Sunfish

hi nancy - i'm not sure about the addition of having something to drink, but testing for catecholamines in different positions is something that can be done at any lab as long as they have the proper instructions and is something that a good number of people on the forum (including me) have had done. it's not exactly a "common" test amongst the general popualation but is fairly common within the world of dysautonomia. i would guess that this is the test you're referring to, and perhaps they are adding an additional step of seeing if added fluids affect results? i have had testing done several years ago (while a research patient at vanderbilt) where BP/ HR was tested before & after additional fluids so perhaps they're doing a combination of the two for you? the good thing about having it done at mayo is that there is less likelihood that they'll do it incorrectly which, unfortunately, is a common occurance at labs that aren't as used to doing it. other than the fact that you'll be asked to stay in a certain position (lying, sitting, standing) for a particular amount of time the test isn't any different than a normal blood draw. hope this helps, melissa

hi kathy - i've been VERY quiet on the forum for the past month or so & haven't "met" you yet but i'm actually someone else who gave the treatments you're referring to a try....almost exactly two years ago. my body ended up disliking the IVIG pretty drastically, though not in a way that my symptoms worsened; essentially my liver responded as if the IVIG was a toxin such that continuing the treatments would have put me into liver failure, but i don't have any residual trouble/ problems (liver or otherwise) so am still glad to have been able to give it a try. but rather than give all the details again now with my memory not as fresh, if you search my screenname &/or IVIG (which you may have found by now anyway) you'll get the whole scoop on my experience. i posted before, during, & after receiving the treatments so you should find quite a few of my posts. IVIG is VERY pricey & isn't without risk so not generally a first line of treatment but something that - for certain people - is worth considering. it's more specifically indicated (more quantitative evidence of its efficacy) for those who test positive for a particular antibody; i didn't have the antibody but the theory amongst the docs was/ is that some people may have a not-yet-identified antibody that the IVIG would work against as well. i would be curious to know if you have the antibody (or if you have even been tested for it)? my health was at such a point of deterioration that we didn't have much to lose by trying the IVIG & despite it not working for me i'm still very thankful to have had the opportunity to try it. my doc(s) didn't have trouble getting my insurance to approve it but for me they were able to present it as a chance at being able to stop other life-sustaining treatments (IV nutrition) that are extremely expensive as well so that may have made the rationale a bit easier (b/c if it had worked it would have in fact been much less expensive for my insurance within a few months time). if you have trouble finding my past posts and/or have additional questions for me don't hesitate to let me know as i'd be happy to chat with you further. melissa

hi summer - my prior post was solely re: the technical issues of the posts flop was trying to reference. now i'll try to respond a bit to your original questions. as you mentioned, i do think that most (if not all) of the autonomic docs are probably quite familiar with the difficulties patients have in getting diagnoses & thus are fairly used to the sense of relief often felt when the diagnosis "finally" comes. people's experiences with docs still varies greatly, though, even with the "autonomic docs" so to speak, so it's great to hear that you had a good experience re: your doc taking as much time with you as s/he did following your positive test results. in regard to your questions about genetic as well as hyperadrenergic POTS, the research is definitely still "in the works", as it is within many (most) realms of autonomic dysfunction. some of your specific questions, however, do have answers. at this point in time, most cases of "genetic POTS" are designated as such only clinically (i.e. various family members showing symptoms) rather than via definitive genetic testing. "genetic POTS" is definitely not always hyperadrenergic POTS, nor is hyperadrenergic POTS always genetic. additionally, it's possible for a person with POTS to have a hyperadrenergic reaction in a given situation at one point in time (testing or otherwise) but not diagnostically have "hyperadrenergic POTS". confusing, i know, and may or may not apply to your situation, but thought you'd want to know that additional piece of info to add to your confusion . last but not least, your reaction to the SNRI you tried may or may not have been related to the "type" of POTS you have. while it's true that understanding the mechanism behind your POTS (hyperadrenergic, neuropathic, etc) CAN help direct treatment/ meds to SOME extent, it's FAR from an exact science and is by no means the only factor that plays in to how certain people handle various medications/ treatments. as you'll see frequently on the forum, different people react very differently to different meds; sometimes there are "reasons" that make this understandible but perhaps more often than not it's no more than trial & error. hopefully you'll be able to see your doc again for additional questions that have come up since your testing/ diagnosis? it's also important to realize, though - for the sake of your own sanity - that in the land of dysautonomia, there are many questions that simply don't have clear answers. so while it's good to explore things & learn what there is to learn, it's also important to not drive yourself crazy trying to find THE ultimate answer for every question. hope this helps, melissa

