Sunfish

hello again - nope, i don't mind the age question at all! i'm 28, so not too much older than you. but no, i don't have MSA. i actually have more severe autonomic issues systemically than is typically for those with MSA but don't deal with some of the other issues that are needed for the diagnosis, most namely Parkinsonianism-type features & cerebral involvement, which in more understandable (and greatly simplified) terms means that i don't deal with certain movement & stance issues that are seen in those with MSA, Parkinsons, & some other neurological movement disorders. while many think that MSA is "just" the most severe form of dysautonomia, it's actually a very different illness of which autonomic dysfunction is only one of the major criteria. people with MSA are more likely to be misdiagnosed with Parkinsons than with a different type of dysautonomia. a good explaination, though it is NOT something you need to be worried about yourself, is "Table 2" on the following page: http://www.emedicine.com/neuro/topic671.htm. it's a succinct summary of the diagnostic criteria for MSA. as for what i AM diagnosed with, i have a progressive form of autonomic failure, also referred to by some doctors as progressive autonomic neuropathy. similar degrees of autonomic failure are not often seen in people my age; it's not common in any population but is "most" prevalent in those middle-age or older, and a bit more so in males of that age group than in females. b/c of my unusual diagnostic/ symptomatic profile some of my docs are thinking that i may have a mitochondrial disease as the underlying reason for my illness progression and i've been undergoing a lengthy series of testing to evaluate that possibility in recent months; whether or not that is the case won't have a large effect on my treatment or prognosis but i'm someone who likes to understand as much as possible about what is (and isn't) going on in my body. without rambling on & on here, if you want to know more about me you can check out the article about me in last year's summer newsletter: http://www.dinet.org/summer07/sum07news3.htm. it's obviously not entirely up to date but my history & much of the day-to-day info is similar. if you have any other questions feel free to let me know. you're right that living with & through illness of any type more than the standard cold or flu gives you a much different perspective on things than others your age (or of any age for that matter!) it's not always an easy thing, but, as you seem to already appreciate, gives you a broader appreciation for many things that those without similar experiences simply can't have; it's commendable that you're realizing this at all when you're still fairly new to entering the land of illness/ dysautonomia. in your last post you referenced "letting the dysautonomia run its course." while i am a big proponent of the value of learning to accept & deal with one's reality, i also want to continue to encourage you to find the treatment(s) - medications, lifestyle changes, or other interventions - to get you to feeling the best that you can. it's true that patience for the course of one's illness is a crucial element of keeping sane for many of us at times, knowing how long you're been dealing with dysautonomia it's pretty unlikely that you've already exhausted your treatment options at this point in time. it's a fine line between seeking out more & better treatments & going overboard, but i'd hate for you to settle with beta blockers as your only treatment option wherein your only other option is to hope & pray that things get better with time. it's very true that time may be your healer, but there may be things that help you to make the most of your time to get you to feeling as well as possible, whatever that level of wellness may be. flop's comments re: learning your body & your limits is also very true & something that you can only fully appreciate after the fact. having been in the land of dysautonomia for over eleven years i'm still learning - b/c things are always changing - but despite my situation being drastically more severe than when first diagnosed, there are a few things are in some ways "better" b/c of the fact that i'm so much more attuned my body & it's limitations. one concrete example is the frequency with which i actually lose consciousness, or pass out/ black out (aka syncope). i used to pass out very frequently. technically, my body can tolerate being upright less now than it could then, but b/c i'm so much better attuned to my body's cues than i used to be, and b/c i've learned to adapt to my body's quantifiable limitations, i actually pass out less now than i used to. i'm not any "better" - in fact, just the opposite - but i've become wiser about this one aspect of my body & it's limitations so that the number of times i fully faint is less than it was ten or eleven years back. hope this makes sense! hope this helps, melissa

are your values from a urine test or blood work?

