Sunfish

And I have one other addition.... Blindsided: Lifting a Life Above Illness, A Reluctant Memoir by: Richard Cohen The author is the husband of Meredith Viera (sp?) from The View & has MS. He was diagnosed in his mid-twenties. For some reason I had a bit of a tough time getting into it...not b/c it was hard to read but for some reason it just seemed a bit awkward...but who knows...once I did get into it though there were parts I REALLY liked/could relate to. I started copying down quotes but it became too tedious so I switched to marking pages with post it notes which I then copied before returning it to the library! In particular in terms of issues with self-acceptance, work decisions, trying to maintain normalacy, etc. Also parts about marriage & kids (which I cannot relate to...yet ). Has anyone else read this or any of the other books I listed above? Any thoughts? :-)melissa

Keep on leaning. I'm sure it doesn't feel that way & I don't at all want to minimize how tough things are...I can't imagine...but it actually sounds like you're doing pretty darn well in light of everything. I'm impressed that you're getting anything done, i.e the store, a trip out, etc. I'm in a Women's Bible study on Tuesday evenings (currently my one bit of a social life!)...would it be okay if I asked them to pray for you & Jeff? Keep on hangin in there. And leaning on whatever & whoever you can. love & prayers & hugs & sunshine, melissa

I'm bumping b/c I want to make sure as many folks as possible see these...they're really good! :-)melissa

Hi April - Welcome. While I cannot relate to all of your history (I've never been pregnant) there are elements that still definitely ring true. And whether or not you have a type of dysautonomia, an unknowledgeable doctor & your informing yourself does NOT mean you're crazy! Even after I was diagnosed, a neuro at a very prominant hospital tried to get me onto a psych ward b/c she felt that my new symptoms simply couldn't be part of the dysautonomic picture. She wasn't a specialist & as soon as I got back to my doc who knew what was really up he could hardly believe that she was so clueless. If you look through the board, you'll find that lots of folks are intollerant of lots of different meds for lots of reasons. And to complicate things even further it can change over time. Or day to day. Most of us are able to find some combo of meds &/or lifestyle changes to help our symptoms at least a bit, even if it's a little bit. So...I would encourage you to pursue the dysautonomia clinic; most on here would be jealous of a resource so near by. Even if you're not certain yet about your money or insurance you should be able to make a call to pursue an appointment as there may be a waiting list & you could then figure out your insurance in the meantime. Re: the high blood pressure, it may not be the "norm" but it is not exclusionary. Personally mine is on the low side of normal with excursions lower & occassionally higher. But there are more than a few people with high BP too. I don't think you mentioned your heart rate....do you know if it is high? Good luck & hope you're able to get some answers soon. :-)melissa

Hi Lisa - I know how frustrating it can be to have docs reacting differently, and while it's a great thing that the cardio isn't too worried, I get how "no answer" is horribly frustrating too. It very well may be that the cardiologist not being concerned just means that he's not concerned in an immediate, really-need-to-be-worried-yesterday sort of way. Kids do have higher heart rates in general so while it may still be high, if there aren't other problems it's probably not dangerous in a way that would freak the cardiologist out. Do you have an appointment with him at some point or is he just going to call you? Is your son feeling any better with a more restful schedule? I can't imagine how tough it must be as a mom. Hang in there & keep us posted, :-)melissa

MightyMouse & Ernie...you gals gave me quite a laugh...thank you! And yes, I sure as heck wish that one doc COULD be the only doc, but unfortunately that's just not realistic. I settle with at least trying to keep them all in the loop & do have less than a handful who I would consider my "inner circle". :-)melissa

Hi Chrissy - Like Kathy, I was going to encourage you to get a GYN consult. Yeast infections can have a severe odor, as can many other GYN problems. In terms of Uro problems & why most on the board see Urologist, I obviously can't speak for all but to the best of my recollection some have IC, which can cause lots of pain amongst other things, and some have more directly nerve-based issues of incontenance or retention, some with the "neurogenic bladder" diagnosis. Often as an offshoot of these things, some have frequent bladder infections. Personally I have a neurogenic bladder...often don't feel as if I have to go at all & if I do it's long past when "normal" (my bladder is already too full). I also cannot go on my own anymore at times & never empty fully so have to catheterize myself several times a day. In terms of pain, I get belly pain when I don't catheterize as I should from my bladder overfilling. And some burning when I've had UTIs. I hope you're able to get some answers for yourself soon! Take care & let us know how things go, :-)melissa

Roselover - I can totally empathize with the weight loss but not the right way. When I started losing during/after my hospital stay the first 10lbs or so were okay for me as I'd never shed extra weight I'd gained after my spine surgery a year and a half ago. But even though the lesser number on the scale was okay, I knew - as did my body & the way it felt - that it wasn't the right way to be losing it & thus I still felt horrible. Unfortunately I had to initially argue with docs to make them acknowledge the same thing. Re: the juice diet Steph mentioned, the idea of ensuring you drink a certain amount every half hour is a GREAT ideal; when your body is rebelling against food & even liquids, it is SO easy to not get enough in, which as we all know then makes things even worse. In terms of what liquids to drink, I definitely used some regular juices, gatorade, etc. too, but the Boost Breeze was good as it also has protein in it....something that normal clear liquids do not. FYI, I was able to find it at both my local Walgreens & RiteAid; it's harder to find than the regular Boost/Ensure drinks & a bit more expensive as there are not store brands or competition as of yet for it. Still, it kept me out of the hospital & off a feeding tube at times so I was thankful for it. I also want to second the baby food recommendation. I was able to do it too at times & particularly when I couldn't manage to make my own food, couldn't tolerate much, & mom wasn't in town it helped. In particular I would recommend a drink that Gerber makes - a sort of thin smoothie deemed a "juice & yogurt blend." The packaging was great for me b/c of the small size. One other recommendation that I was able to tolerate before I could tolerate the regular Boosts/Ensures, and that I continued to appreciate for variety-sake, is Snapple One-A-Day drinks. They're a think smoothie consistency & have a comperable nutritional profile to Boosts/Ensures minus the fat (probably why I could tolerate them more readily). They come in several flavors but be cautious of the low-carb version...they don't have near the nutritional content and have lots of artificial filler but are packaged very similarly. Hang in there & take care of yourself the best you can. :-)melissa

