Sunfish

yep...sorry to say that i've "been there, done that." i'm impressed that you were able to write things out to the degree you were in the midst of it. hope you're feeling better today....i always am so "crashed" after a spell of that sort. :-)melissa

p- i agree that you should get this looked into further, and will affirm that an EP doesn't equal an ablation...especially since you're going into it armed & ready with info. if you end up with an ablation-happy EP, run away and find another. i know that findind a good doc is easier said than done (don't we all?) but i'd say you're right to pursue the cardio side at this point. in terms of the bradycardia, it does seem to be the opposite of POTS on one hand, but it's still the same autonomic nervous system controlling it all and perhaps being out of whack. often those with NCS have low HRs...i have POTS & NCS & other miscellaneous fun & while these days high HRs are what i have more regularly, if i try to keep standing my HR will eventually plummet & i'll be on the floor. and in the past i have had times of constant/persistant low HRs. in particular i had one spell in 2002 in which my HR wouldn't come up out of the low 30s...it was right after a bug of sorts and was horrible. it also gave me a lot of chest pain as you've described at times & bought me just under a week on an EP floor of the hospital. hope you're able to get things checked out soon. hang in there, :-)melissa

Dayna - good luck with your new avenues of exploration. personally i've only seen nutritionists in the hospital & one time in which i was not impressed (she was telling me to stop meds & giving me medical info which i knew was false, not to mention not her place to be giving). now that my stomach/GI tract is a bit more back to normal i'm definitely considering thinking more about my nutritional intake; i'm pretty balanced but am enjoying the freedom from Boosts & Ensures a bit too much perhaps these days! when i have been on various vitamins though from docs they've wrecked havoc on my GI tract...i'll be curious to see if you do okay with them? also...do you start them all at once? i'm just wondering b/c am curious as to how one would know what part of the combo is or isn't doing any good. i know that often it's the "mix" that does it - i have some meds like that - but 16 just seems like a lot to keep track of. i'm also intrigued by the chiropractic neuro...is he actually an MD doc? i tend to have a lot of respect for professions who are trying to meld the more traditional & alternative worlds. definitely let us know how things go.... good luck! :-)melissa

Sophia - i'm so sorry for your loss. the ANS can definitely be affected by emotions, so try to take care of yourself as best you can during this tough time. some with NCS/fainting can even faint from crying or other high emotions. for me i tend to feel the strain more in the aftermath...for instance i'm pretty darn good symptom-wise during the really high stress/emotion time, be it an emergency-type crises or extreme tears or grief, but then i tend to "crash" soon after. as i'm sure you know, the ANS is at the crux of "fight or flight" and while the description tends toward an emergency/crisis type of trauma, emotional trauma can wreck the same havoc on one's body & cause the same stressors on the ANS. and yep, depending on what exactly is going on with the emotions, they could easily bring on a type of valsalva response too. it's not the magic answer, but do your best to stay super hydrated & salted too as those tears will add up in terms of hydration. i had a teary day yesterday for various reasons & could feel it big time at the end of the day. hang in there. my thoughts & prayers are with you & your family. love & hugs, melissa

Until this past year, I'd been able to work...sort of. In 2002 there were a good 5-6 months when I couldn't attend classes, spent a month in the hospital, & had to quit my part-time jobs, but somehow I managed to crank out enough papers on my laptop to stay in school; if I'd been in the "real world" of work at the time I would have been out of work for certain. Since starting work in June 2002 after graduation it's been a very up & down sort of thing. I'm thankful to have been able to work but for the first year or so I pretty much couldn't do anything else. And I had to lay down during my lunch hour under my desk in order to make it through the day. I was determined to make it work & don't regret doing so, but am at a different place now in terms of realizing my limitations. I spent 6 weeks on leave in 2003 when I had neck surgery but the big kicker came this year. After trying to get back to work after I was hospitalized in November, I've been out on LTD since being in the hospital over new years. I know that I couldn't not be working in my full-time, not flexible office setting now. I was too sick until about a month ago to even think much about it, but now that I'm able to try to do a few things out & about - even if it means with a wheelchair - the whole thing is playing mind games with me more in terms of the guilt factor. Like if I have a decent day I'll think "could I have worked today?" And the reality is that perhaps I could now...for a day. And for that I'm super thankful. But it would be for a day & then I'd be back in bed. I will say that being on LTD has probably helped my mentality....the fact that my not working is "approved" helps me realize that I can't be working right now. I know that there are plenty of folks unable to work who don't have any benefits & my heart goes out to you all, but it's just helped me a bit in terms of my mindset/ reassuring myself. I'm hoping to try for school in the fall b/c it will be a lot less confined than my work environment. I can go to a few classes & do actual work while laying down. But even this is scary as I have no clue how it's going to go. My mom would be much happier if I were to wait another year, hoping I'll be better, but we don't know that...objectively speaking, there's just as good a chance that I'll be worse, so personally I have to at least give the school thing a shot. But it's scary. And it is hard to know how far to push. In terms of work and so much else. And if being "able" to work means that there can be absolutely nothing else in one's life that seems pretty rotten to me too...no matter how great a job. My ramblings are now only sort of tied in to the original question, but yes...I've struggled with the guilt thing. I ran into someone from my office the other day when I was at the mall - in a wheelchair - and afterward my mind was playing horrible games with me in terms of "what must they think that i'm at the mall but can't work"? Of course objectively I know that an hour at the mall in a wheelchair is not the same as full-time work, but I can easily get going down that path if I allow myself to. and now the ramblings will stop before I get even further from where I began.... :-)melissa