valliali - while not dismissing the fact that progressive dysautonomias do exist, i also wanted to chime in to encourage you that, on the balance, most of them are frought with ups & downs (and thus may seem progressive at certain points in time) but are not, on the balance, considered progressive. and even for those with progressive illnesses, most are no where near to what would bring about a diagnosis of MSA. so - bottom line - try not to worry too much but rather focus on getting the best management you can for your current health situation with the expectation that, most likely, you'll have ups & downs along the way but will, with time, acheive a modecum of management over your symptoms that you haven't yet found. having been around this forum (and others) for years, MANY people in their first year or two or three of illness are very concerned about their course of illness being progressive, symptoms seem to be out of control & progressing, etc. the concern is understandible when people are trying to traverse a world of illness/ dysautonomia that is new & unknown to them, but more times than not people's illnesses do NOT end up being progressive. so, while it's not impossible for your illness to continue to get worse, it's definitely not the most likely course, even if your symptoms have seemed to progress up to this point. as one of the people who does have a progressive course with severe, multi-system involvement, i have been told by several of the top autonomic docs in the country who have treated me that i am VERY unusual, i.e. one of these docs has said that he's seen less than a handful of people with my level of involvement/ progression. so while i know it's easy to get worried, to read articles that mention MSA & think that's where you're headed, etc, that is VERY unlikely so try not to worry about things heading that direction. instead try to get a doctor (or team of doctors) who you're able to work with to get yourself feeling as well as you can within the constraints of your current health situation, knowing & hoping that in doing this you're only going to increase the chances of things improving over time. in that way, even if you don't technically "improve", by getting your symptoms better controlled, your day-to-day functioning is likely to improve. while no one knows for sure what the future holds for any one individual, rest assured that statistically speaking, it's very unlikely that you're headed toward being one of the worst case scenarios. and no matter what, worrying about it won't help. so while it's probably easier said than done, try to take a deep breath & not worry too much! hope this helps, melissa

i get significant stomach/ abdominal distention but it's not so much from blood pooling as it is from intestinal & stomach bloating/ distention. just something to consider that might be what's going on in part or in full for some of you... melissa

i have mine through Medic Alert, which is similar to the service flop uses in that you have a tag (bracelet, necklace, etc) with a phone number & your personal ID printed on it which is then connected to a system that can store essentially an unlimited amount of information. you can keep a comprehensive record that includes personal/ emergency contacts, your physicians, medications, allergies, diagnoses, medical/ surgical history, "extras" in your body (plates/screws, pacemaker, central lines, etc), etc...pretty much anything you'd like. there is a yearly fee which is tax-deductible & not much more than a co-pay to the doctor; you can update your info as often as you need to either online or on the phone. you can have a few lines still printed on the ID tag itself, which is good for incredible pertinent info that would be imminently important for treatment in the field, as an EMT would likely see this before the full info was gotten from a phone call made at the hospital to the MedicAlert folks, family members, etc. while i haven't had my ID used i have been told on numerous occasions that it would be used had my parents & my medical record not been with me upon many of my hospital admissions in recent years. now that i'm able to be out on my own at times but still have the history & risk of becoming life-threateningly ill within minutes wherein i can't communicate & might not be able to for days it's something that makes sense for me to have. in fact this post is a good reminder for me that i have to log in to update my file with some of my recent changes. the bottom line though, if you're willing/ able to subscribe to one of the services, is that you don't have to worry about condensing everything down to a few words/ lines. for many people a few words/ lines is likely more than sufficient for the really important stuff, but for those of us who can't get it pared down the subscription services can be a good option. hope this helps, melissa

i'm not familiar with the doc you're asking about & - up until i moved back to ohio about 3 years ago - considered myself pretty "in the know" re: any dysautonomia resources in the baltimore/ DC area due to combination of my own medical needs, communication with dr. grubb (who is from the area & went to school there, & thus has many connections out that way), & the fact that i knew a top pediatric autonomic/ CFS doc at hopkins. of course it's very possible that dr.pocinki is either new to the area or to his interest/ specialization in dysautonomia, so my not having heard have him may mean absolutely nothing! i lived in Baltimore, MD - approx. 45 min north of DC - for over 8 years and saw Dr. Ramesh Khurana, a neurologist who specializes exclusively in autonomic dysfunction & headaches, for a good amount of that time. at that time he worked out of two offices in addition to his office in baltimore - one in columbia, md & one in another suburb between baltimore & dc that is escaping my memory at the moment. thus he's not right in DC but 2 of his offices are probably within 30 minutes or so of DC as long as it's not a heavy traffic time. not a bad distance really if it would be a good doc match for you; i know you've travelled much further lately! i did just check & he is still listed on DINET's physician listing (http://www.dinet.org/physicians.htm#United States); he's the first listing under maryland & his info there reads: Dr. Ramesh K. Khurana Hawthorne Office Park 10780 Hickory Ridge Road Columbia, MD 21044 410-997-3113 POTS (OI, OT), NCS, PAF/Secondary Autonomic Failure, MSA, Anhidrosis, Hyperhidrosis Autonomic Laboratory Treats adults his name, however, is also a link that leads to his baltimore city office listing. the direct link is: http://www.unionmemorial.org/body.cfm?ID=1...p;doctorid=3887. while no one is perfect, i was overall pleased with him as a physician during the years that i saw him. while my health (or lack there of) wasn't near as complex when i was seeing him as it is now, i did see him during a time of my life that included several surgeries, my having to stop working, & my traveling to vanderbilt as a research patient, so i wan't exactly the most ho-hum patient either. i know of a few others on the forum who have seen him in the past & may still be seeing him. i think there may have been some discussions on the forum over the years as well where his name has come up, not necessarily in posts directly about him but re: treatments/ testing with him & the like, so if you're interested you may want to search for past posts using his name. if you have any more specific questions feel free to ask me here or via PM. that goes for if you need to find any other specialists for your stay in DC as well, as i know at least one of my other docs from my baltimore days had multiple office locations in the baltimore/ DC area. good luck with all the preparations you're having to make before you make the trip out east. i would imagine it's a bit hectic at the moment but hope that it will be well worth it. in my entirely biased opinion you're headed to a great place! hope this helps, melissa, who is wishing she could hitch a ride in your suitcase!

