Sunfish

Hello again - just wanted to post en empathy post for the SSDI application...the 500 letter thing is super-annoying, eh? and then it gives you loads of space for other things, like the side effect of a single med has more than double that! anyway, i just finished my online app today & in all spent a total of at least 12 hours on it... not all today!)...almost unbelievable. and to think that it's the same thing that one can also do in a 1-2 hour phone or in person appointment...even crazier. anyway, good luck with things. and i'm sorry about the horse:-( my aunt has horses & i used to ride a lot so know how attached i was to the horses. :-)melissa

Man...I wasn't necessarily in need of any ideas but I'm still enjoying everyone's thoughts, suggestions, links, etc...thanks everyone!! :-)melissa p.s. in theory your auction idea sounds great, and i don't at all want to quelch any possibilities, but i've been involved with silent auctions locally over the years & they are A LOT of work...more than one would ever imagine (aren't most things?)...just wanted to give you the heads up!

Hi Deb - I said a quick hello under the tilt table test post, but again welcome. My usual byline is "sorry you have to be here but glad you found us." You'll learn a lot just browsing around the site & many others here relate to your frustration. This may sound odd, but as rotten as it is to not have answers, it is at least a good thing that your docs are frustrated too...it means they're not blowing you off, which many have happen with various docs. Hopefully their frustration will help them to keep helping you... Regarding specific symptoms, I can relate to some of what you mentioned & not to a few other things. But everything you listed I've heard at least someone else on the site describe so it's not just you... I definitely get "the shakes" when I pass out or am at a point where I'm close to it (and then lay down as you mentioned doing.) If I'm in a really bad place I'll have them for hours on end despite laying down. I generally don't have the vertigo/vibrating/vision issue but several years ago had a few months wherein I did get really bizarre vertigo/spinning spells and they were absolutely miserable. We never pinpointed what brought them on or made them go away other than that it was a time I was doing horribly in terms of my autonomic symptoms in general, but I'm glad to say I haven't had them at all recently. (thanks...you helped me realize one of the few things i'm not dealing with these days!) Others may have more to offer in that realm. I'm not familiar with the eye problem your opthamologist found but various parts of the eye are controlled by the autonomic nervous system. I personally have problems focusing at times. Did the eye doc have anything to offer in terms of what to actually DO treatment-wise for the problem? Or can you ask him now since the ear-causation didn't bear any fruit? I can relate though to not being able to deal with the visual stimulation when I'm doing well but generally at those times I don't have any interest or ability to go to a store anyway...I haven't been able to go to stores for long periods of time without sitting/laying breaks for some time, to varying degrees, and have just started to use a wheelchair to get some independence back...definitely hard on my pride/ego but ultimately a good & freeing thing for me in terms of where I'm at now. When I'm tachycardic I also get very short of breath so can totally relate to that. Do you know what your heart rate did on the tilt table test? Many on this site don't have BPs that drop but have HRs that go up (or down) to the extreme. For me it depends on the day, but there are times when my BP stays steady low-normal so while your normal tilt does have meaning it's not the ultimate yes or no to your having an autonomic problem....there are false positives and negatives quite often. I'm sorry you've had to take leave from work but glad you have the ability to do so. You'll find that folks on the board range every gamut in terms of what they're able to do with jobs, school, etc...and it often changes over time...in both directions. Currently I"m on long term disability through my employer and haven't been able to work since december but before that I've had varying degrees of working & schooling, including times of major improvement, so things can definitely turn around for you...I get your frustration age-wise too as I'm 25...there's lots of good input though from everyone on the forum of every age stage & situation. And now that you've had your introduction to my rambling I"ll let you go...feel free to chime in, ask questions, etc...either on the board or by emailing or private messaging...there are a lot of good resources on the board for the taking. hang in there! :-)melissa p.s. there are also lots of links posted at the heading of the forum boards (and in various posts throughout the board...but those aren't so easy to find!!)