flop & summer et al - numbers aren't generally a way of locating/ referencing a prior post. the best way to reference earlier posts/ threads is usually with the actual link to the post, so hopefully you can post the links flop? i've tried a few things to try to pull up a post with a number but haven't had any luck. if you're having trouble posting links after a search let me know & i'll do what i can to help. sorry i can't be of more help! melissa

hi mary - as the responses have shown already, there are actually a large number of things that can cause trouble with your voice, hoarseness, etc. FYI, some people have reflux without any symptoms other than hoarseness, so that is still a possibility for you. i almost completely lost my voice several years back and while i initially blamed it on strain/ overuse (i was coaching & teaching swimming full-time at the time so lots of opportunity to use a loud voice!) it didn't take long to realize something else was going on. for me it got to the point where i couldn't even get out a "hello" to answer the phone. i ended up having a cyst on my vocal cords that required surgical removal, something totally unrelated to any yelling i may have been doing! i was a singer as well so had thought i had been using my voice properly, i.e. not abusing it, so in reality it made more sense to me that i hadn't caused the problem via misuse. polyps on/ around the vocal cords can be caused by misuse (though not always) whereas cysts aren't related to use/ misuse but rather just happen on their own. but that's more than you need to know at the moment as it's only one of many possibilities for you. ultimately, if this isn't a fleeting problem for you, you may want to get an appointment with an ENT (ear nose & throat doc) as s/he will very likely be able to help you figure out what is actually going on via an office exam. hope this helps, :-)melissa

i take stimulant medications to help with this. currently daytrana (a patch) but in the past also used concerta with success for a significant period of time. both are long-acting relatives of ritalin. not everyone agrees with this approach nor is it effective for everyone but for me it significantly improves my very limited functioning. without these meds i cannot read or write in any meaningful way; with them i can, though by no means all of the time. but without them i never can. these meds also have vasoconstrictive properties so can help with BP/ HR regulation as well. those who tend to have problems with overstimulation, anxiety, etc are less likely to do well on these meds but i've never had issues with these things (overstimulation, anxiety, etc) but rather most everything in my body is too slow. regardless of the meds though there are definitely still times - measured in anything from minutes to months at a time, though generally it's hours or days - where i can't read/ write in any meaningful way. melissa

any chance you're using the elixer/ liquid variety? if so then the possibility that the quick hit of sugar/ sweetener might be the issue, rather than the med itself? that's the only thought i have to offer... i take liquid ibuprofen as part of one of my pain med combos to help combat inflammatory/ adhesional pain in & around my intestines. it does nothing for me on it's own - good or bad - but in combination with oxycodone reduces the amount of the oxy i need to bring my pain down to a tolerable level. i don't use it all the time but rather intermittantly...perhaps on average 4 doses of the motrin/ ibuprofen a week or so? it's also my first-line fever-reducing med as it works quicker and more effectively than tylenol for me, at least if /when the fevers/ chills are particularly high/ severe, i.e. 102-107. for lower fevers tylenol does okay for me, but for higher i start with motrin & then stagger with tylenol for maximum relief. last but not least ibuprofen is sometimes part of my "migraine/ headache" cocktail, though i'm lucky in that my migraines, though pretty bad when i have them, are not something i deal with often (generally less than once a month). the issue of stomach irritation is nonexistant for me b/c i can't take any meds by mouth &/or into my stomach at all. my only option for "oral" meds is directly into my J tube (intestines), though i use an assortment of patches, injections, ointments, etc as well. years back i motrin/ advil/ ibuprofen definitely DID irritate my stomach when i took it by mouth, though it wasn't intolerable (or risky) enough that the irritation wasn't outweighed by the benefit it provided on a VERY occasional basis, i.e. 2-3 times a year or so (both per my experience & my doctors' recommendations). ibuprofen has never had any effect on my autonomic issues, though if/ when it helps other pain or fever it indirectly helps b/c both of those things make me feel worse overall and have a negative effect on my BP & HR regulation. but i suppose all of thse ramblings don't have much helpfulness in regard to your original question katherine...sorry to go off on a bit of a tangent! again, my primary thought for you would be if you happen to be using a liquid preparation. another one that is a bit more of a stretch would be that you could be having a reaction to an inactive ingredient, particularly something such as a dye or coloring agent; in theory this could apply to any form of med. not sure how likely any of my thoughts are, but thought i'd throw them out just in case they struck a chord with you. otherwise i'm at a loss as the only reaction i'm pretty familiar with is GI upset/ irritation. good luck solving your mystery! melissa