yep...it's almost a daily thing for me but is DIRECTLY related to my orthostatic intolerance/ hypotension. if aleve is helping you some you may not be dealing with the same thing b/c the type i have - and that i've discussed with various autonomic docs over the years - is more blood pressure related than anything else. i'm on a good amount of pain medication for other issues and they do nothing for the coat hanger stuff. the only thing that relieves it is lying down... so...in terms of who to see? true coathanger pain as it relates to dysautonomia is an autonomic issue so it's not likely that anyone but the autonomic docs will "get it". for me it's better the better my OI/ OH is controlled. as ernie mentioned also, midodrine is a part of that equation for me, though by no means does it alleviate the issue for me anymore (it used to.) i'm surprised you haven't heard the terminology before as i'm pretty sure it's been discussed on the forum several times.... sorry to not have a better fix to offer, but you're definitely not alone! melissa

a great big GGGGGGGGGGRRRRRRRRRRRRRRRRR for your PCP. how frustrating. and completely uncalled for. i would be fuming if i were you. not to mention hurt. you're doing what you think you should be to get your health to the best place it can be under the care of docs that you've had a relationship with for much longer than her and she has the nerve to question that by putting you in a box with "other 32 year olds"?! i think rachel put it well. when you (and we) aren't "normal" in any other way then why the heck would we be normal when it comes to meds!? i'm all for taking the fewest meds possible but for some of us that may still leave us taking what looks like a huge number. i know that if i took everything i've been offered and/or have tried over the years or if i tried to alleviate every itsy bitty sign & symptom that i have regularly i'd be on even more than i already am. i'm guessing that it's the same for you. if you weren't as judicious as you already are i'd guess that you could easilyi be on more meds. seriously though, it's a good thing i don't live closer to you b/c i would be very tempted to give that doc a piece of my mind (and perhaps a kick or a slap across the face)! it would have been one thing if she had had a particular question/ concern about the purpose of a particular drug b/c of wanting to better understand your health situation (i.e. if she had said "help me understand why you're taking this med, what it does for you, etc") but the way she handled her "concern" seems anything but helpful! i guess i cast my vote differently than others did though. i would have tried to keep it consistant but i voted yesterday (before others added comments re: how they voted). i voted based on how many total prescription meds i use, whether daily or PRN, as long as they're things i take semi-regularly (i.e. i didn't count things that i've been on for an acute issue, that i only use a few times a year, etc but i did count things that i use intermittently on a fairly regular basis). counting that way my vote was easily the highest option available. that said, if i include my IV stuff, which are techincally considered meds, i'm in that category even if i take away my PRN meds from my original vote, so i suppose i'm in that category regardless. it only changes whether i "just" make it into that range or whether i'm almost double it. regardless of how i count my Rx meds though, the lowest number i can come up with is 17 meds but with my IV stuff added in as well as PRN meds it's over 30. yikes. way to make me feel like a druggie!! wh well. and that's not even counting my prescription supples & "stuff" (BiPAP, wheelchair, G & J tubes, various supplies for my port/ IVs/ tubes/ BiPAP/ wheelchair/etc.). i can't even imagine what the number would be then. bottom line is that if you want to tell your doc you know people on WAY more meds than you are you would not be exaggerating. without many of my meds i wouldn't be here though and without others i would function at a significantly lower level than i already do so i'll take them. there are only 2 things on my massive list that i'm not 100% confident are benefiting me any longer symptomatically; one however is indicated via bloodwork such that there's still a very objective reason to take it (to resolve a deficiency) and the other definitely helped me significantly in the past & while my docs & i have considered seeing if it's still helping by stopping it for a period i haven't had a long enough block of stability and/or no other change in variables for us to proceed with that trial. so...in short i guess what i'm getting at is that as much as i wish i could take/use less meds, i feel a bit better about doing so b/c of how i can so specifically tell what most all of them are doing. ok....i probably rambled on about far more than what you were looking for but there you have it....i don't know what to say when it comes to the bigger picture of getting this doc in your camp moving forward but hopefully she'll have a revelation of realizing that she was being a total wacko?! other than that i would try to stay confident in the fact that taking care of yourself isn't measured in the number of meds you do or don't take. if that means re-evaluating a med or two moving forward that might not be helping in the way it used to then that's dandy, but not any more dandy than if you need to add one or more meds to best advance you on the journey to better health. at least that's my two cents! melissa p.s. i'm even more frustrated for you knowing how hard you've had to fight for some of the meds (at least one) that you need to function. why on earth would you do all of that if it wasn't so necessary for your day to day functioning?!