Hi - I posted the following a few days ago under the old mestinon thread not realizing how very old it was (someone had "resurrected" it)... I too am a new partaker of the mestinon, although it was NOT good for me on its own. It was part of the med trials I participated in at Vanderbilt & did well for me in combo with inderal (beta blocker). It wasn't part of the trial but I'm also on midodrine. (more info in my "Vanderbilt Chronicles" post...er, book) Other stuff too but those are the primary HR/BP meds for daytime use. It's not an immediate fix at all but the small doses of mestinon (30mg TID) & inderal (10mg TID) do seem to be an improvement for me & the mestinon is also helping my gastroparesis...yippee! I too have already gotten many a look about being on the mestinon without having MG, but no stranger than all the looks over the years about all the other "alternative" med uses (i.e. concerta not for ADHD, lexapro/celexa not for depression, etc.) i also like the fact that even though the mestinon is new for autonomic uses it's not a new drug in and of itself... :-)melissa

Jan - I can't even imagine how exhausted you both must be but I am at least glad that your day at Karmanos was more productive than St. Joes. Even without a technical change in prognosis it just sounds like it was a more useful day that was more patient-focused...keep on hanging in there... ~melissa

thanks for the info re: Dr. S's take on the body's reaction to surgery...it actually makes me feel a bit better about what a disaster my body was after surgery...and makes me wonder why no one checked then. i hope the surgery postponement is an okay thing for you? at the very least you'll probably be more relaxed this evening i'm guessing.... and yes, Em, i'm a medical/health nut. i think it's one of my coping mechanisms...finding out anything/everything i can (when i'm up to it) about anything that affects me or anyone else i care about...it's generally a good thing & it feels necessary at times when the medical world being so "out of the loop" themselves. i simply need to understand - as much as possible - what is or isn't going on in my body so that i can harass the docs even more! i also have a lot of friends in the medical arena so that helps(?!) too... :-)melissa

I can't speak to the Tilt Test specifically at Beth Israel but just wanted to say hello, welcome & good luck...to both of you! For me tilt tests are always icky but only b/c of how they make me feel...not anything having to do with the test itself, if that makes sense; in other words there are other things (i.e. standing) that make me feel similarly. I've had the tests with & without varying degrees of external "stuff" (monitors, IVs, etc) so that varies a lot by location, doctor, purpose of the test, etc.... Regardless, though, I have heard good things about Dr. Freeman & am sure you'll be fine. You may be extra-tired afterward so I wouldn't plan to host a big party or anything, but otherwise it will be fine & the folks there should explain things to you...if they're not doing so to your liking just ask until you're satisfied! Anyway, welcome again to both of you... Jeanne - when is your tilt? let us know how it goes! Deb - do you know what your heart rate did on the test? that can have something to do with your feeling rotten too... Looking forward to getting to know you both, :-)melissa aka sunfish

sorry about your "crashes"...i know for me these days i'm too inconsistant & off altogether to have major ups and downs, but when i was doing better i would often do better for several days, overdue it - even if just a tiny bit - and then pay for it dearly. or, like you're guessing, it could be meds-related. are you all on the mestinon for autonomic issues only or is there neuromuscular stuff too? both of you are on MUCH larger doses than i am...i posted under the (old but revived) mestinon post, but i'm only on 30mg 3-4 times a day....in combo with my other new meds though it does seem to be helping me to a degree... perhaps most amazingly/surpirisingly it's helping my slow GI motility. hope you get to be feeling better again...hopefully its just a short stumbling block...i've had a LOT of them that have been pretty short-lived... :-)melissa

this was actually sent to me as part of a weekly digest from emedicine that i recieve & it particularly caught my attention. and it's parhaps appropriate that i'm posting it just before 2am? eeks. the link is: http://www.emedicinehealth.com/articles/50117-1.asp when i was having my major sleep issues post GB surgery (nights on end with NO sleep) and brought it up with dr. khurana he mentioned that a few years ago he sent several of his patients to a sleep specialist out-of-state who was interested in autonomic disorders & the related sleep issues. each person ended up having a diagnosable sleep disorder but it was a different disorder for each person. one of them had the above-referenced "Circadian Rhythm Disorder"...i'd never heard of it prior to that. anyway, i find it interesting. while my sleep (or lack there of) is no where nearly as bad as right after my surgery, it's definitely on the funky side. it's not my biggest issue as i get enough for the most part, but it does intrigue me... has anyone else heard of this particular disorder? off to sleep now...hopefully... :-)melissa

I too am a new partaker of the mestinon, although it was NOT good for me on its own. It was part of the med trials I participated in at Vanderbilt & did well for me in combo with inderal (beta blocker). It wasn't part of the trial but I'm also on midodrine. (more info in my "Vanderbilt Chronicles" post...er, book) Other stuff too but those are the primary HR/BP meds for daytime use. It's not an immediate fix at all but the small doses of mestinon (30mg TID) & inderal (10mg TID) do seem to be an improvement for me & the mestinon is also helping my gastroparesis...yippee! I too have already gotten many a look about being on the mestinon without having MG, but no stranger than all the looks over the years about all the other "alternative" med uses (i.e. concerta not for ADHD, lexapro/celexa not for depression, etc.) i also like the fact that even though the mestinon is new for autonomic uses it's not a new drug in and of itself... :-)melissa

