Lulu

thanks for the support, y'all. i've slept a lot today and just move slowly & with some ouchiness. i'm glad to know about the recovery stuff, i'm terrified that the one thing that still mostly works (my brain, and that is up to some debate ) will be affected>> school, etc. this is my panic side. sally i am sorry to hear about your daughter & i hope the neurologist helps she is lucky to have caring parents, you all hang in there! i'm also sorry to hear of MM's & jdqm's concussions from fainting...i've been lucky so far in having a "head's up" with my faints, i guess we all have to be careful with ourselves with the fainting and added recovery times... does everyone have extended recovery times from stuff in general??? [i generally do, hope this time's shorter ] take care everybody, thank you. peace & light, lulu

Hey folks- I had such a GREAT day yesterday--I was so happy to be feeling pretty A-OK (for me)& to be out with my husband & our wonderful dog, visiting his fun daughter (a 2 hr drive I managed perfectly--woo hoo!) and WALKING at our favorite park on the Maumee River in NW OH, near where we all used to live. it was gorgeous weather and we saw deer, heron, friendly people and our dog swam in the river. It was a riot!!!! UNTIL, on our way to an open field to play frisbee (easy game for me to play with the dog, i throw, he brings back ) we encountered some boys playing softball. one of them missed his catch, and our dog got it! it was really cute, cuz the dog loves kids and playing ball. we got the ball back to the kids and turned around, resuming the walk to our destination....Hoodoo's (yep, that's our dog's name)leash was wrapped around the fingers of my right hand and the handle in my left. he's not all that big (70#) but his breed (mostly rottweiler and australian sheperd) make him STRONG & FAST. so i was "driving" him w/2 hands that was the last i remember until i woke on the ground, bruised, bleeding and seeing blurry. i've been told one of the boys threw the ball to the dog after we weren't looking....and the dog just went after it like a shot from a cannon. i was knocked off balance to the ground and then dragged for at least 10 feet. my injuries include: concussion, sprained ankle, sprained knee, torn skin on right hand (3 fingers-palm side is missing top layer of skin), a strange strangulation-like wound around those fingers, extensive bruising and abrasions of left forearm and other body areas, and whiplash. the dog and boys are OK. ha ha i feel pretty beat up & a little defeated today. it's hard to type with 1.4 hands and get around w/one working leg & difficlut to get comfy & i feel more POTSY than usual. (memory worse than ever, headache, dizzy--no surprises there, just frustrating) i'm glad this came when i was out of school, because i'd never be able to function. but i'm sad, cuz i was looking forward to, i dunno, actually enjoying my vacation!?! any ideas on concussion recovery time for POTSers or dysautonomics? (is that a word even? if not you can join me again in the revolution of made-up words ) thanks for any ideas or suggestions...prob'ly won't post for a bit...this has taken me abt an hour. (i got knocked back to the second grade! ) peace, y'all, lulu

ha ha LOL you're certainly right about the humor, kel!! i hope you get your answers soon! hang in there! peace, lulu also, welcome to the forum!! :)

((HUGS)) hang in there and feel better soon! keep us posted on your results sending good vibes your way, peace, lulu

i've had this at times, but it's generally fluctuating: i have ongoing problems with temperature regulation. i take warm showers and get under and electric blanket repeatedly in the winter, but rarely during this time of year, unless i get really cold from too much A/C! one thing dr. grubb told me was not to let myself get too cold/hot or in pain for too long, (presumably b/c this sets off autonomic responses?) i know you're still trying to figure out what's actually going on with you, but i did want to put that out there, in case it would be helpful to you (?) good luck, cardiactec! you've sure been having quite a time! sorry you're having such troubles! maybe there are some answers and you'll find them soon? i hope so, and feel better too! peace, lulu

wow!! excellent!!! hope springs eternal!!! keep us posted, please! and thanks for sharing

hi, linda, i have nothing to share except my heartfelt sympathy for your travel situation and my sincerest hopes that you find answers and relief from that pain very soon!! i wish you support and strength for your continued journey, and am so glad you have a supportive spouse i know i'd be l-o-s-t without mine; goodness, what he's put up with and helped me through!! may you both be blessed. thank you for letting us know how things are going with you peace, lulu

thanks everyone!! i really appreciate your kind thoughts

Hi, Mrach! i would agree with dizzy dame....get your levels checked. and maybe, too, in the meantime, make sure you're staying well hydrated. that can help with almost any condition, especially POTS. by the way, i've been vegetarian for almost 20 years, and my biggest dysautonomia problems started after a virus *and* a switch to a vegan diet around the same time. the switch in nutrients did not help my body fight the virus and so for me, the virus was enough to kick my dysautonomia into full gear, though i'd had minor varying symptoms for *years.* so maybe your new diet contributed in some indirect way?? i hope you get some answers and feel better soon! and welcome to the forum!! peace, lulu

dizz- hope the IV fixes you right up and you don't get the Itchies! keep us posted and hang in there sweetie! ((HUGS)) lulu