Thanks for the replies... mom4cem - That's awesome that you felt so much better on the prednisone. For the sinus trouble you would have been on a MUCH higher dose, which is why it's not the safest to be on it for long. The cortisol (hydrocortisone actually...the body converts it into cortisol) that I've been put on is different in that I'm on a really small dose that is only meant to replace what should naturally be in one's body to begin with; thus the "normal" steroid side-effects should not come to pass. Still, you may have a valid observation in terms of your body & the possibility of an inflammatory mechanism; it makes sense to me. Poohbear- (I love your name!) Thanks for the book/website resource...I'm definitely going to look at it. Ernie - I've actually heard of more people in your boat than the opposite! Thanks again to all, :-)melissa

Vanderbilt recently updated their website (actually while I was there ) and it includes some new info that I haven't entirely gotten through yet but appears to be a good resource. It is fairly technical but I wanted to make you all aware of it. The main site is http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4770 Then click on "learning resources" from the menu on the left. Alternately, you can go directly to either "Autonomic Miscellany", a search engine of sorts for all different autonomic 'stuff' at: http://www.mc.vanderbilt.edu/gcrc/ad_center/automisc.html And directly to "Autonomic Pharmacology", which is actually a 30 page print-out from Dr. Robertson's Pharmacology 501 course at: http://www.mc.vanderbilt.edu/gcrc/ad_cente...tonomicsPDF.pdf FYI, I already noticed the typo at the top of the Autonomic Miscellany page (it says "Autonomic Dysynction" and am going to email Dr. Raj about it (he's the web page guro). Although I think it's sort of cool sounding... :-)melissa

Hi Carmen - check out my post re: book recommendations. the cereal for dinner book would be GREAT for what you're asking about. and also in terms of your inquiry re:marriage. Good luck getting the group(s) started! :-)melissa

Hello all - First off, I HAVE read all of the former posts regarding cortisol highs & lows & what not so I'm not trying to reinvent the wheel. My question is if anyone other than futurehope has had the more sensitive Insulin Response Testing (shows breakdown in body's ability to respond normally to stress with production of additional cortisol)? Futurehope, I know that you had the testing & were unable to tolerate the cortisol pills. I think we probably saw the same doctor...at Union Memorial via Dr. K? I too have had struggles with the office staff but like him a lot. My initial adrenal tests were also normal but the more sensitive insulin test was not; my cortisol decreased when it was supposed to increase. FYI, though, he actually does it at his own office now; a NP actually did the test & was great - both interested in me & in answering all of my questions, a rare combo! I'm wondering if you felt any different prior to having to stop the meds it for the heartburn? I too am on 15mg in the AM & 5 in the PM, although I was told to take the 5 at 4pm...hmmm... I was just started on the cortisol replacement (hydrocortinsone) & despite my reluctance to add an additional med am intrigued by the possibility of this being another piece of the puzzle. I've only taken it for a day & nothing good or bad. I wasn't anticipating such, but with me you never know:-) I know that some have addison's but am wondering if anyone else has this cortisol-deficiency/unresponsiveness issue? It's odd b/c while tons of deficiency symptoms are eerily similar to autonomic problems, it seems more common for cortisol levels to be high at times of illness, stress, etc. I called my mom to tell her I was officially not stressed enough since my cortisol was too low. Ha. Since the problem for me seems to be that my body doesn't adjust its production of cortisol normally in response to physical stress, I'm wondering if it could have something to do with how poorly my body reacted after my GB surgery in March? We have blamed it on some combo of my wacky body & a rxn to the pain meds, but perhaps there's something to the cortisol thing... I'd love anyone's thoughts... :-)melissa

The short answer: Too many The long answer: Currently/actively: Primary (Family Practitioner) Neurologist (local autonomic doc) Cardiologist/Electrophysiologist Gastroenterologist Endocrinologist Urologist (2 of them - local & Vandy) Pharmacologist (Vanderbilt autonomic doc) Allergist Dermatologist OBGYN Opthamologist If I included surgeons who have released me in Nov & March, I'd have a Neurosurgeon & a General Surgeon to add. If I included docs who I've fired there would be 2 add'l GIs. If I included the doc who fired himself (told me I was "beyond his expertise"), there would be an add'l Cardio/EP. If I included docs I've made appointments with for the coming fall in anticipation of my move we'd be in real trouble! So...like I said...too many... :-)melissa