Morgan - I am glad that at least your test didn't make you feel icky...now the results waiting game yet again, eh? Em - I'm laughing about you telling your dad about the injections...I can't quite envision relaying that info to mine! LOL... Re: the botox though, it has been done. I personally have the opposite problem (not being able to go...have to cath myself) so haven't looked into it at all, but here's one link: http://www.healthcentral.com/newsdetail/408/8007157.html I only did a quick search so I'm sure there's better info out there to be had. Although yeah, it's a bit off from the subject heading...oh well:-) WAY past my bed time (on which I have an interesting article to post...) :-)melissa

Janine - Many have already offered good info, but have you been given a reason that your family doc "doesn't do" long term disability? I guess that confuses me if it's your original/primary doc as for me it largely consisted of the doc sending more records to the disability folks with a simple form continued similar to the STD form(s). I realize that all situations are different, and I have had a lot of specialists involved, but my primary has done all the forwarding (with a bit of "encouragement") b/c there's no way all the individual specialists could be kept track of. The whole system is frustrating & exhausting though...since January I have only gotten one check on time & still have yet to see the one that should have been issued a week and a half ago despite the fact that I've been approved through the end of August (for LTD). And when it's most exhausting is when you have the least energy to deal with it...dealing with everything in terms of docs, records, insurance, etc. is seriously a full time job for me some days...luckily at least I can lay down while I'm on hold. ugh. I do agree, from my reading & research, that while it seems harder to initially get on SSDI it seems easier to stay on it...not necessarily forever but rather than the "reviews" are much less frequent. I'm currently applying for SSDI (somewhat halfheartedly) b/c I'm required to by my LTD folks. Good luck - both with with the disability piece & the doctors. I'm sorry the doc you saw today was so unhelpful & in a way harmful...as frustrating as it is I do appreciate it when a doc that doesn't have a clue at least admits such rather than trying to pretend he/she does. Hang in there & let us know how things proceed, :-)melissa

Michelle - what?? no hustler magazine?? i'm so disappointed:-) lol...just wanted to thank you for that laugh. it gave me a good chuckle to go to bed with tonight... :-)melissa

I'm also available for ideas on how to keep beading cheap if needed via email. Nina, the website you listed was new to me & is looks like something that could easily eat up LOTS of my time. Thanks! Emily, I'll gladly teach you to crochet if you give me knitting lessons:-) Regarding the neck-positioning comfort issue, I had to experiment A LOT with it both before & after my neck surgery. I too have used a bed tray (short legs...got one cheap at IKEA) but also tend to contort myself in goofy laying-on-my-side positions; I find them comfy for short periods of time but they weren't an option right before/after my surgery and technically probably aren't "good for" the neck. Same goes for my liking to lay on my belly propped up on my elbows... Whenever possible though - not always - I try to at least be sitting up in order to keep myself as non-unconditioned as possible. Even if it's just half sitting up with lots of pillow behind me. If I'm in a recliner laying mostly back, I do well by putting a pillow (or two) on my lap/legs and then having whatever I'm doing on top of that.... Many times I also add a roll pillow (or self-made roll) under the base of my neck for more comfort... Lots of rambling thoughts later, :-)melissa

I have problems "catching" my breath when I get more tachycardic, but it's b/c of the high heart rate rather than an actual breathing problem per se. I also had one time several years ago when I was hospitalized with a heart rate steadily in the thirties & my breathing wasn't tip top then ( I was on oxygen for a few days.) Most recently, I started a cardiac rehab program last week & am having major issues feeling out-of-breath when trying to do even a few minutes of really low-key cardio, although my pulse ox is in fact okay...I'm thinking that is b/c of the beta blocker which is a new addition for me about a month ago but who knows. So...I don't have much wisdom to offer but often my breathing "feels" bad when my heart rate is at either extreme. Ultimately though my lungs & respiration themselves are totally healthy aside from allergies/congestion. Do you actually feel that you have trouble getting air in your lungs? Can you tell the difference between whether the problem is in your lungs or b/c of other more systemic things? My issues have always been part of a package, not even on their own... Hope you get some answers soon! :-)melissa

I can't believe I failed to mention pickles...I'm an addict! (something I've enjoyed being able to add back in now that my tummy's a bit less moody!) And stouffer's are also my favorite frozen meals. And if I can't eat the whole thing they generally warm up well. Even long before my diagnosis I joked that I liked all "P" foods...pickles, pretzels, popcorn, pizza, potatoes, pierogies (polish dumpling...my FAVORITE)....there are exceptions as I'm not a fan of pop (aka soda for the easterners...i'm a cross-breed) or potato chips (although if I'm cravin salt I'll nibble)... and now i'm getting punchy & about to fall asleep. g'night all, :-)melissa

I just thought I'd second the affirmation for crochet...particularly if you can have someone teach you hands-on & just do your own thing. Scarves & potholders & blankets & whatnot are easy & you don't have to be concerned with patterns or counting or whatnot...

