Sunfish

hi - this isn't exactly a "me too" so don't get too excited, but i did have one thing to throw out there for the urinary incontinence. (personally i have issues NOT being able to go in both arenas, which can also be pretty problematic...too bad there can't be a happy medium.) i don't know if this would/could make sense with the problem being periodic, but i know that some with issues of incontinence have luck with intermittant catheterization, or even with simply going to the bathroom more often than the felt need in able...i think the idea is that if the bladder is more full the incontinence is more likely to occur; by keeping it closer to empty it decreases the chance of problems. technically speaking i think this theory would be deemed as help for overflow incontinence, but it came to mind when i read your post so i thought i'd at least throw the idea out there in case it could be of any help... good luck! (and glad to hear that things are going decently in the syncope realm), :-)melissa

corina - ditto ditto ditto to others' postings. i'm so happy & excited for you but also jealous & wishing i could stow away in a suitcase. i'd offer to carry them for you but probably wouldn't make it more than a few feet so that wouldn't be too helpful! i do know some french though... it does sound like having the friends along will be the best of all worlds, and it's really encouraging for me to read about your positive & successful adjustment to wheelchair use as i just got fitted for mine last week. vacations are so out of my realm of thought these days so its a good reminder to read that life, aka vacations, can go on. have a wonderful & relaxing trip...i'll look forward to hearing all about it upon your return! :-)melissa

hi ernie - i too am so sorry you're having such a crummy time with the docs. it never fails to frustrate me beyond end. i too have had "challenges" convincing docs that IVs help when my BP isn't drasticly low. i only recently have the written order from vanderbilt though so haven't really had to try since then. it's a bum to know that it may not even make a difference. luckily though i do have a supportive (albeit overwhelmed with me) PCP, so as tough as it is i would encourage you to try to track one down; even if he/she isn't an expert it's great to have an advocate in your court. i have joked many a time about wishing i could start my own IV at home, but like others have said it is NOT something you can do on your own without a line already in or without home health assistance. i hadn't realized until recent posts that home health can be an option prn/intermittantly, so am going to bring that up with the doc since when i'm most in need of the fluids i'm usually in the worst place to be getting to the urgent care place/ER to get them. one other thought...do you have any urgent care type places by you? for me these have generally been better & easier & less crazy than ERs for fluids. my docs office doesn't administer them but if i'm not bad enough for the ER (aka if i haven't already blacked out in public & been loaded into an ambulence against my will) i use the urgent care place instead. it's also cheaper. hang in there. i had to be off meds both for local testing this winter & at vandy & know how horrible it was. let us know how the tests go...i'm hoping well! :-)melissa

Dear P - thank you so much for sharing your wonderful times with us...i too got a bit teary eyed as i read...perhaps some mix of happiness & elation for you, reminders of my own triumphant graduation (after a super-ill semester) in 2002, and hopefullness for feeling as well as you have been myself. it was great to be able to live vicariously through your successess & adventures (although it did make me a wee bit jealous ) conGRADulations & thanks again for letting us all share in on the fun, :-)melissa

hi linda - i'm glad you went to the doctor but so sorry that your hospital experience was so crummy. i too have had many hospital stays that have accomplished nothing other than frustration & some pumping up (IVs). i continue to be baffled by doctors' seeming "inability" to call other docs that actually know what might be going on with me...even when in the same hospital system. i'm glad that you're at least feeling a bit better than when you went in & hope you get some more answers & support soon. it's tough & a never-ending battle but IS possible... hang in there, :-)melissa