Hi all ? I?ve been working on & am finally posting my ?back from Vanderbilt? report. I don?t know how with the lengthiness, but feel free to ask if you have any other questions or if anything needs clarification. If you don?t want the pre-Vanderbilt lead-in (I added it per Emily?s request so she gets the blame...hehe), skip to the ?Vanderbilt here I come? heading. I cannot believe I wrote so much! Anyone who tackles any or all of it should get an award, but it will give you a true picture of the entire visit?and then some? melissa Where I'd been... Two years ago I filled out paperwork to send to Vanderbilt but never sent it. I likely would have gotten in then too but for me I wasn?t ready to do the cross-country inpatient gig as I was holding down a job, albeit somewhat creatively, and hanging in there okay symptom-wise. Things were not great but I was holding steady. Without going into the detail of my up & down history (literally & figuratively), I was originally diagnosed with NCS in 1997 with POTS added during a major crash in 2002 that all but kept me out of my last semester of school (I managed by writing papers via laptop). I even had a year plus at one point where I was off meds. In 2003 I had a cervical fusion due to injury from a black-out & subsequent fall down a flight of stairs (in 2002). Amazingly last summer I was pretty good on meds & as long as I didn?t have to stand for long was pleased with my progress. I was running & swimming & playing rec softball ? even in heat ? and doing pretty darn okay?better than in years?in July Dr. Grubb ?released? me with a ?call if you need to? which was not my typical every 6 months gig. I was pretty psyched. I had a crash in Aug when I caught a bug but rebounded decently after and again did well until November. Over the years I?ve tried various combos of Florinef, salt pills, K-Dur (potassium) & Toprol; most recently (pre-Vanderbilt) midodrine, concerta, lexapro & birth control (to skip periods) with compression hose, fluids, &salt (in addition to various allergy & GI meds). And then the **** hit the fan? Literally and figuratively. Early in the fall I started noticing a bit of blood when I went to the bathroom but didn?t think much of it?I figured it was some hemorrhoids/irritation from constipation as I?d had that a few years back so tried a few things that had helped then but to no avail. It was increasing a bit and was a bit painful; I tried for an appointment with my GI doc but couldn?t get one until the end of January. In early Nov I had a regular ?well woman? GYN visit with my primary & mentioned it to her. She looked and saw a few fissures (aka cuts) which she said was a bit odd but was not concerned; it explained the blood & while I needed to see my GI it was nothing to be worried about in the meantime. Two weeks later I went to the bathroom and was pretty taken aback when the toilet was filled with blood. Sorry for the graphics, but there?s no nice way to say it. While I generally must be dragged to a hospital it didn?t take much convincing so off I went, leaving my office while shouting something to the office manager, thankful I was wearing black pants & determined to drive myself. Within 48 hours I received a Dx of Ulcerative Colitis with the bonus of an atypical ovarian cyst. Yippee. Oddly enough I was pleased to have something ?normal? as opposed to my typical autonomic craziness. Is that nuts or what? But of course the dehydration & blood loss & colonoscopy prep and whatnot wacked my system out enough that I also started passing out. And kept doing so even once I was allowed to eat & drink. So I was sent to the telemetry unit, my midodrine was upped & my body allowed to settle for a few days and I thought the fun was over. Little did I know? Treading water?trying to get back on track... I had appetite issues & things that I could file under the ulcerative colitis quite nicely, but overall felt pretty wiped out. The holidays allowed me to take it easier work-wise and I already had a long break home for Christmas scheduled which allowed me to rest more. My appetite wasn?t much & I didn?t gain back the 10 pounds I?d lost, but I was holding steady with the help of some Boosts. Then a few days after Christmas I actually threw up. It happened several times over the next few days & during my lunch break on my first day back at work on the 30th ? after not keeping anything down all day ? I blacked out & woke up in the ambulance. Or not?more than just the HR/BP start to rebel... Back to the hospital I went, this time admitted b/c I couldn?t even manage to keep down a sip of fluid. And that?s how it went for a few days. The dietician started talking to me about feeding tubes and TPN. I couldn?t even keep down the Boosts/Ensures. And then I started feeling ?pregnant??not really but rather my belly was expanding & I realized I hadn?t gone to the bathroom in a bit despite being pumped with fluids. And thus the discovery that my bladder had decided to shut down too. When I was cathed I was told that if it was more than 600cc it had to stay in; I had over 2200cc in my bladder and couldn?t go at all on my own. After several trials over the next few days I was discharged with a foley cath and a leg bag. Fun fun fun. But at least I was keeping down some food, albeit negligible, and Boost Breezes. I still couldn?t handle regular Boosts/Ensures. But my primary doc knew I needed to get out of the hospital if at all possible for everyone?s sanity & b/c they weren?t really helping anything. The indwelling catheter was replaced with my learning to cath myself after various trials & testing confirmed my no-longer-working-too-great bladder (neurogenic bladder) within a month or so. I never thought I?d be excited about cathing myself, but I was/am after having the foley & leg bag for almost a month!! I kept myself from passing out largely by not staying up for too long as my HR & BP were pretty moody, particularly high HR. I had more autonomic testing done locally that confirmed things we already knew but also gave me the Autonomic Neuropathy diagnosis. My GI situation was still pretty alarming & my weight was continuing to go down b/c I was throwing up at least every few days with no appetite & lots of nausea & discomfort. And I had to stop the Reglan as it was starting to cause side effects. My primary sent me for a GB scan though & when it was a bit odd sent me to a surgeon who had me get a hyda-scan done which showed that my gallbladder function was pretty minimal (8%). So out came the gallbladder. We didn?t think it would necessarily fix everything but after the initial mess of post-surgery days (major issues with painkillers &/or anesthesia, 5 days in the hospital, etc.) there was an improvement in some of my GI symptoms. I could keep Boosts/Ensures down, a bigger variety (although not amount) of food, and the pain was gone. But I was still throwing up, still loosing weight, & still having overall major motility issues. So?good but not good?and that?s the short version. Reaching Out?anywhere & everywhere Dr. Grubb ? my longtime doc ? was out on leave himself, Dr. Calkins at Hopkins told me I was now beyond his scope, & my primary care doc wrote in my records ?we need expert help!? I did appreciate the honesty of all but I still wanted/needed direction! I did have some success with Dr. Khurana in Baltimore but once he knew Vanderbilt was a possibility he also was excited to send me off to the pros He did a lot of testing in the meantime (updated but short tilt, valsalva, deep breathing, sweat test, lots of blood work, etc.) but didn?t want to keep switching meds around only to have them do it again. My GI doc did get me on Zelnorm which after about a month seemed to be helping some?both with upper & lower GI, although not enough to quell. Still, any improvement was exciting. I?d been out of work on disability since the new years? hospital stay so I was up for anything. So many of my docs agreed that things all were connected to the autonomic problems and yet no one person was able to truly connect everything. Vanderbilt?here I come After sending my records and filling our some of their paperwork, I was tentatively accepted into a 2-wk inpatient study at Vanderbilt via a phone call in mid-March. The ?tentative? was due to the fact that it would not be official until I was actually there & able to pass the study protocol criteria in person. Thus I would be admitted under my own health insurance for 24-36 hours and then, upon qualifying, would be switched to a research patient. This was by far the most nerve-wracking element of the ordeal; as I?ve mentioned previously I was pretty darn terrified of being ?kicked out? right away. I traveled to Nashville on May 5th & met my mother there as I was okay to travel myself with the help of a wheelchair as I was still on my meds. And then I had to wean off my meds; I had to do this earlier for testing with Dr. Khurana so we knew it wouldn?t be pretty. Those few days are honestly a blur; I think a combo of no meds in addition to withdrawal from some of them, as I was actually better after several days than during the first two, particularly cognitively. I hibernated in the hotel room while mom kept me hydrated & fed the best she could & explored Nashville a bit on foot. My poor mom ? I actually gave her a blank mother?s day card b/c I couldn?t write in it. (I?d had the foresight to buy them super early but then failed to take the next step, so Grandma, Nana & the Aunts never even got theirs. So much for my advanced planning And then on Monday May 9th it was off to Vanderbilt. The actual admission was a bit crazy as we had to go through the regular/main hospital & waited quite awhile; if there hadn?t been a recliner in the lobby I would have been in trouble. But eventually they wheeled me away, through lots of tunnels & whatnot, to the Clinical Research Center, which is in a different building, actually the original Vanderbilt Hospital of many years ago. And my worries about getting kicked out. I had no doubt that my HR/BP would qualify me but was worried about the catecholamine level requirement; if only I?d know that it wasn?t really a requirement b/c the test results take weeks to come back! I wouldn?t have been nearly as concerned. Regardless though I was an overachiever & my HR qualified me in less than 24 hours?not the best thing to excel at but oh well. So then I knew I was there for the long haul with a scheduled discharge date of May 21st, just under 2 weeks total. Life at the Vanderbilt CRC (Clinical Research Center) In the beginning: The first few days included Autonomic Function Testing (Valsalva, Hyperventilation, Cold Pressor, Metronome Breathing & Handgrip) as well as an overnight postural BP/HR study (stay flat from certain time late evening until allowed to get up in morning with lots of particular measurements & blood/urine tests before & after), blood volume study, urine collections (24hrs), and pretty regular orthostatic BP/HR readings?done correctly! It was great to be somewhere where people ?got it? without much explanation. The resident on rotation at the research center was fairly new so was pretty ?raw? in her autonomic knowledge but was interested in learning; the nurses & other docs were all pretty seasoned & knowledgeable. My primary doc was Dr. Biaggioni ? who was wonderful. He & Dr. Raj & Dr. Robertson alternate months for the Autonomic Dysfunction Center; Dr. Robertson was out-of-town the entire time I was there (too bad...the other docs said he would have liked to talk to me too )but Dr. Raj did my blood volume testing (& delivered my mail one day!) There was another doc ? a fellow ? who was actually a pediatric cardiologist getting his masters in clinical research who did my intake interview & was a great help when we had a bit of an issue with one of the nurses one day (no place is perfect . Bonnie Black, who had been the one I?d talked & emailed with prior to my arrival, is the coordinator on the unit & very helpful, although also very busy as someone else is on leave so she?s pretty much doing the work of two these days. All in all though she?s great and even brought in an ?activity box? with exercise bands, handouts, magazines, & books (which I?m now helping her to add to!) One additional doc did a ?pain test? ? something solely for research data & nothing to tell any one individual anything but I was happy to help since I was there. There were also several questionnaires/surveys to fill out which were best to do these first few days. They took a bit of time but were nothing too bothersome; I actually found them to be quite interesting. Food: The diet was also regulated in order to control test results & not interfere with bloodwork. Officially this meant a ?150 mEq Sodium, 60-80 mEq Potassium, Low Monoamine, Methylxanthine Free Diet? which translated into no bananas, no tomato products, nothing with preservatives, no chocolate, no cheese, & lots more. Sounds fun, eh? The head dietician came to talk to me right away & I was shown the weekly menu & given extra snacks that I was encouraged to eat b/c of my weight loss/GI issues, but this wasn?t the norm (as it didn?t occur with my roommate). Largely there weren?t menu choices like one usually has in the hospital although there was an alternative menu that had several things you could always request as substitutions for the standard fare. Overall the food was decent ? some quite good - although for someone who is used to a high-salt diet I missed the salt shaker. The odd thing was that some of the foods were quite salty; it?s just that they put the salt on what they felt inclined to put the salt on! There?s a lengthy list of ?not allowed? foods & in general you?re not allowed to eat anything other than what they give you. If there?s something you want though that isn?t on the ?no? list you can get it approved, which I did for some Ben & Jerry?s sorbet when we found that (at the adjoining Children?s Hospital). The food service folk were great though & even started bringing my mom trays! The amount of food was a lot for me & I got sick several times, but everyone tried to work with things the best we could. Med Trials: The only meds I was allowed while there were Flonase (nasal spray for allergies) & Levlite (birth control, although I take it to regulate wacky BP changes I get with my period). About 3 days into my stay the ?Med Trials? started, which was the primary study I was accepted for, and these continued on a daily basis for the next 8 days or so. They brought with them their own routine which consisted of the following: 6:30am ? wake up, bathroom, weight & breakfast (b/c had to eat 2hrs prior to start of study); IV in on days that required blood draws (about half of the days, grouped in twos). Then it was naptime/ back to sleep for me on most days until trial time? 8:45ish ? start medication trial. This consisted of sitting still in a chair, feet on the floor with a BP/HR cuff on. I could (in theory) read, write, talk a bit, etc as long as nothing eliciting too much exertion/ changes in HR/BP. The trial was as follows: 30min ? Seated Baseline; HR/BP every 10min 10min ? Standing Baseline; HR/BP at 1, 3, 5 & 10min (if able) **Med administered** 60min ? Seated post-med; HR/BP every10 min 10min ? Standing 1hr post-med; HR/BP at 1, 3, 5 & 10min 50min ? Seated; HR/BP every 10min 10min ? Standing 2hr post-med; HR/BP at 1, 3, 5 & 10min 50min ? Seated; HR/BP every 10min 10min ? Standing 3hr post-med; HR/BP at 1, 3, 5 & 10min 50min ? Seated; HR/BP every 10min 10min ? Standing 4hr post-med; HR/BP at 1, 3, 5 & 10min Fini?time to lay down?get some fluids?eat lunch(about 2pm) You?re not allowed to eat or drink during the studies (unless water is part of the ?med? being administered). And there?s no getting up unless absolutely necessary (i.e. to desperately go to the bathroom?I had to once). In terms of the 10min stands, they are sometimes stopped earlier depending on one?s vitals; if you?re really not feeling well you?re supposed to tell the nurse if possible so she can take your vital right then before you sit, but if you don?t think you can wait they say to sit. I blacked out on them once & came pretty close one other time. The trial meds are from a pretty big list that you see ahead of time but obviously you don?t know what you?re getting on a given day, with a few exceptions. One of the tests is just 16oz of water (quickly) as the ?med? which is obviously known; it didn?t do me much good but had the advantage of only being about a 3hr hour study (as opposed to the typical almost 5hr study). There?s also a day wherein you don?t take anything (which you know) but still do the same routine, and sometimes a day with a placebo (which you don?t know as you actually do take a pill). There are rating forms to fill out each day either during or after the med trials to rate symptoms & add any additional comments although they?re not turned in until the trials are all over. The tests were rough on me as I was really tachycardic on most days just from sitting, much less from standing. But everyone there ?got it? and cared and realized how un-fun it all was which helped a lot. On most days you?re then ?free? to do as you please in the afternoons, including leaving if you?re able. I can?t do much off meds so was fairly limited, but on days that I felt better my mom & I (in a wheelchair) took mini ?field trips? just within the hospital?.outside when it wasn?t too warm, to the gift shop & to the children?s hospital (it?s new & beautiful with gardens, a resource center, chapel, artwork, etc)?you simply have to tell you?re nurse that you?re leaving, although if you?re going to leave the Vanderbilt campus you need to get a pass from Bonnie. When my Dad came for the weekend & had a rental car he took us for a drive around the city but we couldn?t fit the wheelchair in the car so it was only a car-tour. There were some days when going out just wasn?t an option for me but it was good to get some fresh air when possible. Misc. The resident was in to see me every day, and Dr. B, Bonnie, & a dietician on most days. I had most of my nurses for at least several nights/days which was good for continuity & I really liked most all of them. It was great being in an environment where people were explaining things to me as opposed to the other way around for once?a first for me in a hospital setting. The floor was quite quiet and other than early morning wake-ups I was left alone from right before bedtime (if they hadn?t come yet for my pre-bed orthostatics & I was ready to sleep I could call them so I wouldn?t have to wake up again) until the early morn. There were no more than 6 people on the entire unit at once the whole time I was there and only one or two other autonomic patients. I only met the roommate I had the first 3 days and a young kid (about 12) who was there for a one night study (not autonomic). There were lots of outpatients in and out that the nurses were also working with though they weren?t for autonomic studies. I had some really good discussions with Dr. Biaggioni about symptoms, treatment options, prognosis, etc. and while there are still a lot of things without answers it was still helpful. Even at an autonomic center I didn?t fit in a box exactly?.in other words, how Bonnie put it was that I fit the OI/POTS diagnosis as well as NCS at times (aka when I faint), but also have other elements that generally are part of a PAF constellation. What can I say; I?m unique. (Interject?a funny Dr. B story. The first time my mom met him, he walked in to find her sorting laundry on my bed as they had a washer/drying on the unit. She was embarrassed and apologizing & he was getting a kick out of it & asked her if he could bring his for her to do to. She was like, sure, I?ll do anything if you?re going to help us out?that?s the least I could do. Of course he didn?t, but it was pretty funny & more so by his cute little smile & rosy cheeks.) They were fairly interested in my bladder/urology issues and consulted with a urologist who they work with (who specializes in neuro issues & has worked with autonomic patients) but were unable to orchestrate him actually seeing me while I was there. It was not a typical aspect of the study, but they had me keep track of my urine output ? naturally & cathing ? the entire time I was there. In terms of GI issues they didn?t have a lot to offer other than encouraging me to pursue a motility specialist on my own. I was at my lowest weight while there but did manage to at least maintain over the stay rather than keep losing. Although oddly enough, on one of the med trial days I felt much better GI-wise?not nearly as bloated & less nausea. And it ends up that was the day of my best med trial, including a med that often gives people stomach cramps as a side effect. So?the thought it that the side effect may be working to my advantage. Yippee! I had already okayed them taking blood for DNA/genetic research Dr. Robertson is doing and then they asked my mom too; she okayed it which she gets major