I too thought of beads/jewelry right away. You can get all different sizes which would make it easier & if you use a tray with ridges it's pretty neat in bed...the worse case scenario would be a bead here or there. It's also a quick-result type thing...a bracelet is pretty quick from start to finish. And the end result can be very nice. Also - don't laugh - what about coloring? I have actually done this myself & find it to be very therapeutic at times. And all it takes is a coloring book and crayons. I even did it at Vanderbilt...wasn't planned but they had pictures to color for the taking outside the chapel at the children's hospital & my mom bought me crayons for a dollar at the gift shop & it was great as I couldn't really read or write much being off my meds. I even used the pics to brighten up my hospital room a bit! If I think of anything else I'll let you know... :-)melissa

Right now I'm doing better GI-wise than I have been since new years, which means that I'm VERY thankfully eating with some semblance of normalacy...relatively speaking. In terms how eating or not eating things makes me feel in general as opposed to how things effect me GI-wise, the only things I can tell are fluids & salt. I can tell when/if either start to fall behind. For me it's generally more about quantity than quality...or rather I can generally eat almost anything if it's only a few bites. I do, however, know I get into problems with larger amounts of things that are really spicy, really full of fiber or fat, or really acidic. I'm okay with dairy generally but not in massive quantities at once. Before this past November, except for a few rough patches over the years, my body was a lot more accepting of things in general. Now I'm just coming out of severe gastroparesis since January during which time I could hardly keep liquids down at times. So...I've been on every which side of things in terms of tolerance. When I simply feel cruddy in terms of BP/HR & my stomach itself is uneasy but not a complete disaster, I gravitate toward gatorade & tortilla chips, pretzels, or my latest obcession...Bold Chex Mix. YUMMY!!! I'm also a big soup fan although just getting back into it b/c it wasn't a high enough calorie ratio to keep be functioning when my stomach wasn't even letting fluids through much this winter. I too am a saltine fan. And a big monkey (aka banana-eater) as my stomach likes them & my potassium is often on the low side. As I've mentioned in some gastroparesis posts, when I'm really having trouble stomach-wise, I've had to resort to Boost, Ensure, Boost Breezes, Snapple One-A-Days, & Gerber Fruit&Yogurt drinks to keep myself going (sort of). When I'm so-so and know my food intake isn't grand I sometimes add one of these things in as a "bonus" for the day. I always try to have yogurts & a few microwave dinners on hand for when I feel up to eating but not able to fix anything...otherwise I have a tendency to eat nothing BUT salty snacks. When Mom's around to cook I find myself doing well with various varieties of eggs & potatoes (sweet & regular). And always a salt shaker to top it off!!! :-)melissa

Future - Good luck with your surgery on Friday. Do you have someone going with you? Is it outpatient or inpatient? It's great that the docs involved are at least at the same hospital; I had my surgery elsewhere in March which meant when things went wacky afterward communication with Dr. K was next to impossible. It's great that you made the calls to give the "heads up" to all involved too. I do find it interesting in terms of the illness/surgery recovery issue as I've always had a tough time but always attributed it to the autonomic issues. Hmm... Ernie & Morgan - make sure & keep me/us updated on how your testing goes. Thanks again for all of the input! :-)melissa

Jan - I'm so sorry that you had a rotten doctor encounter today, but glad that you were able to assert yourself. I agree that even within the context of a diagnosis with "no cure" by the books, there are other ways of communicating the reality while being more positive & hopeful. Go you. I'm also super-glad that you were able to have a good evening with your friends. Keep on keepin on. hugs & prayers, melissa

Congrats Congrats Congrats!!! I was hoping that the good news would be posted soon...so thanks for posting & sharing the pics too. Again, congrats on two beautiful children. And so glad to hear that you are both doing well. :-)melissa