hiya gals - yes, i'm up late, but i didn't wake up today until 3pm so am more than a bit off kilter sleep-wise (slept 15 hrs last night). but anyway...my sensitivity, aka "what happens" when i can't tolerate things on my face, actually has nothing to do with breaking out, as that's not really a problem for me. em it sounds like my problem is a bit more like your mom has with her eyes. my skin simply burns like crazy & gets blotchy red. it happens right away & feels like someone has poured acid on my face. i'm not sure exactly what it might be that causes the reaction (though i haven't tried incredibly hard to pin it down). and while i have this sensitivity (whatever it is) there are some things that one might think would bother me that don't at all. so who knows. you're correct emily in remembering that i have issues with some fragrances too, though it's not all fragrances & seems to be an entirely different issue than my problem with creams/ lotions on my face. frangrance - wise i generally can't handle anything floral, though real flowers are usually okay (though i think i technically am allergic to many of them, it's never bothered me to have them in my room). scents that are in the fruity, fresh/ clean, spicey variety don't bother me, though like anyone would i prefer some more than others. i'm actually pretty obcessed with scented candles & my favorites are ginger, basil-lime, pink grapefruit, & peppermint. i use scented lotions & as long as they're not floral i'm usually okay with them. floral stuff tends to just set me off on crazy sneezy spells. not as bothersome as the rashes/ burning i get from lotions that bother my face but still not fun! not sure if any of this helps with deciphering what i might or might not be able to tolerate, & i'll be honest that i'm not sure if i care enough at the moment to bother with risking it. i don't like my pasty look one bit but it's also not even close to the top of my list of concerns these days so am not sure i'll bother with trying it when there's the chance of it adding to my list of physical annoyances/ discomfort. after a few years of new make-up i did acquire some "bare essentials" brand items a few months back that i like a LOT. i try to use it on the few occassions i make it out for something non-medical & when i just use it to give me a bit of color & don't bother with anything else (i.e. eyes) then it literally doesn't take me more than 3-4 minutes & gives me a healthier look without looking at all like i have make-up on. so i may just stick with that for now, though do wish i knew if the gradual tanning lotions might work for me as it would be great if they did... melissa

i "fixed" the link for you! it's actually really simply...you were probably trying too hard b/c all you needed was to make the address complete by starting with the "http://" at the beginning of the address! the goodies DO look very good...wish i could try them! melissa

kristen (or anyone else who's used this or something similar), so you generally have super sensitive skin, at least on your face? i'd love to try/ use the stuff but my face generally can't tolerate anything that's not marketed for "sensitive skin", and sometimes not even that. this goes for even "good stuff", i.e. i can't use clinique's face lotion nor mary kay's nor oil of olay's if it's not the "sensitive skin" type. (nor lots of other types that i've tried over the years!). i have found a few that i can tolerate now so am set in the plain lotion department but would love to try some of the gradual tanner stuff if i think i'd have a chance with it. the rest of my skin is sensitive too but not nearly to the same extreme as my face so i suppose if i bought something for my face & ended up not being able to use it on my face i could use it elsewhere, though i'm not sure having a bit more color elsewhere while still having a pasty white face would necessarily help anything... :-)melissa