Break Reminder Freeware this is an older version, so it's now freeware. newer versions (w/more bells & whistles) cost like $30 or something. but this version is A-OK. Hope it's helpful!!

heya daniel, um, where do you find that information, and specifically what are you referring to? bear with me, here, i feel like i just got to pitch in 2 cents here human beings are designed to move. activity on whatever level you can tolerate is ESSENTIAL. bedrest will not help you live longer, as for the tachycardia, those who have it generally benefit from staying in condition, not bedrest. My EP cardio (Dr. Grubb) said although it's hard to do, especially for those of us who have difficulty exercising (I'm one of them!) that is even more important to really push yourself each day to stay in condition as much as you can. Get this: From my nursing text, Fundamentals of Nursing by Potter and Perry (both RN's and PhD and EdD, respectively), 2005, p. 1427: " The effects of muscular deconditioning associated with lack of physical activity may be apparent in a matter of days. The normal individual on bedrest loses muscular strength from baseline levels at a rate of 3% per day. Bed rest is also associated with cardiovascular, skeletal and other organ changes." Even if you're down for a few days, you still have to recondition yourself. Easier said than done, lemme tell ya! A Study on Bed Rest from the American Academy of Family Physicians warns doctors to be absolutely sure it is in the patient's benefit to have bedrest because it is more often than not detrimental. This re-emphasizes what marnian posted from her doc & what lois and dizzy dame said. The danger in tachycardia really depends on the cause, from everything i can find (if you want a list of sites, PM me) and if the tachy is relatively short in duration or (mostly) controlled by meds, the long term danger drops significantly and is much less a danger (provided it's in the above mentioned parameters) than bedrest everyday....There are meds that can regulate your heart rhythm & help your tachy stuff, even w/the bradycardia. It's delicate balance tho. I had those same issues before dx'd and took awhile to get the right balance. Those of us who have been bedridden or who have decreased mobility can probably attest that is WAY more difficult, if not impossible sometimes, to get back to the former level of fuctioning. I cannot speak for all us, and am not trying to, but i would guess that most of us have been told it's good to exercise on whatever level by a medical professional and that even if we aren't up to snuff, so to speak, we still know we're at least supposed to be trying. (?anyone?) I know that for myself, it has been a continuous up and down (mostly down) struggle to become re-conditioned after numerous down spells. Just wanted to put this out there in case you are thinking that bedrest is a better idea than the occasional tachy episode. Those tachy episodes are SCARY! I've been there--they are NOT FUN but what happens when you do bedrest and don't need it is even worse for you in the long run, it seems. From what I've read and been told, it is good advice to move as much as you are able to comfortably and to push yourself as much as you are able to, but NOT overdo it. It's a difficult balance to strike, as MANY MANY here can attest to. Sorry this ran long, but it's so dear to me that all of us be as well as we can be. And it's so hard for me to exercise AT ALL ; sometimes with the least exertion i feel like i'll DIE....this is as much a self-pep-talk as it is a warning for us to move those bodies as much as we can. But please, for goshsakes, don't start an exercise plan without consulting your doc! and do take care of your tachy issues if they are long term. best wishes to all, lulu

cardiactec- i hope you get some good results with new med!! keep us posted!! anne- welcome to the forum!! nice to have you aboard! you will find caring supportive people here and lots of good ideas, advice. & i'm sure we'll benefit from your input & experience, too!! jess- i'll say hi & welcome, too, cuz i've not "met" you yet i just posted relief measures for mouth sores on a different thread, but in case you didn't see it there,here it is especially for the type you have (w/itchiness): you might try mixing = parts Milk of magnesia and liquid benadryl and swishing it in your mouth every 4-6 hours. if you use more than a teaspoon for the swish, spit it out after. hope you get some relief!! good luck and feel better, to all 3 of you!!! peace, lulu

hi, daniel, i would just add a few pieces of advice about computers and laptop usage that I hope you'll find helpful? one is make sure, if you are able, that you get up every so often and move around; it's good for your eyes and your circulation to do this. and do it slowly so you don't get orthostatic hypotension and fall out if that's an issue for ya. there is a freeware program available for download that pops up with a reminder to take a stretch. (I'll look for it and post it; can't find it now...argh! ) two, elevate your legs if you're going to be sitting for awhile to prevent blood pooling in the legs, because that can make you tachy and POTSy. and three, my laptop has saved my butt (in school and by being able to get on to here and the internet) especially when really sick, but everyday by being able to get in a comfortable position that won't get me tachy or POTSy... but I've learned, the hard way of course , to put a great big book under the laptop (PDR works great!) too absorb the heat it puts off! otherwise i start vasodilating and fall out! i'm embarrassed to say how long it took me to figure out why i was getting POTSy at the 'puter! i have found that even sitting at the desktop computer i need to have a fan running to draw off the heat, or down I go! good luck!! peace, lulu