congrats to mike (& to the proud parents)! regarding where to put his photo(s), you can email it/ them to dinetphotos@yahoo.com and Katherine (MomToGuiliana) will post them on the "Faces of Dinet" page. if you don't have the link to "Faces of Dinet" yourself send a PM to Katherine & she'll send it to you. the info about it is in a post at the top of the Chit-Chat forum (direct link to the post is http://dinet.ipbhost.com/index.php?showtopic=1107) but you still have to email Katherine for the link as this keeps the site more private. hope this helps, melissa

another "me too" to mornings being my worst...to the extent that they usually don't exist. and no matter when i wake up - even if it's 2pm - i need at least an hour (and often more) to "wake up", though that's at least partially related to waiting for my meds to kick in (esp. midodrine). i haven't always had rough mornings though post-diagnosis. when i was still able to school, work, etc. i needed to wait for my meds to kick in (30-45 minutes) but otherwise was just as much a morning person as evening. i actually rowed in college which included 5am practices! now - activity fatigue excluded - i feel better & better as the day progresses. if i push to do something the feeling better fights with my crashing from activity but my baseline, so to speak, improves as the day goes on. but...back to now. for what it's worth i can sort of debunk the fluid/ dehydration theory, at least for me. my fluid intake is just as great throughout the night as it is during the day as i'm entirely dependent on IV hydration/ nutrition. my IVs run 22 hours a day, including overnight, but my "mornings" (often technically afternoons) are still really rough. that's not to say i don't have other times that can be equally bad, but mornings are pretty much a guarantee. or more accurately the first few hours after i wake up is not pleasant no matter what the clock says. this only seems to be true though if i've slept a full "night" as i don't have trouble after a nap. oddly enough i feel better - at least for the morning hours - if i don't sleep at all than if i sleep well all night. i obviously can't do that on a sustained basis (not more than one night) but it's strange. i do have sleep apnea but it is sufficiently being treated with a BiPAP that i use faithfully (can't sleep without it!) so...bottom line is that i have no clue what the "why" is for me. i used to jokingly comment that i'd feel great in the mornings "if only" i could hook up to bag of saline overnight. now that i have that (be careful what you wish for!) it doesn't seem to make one bit of difference. so who knows....i still think that fluid balance is likely to play a role for at least some people. all in all though - while i know there are some exceptions - morning struggles seem to be a common phenomenon amongst dysautonomia folks of all types/ diagnoses, severities, etc. melissa

thanks for the info. here's a different link that - at least for me - makes the "broadcast" a bit clearer, has some more info, etc. http://www.blogtalkradio.com/winninglifethroughpain you have to scroll down a bit to see the POTS announcement (identical to the link michelle posted) but there's more surrounding info/ context. melissa