hi endure - i just thought i'd chime in with a bit of info on fentanyl to help you understand it's use/ indications a bit better. fentanyl is used intravenously, as you have already experienced, by anesthesiologists for both its sedative & pain-relieving properties, generally in combination with other meds. outside of the hospital/ OR setting, it is only used in patch form, and the patch is something that must be used continuously. b/c of the properties of the med, the way it's dosed/ administered, etc., it actually can't be used in someone as a "start-up" narcotic. in other words, the patch can only be prescribed/ started on someone who is already considered opiate tolerant; to be considered opiate tolerant you have to already be using a certain amount of another opiate medication on a regular basis (generally oxycodone, morphine, or dilaudid). so, while i understand your frustration at your lack of options for pain control and while it seems that your doctors did a pretty rotten job at explaining to you why fentanyl isn't an option, it actually isn't (at least based on what you've shared here). using it incorrectly, i.e. in someone such as yourself who isn't "opiate tolerant", can be very dangerous...even to the point of causing death (usually due to respiratory depression). so...while your docs' explanation of fentanyl being used for severe pain in cancer patients isn't the whole story, the bottom line is the same. because of it's half-life (time it stays/ works in your body) & other properties, it's simply not a med that's can really be used outside of the hospital/ OR setting except for in the patch that is, in fact, designed for pretty severe/ constant pain that requires round-the-clock opiate meds (aka narcotics). while this obviously isn't "just" cancer patients, people with cancer are likely the population that fill this criteria most often. since i'm already rambling on far more than needed, i'll round out my "fentanyl 101" course by letting you know that the patches are usually changed every 72 hours (3 days). the first patch takes about 24 hours to reach its maximum effectiveness, wherein other meds are still needed, in decreasing amounts, during that time. i was actually just started on the fentanyl patch myself a few weeks ago due to severe pain that we could no longer keep a handle on with "oral" meds (for me "oral" = via my J tube). i'm far from the typical dysautonomia patient though, so my pain issues are different than many & my docs likely have a different approach to treating me. when it comes to pain control/ management, i'm generally managed very much like a cancer patient might be. after several weeks of my GI pain keeping me from more than 2-3 hours of sleep at a time on a "good night" (b/c that's how long my current pain meds would take enough of the edge off for) my doc encouraged me to start the fentanyl patch. i knew it was a pretty high level pain med so was hesitant, but i trust my doc immensely & was pretty desparate for some pain relief, not to mention sleep, and b/c all of my "oral" meds need to be liquid or crushable (so that they can go into my tube), the fentanyl patch was literally my only option for a longer acting pain med. for me the fentanyl patch has been great in that it definitely provides me more constant & consistant pain relief than i was otherwise getting, most notably during the night/ while i'm sleeping, but at other times as well. it does not eliminate my pain, nor did i ever expect it (or any other med) to do so, but it has made it manageable most of the time. i still have to take additional meds at times for breakthrough pain, but all in all i am functioning MUCH better. so...the fentanyl patch definitely has a use & can be a great tool in pain management, but for the many reasons i described above it wouldn't be a safe option for you, at least not at this point in time. i obviously can't say a thing about any other aspect of your docs or the quality of their care/ communication, but regardless of any other issues, their refusal to give you fentanyl may be as simple as the fact that giving it to you would be downright dangerous. hope this helps explain fentanyl a bit but feel free to let me know if you have any questions. i do hope that you're able to find a better solution for some relief soon, melissa

hi jacquie - zofran is now available in generic, which i've found to be just as effective as the name brand. it did used to be quite an ordeal to get the name brand (even when no generic was available) b/c zofran truly is VERY expensive. my rx insurance is quite good & while they did allow me one fill of the prescription (15 8mg sublingual tabs i think?) after that it required paperwork, prior auth, etc. i was always able to get it but to be honest with you it's now likely to be actually more difficult to get the name brand since there is a generic available. unless you can prove that you're truly allergic to something that's in the generic & not the name brand version, it's not likely that your insurance will allow you to try the name brand without first trying the generic. if the generic doesn't work for you then your doctor may be able to convince them to let you give the name brand a try. i really haven't been able to tell the difference between the two though (other than packaging). over the years some generics haven't worked for me as well as the name brand & once i've actually had a generic work better for me than the name brand; in this case, however, the med is interchangeable. for me zofran doesn't do anything for my low-level nausea that i have almost all of the time, nor does any other med. it does, however, take the edge off for me most of the time when i have a huge flare/ burst of nausea, i.e. vomiting &/or dry heaving or very close to it. IV zofran actually works best for me but the ODT (sublingual tabs) are certainly better than nothing. i've found recently that taking meclizine hcl, another anti-nausea med, in combination with the zofran, helps me more than either one of them alone. if you haven't tried that med it may be another option for you, and is certainly much cheaper & thus easier to get than even the generic zofran. if you're actually vomiting it may not be as helpful as i'm not sure if it comes in a form other than a pill. i can manage the pill only b/c i have to put all of my "oral" meds into my J tube anyway, which means they can get into my system even if i'm vomiting (is my stomach is bypassed). while zofran is definitely considered to be one of the "best" nausea meds, the reality is that everyone is different so what is best for you is what works for you. and i know many people in the gp community who have found that zofran isn't ultimately the best anti-nausea for them. i do hope you're able to get your hands on some form of the med to try & that it then brings you much relief! melissa