I would say an exact ditto of what Lauren said! plus a (hug) from me, too !! have you been on other SSRI's? maybe one of them would work better, or maybe cutting back is the answer? i did terrible on SSRI's in general, but especially cymbalta. it was just bad news. and then it took me weeks to get back to "normal" after stopping it! frustrating!! now i don't take any & i'm doing A-OK. (but it took long while...i'd talk to your doc about what you're doing in case there's side effects of going cold turkey?) i am so glad you're feeling better today and i hope that continues for you! & i'm from a small rural ohio town, and fairs are big time fun!! my friend's kid is showing rabbits good luck with your lucky goats!! (they are lucky to have you ) Hang in there, Susie!!

goodness Amber! i wish i had something to add that would be some great advice or something, but i just wanted to say hang in there and i hope you are feeling better soon! ((hugs)) when you say "lying down at an angle" do you mean with your head raised? have you been able to do stuff (activities like exercise or just reading or whatever) in this position? i certainly hope you are able to get some answers....there's a lot of folks on the forum with good ideas and advice. feel better quick!! love and light, lulu

I was curious about this, so I just looked this up (i've had patients with lots of mouth sore issues it's OUCHY!) and was surprised to learn that canker sores aren't the same herpes, although herpes can cause mouth ulcers (lots of stuff can!). Check it out! Learn something new everyday, i guess. i always thought they were the same! MedlinePlus Online Medical Encyclopedia Info on Canker Sores And this article I thought was really helpful....it suggested a number of pain relief methods, one of them being to mix Milk of Magnesia and Liquid Benadryl (50/50 combination) and swish it it your mouth! You can do this with a teaspoonful every 4 hours. (I'm no doctor, but i think you would be able to use a bit more, like maybe 2 tbsp, b/c it would be hard to "swish" a teaspoon if you're really hurtin! especially if you're spitting it out after) It also suggested that your doctor may be able to prescribe a medicine to help relieve the pain from them. (like maybe liquid lidocaine?? i'm not sure) Info on Canker Sores from the AMA I have also heard that L-lysine is helpful. This supplement that comes in a gelatin capsule filled with liquid. one way to use it it to poke a hole in it with a pin & squeeze it onto the area or to use a qtip covered with the stuff & put it on the sore. Then don't eat or drink for at least 30 min. (maybe use it at night?) just remember it's EXTRA super important to continue to take care of your mouth, or the sores could get worse! make sure you are swishing some warm water in there (or sage-chamomile tea) every few hours. are you able to drink ensure-type stuff? it will have the calories and nutrients you especially need while your body is trying to heal....which i hope is really soon!!! good luck and i hope you feel better! peace, lulu

Hi, Amy, Sorry i'm a little late on the reply , but i do hope you are feeling better!! it is so frustrating as so many of us can attest to, to feel good for so long and then plummet. please know you are not alone! ((HUGS)) and hang in there!! and also, don't feel guilty for wanting to feel better. i'm sure a lot of us have pushed ourselves even when we've "known better" and paid the price! and you know, you could turn another corner soon! anything is possible! sometimes these setbacks can clear as quickly as they come on. i wish you all the best for speedy healing!! i wanted to ask you if you've just tried the saline on a routine basis? i ask cuz i totally thought i was heading for a PICC line this spring when i hit a POT hole, and although my veins were shot after getting a litre every other day or so for 3 months, eventually i felt better and didn't have to get a PICC or central line. i'm sorry if you've already been down this road and i'm babbling, just thought it might be something you could try, if you haven't already. take good care! peace, love and light, lulu

daniel, sorry the TTT was hard for you. it generally is for a lot of us. hope you feel better!! just wondering where you found that hyperadrenergic POTS has poorer prognosis?? could you please point me to that info?? best wishes, lulu

i've heard of some of us folks having major throat problems, i am sorry you are not feeling well!! i hope you find some answers and feel better soon! peace, lulu

hooray!!! welcome home!! hope you continue to feel better and better!!

i'm allergic to cipro and recently developed allergic reaction to sulfa meds. but i have previously had good results from Bactrim, also Macrobid is also good for UTI's (but i'm not a doc--just had to put that in there, you know). be careful you may get a yeast infection from the antibiotics... (Diflucan in repeated doses has worked great for me on those auspicious (ahem, not) occasions.....ask your doc for it if you're concerned.) for the pain/burning, i've had good luck with over the counter Phenazopyridine Hydrochloride (Pyridium). it does turn your urine orange. that might help you at least feel better until morning. good luck and feel better!!!

