Sunfish

I'll reiterate the "oh bother" line....as if things aren't tough/frustrating enough without the added injuries, eh? I hope you're healing okay...I know how much those toes can hurt from my horseback riding days (horse foot on my foot = ouch) anda pulled hip from my running days. I too have taken the plunge down stairs...twice, and the second time resulting in my eventually having to have a cervical fusion from the injury. Not something I'd recommend. It's so hard to balance the wanting to push oneself with the being careful though...no easy answer. Hang in there! :-)melissa

Hi All - You don't know me too well as I had just started posting a few weeks before going to Vanderbilt in April, then was super busy getting ready to go and am just now getting back to the forum as I've been pretty overwhelmed with other stuff and knew once I got here I wouldn't want to leave! Now I hope & plan to be a bit more consistant, & what better time to start than the middle of the night when sleep is nowhere to be found?? There is SO much that I'm guessing many of you would be curious to know about my Vanderbilt trip & I hardly know where to start. It was intense. For now I'll be super brief & say that my biggest fear of not being accepted into the studies once I got there did NOT come to pass and that while nothing is perfect it was overall a good trip and I'm really glad I went. No magic answers or solutions but some additional pieces to add to the puzzle & work with to try to get my body to cooperate with some semblance of a normal life at least a bit more! I'll definitely write more - about the experience & about things I learned medically-speaking (personally & in general), but if there are any specific questions anyone has feel free to let me know. I'm going to catch up on the board a bit before I start in on my travel tales. I hope you're all hangin in there & are managing okay with the heat. :-)melissa

Hi Lisa - I had just started posting on here before heading off to Vanderbilt about a month ago & am just jumping back on board - hopefully to stay this time - but had to chime in as it sounds like we're in a lot of the same situation. Namely I'm on LTD with Metlife and it has been nonstop craziness with them....that's putting it nicely:-) I was on STD for 2 weeks in November, then nonstop since 12/30...first STD & now LTD. No one there ever calls me back, I have gotten only one payment on time since January, etc...I could go on & on but I'll sum it up with saying that I totally get your frustration!! But a few things... To give you a "heads up", I was aware of the SSDI application requirement in the policy but had no clue regarding its timeline. They plunged it on me with less than a month "deadline" to proove to them I had applied. I was leaving for Vanderbilt in a few days so I managed to get an additional month extension, which means I have until the end of June. This was not easy & was solely b/c I was scheduled to be out of state for an inpatient hospitalization that they had proof of for more than half of my time period to apply. And then they thought I was nuts that I wanted the extension confirmed in writing. Now that I'm doing the app (online), it is VERY time-consuming, so you may want to at least start looking it over since when MetLife does throw it at you it's pretty quick. Also, it's 6 months after you're fully disabled that you can get paid (following 5 months of disability) with the required expectation of remaining disabled for a year...I've been reading up A LOT the past few weeks so am pretty up to speed on the details. On a more positive note, I had a positive phone experience today with MetLife - my first one mind you, and only after it taking an hour to get this person on the phone. I was calling about my lack of check (that was "due" last week), to check on status of my approval with updated info they had from Vandy, etc...and couldn't get any straight answers. And since my "case manager" never calls back (okay, she did once...) I refused to buy the "leave a message" deal...essentially I wouldn't get off the phone until I had a live person that had more to say than the initial call center folks. And it payed off as I got through to an incredibly nice lady who, on top of trying to figure out why things weren't happening with my claim that should have been, then proceeded to ask me a bunch of questions about the research study I was in at Vanderbilt, about dysautonomic, etc just out of her own curiousity...she started to apologize for asking & I was like - no problem...ask away...so...there is at least one person there who sort of gets it and - even better - made something happen. B/c when I got home from an appt later in the day there was a message from my case manager (total shock) stating that my claim is now approved through August 31st. So...I will finally - hopefully - have a break from having to deal with them on a regular basis. So...hold on & keep bugging them as eventually things will come through. It certainly is rediculous though, eh? And lastly - I agree with the others re: your GP filling out the forms. If he has any records, results, etc and has seen you at all he should be able to do them. I actually did some of them with my GP &/or her NP b/c even though she knows me well some of the questions are a bit obscure. FOr me she's my point person with all the specialists I've had to be seeing, etc. I will say though that I know MetLIfe needed a lot more than what was actually on their silly questionaires (at least the ones we got) when it came to LTD, so be prepared. Good luck with everything & let me know how things go with the LTD. I feel your pain! :-)melissa

I'm curious as to how many of you have been told specifically that you have autonomic neuropathy as part of your diagnosis...depending on what you read or who you talk to, it can be a cause, effect, etc. I think the diagnosis is via one or both of the sweat tests, but there may be other methods I'm not aware of. Any takers?