i've been on just about every antibiotic in the book & have never had any problems with any of them, including cipro. this does NOT mean that antibiotics should be taken without discretion, but if you have a documented UTI that your doctor feels is necessary to treat and you don't have a history of problems with antibiotics i wouldn't worry. if you read the full prescribing info for almost any drug you'll notice that almost ALL of them have a huge list of horrible sounding side effects, complications, etc. it's good to be informed/ aware but most of the things listed are often things that happened to one person when taking the drug & aren't even for sure related to the med. hope you're feeling better soon, melissa

hi sara - just wanted to let you know that i've been thinking of & praying for you dad & your family this week of surgery. i hope things went as well as possible & that he's as comfortable as he can be during the period of recovery. melissa

while the three meds mentioned are definitely some of the most popular, so to speak, they are FAR from the many meds that are available to try & with which Dr. Grubb (& many other docs) work with pretty extensively. obviously you have to make your own choice about travelling to see grubb (or any other doc for that matter) and i am NOT saying that grubb (or anyone else) has a magic pill or any guarantee of better treatments for you. BUT i didn't want you to think that the three meds mentioned are the only ones being used. in the years (almost 11 now) that i have been seeing grubb we've used more than ten different meds (at least) alone &/or in varying combinations. and ernie, i definitely understand your trying to make the best decision in regard to whether travelling is worth it in relation to finances & energies. i know it's not the exact same situation, but i am continuously trying to find the balance between staying in touch/ following up with my various physicians to the degree that is helpful & necessary without using more of my energies & finances than are necessary when the reality is that some of my issues aren't going to change such that i don't need to see a doctor to be told what i already know (again!) good luck to both of you in your decision making.... melissa

hi ernie - i've spoken with dr. grubb recently and based on that & my own familiarity with the research, i don't think there are really any new meds available to dr. grubb (or any of the specialists for that matter) to try. there may be slight variations, i.e. the daytrana patch instead of ritalin, concerta, adderal, etc. but nothing new in terms of an entirely new class of drug. hope this helps, melissa

hi patti - just had a quick addition for you on the vertigo topic. i just had to look something up about a med i've been using intermittantly the past few months for nausea & noticed that it's also used/ indicated for vertigo so thought i'd mention it to you. it's a fairly short acting drug so might be an option for some relief even if the vertigo chrissy's dealing with is (hopefully) a short term issue (though obviously you'd want to rule out the med side effect possibility first). The med i'm referring to is Meclizine Hydrochloride (generic name); the name brand is Antivert. i've been using 25mg (via my J tube) as needed for increased nausea spikes (often in combination with zofran odt). it's nothing magic for me but does seem to help some without (for me) causing any added problems. obviously no way for me to know if it might help chrissy but thought i'd at least mention it as something that's helped me a bit without hurting. melissa

michele - glad to hear you're continuing to plug along with the machine/ mask. i hope it gets easier & easier for you but hear of so many that toss aside the machine after a bit of trouble never to return, which is unfortunate. lest you think i'm enjoying better sleep than i am, i suppose i have a fairly broad definition of "good" these days. while i did used to enjoy nights of uninterrupted slumber, those days are now only memories. and fond ones at that:-). these days, more related to various machines beeping/ buzzing as well as bladder issues, pain spikes, etc, i consider it a "good" night if i wake up 3-4 times rather than anything more than that. i do get the occasional treat of a 2-wake-up night but it's a rarity. so don't waste any energy being too jealous!!! i can't offer any wisdom re: the snoring issue b/c i've never snored (the anomoly in apnea land!) as a continuation of the name discussion, i think i'm a bit more attuned to different/ unique spellings b/c i'm an "anne with an "e"" middle-namer who always wants to make sure that "e" on the end is included! that and i'm a details gal who is at times TOO picky about the "little things". ah well. hope your nights continue to get better & better.