from the legal side of things, there is actually law in the US that - for most jobs - protects one NOT having to disclose any illness, disability, etc. that said, obviously if accomadations are needed telling is a must. and like others have mentioned there's something to be said to the stress of "hiding" your reality...especially if it comes up later... there are also laws that protect a worker's privacy in regard to once you tell someone. i.e. if you talk to the HR department they cannot go tell the whole office of your health issues. i don't know all the intricacies of this & it varies depending on the organization of a place, nevermind the fact that people may not always follow the rules (knowingly or otherwise...) i had a bit of an odd situation when hired for my first job out of college. i actually went through the entire interview/hiring process while doing the best i had been in years...off all meds, pretty active, not really a day-to-day issue for me. so...it wasn't something i thought about. then in my last semester, actually a few weeks after my final interview, i ended up really ill, spending half of the next two months in the hospital, graduating only through excessive paper-writing via laptop from my parents house 500 miles from campus (under dr. grubb's watch back in ohio). i actually accepted the job offer from my hospital bed. so i was hired when good health was aplenty & started coming off of 6 months of the exact opposite. i sort of knew at some point someone should know at the office "just in case" but didn't know how/if/who i should talk to. i made lots of self-accomadations but other than the one fellow new-hire who i had been open & honest with, no one knew a thing. until in mid-august i had a seizure-type black out in the office. sort of took my process of choosing out of my hands. back at work 3 days later & talking with my manager, she said she would have rather known. retrospectively i think it was more lip service than anything, but it did sort of seem like i was hiding things from them. and going forth it did make things easier with doctor appts, etc...my supervisor at the time was great with it...i was always worried but as long as my work was done well he didn't flip out about a longer lunch break if i was stuck at an appointment, etc....when supervisors were shuffled due to company changes a year and a half later it was another story. even when i was doing great, that boss' knowing that i had health issues was a definite disadvantage... so the point of all my long ramblings is that it really does depend on the situation. there's a good chapter on this exact issue - "To Tell Or Not To Tell" in a book i mentioned not too long ago called Cereal For Dinner. it's slanted toward mom's living with illness but much of it is applicable to all. i'd highly recommend the chapter about work as it really fleshes out a lot of the issues.... good luck, and first & foremost congrats on how well you're doing...it's always so great to hear. it's especially encouraging to hear how helpful the different life-changes have been for you health-wise. here's hoping for lots of continued good days, :-)melissa

some thoughts re: the original question & the following posts... i'm guessing you've already looked at this, but just in case you haven't, there's a good amount of info on the "what helps" part of POTSPlace. the link is: http://www.dinet.org/what_helps.htm some of the more "alternative" ideas are listed too, in addition to the "standards". i too do well on IVs but have not yet had them at home. seeing how tough it is for me to get to the urgent care place when i need them most i'm thinking of asking about how to get it set up with a home care place once i move...not for always, but prn...i hadn't realized this was an option... re: vitamin supplements, etc....i know they help many, but with my GI problems (motility/gastropareses) being so bad at times i simply cannot tolerate a lot of additional pills. in essence my doc & i agreed that it was better for me to scratch a few things that weren't absolutely necessary to day-to-day survival than it was to be throwing up even more than i already was...a lot of vitamins, etc are also only absorbed well with at least adequate food intake so this is worth keeping in mind too... re: DDAVP, i have only been on it for about a month & it seems to be helping me in the mornings. also, FYI, it was/is originally a med for diabetes insipedis; the usage for incontinance/bedwetting/urgency came as secondary. that said, i'm not taking it for any of those reasons but b/c it keeps more fluids in my body overnight. i used to take florinef with some benefit but it wrecked such havoc on my potassium that it was counterproductive (i couldn't tolerate various varieties of potassium supplements). but back to the DDAVP, i was put on it at vanderbilt when we discovered that my fluid/urine output in the morning was always 1200cc or more; i suppose for a "normal" person this would translate to lots of overnight awakenings to use the bathroom, but my bladder nerves aren't too snappy so it doesn't wake me up...good sort of but not the best on my bladder. i have always felt REALLY dehydrated in the mornings, but until my bladder got moody this past year there was never any attention paid to my output. b/c of measuring how much i go on my own & how much i have to cath myself, some other things have become apparant....regardless i'm planning on sticking with the DDAVP as it seems to be helping some... another thing that has made a big difference for me is birth control on a more continuous basis. i now get a period every 3-4 months & when i do get it my BP crashes aren't as bad in the days prior. i tried to wean off of it once when i was doing pretty well a year and a half ago or so, but no luck...i definitely do much better with it... there's also the cortisol-defficiency issue that myself & a few others on the forum have found out is a piece of the puzzle for us... there are other little "day to day" things that i know my body depends on either daily or as needed, but i think most have been discussed on here...compression hose, loads of salt, gatorade, nutritional supplement drinks, etc... and for me and many others a combo of two or more different meds in very small doses seems to do better for us than one thing at a higher dose... sorry if i've just reiterated what you already know! good luck! :-)melissa