I know I'm going out on a limb here, but if any of you are in the know with old gospel music, there's a song that best describes where I'm at these days.... "Deep....WAY down Deep...WAY down..." much better with audio, but it works regardless. although i've been at worse spots in terms of what i consider the "POTS stuff" (OI, tachy, low BP, fatigue, mild nausea, dizzy, etc), I have so much else going on now (major GI issues, bladder that won't work, etc) that the overall scenario has me down pretty deep. BUT...I am doing anything & everything I can to try to get myself headed in an upward direction. Onward & upward one & all!! :-)melissa

My first "encounter with hyper-yawning" was actually when I had my most recent tilt table test at the end of March. The doc affirmed that it's one of the many "other things' under ANS control. There has been one other time since that I noticed myself yawning a lot but for the life of me I can't remember the circumstances now. Yet another interesting item to add to the mix I suppose... :-)melissa

Dayna - I read the "before & after" in one felt swoop, but am SO happy for you that the appointment went well. Isn't it sad that we have to be more surprised at the good doc encounters than the bad? Hopefully someday it won't be so... Anyway, I'm so glad that you have this doc on your side; it doesn't solve everything but it sure makes a big difference. Let us now how things proceed.... And congrats! :-)melissa

Hi all - Before my GB surgery (2 months ago) I had never had problems with insomnia. In fact I was such a hard sleeper that people would be alarmed in the difficulty/inability to wake me. But after surgery insomnia hit me like a brick...at first on & off but then to the degree that I wouldn't sleep AT ALL for over two nights regardless of exhaustion. And I was "good"...not allowing myself naps, no caffiene, etc...I didn't try any meds as there were/are so many other variables going on that I kept waiting for it to subside. One of my guesses was that perhaps my long-standing meds were affecting me differently after extreme weight loss of late, but who knows. For a month or more I didn't have more than one full night of decent sleep, but for me once I was asleep I was ok - it was the getting to sleep that was the problem. Currently I am SOOO thankful that I've had 5 nights of sleep in a row...knock on wood....so hopefully I'm on the upswing. My doc says that it's all typical of autonomic dysfunctions; says he sent some patients to a sleep specialist who was into autonomic stuff several years back (no longer in practice) & they all had different issues...everything from apnea to circadian rythm disturbances. So...I can feel you gals entirely in terms of the sleep...or rather lack there of...I would never have imagined the torture of it until recently. For better or for worse though I can't relate to the polyuria - I have the opposite issue to the extent that I can't go enough or at all even when I want to & have to catheterize...we need to find a happy medium, eh? Good luck & sweet dreams, :-)melissa

I can't speak to a beta blocker, but I had to wean off of other meds several weeks ago for testing (and am now back on them) and had some pretty wacky withdrawal symptoms...much greater & different than I had had in the past going off of the same meds. I add this only to bring home the point, as so many often do, that anyone can react oddly to anything at anytime. Not exactly helpful or explanative, but none the less my take on things these days. That said, it's obviously something you still should be tracking with your doc. Hope things calm down for you soon. :-)melissa

I don't have a model for you, but I have done well with a recumbant bike at times when I am on the up & up:-) The ones at the gym that I've used are made by Cybex...I don't know anything more specific & can't check as I've cancelled my membership... If I had unlimited space & finances though it would definitely be something I'd invest in. :-)melissa

Happy birthday to you...happy birthday to you...happy birthday dear sun....happy birthday to you... I saw in another post that it was your birthday a few days ago so wanted to send happy healthy wishes even though it's a few days late. Hope you had a good one! :-)melissa

heya sun - i'm super glad that you at least found a correlation between your recent tummy troubles and a med; still no fun but better than not knowing why you were feeling so icky. as far as other meds, everything reacts differently with everyone, so even though lexapro is supposedly an SSRI with fewer side effects in the general population, that doesn't mean it has to be the case for you. also - i don't know what if any other meds you are on now or have tried previously, but there are lots of options other than SSRIs too, so while it's frustrating to have a bad rxn to a med & while it's good to be aware of for future meds, it may or may not have any bearing on how you do with other things. and - if you really want to be positive about things - at least you know definitively that it's not the med for you; i am always so confused when i can't tell either way if a new med is doing anything for me. but i digress...keep pluggin along... :-)melissa

i have not had a sleep study & don't think there is any indication for such, but amongst the autonomic doc gurus, it's a "known" that mornings are the worst for almost everyone. and without going into the specifics of it, it does have something to do with the lack of fluids for a significant amount of time; not the lack of intake per se but the body's reaction to such. so...while i don't have much to offer, you're definitely not alone! i actually can't get up in the morning until i've taken my meds & the midodrine kicks in; i set two alarms 30 min apart. and i always have liquids at the ready next to bed. that said, there can't be any harm in asking your doc about a sleep study...i know that a good number of people with autonomic problems also have diagnosable sleep disorders. i have joked (but with some seriousness) at times that i wish i could hook myself up to IV fluids every night while i sleep! :-)melissa

having a doctor that is interested/excited is half the battle. and it's very encouraging to hear that a POTS patient was discussed at a conference of any specialty! have you seen an endo in the past? i am actually going to one who has some dysautonomia interest at the suggestion of my autonomic doc (neuro) but won't see him until the end of may. let us know how it goes! :-)melissa

thanks to both of you for posting! :-)melissa

good idea but i too find it too hard to pick only one for the poll as my "causes". albeit they are all guesses to an extent, are multi-factoral....some predisposition always, illness, trauma.... too much fun, eh? :-)me

hmmm...i've not noticed a gradual decline for myself temperature-wise, but i wouldn't rule it out b/c my temp is always here there & everywhere!! generally "normal" is 97 something but as of late i've been all over the place in every direction. in the past i've tended to be more on the cold side. i'd say it's something to keep an eye on particularly if it's a big change from your norm. let us know how things go... :-)melissa

i used the TENS as part of PT when i had a neck/shoulder flare-up after a car accident last year & it seemed to help. might not have been as pro-active about PT but i'd had a csuccessful ervicial fusion a year before so we wanted to nip any problems in the behind right away. it definitely didn't do any harm though. glad things seem to be heading in the right direction for you! :-)melissa