good luck tomorrow!! i'll be thinking of & praying for you... melissa

huffy et al - regarding the temperature of the IV fluids, they should NOT be cold when you receive them. most hospitals/ clinics actually store normal saline at room temperature but even if it is stored the fridge it should be allowed to come to room temperature before administration (unless it's being used to treat someone with heat exhaustion or heat stroke!) i administer my own IV fluids (normal saline) daily and b/c my bags have the air removed they do require refrigeration but i've always been told to bring them to room temperature before infusion. b/c any daily routine is bound to be forgotten in the midst of day-to-day health fluctuations i have asked what would happen if my saline (or other infusions for that matter) isn't "warm" enough (aka room temperature) in time & have always been told that it would just make me cold. over the years i have had this happen a few times (my forgetting to get my IV bags out of the fridge early enough) and the consequence has been either nothing or my being a bit chilly. b/c being chilly tends to keep me alert, for me cold saline (or a cold room for that matter) will more likely keep me awake rather than make me drowsy/ tired. my point, however, is that you should NOT be given cold saline. it won't hurt you, but it's not standard practice & if it's happening you have every right to ask for the bags to be brought to room temperature (done via time or warming blankets or warm water immersion NOT a microwave!!!) so sorry to hear that some of you feel worse rather than better with saline infusions. i can't imagine as i'm dependant on them to keep me going on a daily basis. that said, they don't help me feel better in the way they once did. i used to get a big boost which i haven't gotten in years, though seeing as they keep me alive i'm not complaining! hope this helps, melissa

hi sandy - i'm not sure what you doc meant when s/he said small fiber neuropathy would "change the whole ballgame" as many of us on the forum - with a wide range of symptoms, disability, etc - have documented neuropathy, have had the QSART test (sometimes referred to as a sweat test...one of 2 types). many people ask about terminology & i think i've offered explanations on the forum before (likely more clearly than this one will be as i'm half asleep!) but to start with, autonomic neuropathy is one sub-type of small fiber neuropathy so when someone references small fiber neuropathy it may or may not mean autonomic (though often does) but when someone says autonomic is always means small fiber. that said, a diagnosis of small fiber neuropathy doesn't - in & of itself - have significant meaning for treatment, prognosis, etc. a diagnosis of "small fiber neuropathy" isn't in conflict with a diagnosis of POTS, NCS/ NMH, Autonomic Failure, etc. but rather offers a bit better defined etiology, or "why" behind the diagnosis. in other words knowing you have neuropathy can help to explain - at least on one level - the "why" behind one's dysautonomia symptoms. it's certainly true that - in some cases - neuropathy can have additional meaning, be a part of other diagnoses, etc, but "just" having small fiber neuropathy doesn't always mean anything different than "just" having POTS, NCS/NMH, Autonomic Failure, etc. i would be very curious to know how the doc you saw thinks otherwise as my understanding is based on reading as well as consults/ discussions with many autonomic docs throughout the country (grubb, khurana, & several at cleveland clinic & vanderbilt.) i would be curious to know who you saw at the clinic as i've seen several different docs there over the years (& currently treated by a few); if you'd rather PM me (particularly if you had a mixed experience) feel free. i have extensive small fiber neuropathy myself that is progressive & essentially responsible for my multi-system/ progressive autonomic failure but the severity of my illness is NOT because of my small fiber neuropathy diagnosis. others on the forum with neuropathy have every "degree" of dysautonomia (for lack of a better way to put it) and among these people some get better with time while some get worse (with many staying the same whilst having lots of ups & downs along the way). in short, my understanding is that those with various dysautonomias who have a neuropathy diagnosis don't have a drastically different overall profile than those without. it is probably true that those with neuropathy tend to have more sensory issues (aka pins & needles, numbness, etc) but that could just as well be a cause for diagnosis rather than an effect (i.e. the symptoms led to the neuropathy diagnosis rather than the diagnosis coming before the symptoms.) i do know that when i was first diagnosed with neuropathy i in some ways appreciated the concreteness of a tangible "why" behind my symptoms (knowing that my nerves weren't functioning properly). i don't trust that i've explained in the way that i intended but will close for now & follow-up later if i've confused you more than helped! melissa p.s. i had a skin biopsy in the midst of testing for mitochondrial disease at cleveland clinic (done under arm pit) & have had several other skin biopsies over the years for other reasons elsewhere. they're not too bad...pretty much just like a BIG pinch! and a bit sore afterward. the direct link to info re: the QSART at cleveland clinic is here http://my.clevelandclinic.org/services/qua...s_overview.aspx. i actually had the QSART done there myself & the description is just as good as what i'd ramble on about. it's not fun but also not bad in the realm of tests; pretty much like getting stung by a few bees? the worst part for me was having to be off of some of my meds (though not all...i was allowed to take some that i couldn't take for other testing over the years).