Hi Dayna- Some type of blood pressure &/or heart rate problems are diagnostic for OI/POTS & NMH/NCS, but that doesn't necessarily mean you need to notice them to the degree than many talk about on here. For instance when my HR goes low, I don't "feel" it...I just feel ill in otherways (until I potentially pass out). Also, when my HR is just a bit higher than normal but not crazy high, I don't notice it greatly...instead I notice other things. When I was originally diagnosed with NCS years ago, I actually felt pretty darn good day-to-day but would then simply pass out seemingly "out of the blue"...sometimes I'd feel rotten for a bit afterward but for the most part I didn't have any "feelings" of HR or BP problems until I actually hit the ground. I did however get VERY ill when I had my tilt...during & for awhile afterward. In terms of your positive tilt, do you know what made it considered to be positive? HR up or down? BP drop? Do you ever faint? It is a bit odd to me that you didn't feel any different during the test & yet it was still positive. Was the "positive" explained to you at all? It's good to explore & dive into what your diagnosis really is - not so much to have a name but simply to help in understanding & treatment for now & going forth. But at the same time don't worry too much about having to fit in to others' exact profiles here as we're all different. Keep asking questions...both here & also of your docs. Even if the answers you get aren't complete, you have every right to know what your docs' thoughts are & why. That will likely give you a better idea of how to proceed. :-)melissa

Thank you for all of your responses! I had this horrible fear that b/c I wrote so very much...much more than I had originally intended...that no one would actually take the time to read it. And of course that would have negated the entire purpose of my sharing to write it all to begin with. So...thank you to all you brave souls who embarked upon the project. I'm glad to hear that it's been helpful to even one person...anyone else is a bonus. Regarding remembering all the details, I definitely would not have been able to except that I made a point to keep LOTS of notes, even when I could hardly see straight to do so. I'm so very glad that I did. Regarding my verbosity, yep Emily...I do believe that I'm going to give you a run for your money! I'm glad you're up for the challenge And Ernie, thank you for the compliment; it's been awhile since I've been pinned with the "teacher" title & it made my day too. And to my fellow goofy girl, you gave me a smile too:-) For those of you printing out...good idea...I couldn't read or write it all myself in one sitting. I was blown away by how long it ended up being; it got me truly thinking about writing that book I say I'm going to write someday. I actually wrote it off-line in Microsoft Word & it was over 8 pages, single-spaced with 11pt font. I impressed even myself! For those of you considering Vanderbilt, I'd say go for it...there's no harm in the application even if you decide not to go. The application itself can be a decision-maker. I didn't seriously consider Mayo recently due to the way things are set up there logisticly. I did also apply to NIH, which I would have thought to be my "first choice" as it's much closer. I was accepted at NIH but the inpatient study was solely diagnosis-based rather than treatment-based & my admission wouldn't be for at least a year from now; for a few outpatient studies they didn't feel it would be safe to have me off all of my meds as would have been necessary. In short my decisions were narrowed down for me & in the end I think it worked out well. It's nothing against NIH & I know many have had good experiences there, but there are benefits to being somewhere that does both research & otherwise, such as my being connected with other specialists that work with the autonomic folks when I return for my follow-up. Sally, I'm sorry to hear that your daughter has to deal with the UC. Knowing how miserable I was when mine first went nuts in November I can empathize a bit; for me a week in the hospital & 10lbs down was bad enough so I can hardly imagine the bigger scale of things that your daughter has had to deal with. Luckily mine quelled down relatively quickly & is under control with only an enema...not even daily now. The worst part for me was/is the weird interaction with my super-slow motility; it adds extra confusion for the docs b/c my symptoms aren't the "normal" ones. In fact though we think my UC may be triggered, if not caused, by irritation from my motility problems. Regardless though I'm just thankful that mine is pretty much a non-issue for the time being; I have plenty else keeping me busy! I'm glad to hear that your daughter is doing better. And thanks for the link, too. Any other questions, feel free to ask. And again, thanks for reading! :-)melissa

Michelle, Nina, et al - I just wanted to chime in with a thank you & an echo of support for all you do. While I do agree with the spirit behind the concern of keeping a family feeling on the board, to me that isn't in conflict with the new rules. Like you (Michelle, I think) have affirmed, posts about coping, etc ARE okay & being related to Dysautonomia is A LOT more than simply medical info....it's about how we live - with the illness - and this living includes a lot....struggles, victories, etc. I hope I'm not speaking out of turn, but I think some may think the new rules restrict more than they actually do. There are so many things that are still totally okay to talk about...Ultimately rules/regulations are to protect & help the group (not to mention to hopefully keep things a bit more sane for those in charge!) Ironic as it is, rules often bring with them more freedom...b/c of the safety they help to ensure. Thank you all for letting me be a part of this community & by keeping on with it through thick & thin. love & hugs & smiles & sunshine, :-)melissa