Hi Traci - welcome! sorry that you have things going on health-wise to bring you here but glad you found the forum. there's a lot of great info & great people to go with it. i've had some of the symptoms you describe & have heard all of them described by at least someone else at some point. diagnosis is really tough as a lot of symptoms overlap between different disorders. it's great that your doc is pursuing getting you in to see an autonomic specialist. do you know who you will be seeing? and i know others have asked already, but i'm curious to know if you have had a tilt table test yet? good luck & let us know how things go with the new doc... :-)melissa

future- thanks for the update. i've actually always had lots of fluids during & after inpatient surgeries...and have ended up with them after other things (i.e.endoscopy, colonoscopy) once things have started to go haywire...it totally makes sense to me that this should be standard practice for folks like us, but i guess there's lots that doesn't make sense out there! i'm hoping there's no more surgery in the works for me but know b/c of my GI issues i'll at least have to deal with scopes of all variety periodically for life so will be curious to see what dr. k & dr. s recommend for that type of thing. was your appointment with dr. k a good one overall? i see him myself this coming week...the first time since my vandy visit & since all the endocrinology testing/meds and the last time before i move, so there's going to be lots to discuss...lucky him:-) :-)melissa

Julie - go you!! i'm so very impressed...with the fact that you got a response (and that it was genuine) but even more so with your going through the process of the complaint and all. there are times i definitely should have done this and haven't. you're setting a grand example for us all. congrats, :-)melissa p.s. maybe i should save my MCO mug...might be worth something someday:-) not that they care about my thoughts on the matter, but the place will always be MCO in my book...

Icthus- welcome! sorry that you seem to share in with the symptoms many of us have but glad you found the forum...it's a great place with tons of good info & great people too! i too think it's great that you have an actual report clearing your mental health to carry around, and even better that it has been effective for you. (unfortunately i've had some docs in the past who didn't care that the psych folk said i was in grand shape so they would probably have even dismissed that!) regarding the leg instability, i too have wobbliness/shakiness at times, particularly if i try to get up after sitting still for awhile. generally speaking i wiggle & move around a lot while sitting (or doing anything) as it seems to help me. i actually end up with completely numb feet & lower legs at times...sort of like when they "fall asleep" except for i haven't been sitting on them & they don't have the pins & needles. but i digress...so....moving around before standing helps me. so do compression hose that others have mentioned, waist high (if you do a search you should find a number of discussions on the hose). and yet there are times when i'm just shakey/wobbly in general. it's often my whole body then but is more noticable in my legs. i also seem to be better in this regard since starting on mestinon in may...of course i don't know if this is a direct result of the med or not, but i'll take what i can get.i haven't noticed a progression over time (in terms of my legs) but rather lots of ups & downs. again, welcome! :-)melissa

so glad to hear from many of you & of course hoping & praying that all others are safe...i have family in & around london who thankfully are all okay as well. it never ceases to amaze me what a small world the internet allows... :-)melissa

i haven't had shingles, but aside from when my POTS/NCS was almost in complete hibernation (those were the days ), i have not had a virus or any type of bug that hasn't set off my autonomic craziness to at least some degree...the degrees have varied greatly, and not always in proportion with the severity of the bug i'm fighting off, but shingles is generally tough for anyone so i would expect it to be even tougher for someone with POTS. having had several friends, family members, & the like who have had shingles, though, it's also good to know that there is a really wide range of how shingles "hits" people...everything from not bad at all to really ill... here's hoping your friend gets by with an "easier" case of it... :-)melissa