there's no way to know as everyone is different, but the combo of mesitinon, inderal, & mododrine has helped me a lot with my being able to tolerate sitting...much more than it has helped with standing actually...i can't really speak to the mestinon on its own though b/c it actually made me pass out on its own...or rather it didn't keep me from passing out...same with the inderal. honestly though, there's no way to ever have a guarantee for anyone as our bodies and conditions are all so different. i could hardly sit much at all though before this recent med combo, so something about it is doing me some good. good luck! :-)melissa

Hi Christine - I definitely have nausea. For me it also falls in a few different categories. I get a more "systemic nausea" (don't know how else to describe it!) when I am in a danger zone in terms of passing out, with really high or low HR &/or low BP. This doesn't generally have anything to do with what I have or haven't eaten but it makes me have zero interest in food. I try for fluids as much as possible as soon as possible and the next thing that generally appeals to me is salty stuff. I have never actually gotten sick (thrown up) from this nausea. On the other hand, I have nausea/fullness/bloating/vomiting from gastroparesis, which has really reared its ugly head for me this past year. I'm thankful that in the last month it seems to be finally settling down due to a mix of meds and who knows what else. This nausea is more "localized" and when it's bad I actually get sick quite often from it if I eat much of anything. I even have trouble with liquids when it's at it's worse. From the end of Dec to about a month or so ago I probably didn't go more than a few hours at a time (other than when sleeping) without some degree of nausea...not fun. My gallbladder also pretty much stopped functioning normally which, until I had it taken out, made the nausea much worse. Like Pooh said, the nausea can be related to autonomic stuff or not...or indirectly so. I'd at least bring it up with your doc to have it "on the table" as part of things. Another issue is that A LOT of different meds can cause some pretty nasty nausea. Even if you've been on something awhile it can all of a sudden cause problems. It is frustrating though...and in terms of the "no rhyme or reason" I can empathize...I kept a completely obcessive food/med/fluid intake diary for a good six weeks & it pretty much told me nothing other than that at that point I couldn't eat hardly anything at once without getting sick. hang in there! :-)melissa