hope you're sleeping soundly in your new place! had you in my thoughts & prayers this week as you were getting ready, today as you moved, & will continue to as you settle in. take care of yourself the best you can in the midst of all of your business! melissa p.s. i would have driven down to unpack you myself if i were a healthy-fish (though i suppose i wouldn't have been on DINET if that were the case in which case i never would have met you, so....i suppose that train of thought doesn't work after all!)

another issue that may be a factor is that there are different types of the generic, aka more than one company manufactures it. some people find that some of the generics work just as well as the name brand (aka proamatine) or close to it whereas others do not. and - if you're someone who has to split your pill for correct dosing some or all of the time, it is definitely true that at least one of the generic types is difficult if not impossible to split accurately (or at all). re: the insurance issue, most companies that require the use of generics when available & impose a penalty otherwise have a provision, i.e. "small print", that mentions that there are exceptions. what this usually means in practice is that if you try the generic and it doesn't work, there's a reason you can't try it (i.e. an allergy to coloring), etc. and your physician documents this beyond "just" writing "name brand only" on the script & submits this in the proper way to your insurance, they won't make you pay the penalty you would otherwise have to pay for requesting the name brand. you likely will still have ot pay more than for the generic b/c the drug itself is in fact more pricey, but it may make it not AS bad if you at least can get rid of the penalty. a lot of work but if you take it regularly could still be worth the effort IF you really can tell a difference. personally i use one of the generic types and it's not any less effective for me than the name brand (proamatine). maybe this is b/c i only get a minimal benefit in the first place, maybe this is b/c i have to crush & dissolve any & all pills & put them into my J tube (would eliminate differences others might encounter in regard to break-down &/or absorption issues in the stomach), maybe it's b/c i have poor absorption of things in general, maybe i'm just weird that i can't tell a difference & others can. i doubt that i'm the only one who finds the generic to be okay though either so i wouldn't totally dismiss the possibility that it might be okay for you. i do NOT discount the fact that - for some - the generic(s) may not work as well. i don't doubt for a second that there are reasons that this could be the case. b/c, yes, while it's true that they technically supposed to contain the same "active ingredients" so to speak, it doesn't take more than a cursory glance at the pills themselves to know that they aren't identical through and through. different versions of the "same" drug have different fillers, colorings, binders, etc so there are things that could definitely cause problems for folks. on the other hand, though, i don't doubt that there might be a few people who are so sure that the generic won't work (before trying it) that they make that reality come to pass! so you never know...if i were you i'd give the generics a try before paying more over the long-term, fighting with your insurance company, etc. and if you try them & they don't work (particularly if you can document this via BP/ HR over a period of time) it can only help with trying to convince your insurance company. and then you would at least know that you're benefitting by forking over more money for the name brand. good luck! melissa

glad to hear that the appointment was a good experience for you! melissa p.s. the title's fixed too! (says i, the moderator-in-hiding as of late)

howdy - sorry that it's taken me so long to reply. i've been abnormally quiet on the boards lately despite still reading. but anyway...i just wanted to wish you luck with your toledo visit & offer any last-minute help you might need regarding things here in toledo. i'm a toledo native who isn't far from grubb's office and who has - unfortunately - spent way too much time at that hospital. feel free to send me a PM if you have any questions or would want to chat at all regarding the "lay of the land" before you get "here". if we don't "talk" before i'll be wishing you only good things to come out of the appointment! melissa

adderall wasn't a great fit for me as it gave me headaches & blurry vision that was intolerable before i was able to get to a dose that provided any benefit. BUT i have had pretty significant success(relatively speaking) with some other meds with the same intent. concerta was my "magic pill" for years in regard to its vasoconstrictive benefit (similar to midodrine) as well as it helping to combat my fatigue & cognitive difficulties. without it i don't think i would have been able to finish college nor work for the few years that i did (albeit quite creatively) after graduation. along the same lines, though not as dramatically, i now wear a daytrana patch which helps me a bit in the fatigue & cognitive/ concentration departments. without it i can't focus/ stay alert enough to read a book, watch a movie that requires any thought, etc. with it there are still many days & hours where i can't do this but there are some where i can. as you know i'm far from able-bodied, but i do better with the patch than without. it also keeps me from having to sleep for several hours every afternoon/ evening. i still need this nap at times, i.e. if i've pushed and/or haven't had enough sleep the night before, but without the patch the nap is a must, aka i'll zonk out whether i want to or not. i know these aren't the meds you were asking about but i still thought i'd mention them as i know some have had similar success with adderall. i've never tried provigil as it's not an option for me as it doesn't come in a non-oral form (liquid, crushable tablet, or powder that can go into my J tube or a patch, injection, etc). good luck with the trial! melissa