props for as she wasn?t too thrilled about the blood draw. Since my dad came in for a long weekend he then gave his as well, and had to give it out of his hand since he?s such a hard draw?how sweet. So both of my parents gave their genetic material to further the cause?thanks mom & dad! After my realization of how nice it was on one of my ?field trips? to sit at the campus bookstore in the wheelchair as opposed to my typical lying on the floor routine we had the ?wheelchair discussion??something I should have had with a doc long ago probably but wasn?t ready to until now. And so I came home with a prescription for a wheelchair. We talked about how, although hope?s eternal, things aren?t incredibly likely to be completely okay for me again and how I could be worse or improved a year out. The goal and hope, though, was to get meds adjusted to a point where maybe I could at least work towards a bit more of a normal life In my mind that means grad school, which they agreed was a possibility but not a certainty; again nothing new, but from the gurus. Upon my asking, Dr. B was also supportive of my trying a cardiac rehab program. There was some bloodwork they wanted to send off to Mayo Clinic for me too but ? go Dr. K ? Dr. Khurana had already had me do the exact same thing. I hadn?t gotten any results back yet so didn?t have them in the recent testing records I?d brought with me to Vandy, but Dr. B was impressed when I pulled out the scripts that I?d copied before the tests were done. Wrapping things up: The last day and a half we had a lot of the ?closing conversations? about going forward and the trial meds were ?revealed? to me. My official diagnosis remained the same ? Autonomic Neuropathy, Orthostatic Intolerance, Neurogenic Bladder/Retention, & IBS/Slow Motility (gastroparesis & constipation). We discussed the med & treatment options & the last day I was on the meds that were planned for my discharge (in order to try them out up and about a bit ?for real? as opposed to just during a study.) I was discharged on: NEW Inderal/ Propranolol 10mg TID NEW Mestinon/ Pyridostigmine 30mg TID NEW DDAVP .2mg daily (bedtime) Proamatine/ Midodrine 5-10mg PRN Zelnorm 6mg BID Protonix 40mg daily Clarinex 5mg daily (AM) Mesalamine (enema) 4g PRN (bedtime) Levlite daily (evening) Flonase TID I was taken off (or rather not put back on) Concerta 54mg daily (AM) & Lexapro 20mg daily (PM) as well as taken off regularly-scheduled Midodrine (at first ? I?ve since been put back on it). The combination of very-small doses of Inderal (beta-blocker) and Mestinon (cholergenic, usually for myasthenia gravis, increases neurotransmitter transmission) were the best for me from the medication trials. Upon looking at my urine output data it was realized that my body was putting out lots more overnight than during the day; for me this didn?t wake me up b/c of my bladder problems but rather I would be empty upon going to bed (after cathing) and then put out over 1000cc first thing in the early morning (usually about 25-30% on own, the rest cathing). This isn?t normal, isn?t too great on my bladder, and could be part of why I?m so horribly ?washed out? in the mornings. Thus the DDAVP (originally for diabetes insipedis) in the evening before bed to help counteract this. I left with a recommendation for a cardiac rehab program & referral for a wheelchair. And the standard diet orders of high salt & fluids. And encouragement to continue to wear my compression hose as able (I get a rash from them if it?s too warm.) They also gave me a liter of IV fluids before I left to ?pump me up.? And my discharge orders specify that IV fluids are a good thing for me when having a rough time so that I can take it to an urgent care clinic & just hand it over as opposed to having to explain as I?ve had to do many a time. Bonnie also asked me if I?d be interested in coming back for studies in the future and I gave the affirmative. By the time I left, I?d officially participated in the following studies: 1. Genetic Basis of Autonomic Dysfunction 2. Dopamine Beta-Hydroxylase in Human Cardiovascular Control, Determination of Genotype & Phenotype 3. Screening for Autonomic Dysfunction 4. The Pathophysiology of Orthostatic Intolerance (Total Blood Volume & Psychometric Testing attachments) 5. Treatment of Orthostatic Intolerance Although my discharge was scheduled for Saturday the 21st I was actually able to leave the evening of the 20th. Seemingly that?s pretty much the norm but for those traveling home the day of discharge they don?t want to kick people out late in the day & expect them to travel. My mom & I were already planning on not leaving until Sunday & had a place to stay so that wasn?t an issue for us. And pumped up & on my new meds, I was ready for a change of scenery. Never mind a salt shaker And what a change of scenery. During my stay, my mom had been able to move into the Hospital Hospitality House, a place I?d found out about before we headed south but that you can?t make a reservation for in advance. Think Ronald McDonald House for adults. So that?s where we headed back to, via a shuttle from the hospital, and it was REALLY nice. Although it has been in existence for years, the current building is only about a year old, has a beautiful garden out back, & is just so much nicer than a hotel room (or a hospital!), never mind helping with finances & food logistics greatly. There are 10 rooms with up to 20 people total & it is simply a wonderful place. We were there until our flight back to Baltimore on Sunday afternoon which was uneventful. And mom, traveling with me for the first time since I?ve used wheelchairs at the airport, enjoyed the quick way through security! Moving Forward: Upon discharge I had been asked to email Bonnie in about a week to check-in regarding the new med regimen, symptoms, etc. After this, and as I?d been getting light-headed & feeling better the times that I added midodrine, it was okayed for me to add that back into my regular med regime. I hate taking more meds, but it makes me feel tons better which is the goal. There was quite a bit of mess with my records as it ended up a draft was sent to my primary care doc rather than the final copy. It was before the doc had written his discharge summary & had lots of incorrect/incomplete info in it, including saying that I had no follow-up needs! Pretty wild considering we?d been talking wheelchair use, cardiac rehab, staying on disability for an unknown amount of time, etc. Never mind that it had incorrect meds on it. I?m just glad that I found out & was able to persist, with my mom?s help, in getting it straightened out. It was VERY frustrating to say the least and while it has since been corrected, it was not a pleasant end to the stay that otherwise was a good experience. Once it did get straightened out though, including the doc?s summary notes, I was sent a copy to give to whatever docs need/want it, and my disability has been approved (based on it) through at least the end of August. Lessons learned: we shouldn?t have left Tennessee without the final if at all possible & persistence pays I am heading back to Vandy for outpatient follow-up in early August with both Dr. Biaggioni as well as the urologist I was not able to see when there for the studies, Dr. Milam. Dr. B had already given him my records but he is going to do further neurologic testing. I?ll hopefully stay at the Hospitality House while there. I tried to get in with a motility specialist there too but to no avail until later in the fall, and unfortunately Bonnie/Dr. B don?t have the connection with them to get me in any earlier. Luckily though I?m doing MUCH better GI-wise. I?ve gained 12+ pounds since my discharge & while a bit of it is probably from the DDAVP, a lot of it is definitely ?real? too. I have a better appetite & don?t get as nauseated. I don?t look like death warmed over at this weight so am thrilled. We?re thinking it?s a combo of the Zelnorm, which had already been helping some & the Mestinon, which can increase stomach contractions (usually an unwelcome side effect for folks but not me!) And then maybe just things getting a bit better on there own over time. I still get really bloated & am not where I was this time last year, but I?m eating real food and have only gotten sick 3 times since being back from Vandy, the best I?ve been since January. It is wonderful to not be living off of Boosts/Ensures. I?m by no means where I want to be but am doing better right now than I have been all year. The new med combo seems to be a good thing but of course being able to eat without getting so sick helps too. I just started the Cardiac Rehab last week which was pretty discouraging/frustrating as I could hardly do 10 ?easy? minutes on the recumbent bike & had to lay down on the floor afterward. It?s great to not have my HR up in the triple digits as soon as I sit up & continuing up as I continue to sit or try to stand. My tolerance for standing isn?t tons better b/c although my HR doesn?t get as high my BP drops, but my tolerance for sitting is TONS better. And I have my fitting for the wheelchair this coming week (delayed b/c of insurance craziness) but in the meantime have gotten over myself enough to use a wheelchair at the mall & at Walmart with much success. I?m not a huge shopper but it was so nice to be able to go without getting so ill, having to sit or lay on the floor, and being totally wiped for the rest of the day afterward. So as tough as it is I?m really glad I finally got rid of the pride & ego?or at least quelled them a bit I?ve continued to stay in touch with Bonnie (from Vanderbilt) via email and am currently ?making the rounds? with all my docs here as I?m looking toward moving back to the Midwest in the next month and a half or so. One bummer about being on the beta blocker now is having to stop my allergy shots?just too risky after discussion with the allergist; I?m hoping to hold onto the positive effect they?ve given me allergy-wise for at least a few seasons! Dr. Khurana had referred me to an endocrinologist here in Baltimore that some of his patients have had some luck with & whom I couldn?t get in with until post-Vanderbilt. When I asked Dr. B at Vandy what he thought he pretty much said why not, so I?ve since had testing there & found I have some issues with my pituitary gland communicating with my adrenals to release cortisol appropriately. That?s another topic for another time, but the fun continues?maybe another piece of the puzzle. But also another med