mestinon, for some, has been found to raise BP when standing/upright but not when laying down...for some reason i'm not coming across the link for the actual article re: the original OI research with it, but here's a short summary i found that gives the general idea: ANA: Drug helps to relieve orthostatic hypotension Did not raise BP when lying down By Kylie Taggart TORONTO ? A study has found pyridostigmine (Mestinon) effective in alleviating orthostatic hypotension, without causing blood pressure to soar when the patient is lying down. Pyridostigmine is an acetylcholinesterase inhibitor which has been used for years to treat myasthenia gravis. "This is a significant step forward for these patients. This would be a good drug to provide as the first line of treatment," Dr. Phillip Low, lead investigator and neurologist at the Mayo Clinic in Rochester, Minn., told the annual meeting here. Previously only one medication, midodrine (Amatine), had been shown to be effective in the treatment of orthostatic hypotension, but it has the unwanted side-effect of increasing blood pressure when the patient is lying down. Only low doses of midodrine do not cause hypertension while patients are lying down. The six-day trial involved 58 patients with orthostatic hypotension from a neurological cause. All patients were in hospital throughout the trial. During days two to five of the trial, patients were cycled through one of four treatments in a randomized fashion: pyridostigmine 60 mg; pyridostigmine 60 mg and midodrine 2.5 mg; pyridostigmine 60 mg and midodrine 5 mg; and placebo. Blood pressure readings were taken immediately before treatment and one hour post-treatment. Standing blood pressure was significantly improved for patients on pyridostigmine compared with those on placebo. Patients randomized to pyridostigmine plus low-dose midodrine had an even better control of standing blood pressure compared with placebo. Most importantly, there was no significant difference between treatments in systolic or diastolic blood pressures while patients were lying down. A followup study was also conducted at the clinic. Patients were followed for an average of 19.5 months after the initial study period. Twenty-four of 32 patients reported either good or excellent results from daily pyridostigmine treatment. "It is not a miracle drug," warned Dr. Low during his presentation. "It depends on the status of autonomic failure," he said. in terms of how long it takes it to work, it's pretty fast-acting. one's body may get more "settled in" with it after a few days, weeks, etc, but there is some effect immediately, i.e. within a few hours, for some. the med trials i was in at Vanderbilt could only test meds that worked in this way, so mestinon is one that is, generally speaking, in & out of your system fairly quickly. re: dosing, i started on & am still on 30mg 3-4 times a day. my body tends to like small doses & there's no plan for me to increase the dose. i know others here on on larger amounts. i'm also on it in combo with other meds, as i actually didn't do so great on it alone. (in the med trial it made me pass out when i took only the mestinon but i did relatively well with it in combo with a beta blocker in a VERY small dose). i take it on the same dosing schedule as inderal/propranolol (10mg) and midodrine (10mg). the three combined seem to keep my BP/HR the most stable these days. hope this helps, :-)melissa

Hi all - I have this thing with liking to know people's birthdays...I just can't stand knowing that I've missed someone's (even if I had no way of knowing when it was to begin with). And I know that as some of my social circles have narrowed b/c of health issues, people remembering mine can mean even more. So...it makes no difference to me whether people want to share their ages/birthyear, but how about a survey of MM/DD? Thanks!! :-)melissa p.s. i know a few people have b-days in their profiles, but not too many....

katherine- thanks for all of your hard work. it's so great to have all the pics....and updated so quickly too! hope you're feeling a better than earlier in the week... :-)melissa (fellow marylander!)

Nina - i actually don't have EDS myself but have a friend who has it and she has all the issues you're describing. i don't know whether that does or doesn't merit a trip back to your doc, but just thought i'd let you know that all the additional "fun" can definitely be part of the EDS picture...she sees one of the top EDS docs as her primary care doc & is quite the expert herself, so despite the fact that it's third party, i think (and hope) i'm passing on pretty valid info... i'm also curious what you're referring to in terms of teeth issues? i've been having some weirdness myself so you peaked my interest. hope you have a good trip! :-)melissa

Hi Rose - i'm glad that my book was helpful. and congrats on getting the info sent...for me, even if i hadn't gone, there was something to that. just to warn you, they'll soon come asking for your medical records, so you may want to start gathering. i sent them a decent amount...highlights from over the years & pretty much everything from my last crazy year or so...but by no means "everything". that seemed to work well. regarding your readings, i don't think you'd have a problem in terms of them acknowledging that you have an issue, but remember that you have to also qualify for particular studies...i know that the main one i was there for was for POTS (even though i have other diagnosis as well) so it was pretty much based on a dramatic increase in HR upon standing (rather than fall in BP, which i usually have too). i just think it's important to remember that not "qualifying" for a study doesn't mean you don't "qualify" for autonomic craziness...i think that's something i would have had a tough time with had i not been accepted. it's not that i don't think you'll get in, i just thought i'd interject the "research line" as a safety. do let me know how things proceed...if you end up going or being at the point of having to decide we'll have to definitely chat more. the coolest would be if you would be there when i have my outpatient follow-up as i could come & visit you! :-)melissa