hayley - glad to hear that you found something that's helping you & that you feel good about your plan moving forward. i do find it a bit odd though that your doc says higher BP means meds aren't an option. like katherine said, there are various meds that don't raise BP at all, or even lower it. (they can be short-acting, so that they wouldn't lower it at night.) it is true though that it's "normal" to have a lower BP at night during the day; it may vary by how much lower from person to person, but most folks - with or without dysautonomia - have lower BPs at night. i know mine gets really low...i've had nurses wake me up in the middle of the night in hospitals b/c my readings were so low they were worried about me...talk about annoying! regarding the meds though, if you're getting relief without meds, i'd say keep doing what you're doing... hope things continue to go well for you! :-)melissa

welcome (jo or joal?) - sorry you have reason to be here but glad you found the forum. there's lots of good info & people here. you may want to do searches on neck pain &/or tremors/shakes as there has been a lot of discussion on both in the past. as such, there are at least some on here who have had or do have neck &/or tremor issues. they're not the baseline symptoms & thus are always good to at least have checked out by a doc, but they are a part of the picture for some of us. i had major neck issues 2 years ago but it was the result of a blackout/fall; i had surgery & for the most part am good to go in that arena now. i do get "neckaches" though which were par for the course for me & unrelated to the neck injury. it's essentially a headache at the base of my head/ top of my neck & is thought by some to be caused by bloodflow issues to the head. i also get shakes/tremors at times - almost always after i blackout & at other times when i'm really struggling/ not doing well overall health-wise; often they accompany really low BPs for me. i saw your inquiry other another post about doctors in the south. you may want to look at the physician list on the site http://www.dinet.org/physicians.htm i don't know what area of the south you're in, but i recently got back from a few weeks inpatient at vanderbilt and had a positive experience. there are options there both at the outpatient clinic &/or as a research inpatient. good luck, :-)melissa

not sure how i missed chiming in on this one as it is pretty much the "story of my life"...i like the already-used roller-coaster analogy...for me it applies over years, months, days, hours, minutes....LOTS of ups & downs (literally & figuratively!) currently i do have symptoms every day & every time i try to stand for more than a few minutes, but they vary greatly in their degree. whether i have symptoms sitting & how long it takes is sometimes yes, sometimes no. at times when i've been doing well...a year or so ago...i know that i would eventually be symptomatic but the amount of time it would take had a large variance. many years ago when i had NCS but not POTS i would be totally fine on many many days. and yes, i agree that this makes the diagnosis & treatment of everything even tougher. sadly enough i've had a much easier time (in terms of docs, etc.)of it this year & at other times when i've been more ill b/c of the fact that my signs/symptoms were/are a constant thing. outside of the medical community the ups & downs of everything also makes things tough with family, friends, life in general. i have such a hard time planning anything b/c i never know how i'll be on a given day, at a given time, etc. some things are guarantees to make me worse but often i have no clue why it's a better or worse day for me. any of the autonomic docs i've seen over the years have affirmed this as the "norm" in the autonomic world... i've often said that in some ways i would have an easier time dealing with a more "permanant" impairment that was more consistent. not to minimize the difficulty of such a loss at all, but just b/c i would know more what i was dealing with & could move forward as such...the variability is one of the toughest things for me. :-)melissa

generally speaking i have not had problems with antibiotics. i had a reaction to one once but it didn't have anything to do with my autonomic issues. sometimes i have a bit of GI upset but nothing prohibative or too bad. for the most part the greater problems with POTS, NCS, etc. will come from the being sick itself. this tends to be a major trigger for me & many (if not all) others. so generally - barring any bad luck with the antibiotic itself - treating what needs to be treated will get you headed in a much better direction. hydration is also something really important to stay on top of with any infection...true for anyone but more so for those with underlying issues already. hope you're feeling better soon! :-)melissa

briar - not meaning to beat a dead horse into the ground, but i agree with you that tone is hard to "read" on the internet. i don't think (nor did i think) that either one of us meant anything but good in our posts...i'm just the type of person that tends to put everything out there...the good & the bad, etc...i do recall the posts/discussions from awhile back too...and i do wish (as i'm sure many of us do) that these sorts of things were easier to make happen &/or that our bodies & lives were such that we had more ability to make them happen, ya know? if only i had some harry potter like abilities... nina - thanks for the clear outline of what the steps are in terms of fundraising. i knew most of what you listed in a general sense but it's helpful to have it written out in an organized fashion... :-)melissa