carly et al - i don't think that there's any connection between costochondritis & dysautonomia, other than - perhaps - for those with EDS? i don't have EDS & my diagnosis is autonomic failure rather than POTS but i did have a nasty bout of costochondritis this spring/ early summer. for me it was indirectly related to my autonomic issues only b/c the trigger for the injury was an episode of vomiting/ dry heaves which, for me, is due to nausea that's related to my gastroparesis & intestinal pseudo-obstruction which ultimately is caused by neuropathy throughout my GI tract. for me the pain was distinctly different than pain i've had at other times from pleurisy, pneumonia, pleural effusions, etc (yep, i've done them all); i could tell that it was more external...didn't mean it didn't hurt but it was different. my doc also acknowledged that there was a chance i'd actually cracked a rib as well but since treatment wouldn't be any different we didn't bother with an x-ray. i used Flector patches (local NSAID prescription med that's fairly new) as well as systemic pain meds, motrin as well as increased dosing of other opiod meds that i'm on regularly. i didn't expect to be pain-free but we needed me to be able to breath sufficiently to keep me pneumonia & pleural-effusion free as my lungs have a history that causes them to fill up and/ or collapse quite readily. for those mentioning "chest pain" it's hard to know what type of pain you're referring to without more of a description. there are just too many types of "chest pain" with a wide variety of origins to have much meaningful discussion without more specific info. hope this helps, melissa

one of the first line treatments for many (perhaps most) with just about any variety of dysautonomia is fluid & salt loading. salt/ sodium is one type of electrolyte & often the most important for those with dysautonomia. the idea is to increase the blood volume...done via increased fluids + salt to help retain said fluids. for reasons that aren't quite as clear many people struggle with low potassium as well. as a general rule someone who is dehydrated & in need of a lot of extra fluids needs to make sure they are supuplementing their fluid intake with electrolytes as well...while the person with dysautonomia may not technically be dehydrated it's the same idea in that the goal is to achieve balance...too much water on its own can - in the extreme - "flush out" one's electrolytes. hope this helps, melissa

kkrylee et al - i just wrote more in your other post, but did want to briefly chime in re: the "coat hanger pain" subject. this type of pain can occur with any type of orthostatic intolerance, doesn't have to be related to chiari or to an injury, has no relation to age, etc. it is usually relieved, at least to some degree, by positional changes (aka worse when upright & better when reclined/ lying down). i've had this myself for years, though it's varied in severity over time. it's been something that i've discussed over the years with numerous autonomic specialists (grubb in ohio, khurana & rowe in maryland, vanderbilt, cleveland clinic, & several others by way of hearing them speak at a conference) and all of the docs have always agreed that it's an issue of insufficient blood flow &/or oxygenation when i'm pushing my body beyond it's capability to remain upright (standing &/or sitting, depending on my health situation at the time). hope this helps, melissa

hello - i don't have POTS but rather a form of autonomic failure which includes, but is not limited to, OH. i'm 28 and am not a "typical" situation, but your daughter's situation - OH without POTS - is actually not all that unusual. there are a good number of people with orthostatic hypotension, sometimes receiving the diagnosis of NCS (neurocardiogenic syncope) or NMH (neurally mediated hypotension) who do not fit the diagnostic criteria for POTS. while POTS can certainly seem to overtake the discussions on this forum, there are a significant number of members with NCS/ NMH as well...either as a singular diagnosis or in combination with a POTS diagnosis. there are some people with "only" a more general diagnosis of "dysautonomia" or "autonomic dysfunction" rather than something more specific, many who have "OH" (either alone or in combination with other diagnoses), and a handful of us - though definitely much more in the minority - with other diagnoses (i.e. autonomic failure). while OH can certainly be seen in a subset of the elderly, any "information" you have come across stating that OH is something seen only in the elderly is definitely NOT accurate. re: chiari (of any type), there are a few people on the forum who have explored this to varying degrees as a possible component of their diagnosis. a search for chiari would give you some more info as well as links to forums where chiari is the primary topic of discussion. i was first diagnosed with NCS at 17 myself, though did have some problems prior that were only made sense of after the fact (GI issues, dizziness, numbness/ tingling, fatigue, etc). the teen years are in fact a very common time for various forms of dysautonomia to rear their ugly head, though i realize that doesn't make dealing with any of it any easier at the time. and while it may be hard to believe, there is a lot more information & help now than there was eleven years ago (when i was 17). there's honestly no way at this point to know for certain where your daughter will be health-wise a year from now, 5 years from now, etc, but statistically there's a great chance that - to some degree - she'll be able to find some degree of relief from her symptoms. i know it's easier said than done, but the key is to find a knowledgeable doc who is both willing & able to get her to the best place she can be through a combination of lifestyle & medical interventions. i know you said that she's seen numerous specialists already, but has she seen anyone who specializes specifically in dysautonomia? they don't have "magic fixes" nor all of the answers, but can make a HUGE difference in getting the best treatment possible. there is a physician list on the site and/or if you let me know what part of the country you're in and/or how far you are able & willing to travel i'll share any thoughts/ info that i have. i'm sure it must be extremely tough to be walking through this with your daughter, but she's lucky to have you seeking out information & support in the way that you are...many people don't have this type of family support. i hope you're hanging in there as best as you can be in the midst of a tough situation, including taking care of yourself. hope this helps, melissa