Hello & welcome - Others have already posted a lot of what I would say, but I just wanted to say hello & to tell you to hang in there the best you can. I KNOW - as do many on the site - how tough it is not be "normal" (whatever that is). I'm 25 & was diagnosed at 17, with some problems before that. You'll find lots of stories that you may be able to relate to, at least in part, throughout the site. And while it's important to get things checked out & diagnosed as much as possible, you can take comfort in the fact that lots of symptoms that are very scary are not actually dangerous in a life-threatening way. Obviously that doesn't mean they "feel" any better, but it's still good to know at times. Regarding your slow heart rate, I had that problem when initially diagnosed & still do at times (my heart rate dropping upon standing)...there is a lot of grey area at times between different diagnoses but a lower heart rate can sometimes be part of Neurocardiogenic Syncope, even if you don't actually get to the point of passing out. Like others have said, though, there are other things that look like dysautonomia (and vis versa), so do what you can to get checked out by a doc as thoroughly as possible....and don't be scared by tests they run; they always have to test for lots of "extra" stuff to rule things out. hang in there, :-)melissa

Hi April - There's not much to add to what others have mentioned & most of all to the link Nina (MightyMouse) directed you to, but I just wanted to say good luck. The best approach, depending on your doctor, might be to read up some on your own & then bring up the issue. That way you'll have lots of knowledge at your disposal & perhaps will have something that your doc wouldn't have thought of on his/her own but thinks might make sense & is willing to try. Let us know how things go... :-)melissa

I've had similar experiences in hospital settings...where psychologists or psychiatrists were called in for consults & ended up telling the docs that I was totally fine...one told me that I was in better shape mentally than he'd be in my position.... So they're not bad... :-)melissa

Getting what is already there changed is VERY difficult...generally it can only come from the person who originally messed it up in the first place, which half the time is the problem! An addendum, however, from that person, another nurse or doctor or medical professional from the same institution/office, or even yourself can be added fairly easily. This doesn't get RID of what's already there but at least then the "whole story" can be there. I believe that anything you present to be included in your medical records must, by law, be included. Of course most aren't going to look the same at info from a doctor & info from the patient him/herself, but it's better than nothing. Another way to give something you write more "substance" is to have it signed off on by a doc. SUch that if you have a good or at least decent doc now who agrees with what you're writing they could sign the bottom perhaps. I haven't done this in terms of corrections but know that when I've taken symptom logs, etc. to my doc she often just asks to keep it, signs & dates it, & adds it to my chart. I really don't know if you can make something "disappear" though...recently my primary doctor told me know (and I love her & her staff...it wasn't anything of theirs that was the problem). There was actually an error in medication & discharge planning in my notes from Vanderbilt. Vanderbilt requested that the draft (that was in error & hadn't meant to be sent in the first place) be trashed and replaced with the new/final copy. My doc's office said they couldn't do so by law. They made a note on the draft/erred copy & attached the revised/final/correct copy, but the initial goof-up is still there. I haven't looked into it further but that's the bit of knowledge & familiarity I do have with the issue. I know that there's lots in my records that would be better not there, but ultimately anyone who knows whats what and is working with a patient in the here & now can differentiate. I have everything from off-the-wall psych allegations to hospital discharges stating I am a 55 yr old woman (I'm 25) to wrong diagnosis based on my meds (b/c of taking them for different reasons). Depending on the setting though I just don't forward things that are entirely off-base, for instance when I sent my records to Vandy I didn't send them wacky records that have since been debunked time & time again...they had asked for relevant records so I didn't feel odd doing this. Good luck! :-)melissa

you're welcome:-) like i said, i'm just glad some folks had the fortitude to read through my book! as for how i sat & stood so much i have no clue how i managed myself, other than super-supportive folks there & holding onto the fact that i was hoping to benefit in some way from being there...my body definitely didn't like the process ordeal & i was quite unhappy physically during much of the testing (with the data to prove it!) but i got into the routine & came out okay on the other end... glad that my ramblings were helpful, :-)melissa