ling - so glad to hear that your experience was a good one...isn't it a shame that this is a surprise for us rather than the norm? hope your recovery continues to go smoothly... :-)melissa

sue- glad to hear that your son is safely back... :-)melissa

thanks Nina...much more useful than my link in the other post! :-)melissa

i too have experienced this feeling, particularly when my insomnia was REALLY bad post gall-bladder surgery. it's almost a "manic" type thing in a physical sense. and it's something that is documented in the medical literature in terms of sleep deprivation at times bringing on a manic-type state. i know that's the extreme, but just thought i'd throw it out there. of course there's then the question of what comes first...the hyperactivity/ "on" feeling or the lack of sleep. it can go either way & easily become a cycle. poor nutrition & weight loss can also make it worse...making one jumpy while at the same time with no "real" energy. i was having this a lot prior to my vandy trip as my intake was horrible. now i still have the hyper-alert issue at times during the night when i wake or when i'm trying to sleep but don't have it during the day; at earlier times i had it almost 24/7. so...you're definitely not alone in this... :-)melissa

julie - so glad to hear that your appointment went well. was the wait too bad? i've spent days camped out at MCO many a time (i'm from toledo too but have been in baltimore since 97..i think we actually have some mutual toledo friends/acquaintences). hearing you speak so highly of Bev is encouraging and good to hear...for the sake of both the patients & Dr. Grubb himself. i'm wondering if i should try to get in to see her now before my appointment with dr. g in november...hmmm... anyway, glad to hear your plans...like i said before, plans always give me at least a bit of reassurance in the midst of craziness...i'm hoping they do the same for you. take care, :-)melissa

here's an earlier discussion that has many applicable codes listed: http://dinet.ipbhost.com/index.php?showtopic=2386&hl=codes it's also possible to get a book wherein all ICD codes are listed at the library, and once i found a listing online (but can't find the link on my computer now...if i do i'll post it) :-)melissa

i know..i didn't mean to negate any of the good intentions at all...i totally know that's where you were/are coming from. my post was more just to put out the logistical aspect in general...not for you necessarily but just for folks in general as it is so easy to get excited without realizing the other stuff. i'm sorry if you thought i was saying anything against your post at all b/c that was not my intent. i actually said that i would be totally supportive of the bracelet project. sorry, :-)melissa

I think that Michelle's the one to "go through" in terms of anything official for fundraising...personally I would get a good number to both hand out & sell, but there are A LOT of issues that make any project of the sort more work than anyone would ever fathom up front. And amongst other things, there generally has to be a large amount of money shelled out by someone up front to get things going. I don't mean to be negative...just felt the need to say that things are so much easier said than done. I'd still be entirely behind this and/or other projects, but there are lots of logistics that many of us aren't able to do no matter how much we would like to... :-)melissa p.s. i am having a withdrawal from my wonderful DINET bracelet...i somehow lost it and cannot find it anywhere...it must have slipped off. i am SO sad as many asked me about it & it was such a great opportunity to "spread the news"...i actually had a lot of docs/nurses/other health people ask too as they had occassion to be looking at my arm/wrist. i know there are no more left but if anyone individually ordered extras and would be willing to sell one to me...i'd even give you a profit. i REALLY REALLY want my bracelet back...it was like my little support system that i always had at my disposal...sad but true. i know it's such a little thing but losing it really has me bummed & it's now been enough days that i don't think it's going to show up around the house:-( if anyone has a spare i'd be eternally grateful (PM or email me & you'll hear me scream with delight from wherever you are!)

for me BCPs are an instrumental part of my current meds. i've been on them for several years & they've been nothing but positive for me aside from a few days of very mild nausea when i first started them. i'm on them solely for the stability they provide me in terms of BP/HR/fainting (in other words nothing to do with birth control). i tried to stop them once when i was doing relatively well for a stretch...b/c i wanted to be off as many meds as possible...and it was NOT a good thing. i have never had painful or otherwise unpleasant periods since mine started at a super young age....and i was very regular until my POTS diagnosis in 2002 (prior to that i was primarily an NCS/fainter who felt decent on many days)....when the extreme irregularity started i would know that my period was on its way b/c i would start blacking out a few days in advance. this wasn't too grand to say the least. dr. grubb in consult with my family doc/gyn had me start on levlite continuously, i.e. only getting a period every several months. it has definitely been a positive for me. i had some abnormal ovarian cysts this past year at which time i was switched to seasonale....a bit higher dose of what i had been taking....and had no problem with the switch. good luck! :-)melissa