I'd been meaning to post these for awhile but the recent posts asking about info for moms & marriages got me off my behind. I'd recommend all of the following: The Etiquette of Illness: What to Say When You Can't Find the Words by: Susan Halpern (a cancer survivor & social worker herself) Highlights: a chapter on chronic illness & on patient-doctor relations Overall a GREAT book that I am considering purchasing (and that I'd like to slip to some I know as a not-so-subtle lesson!) Cereal For Dinner: Strategies, Shortcuts & Sanity for Moms Battling Illness by: Kristine Breese (who describes her own illness, including fainting & diagnosis of heart stopping during her tilt test!) Highlights: Good stuff even for non-moms re: friendships, hospital stays, asking for help, dealing with docs Celebrate Life...New Attitudes for Living with Chronic Illness by: Kathleen Lewis I read this awhile ago so don't remember specifics but just brought it home from the library again & figured I'd include it. I found all of these at my local library. I'd recommend them all... :-)melissa

Roselover - I'm glad everything went as it should...I was hoping & praying for you b/c while I've had many endoscopies without a problem, I actually had one on the 9th & had a wacky rxn to the sedation (or something) & had to be taken to the hospital. I was about to post about it & luckily saw your post first; I was SO glad as I cna only imagine how that could have worried you further! The frustration of waiting can be quite great; my inability to eat at times this year was helped by Boost Breeze too...it's a juice that's mch easier than regular Boost/Ensure, although not 100% complete like the juice Emily mentioned. Just do your best with food & especially with fluids... The only good part for you with the waiting - however frustrating - is that you'll be able to tell how each individual thing is helping, i.e the protonix. That can get negated when multiple changes/discoveries are made at once. My recent scope showed my tummy still full of food even though I hadn't eaten in over 12 hours, but my protonix has been doing its trick as my reflux was improved greatly since December. That's the anti-acid med that's worked best for me so perhaps it will for you too...I haven't had diarrhea but I have significantly slow motility from top to bottom so probably wouldn't notice a small change. I know with some meds that's symptom that can last a few days & then subside, but especially work on your hydration in the meantime. But I'm playing the waiting game too b/c I'm waiting for biopsy results & won't get them until my appointment on the 29th; my biopsies are small intestine for celiac disease b/c I've had positive blood tests for the antibodies. So we'll have to wait wait wait together. Hang in there & let us know when you find out. :-)melissa