hi sarct - i'm just getting to your post now b/c - ironically enough - my abdominal/ intestinal pain has been particularly severe for much of the past 2 days such that i haven't been able to reply. go figure, eh? so sorry that you're dealing with pain to the degree that you are currently but so glad to hear that you're being attended to promptly by docs as that's definitely not always the case. i'm sure the idea of surgery isn't too thrilling for you, but try to take a deep breath until you know for sure what you're dealing with. and - as wacky as it might sound - know that if you find out you do indeed have a hernia & that surgery is the way to fix it, you'll have at least one person who is incredibly jealous!!! of course i wouldn't be jealous of the surgery part, but if there was a surgical option to resolve or even improve my pain i'd jump at it in a heartbeat!! i am NOT saying this to minimize all that surgery entails (as i've several operations in the past year alone) but only to - hopefully - give you a bit of a grin . i realize that i'm taking a bit of a risk in employing my dark sense of humor with someone who is newer to the board & doesn't know me well, so if it's not your thing then i wholeheartedly apologize. seriously, though, i do empathize with the abdominal/ intestinal pain issue. i have some level of abdominal pain/ discomfort almost all of the time but it has reached new heights over the past few weeks to the point that for over two weeks i didn't get in more than 2-3 hours of sleep at a time and was thus, on top of everything else, beyond exhausted. thankfully we're managing my pain a bit better but it still gets unbearable at times so i truly "get" how limiting and all-encompassing it can be. my pain isn't something that has a fix (combination of psuedo-obstruction, inflammation, & adhesions in & around my intestines) so i truly hope that yours does! it's not uncommon for those with autonomic problems to have some GI issues but severe pain falls outside of what's typical. so glad that you've already been able to see not only your primary but the specialist & hope you have the answers you need (& thus relief) soon. of course it would be extra great if there's an answer/ solution that doesn't include surgery, but most of all i just hope there's a solution for you! let us know when you find out more... melissa p.s. don't know if you're tried it or if it's something that will help the pain you're having, but i'm addicted to my heating pad! it doesn't take the pain away but makes managing it a bit better.

hello again i hadn't noticed before that you're in ohio so wanted to add an extra hello from another ohioan. i'm not nearly as close to you as patti/ chrissy but still share the same state addy so a lot closer than many. additionally i lived in the cleveland area for a while and had to utilize almost every medical specialty while i was there so don't hesitate to track me down if you need any doctor recommendations along the way, autonomic-related or otherwise. after not having been there in about a year & a half i was actually just at cleveland clinic last week for 2 days and may be back again soon; i'm in the toledo area now so about 2 hours west of cleveland proper. melissa p.s. for what it's worth, you're not in the worst locale in terms of access to medical care for autonomic problems and/or a medical system that at least has some familiarity with their existance. cleveland in particular and ohio in general has a lot better care in this regard than many other places throughout the country. doesn't mean it's all smooth sailing, but know that it could be much worse!!