dizz- holy cow, girl! what a time you're having!! sounds like you're in your own Green Rodeo, only no cows & i hope no green clowns! i don't know what to tell you to make it stop i can only say Hang in there!! Hey wait, I'll try this: "HEY YOU, FLOOR!!! YEAH, YOU!! STOP MOVING!!! YOU'RE MAKING LINDA SICK!!! AND YOU, COLORS AND SUCH!!! STOP TURNING GREEN!!! DONT'CHA KNOW KERMIT HAS THE RIGHTS TO THE SONG "IT'S NOT EASY BEING GREEN?" YOU ALL SHOULD BE ASHAMED OF YOURSELVES! NOW STOP. IT. RIGHT. NOW!!" did that help? it sounds like maybe it's from the ear infection?? i'm no doc, but ear infections have made me totally wonky. i have also had the weird sensory thing....but for me, all the sudden my hearing would go out....everyone/thing sounded muffled. i've had the vision thing, too, but nowhere as severe as what you're describing! OMG! how scary! could you be having an allergic reaction?? (yeah, hooray, another allergy) i hope you feel better. you probably know how to care for yourself better than anyone, but if you get worse, maybe call your doc? keep us posted, hon and hang in there!! sending you good vibes to feel better!!! (((hugs))) lulu

the worst time for me was before i was diagnosed and NCS was kickin' my butt. more often than not, standing='d fainting, but i could do a little activity....stumble/walk to bathroom, couch, or kitchen (i called them my "Wee Marathons for the Questionably Afflicted" since we didn't know what the bleep was going on with me! ) lemme tell ya, those little excursions would exhaust me for hours!! once dx'd w/ NCS, i got better controlled, within a month i was up & running (ok not actually running, but i was near-normal for me)!! amazing!! had a couple good years, then came POTS and it was the same show again, only this time I knew a wee bit more about dysautonomia, not that that gave me any control over what was happening to my body, i was just better informed. it has taken years to get the meds/lifestyle/liquids/supplement combo to a workable level, & it's been a long, hard, strange trip. since the POTS dx, i have had down spells/"exacerbations" where i am for all intents and purposes bedridden. sometimes it's a week ordeal, sometimes longer, sometimes much longer, and the intensity varies. i agree with what everyone has posted here about "what is it like to be bedridden." you just do your thing (i don't have TV but i think i'm developing a hearty internet addiction lol), do as much as you can (marnian is totally right about the activity/exercises), KEEP YOUR SENSE OF HUMOR>>>YOU'RE GOING TO NEED IT!! and always hope it's going to get better. you always have to have hope and humor, i believe. i have been fortunate to only have had a half dozen or so "exacerbations" of varying degrees each year. it does seem almost every year a different system in my body craps out on me. This year's contest winner was the reproductive system! Hooray! (not!) nonetheless, i am grateful for every good day i have and every bad one i can learn from. i think the most important and biggest difference with being down with POTS or any other form of dyautonomia is that when you are ill, people don't understand with what. for a long time (and even sometimes now, though most of my true friends/close family know the score) people actually thought i was faking or making it up. i think to myself, who would make up an illness like this???? and why????? i mean, i'm imaginative, but dysautonomia throws me a new curve all the time!!! and it s@#$s! oh, YEAH, sure, SIGN ME UP for that one!!! i also think it can become exceedingly frustrating to be down with dysautonomia and have to be a teacher about it. it's become clear to me that although it may be frustating as all heckfire to educate doctors, nurses, friends and family (especially when sick) that i really do owe it to myself and others with this type illness to do the best i can, with accurate info and to try to be as rational about it as possible. (this does not always happen, sometimes i want to get violent with idiotic people and sometimes i'm just too dang tired, sometimes i just cry and cry cuz i can't take it, but it is a continuing goal for me, nonetheless!) the worst has been when i'm down (again) and someone enlightened person asks, "What, again? What's wrong with you that you're sick all the time?" That kind of attitude almost never makes me feel better. It makes me feel like I'm a failure of some kind, an alien. Sigh. Breathe deeply. Run to the shelter of an understanding forum. Seek solace among those who love and support you and always, always remember: You Are NOT Alone!! (((((((hugs to all us!))))))))

Just checked & final grades were posted <drum roll> ..... ..... ..... ..... ..... ..... I made it!! I can't believe I'm *officially* a senior in nursing school now! Just 3 quarters left!! I'm overwhelmed to think I made it this far--some of you know I had some REAL UPS & DOWNS getting here! I'm stunned in considering I might actually be able to succeed in doing this? WOW! I can't wait to be a "real" nurse! Just wanted to share my good news! It can be done!! The best part is I have 6 glorious weeks off!! Hooray!! Thanks for letting me share I'm so happy!