i give myself an IM (intrramuscular) injection of B12 weekly in my thigh. if there's someone else around on the day it's due (i.e. doctor or nurse) i'll occassionally get it in my arm instead as my thighs can get weary of all the pokes (i have to give myself other shots there too...at times up to 4 times a day). the B12 shots don't particularly "help" me in that they don't improve anything, but the one time several years ago that i became quite deficient my peripheral sensory neuropathy was quite a bit worse. so...in a round about way i suppose that i am "better" with the B12 than without. as an FYI re: the discussions about injections vs. sublingual, generally speaking sublingual B12 is just as effective for most people. unless you have a specific problem hindering B12 absorbtion (i.e. pernicious anemia) or an extremely severe GI situation (i.e. dependent on IV nutrition &/or jejunal tube feedings) there's usually no reason for injections, at least not on a long-term basis (as they are sometimes used short-term to correct a serious deficiency most efficaciously). hope this helps, melissa

kathy et al - my prior posts detail my posts more specifically, but i didn't have any horrible side effects during the treatments. i had a few minor issues but nothing that i couldn't tolerate nor anything particularly worse than what i deal with on a regular basis in the first place. But - quite honestly - my health had/ has declined to a point that I would have been willing to put up with a LOT if it had any logical chance of it offering improvement re: nausea, i have some degree of nausea regularly with higher "spikes" including vomiting at least several times a week (my GI tract is severely impaired to the point that i get no oral hydration/ nutrition & require gastric drainage 24/7) ; i still had nausea during/ after my IVIG treatments but not any more than what i have "normally". i did, on the other hand, deal with some headaches. in total i had five 5-day IVIG treatments, the first in the hospital & the second at home through home nursing about a month later. i had a bit of a dull headache during the last 2 days of the first month's treatments and during most of the second block as well as a few days after. after my first treatment week i was just the same as just before; after my second week of treatment i was back to my pre-IVIG state within 48hrs or so, & not horribly worse (just the minor headache) for that time. the headaches were more of annoyance than bad pain...nothing like migraines that i get at times nor like the GI or neuropathy pain that i deal with regularly. i may have taken motrin and/or tylenol a few times but can't recall for sure. truly nothing too bad, though i have been told over the years that i have a pretty decent pain tolerance. the liver reaction that i mentioned in my other post was the only "side effect" that caused me to stop the treatments. if i hadn't had that problem we had planned on doing at least 4 more of the 5-day treatments on a monthly basis (total of 6 treatments over 6 months). but the liver reaction made it too dangerous to continue. it wasn't anything that i had any physical symptoms of though but rather something that showed up on my bloodwork just after my second week of treatments. i was already on TPN (IV nutrition) at the time too though which puts a HUGE amount of stress on the liver so that may have been part of the issue for me as well. the IVIG was definitely the biggest factor b/c i was on TPN for some time before the IVIG & have been for most of the time since & only during (& just after) the IVIG treatments did my liver function numbers skyrocket to dangerous levels, but the two things combined may have had a synergistic affect that wouldn't factor in for most people. i'm guessing you're mostly looking for info rather than advice, and obviously it has to be a choice between you and your doctor, but IF it's something that your doc recommends & you trust your doc & your day-to-day health is truly poor, i'm one who would definitely encourage you to give it a go. i'm still curious though if you've had the bloodwork done for the specific antibodies? if you find out that you have the antibodies then you have a lot higher chance of improvement with the IVIG treatments so if you're on the fence about your decision it might help you to have the test done. hope this helps, melissa