hi katherine - maybe you're just too excited about the wonderful new picture site you set up?! just kidding:-) hopefully my delayed response finds you coming out of your "hole" but i too agree that a few days, while annoying as all heck, isn't enough to get to worried about as of yet. i generally do the "few days" mentality and then move on to the "few weeks" mentality for crashes...i haven't had all of the symptoms you described but i've had most at one point or another over the years...fun fun fun... there are a lot of possible explanations & thoughts that others have already posted, but i just wanted to send some good, hope-you're-starting-to-feel-better thoughts in your direction... :-)melissa

hi linda - sorry that you're having such a rough spell & hope that you're able to touch base with one or more of your docs. i did want to let you know though that i often have twitches/shaking like you described when i a black out or when i'm close to it and often for quite some time afterward. i have had times over the years when i have blacked out that much in short amounts of time too. i probably still would except that i know i simply can't push it at all soon after a black out. i have had numbness/tingling but never in my face or mouth...for me it's extremities. hang in there & keep us updated, :-)melissa

Ernie- i hope you're coming out of the TT & your appointment okay. i know they always knock me out. i had a similar frustrating experience with lots of questions & my history & symptoms asked about during the tilt. and even after. the next day when i was a bit better (and back on meds) i ended up writing the doc & faxing it b/c i knew i hadn't been able to communicate all that i wanted to effectively. in the long run i think this actually helped b/c he realized further how truly out of it i was the day of the testing. still...it was incredibly frustrating...as is being told that you're one of the "special ones" like your 2-patients-a-year-passing out thing...sometimes i'd do anything to be told that i'm not the exception, you know? hang in there, :-)melissa

hi pooh - i don't have too much additional to offer in terms of the fatigue issue but definitely can relate. and when i am up to doing certain things everything else seems to suffer. and while it may not have a different end result, for me the not feeling up to do something "just b/c" is SO different than not having the energy. it is truly frustrating. in terms of the additional questions from SS though, i would honestly just write something very similar to what you wrote on here. i've read & heard from many that the worst thing to do can be to write that you do "nothing" b/c no one does "nothing" day in and day out....so whether it's watching a movie, going to a meeting or activity, or taking a trip to the store, that's not going to make or brake your application. obviously if you're running marathons or going to the mall for 8 hours a day every day it probably won't go over too well, but the qualification for disability doesn't mean you have to be tied to your bed. that wais, i know how tough it is to qualify (some of which is pure luck) so understand how unnerving the whole thing must be. i've spent over 12 hours in the past few weeks on the initial application and it was soooo exhausting. good luck & hang in there... :-)melissa

hi eagle - i don't have any wisdom re: the actual eval, but just wanted to through out the thought that it's not necessarily a bad thing to be found with some illness-related anxiety...based on all the reading i've been doing on SSDI (i just had to apply myself), it could even help your case. again, one never knows how their minds are working, but it's not necessarily an either-or thing. obviously you don't want a finding of anxiety instead of your medical stuff, but having it as a p.s. isn't automatically a bad thing. hopefully some others can give you further input regarding the eval itself... good luck & let us know how it goes...do you know when it is yet? :-)melissa

Michelle et al - more awareness never hurts in terms of donation recognition, etc, but perhaps it's us as members/participants who should take it on too, ya know? for instance many of us may have family members or friends who would be more than happy to contribute & who feel bummed that they can't do more for us when we're sick...they may actually be more than willing to donate but have no idea that it's an option...i know this doesn't apply to all, & it's not always an easy thing to initiate/bring up with folks, but i'm just sort of thinking out loud...for myself as well... Gold et al - i like the premise of realizing that donations don't have to be big to make a difference. a lot of little donations can make one big donation. i know, my math skills are astounding:-) i agree that the sort of thing you mentioned doesn't take nearly the effort of some other projects but it still does take a lot...probably more than any of us would realize until embarking upon it. i don't want to squelch the idea b/c i like it but i just wanted to put it out there that especially for a newer/smaller group that does not have the established infrastructure/support of a bigger organization it would still be an undertaking... and yet, life is an undertaking so i'd say there's no harm in us all keeping the wheels in our minds turning... :-)melissa