Hi Danelle - I'll echo what many others have said. I, like most of us, would love to be on nothing but I wouldn't be able to function. Yet I would also say that you're right to want to understand what each is for, the reasoning behind them , and the expected timelines for decisions of whether they're doing anything positive. These are all reasonable & responsible questions. Especially as he is fairly new to the meds game. That said, I'm on 10 meds daily, not counting topical stuff or a few that are PRN and am confident of what each is doing individually. Like Nina I've tried being without each & my body just can't handle it. There are some I have been on at times that I have been able to get off of, though....some requiring a replacement (that was more favorable for some reason), some not. So as tempting as it is, don't get hung up on how many. But do keep up your desire to question & understand. Especially if you feel he is doing worse. Let us know how things go, :-)melissa

Hi - I don't think we've "talked" before, but it's great to hear that you're at least heading in the right direction. So many vanish from boards when they're doing better so it's great when people still chime in (I'm guilty of that...not here as I haven't been around too long but elsewhere...) Anyway, I just wanted to chime in with a "me too" in regard to more energy on a beta blocker. I'm on a REALLY small dose & in combo with other things (midodrine & mestinon amongst others), but for me they help b/c when my HR is so crazy high that in itself exhausts my body so much. Perhaps that's the same for you? Congrats & keep on keepin on....thanks for sharing your encouraging news, :-)melissa