hi patti - glad to hear that you can at least check this one issue of the list of "things that need to be dealt with"! i owe more people an update than i can count so will try to post one soon, here and/or on my website. in short, i'm a mess in many realms (pain, infections, dysmotility, nutrition, etc) but in some ways am doing better than i should be considering? i know that doesn't really doesn't tell you much of anything, but i don't want to take over this post with my ramblings so will leave it at that for the moment. it's always good to see you though so definitely do let us know whenever you're in town and able to squeeze in a visit. we (my mom & i) were actually in cleveland last week (at cleveland clinic) for two days. we thought it was going to be one really long day but it ended up being two; since we didn't know that we weren't prepared to stay over (largely in terms of what i would have needed medically...not the sort of stuff that can be picked up at the store easily!). the back-to-back day trips were definitely exhausting and wouldn't have allowed for any visiting, but there may be some additional cleveland visits on the agenda in the near future so you'll have to refresh my memory again re: how close/ far you all are from the city? there's a slight chance that an inpatient stay may even happen so i'll definitely let you know if that happens in an unashamed plea for visitors!! and nope, i unfortunately don't have any words of wisdom in the vertigo department. you may want to post that question separately as i know a few members have dealt with it more extensively and thus might have something more to offer. a search is certain to bring up some past discussions too so that's an option if you're up for some searching/ reading through of old posts. thankfully vertigo has been one thing that hasn't been a huge issue for me over the years. i've dealt with it just enough to know it's miserable, but only in more acute realms, i.e. inner ear infections & a reaction to a med that i shouldn't have been on in the first place (when a doc was convinced i had epilepsy many years back). for that reason though i definitely wouldn't rule out the possibility the it's med related so am glad to hear you're planning to call the ENT to ask about that; in the mean time have you checked the full prescribing info yourself? i've never been unable to find that info online (though sometimes it's an easier find than others!) melissa

hi christine - welcome to the forum (though, of course, sorry you have reason to be here in the first place). you'll find that it is VERY common to have and increase in signs/ symptoms related to the menstrual cycle for those with POTS &/or other dysautonomias. i've never been one to have bad cramping or other more "traditional" hassles with my period but the few days prior to my period used to correlate with increased dizziness/ fainting for me pretty dramatically. when my periods were regular we could treat this with extra meds for those few days but when my cycles went wacky (in terms of regularlity) this didn't work so well so i started continuous birth control, something you'll discover is done pretty often. for me it was a good decision and while i've changed the specific med a few times over the years i've never regretted limiting my period to the 3-4 times a year i now get it. i definitely appreciate your not wanting to be on more meds than you have to be, but when some people are in the situation wherein taking a med doesn't bring bad side effects and means being able to keep working or being able to drive safely and/or being able to get to the bathroom independently and/or other significant quality of life issues it can be a no-brainer. i'm NOT saying this is necessarily the case for you as it's a very individual thing, but you're definitely not alone in noticing a connection. the connection is thought to be directly hormone related for some people and/or related to the fact that, as a side effect of hormonal changes, ALL women have a slightly lower BP at certain times during the mentrual cycle (generally the days right before bleeding begins) and in turn this little BP change can wreck havoc in someone who already struggles with issues with BP/ HR regulation issues. i haven't had problems at the dentist but know that some others on the forum have so hopefully some of them will chime in. there have been several discussions which you can find as well via a search. you'll find a lot of discussion about menstrual "flares" and birth control usage as well if you're up for more reading. hope this helps, melissa p.s. if you haven't used the search function before, it's toward the upper right portion of the screen.

ahhhh. i read this when you first posted but since it resurfaced today i figured i'd chime in with the affirmation that it is ALWAYS great to hear the good doc stories. while most (if not all) of us have had varying numbers of not-so-good stories (to put it mildly), it's important to remember that there are good ones out there. generally speaking i've had good experiences with anestheseologists over the years, but it's always good to get nice reports of ANY specialty! melissa

hi katti - welcome to the site. to echo the party line, sorry you have reason to be here, but seeing that you do, glad you found us! and as a completely unrelated aside, i like your name. just out of curiousity, is it said "katie" or with a soft "a"? back to the matter at hand, it's definitely possible to have a high resting HR & still have a POTS diagnosis. BUT - and this is a big BUT - as others have mentioned already, i'd wonder if your "resting" HR was in fact actually a true resting HR. that means lying down for a decent amount of time, no talking, not much moving, etc. your true resting rate may not be as high as it appeared to be. but, either way, your TTT does seem to point you in the direction of POTS. good luck with your upcoming appointment. sorry that you have to travel but know that you're not the only one! and it's great that the doc you'll be seeing seems to be sensitive to limiting your travels/ appointments. it's understandible that you're eager to get some answers NOW but tuesday will be here before you know it where you'll - hopefully - have a good appointment with someone who is more informed that the doc who did your initial testing. hope this helps, melissa

hi art - aside from looking at DINET's physician's listing (as angela suggested), if you let us know what part of the country you're in people may be more likely to chime in with some suggestions/ thoughts for you. i know you said you're able/ willing to travel, but it usually still makes sense to pay some attention to where you're coming from. melissa