc....there are definitely things that help more people than not, and things that tend to work more quickly than other things, but there is definitely nothing steadfast that is for sure for everyone at all times. good luck figuring out what works best for you & your body.... :-)melissa

julia - i'm a bit slow in the response as i've been in a bit (er...a lot) of an overwhelmed state myself the past few days, but i just wanted to send a hug your way & to say that i can relate to a lot of what you voice. obviously our situations are all different, but the desperation of getting thrown around by the health system & doctors & hospitals - not to mention our own bodies - is something that most, if not all, of us can get to at least a degree. and when i read your description of the feeling so overwhelmed that you don't know where to even start in trying to explain, sort through things, etc....i had tears in my eyes b/c i can so feel that feeling. and then the mind games of feeling like there are people dealing with bigger things...like others have said, anything that's big to you is big, ya know? of course having perspective is good & useful in its place, but not if it means you're pushing your own feelings & realities & issues under a rug. i did that for years in my "past life" and it definitely did nothing but cause major problems. i'm glad you were able to lay low today & hope that you're able to get some phone contact with folks tomorrow. keep on keepin on... :-)melissa

Jessica - sorry to be a bit late, but just wanted to send hugs & warm thoughts & prayers your way - both for the little guy & for yourself & the rest of the family. i do hope that you're able to get the help & support you need & am glad to hear that the hospital folks made the tough situation as good as it could be. and so glad to hear that things are on the up & up. all the best, :-)melissa

Hi Amy - Just wanted to add my welcome. Sorry that you've had such a long road to diagnosis & proper treatment, but glad that you're finally heading in the right direction & that you found the forum. you'll find lots of great info & support on the site - both the main page & the forum. chime in as you're able & we'll look forward to getting to know you. hang in there! :-)melissa

just another variant of a "me too" to add....for me chest pain isn't a daily or frequent thing, but i have had some pretty severe bouts, largely when my heart rate has been low. several years ago it was the worst ever to the point of dr. grubb sending me to the ER; ended up my HR was in the 30s & i was on a cardiac unit for several days. at that point it was seemingly that my heart was having to work too hard in a way which was thus causing the pain. it's never been as bad since in terms of chest pain but when it happens my HR is always on the lower side rather than the POTSy high HR that happens on a more regular basis. FYI, chest pain was something i was asked about on a regular basis while i was at Vanderbilt (on the daily questionaires for the med trials). they wouldn't have been asking if it's not a common thing. unfortunately not an answer, but you're definitely not alone. hope you're back to having some better days soon! :-)melissa

mindy - congrats on the diagnosis. i know that it isn't a magic answer, but also know what a relief it can be to have a name in terms of moving forward. as someone who has had lots of issues with nausea/vomiting in the past year, i'm curious as to what the diagnosis of CVS was/is based on? i know the symptom patterns, but is there any specific testing other than ruling other things out? such as if one has gastroparesis does that negate the possibility of CVS? just curious! hope your new plan gets things headed in a better direction for you.... :-)melissa

heya em - glad to hear that you had a better time being back on the allegra...sorry that you have a battle ahead with the MA, but i'm thinking it's still better than having no idea what brought on the symptoms. i too agree that it might be worth a try with the regular claritin (versus reditabs) just b/c of the "fast-acting" nature, but who knows. as is evidenced by different folks responses on this thread - we're all so different. benedryl knocks me out for instance, but doesn't cause any bad symptoms. i can tolerate claritin, clarinex, & allegra okay too....it's probably the one family of meds that haven't sent my body in a tailspin at one time or another. there are other meds, though, that over the years docs have "guaranteed" me wouldn't cause problems. yeah right. i've had wacky reactions from kids' doses of supposedly benign stuff. anyone can react to anything, and us special folk are even more likely. so...you're definitely not nuts...at least not as far as the claritin goes:-) i hope the MA fight isn't too bad...is there an official way to bypass the 30 day thing? by having the doc say you had a reaction? or if not perhaps you could get samples to last you for 30 days? hope your better rest is continuing... :-)melissa

heya em - glad to hear that you had a better time being back on the allegra...sorry that you have a battle ahead with the MA, but i'm thinking it's still better than having no idea what brought on the symptoms. i too agree that it might be worth a try with the regular claritin (versus reditabs) just b/c of the "fast-acting" nature, but who knows. as is evidenced by different folks responses on this thread - we're all so different. benedryl knocks me out for instance, but doesn't cause any bad symptoms. i can tolerate claritin, clarinex, & allegra okay too....it's probably the one family of meds that haven't sent my body in a tailspin at one time or another. there are other meds, though, that over the years docs have "guaranteed" me wouldn't cause problems. yeah right. i've had wacky reactions from kids' doses of supposedly benign stuff. anyone can react to anything, and us special folk are even more likely. so...you're definitely not nuts...at least not as far as the claritin goes:-) i hope the MA fight isn't too bad...is there an official way to bypass the 30 day thing? by having the doc say you had a reaction? or if not perhaps you could get samples to last you for 30 days? hope your better rest is continuing... :-)melissa

Ballroom - Welcome! Sorry you have to be here but glad you found the forum....I too had gradual/ progressively worse fainting that got me a diagnosis around your age - I'm now 25 - and can definitely relate to the difficulty of trying to remain upright while at the same time making it through school. There's a lot of great info on the site - both from the main page & on the forum - so look around as you're able & join in. Looking forward to getting to know you... Hang in there! :-)melissa