My answer is the same as Ann's above...I'm for it but not blindly. I'm actually surprised that there are as many responses as there are for such a controversial topic! Hope all goes well with the research... :-)melissa

welcome! unfortunately i don't have any additional info for you, and sadly enough having two "POTS docs" in your area is more than most; i know LA is big, but they're few & far between everywhere. good luck!! :-)melissa

Good topic & something that I've been wrestling with quite a bit myself! For me it's impossible to entirely separate "normal" young-adult changes in career goals/aspirations from changes that are due to my health. I do know that medical school is something I've ruled out - at least for now - because of my health, but I'm not certain that it would be my choice regardless; it's easy to say "if only" when it's not really an option. Med school might be okay but not residency, etc. I've worked full-time for the most part since graduating in 2002 with my BA and am hopefully starting on my masters in social work with a health concentration in the fall...if we can get my health stable enough. At some point I hope to also get my masters in public health but I didn't want to do a dual degree program as you lose out on electives for both. Again, I can't say that these things didn't interest me before my health problems, but they have certainly helped drive my current passion as I want to somehow work in patient advocacy/ health policy. I'm excited and invigorated by the substance behind my current aspirations, via my own experiences & those of my friends & family; I wrote about such in my application essays (so far accepted at 2 & still haven't heard on #3:-)). But there is always that faint undercurrent of fear & uncertainty in that I know I may not be okay enough for school in the fall or that I may be then but not for the duration of the program. But I don't let this rise to the surface as it would suffocate me. So...I go onward thinking the best but keeping reality in mind. Stay tooned!! :-)melissa p.s. thought i should throw in that i'm 25

Linda - I just want to give you major props for following up with your horrible treatment in the ER. I have a list of mistreatments that I'm going to follow-up on but have yet to actually do so. In the midst of a horrible situation I'm also glad that at least your calls afterward were well-received. I too have had bad ER experiences & this past year my doc has had to send me and always apologizes pre-emptively, knowing that it's a crapshoot every time. I have figured out though now to go to the hospital where my doc has priveleges & insist that they call her & haven't had a problem there...not always help, but nothing unexcusable. But I live in a large area with lots of options, too, so I realize not everyone has that flexibility. There are still records out there that say I'm nuts that I would love to have "fixed" but it's a project I don't currently have the reserve to embark on. Great job in advocating for yourself & for all of us. We all need to follow your lead. Many many thanks! :-)melissa

thanks for sharing your story...a very cool grandpa indeed:-) i've actually thought of a different variety of the same thing after having the compression boots on my legs in the hospital...usually people hate them but i loved them! they only work when you're sitting/laying down, but the two times i've had them it's gone through my mind that i'd like to sneak them home with me. if your grandpa gets something working, i'd buy!! :-)melissa

Just thought I'd add another "me too" to the nausea issue. I've had it on and off at times to varying extents over the years but lately it's been much worse, i.e. losing lots of weight, stays in the hospital, actually throwing up, etc. For me my whole GI tract is too slow & we've been playing with meds; Reglan helped me some but it's not safe to stay on for long; I'm now trying Zelnorm & it's helping a bit in terms of lower GI but not really stomach-wise. I have always felt queesy when I "crash"...if I actually pass out or if I don't...which I think is more a blood flow issue; the blood is prioritizing & thus vacating the GI region. So...I unfortunately don't have any magic answers, but I get it! Hang in there... :-)melissa p.s. it doesn't fix everything by any means, but more small meals tend to work better than larger ones, small amounts of liquids always rather than lots at once, etc...and like someone else said, sometimes a bit of bland food helps at times when you'd think it would make things worse, so it's worth a try. p.p.s. there are lots of other posts on the site about GI issues that might be good to look up...

Carolyn- Just wanted to say welcome; sorry you have to be here but glad you found the site. Regarding disability, others have already said most of what I've heard re: social security disability, but I thought I'd add in that I am currently on long term disability through my employer & that was obtained without too much hassle. Or rather any of the hassle had nothing to do with the medical specifics. I know that many don't have this benefit & I've only been on it for the past few months (with the hope that I'll be off of it in the not-too-distant future, i.e. to start grad school in the fall). I also have a lot of "extra' autonomic stuff going on - GI, bladder, neuropathy, etc. - but you know yourself best so I'd say make sure you have a supportive doctor & do what you need to do. Hang in there & good luck! :-)melissa