LOL...thanks for sharing! it definitely gave me a laugh:-) hope your new meds are helping you get some better rest (even if they are "enhancing" your dreams)! :-)melissa

I too have major problems with extreme cold, and had them long before I had a problem with the heat. Now I can't tolerate either extreme, but I used to lifeguard in super-hot weather & was fine as long as I was hydrated but was a mess if it got chilly...even to the point of blacking out. Now I have about a 5 degree range of comfort & 10-15 deg of safety. So...you're not the only one. Dr. Grubb used to tell me it wasn't quite as typical as the heat-sensitivity but definitely wasn't unheard of. :-)melissa

Jan - You and Jeff are both in my prayers & will continue to be. I actually was just reading a book entitled The Anatomy of Hope: Hope in the Face of Illness and one of the illustrations was of a gentleman - a doctor himself - with endstage stomach cancer who fully recovered against anyone's expectations...so anything is possible! He too had some of his intestine reconstructed into a new "esophagus". In terms of the choice of hospitals, I would do what you feel most comfortable with in your heart. The "biggest & best" are not going to always be such, especially if you feel great about the doc you do have & know that he/she is just as up-to-speed in terms of treatment advances and the like. There are pros and cons to the big and the small, ya know? Think and pray over it & perhaps even talk it over with your current doc? Maybe even ask if he/she will tell you if things are at a point where he/she isn't comfortable handling them? Hang in there and keep us updated. In terms of trying to organize a specific time to pray, I'd be happy to organize it if you don't mind it being someone who you don't really know. I'll send you a message... :-)melissa

Em et al - I hope that I'm not stepping on others feet due since I'm pretty new here myself, but I'd been lurking long before posting...and have been involved elsewhere & am not new to the illness thing. So...just a few thoughts... I think that a lot of it is about balance. And common sense. I hope that doesn't sounds insulting....it is not meant to. What I mean is that I am pretty certain there's no intent for you or anyone else Em to be super worried about what is or isn't allowed. In my opinion (correct me if I'm wrong), many of the things you mentioned are VERY related, i.e. a good wheelchair outing, a good read, etc. For me these things are VERY related...I'm just now getting over the wheelchair "hump" and am glad to be able to read at all as at my worst I haven't been able to, ya know? I'm sure there are some things that are borderline, but I dunno...I keep coming back to the balance thing.... I don't know what my comments are worth and please don't take them as anything fool-proof. I"m fully aware that I'm just beginning to approach the not-quite-a-newbie category:-) Like has been mentioned, it saddens me that Michelle had to put so much into revamping things and just as much that others are feeling worried now about what is or isn't okay to post. In terms of new folks navigating, I do agree that while I come here for people who "get it" it can also be good to see non-illness related things b/c so often the approach taken is so different than those for whom illness is not an issue, ya know? It's just a different perspective....And then of course there's the fact that it is good to talk about other stuff. I do agree with that wholeheartedly, but am not sure where the line is to be drawn...not an easy thing to sort out... One thought, which I know is easier said than done, is perhaps a separate category for "fun stuff" or the like? Subtitle could be "stuff for when you need to get your mind off of docs, meds, & BPs"? Just a thought...I know that lots of separate strands can be a bit nuts & counterproductive as one never knows where things should truly go, but one of that nature would seemingly be fairly self-explanatory... Well, so much for keeping it short. Again, I hope I'm not stepping on any toes. I think that first and foremost this place is awesome and so very appreciated by myself and so many others...more than even make themselves known I'm sure. Things that are superficial are usually fairly "easy" and "conflict"-free....so in a way, it's a compliment that tougher issues/discussions arise...if no one cared about the board, no one would probably bother to voice thoughts/feelings at all, ya know? Hang in there, ya'll. I know I'm not yet a veteran, but as a newbie who's planning on sticking around for the long haul, I need you all! :-)melissa

Happy Happy Birthday...and thanks too for sharing with us... :-)melissa

Heya Emily- I TOTALLY "get" where you're coming from. I don't have such a firm "anniversary" per se of originally getting sick, but still can get pretty bummed with anniversaries of particular things. Just last week I went to this seminar thing that I had gone to last year when I was doing better - not great, but wonderful compared to these days - and I almost didn't go. I'm glad that I did, but I almost had a nervous breakdown on the way there. The example sounds a bit trite, but it's for an organization called "Active Survivor Network" that in itself is about surviving/thriving through illness so that made it more significant. But, anyhow, I know that I'd totally get hung up on it if I had a more specific date. This year I've had a rough time even with months since my fairly drastic shifts downward, i.e. having to stop work entirely, other body systems wacking out, etc.. I had to go clean out my cube at work a few weeks ago with my mom & it was so tough...not b/c I loved my job (I had been planning on leaving this June/July anyway) but b/c of how I had to leave. And b/c there were Christmas decorations/cards strewn about, etc....just fairly blatant symbolism of my nonexistant, or rather hospital-existant year since December. Sort of blew my dreams of handing my resignation letter over to my supervisor in order to head to grad school, ya know? Okay, so I've now rambled about me rather than responded to you...sorry:-) Regardless, I "get" it. Although that seems to be pretty much par for us these days, eh? I don't have any specific traditions/rituals, but I'd say that if that's something that might be good for you, give it a try. Hang in there, Melissa:-)

Hi Lukky- Welcome! I too took a while to find the forum on this site....funny thing is I knew about the site just didn't realize it had a forum. I was involved with DYNA for several years & still am put only very peripherally as I'm a bit on the "old" side (not in general, but as far as DYNA goes.) DYNA's a great group though, so I'm glad that you've gotten involved. As far as an EP goes, it totally depends on the doc; honestly that goes for any/every specialty out there, ya know? While there are some that tend to know about dysautonomias more than others, there are always surprises - both good and bad. It sounds like your cardiologist has some clue & thus probably has good reason to be pointing you to the EP...is she recommending someone in particular or just an EP in general. Good luck...the doc things is definitely tough, as most on here can attest to. :-)melissa