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Sunfish, are you okay?


taylortotmom
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thanks, carmen :-)

i honestly don't know how i am. how's that for an answer?

i suppose frustrated would be the most accurate answer overall.

and physically i'm feeling pretty rotten :D

yesterday's trip to the ER was involuntary, aka via ambulence after passing out & being too out of it immediate after to refuse. i was at school & b/c i only had one class didn't use my wheelchair b/c i just really don't want to be using it all of the time, ya know? so i try not to on "short" days unless i'm feeling particularly bad. i always have to stop & rest several times to & from class but until yesterday there hadn't been excitement. i was almost at my car (which is in the lot right outside the building) & knew i wasn't doing well, tried to sit down, but didn't make it. so instead ended up on the concrete with a bump on my head. gggggggrrrrrrrr. talk about embarrassing. there was no one around (from what i've since gathered) that knew me in the least but one of my friends/classmates came by a few minutes later & saw what was up so was at least able to tell people who i was, etc. and talk about sweet....we've only known each other a few months but she came with me to the hospital & stayed until time to go home, arranged for her roomie to drop off her car, got me set with my gatorade & pretzels in bed. she gets major bonus points!

but the ER visit itself was pretty silly quite honestly. my vitals were okay the few times they took them (while laying down only of course....gee, what a surprise....although mine aren't always...) and they didn't even care that i had a bump on my head. or that when they had me get up to use the bathroom (for a urine sample) i fainted again in the hallway (that's bump #2 on the head). no one blew me off as nuts but i'm glad i wasn't dying or anything b/c they sure as heck wouldn't have noticed. it was odd. especially since the resident was all worried about the fact that my left side was significantly weaker than my left. and then i didn't even see a doc after passing out right in front of them. they acknowledged that my body is a mess but used that to explain anything/everything that was going on so didn't look into any other possibilities. i asked them to make sure i didn't have an ear infection, etc & they said they would but no one ever came back (as many times infections throw me off & i only know i have one by more systemic problems).

the nurse then came in (a new one that i hadn't seen yet) and said, "here's your diagnosis...neurocardiogenic syncope...you can go home now." i laughed, showed her my med alert bracelet, and she rolled her eyes & sort of laughed too. we both agreed that they didn't have to work too hard on that one....they just read my bracelet. so...it was a pretty odd ER visit. hadn't been to one in a good number of months & don't plan on going back anytime soon. i don't ever plan it though...i've only taken myself voluntarily once & that was for GI bleeding so a bit more visibly scary...

so...i got 2 bags of fluids which never hurts & thought i was feeling a wee bit better last night & this morning but am getting worse again now. i feel super ill & have no idea if it has anything to do with my med changes over the past week. and called the NP today but didn't get a call back & lost track of time until too late to call back. i don't have anyone here in cleveland to see/call & yet i'm having symptoms that are new for me which never makes me too happy.

so...that's the short version.

wish i had a simpler/shorter answer!

thanks for asking.

B) melissa

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Hey Melissa,

Sorry to hear about your rough time recently. That's horrible that they let you walk to the bathroom all by yourself!! I still think about you lots. I've been having a hard time too. Narrowly avoided an ER visit myself last weekend, thank goodness! I hope you can get some help for your new symptoms. Is your doctor in Toledo able to help at all?

Kristen

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wow sunfish..

I am sorry that you are feeling so bad.. I hope that you start feeling better soon!

HUGS

Linda

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Okay, the mommy in me is coming out so I deleted everything I just wrote. Basically, I was getting on to you for taking risky chances (ie NOT using your wheelchair even on "easy" days). But, please, please take it easy. Do you know that some doctors actually refer to dysautonomia as "graduate school-itis"? I kid you not. Graduate school is STRESSFUL- big time. So, your body is going to react whether or not you realize your stressed. Not trying to chalk up your symptoms to somatoform but you know the drill. Increased stress (physical and/or emotional) = increased symptoms. So during this time of high stress, be proactive in preventing problems, such as, USING YOUR WHEEL CHAIR. I know your stubborn but I also know you want desperately to make it through school and you can't go to school if your on the concrete. Okay, the mommy is coming out again- sorry. I'm just very thankful that you are okay, I am concerned that you feel increasingly bad, and hope that you get a local doctor SOON. Let us know if your NP calls back and what she has to say. Go to bed- goodnight!

Carmen

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Melissa,

First of all, I'm glad you are ok and that youre home safely. That was quite an episode! How scary! I can't believe that they let you walk by yourself to the bathroom and that you fainted again....yikes!

I hope you improve quickly. Also, I hope you find a good dr. in the area -- what a time to be looking for a dr! :(

Thanks for letting us know about your ER visit,

Lisa

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Melissa,

I am so sorry you've been having a tough time this last while. Hopefully you don't have another infection lurking and causing more problems....Or if you do, I hope it's found quickly and treated! I sure hope you start to feel better soon. Be careful for the next while! How is your head? I'm sure you know, but be sure to watch for signs of concussion. A couple of cracks to the head in one day is not a good thing! Laura

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Melissa

Sorry your incident lead to such a disaster at the ER. I agree with what the others said, Use your Wheelchair :(

Think about writing whoever is in charge of the ER & the ER Doctor's (not usually one in the same.) It's times like this that they need education on Dysautonomia and what THEIR Missing!

I hope you're feeling better soon!

steph

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Hi, Melissa. Sorry you are having a rotten time and then ended up in the rotten ER, but I'm glad you got some fluids there, anyhow. I hope you are able to see a worthwhile doc soon to help you with your syncope episodes. Wishing you no more bumps on the head!!

Melly

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Guest Julia59

Sorry to hear about your ER visit----I know those are never fun.

I always fight to stay away from there just as you so. Unfortunately you didn't have a choice.........ugggg, and then you had to deal with such a dingy medical staff. They definately should have at least done a CT scan to see if you had any injury to your brain---especially if you were having left side weakness.

Do they assume that you having NCS/POTS means you can't have anything else wrong-------------? Does NCS erase other illnesses? The idiocy never stops ruffling my feathers..."What in the World?????????????

WE need David Letterman to put these folks on the show under "stupid human tricks"........................................ ;)

I hope your Doc can help you get a grip on whatever is causing things to gets worse for you.

A BIG HUG

Julie :0)

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thanks all....and i wasn't even planning on posting about my fun ER adventures!

sadly enough i didn't even consider it a "bad" experience compared to some i had in the past, when my fainting was totally out of control years back (pre-meds). and in terms of running more tests, etc....if i'm honest i get equally annoyed when lots & lots of tests are run "just in case"...seems like it's one extreme or the other!

re: using the wheelchair, i don't really need any convincing. my pushing to not use it as much was not so much my stubborness (i know...big shock) but more b/c of my recent appt with dr. grubb & him talking about trying to not use it quite as much b/c of fears of my getting more deconditioned. so it's a quandry. i hadn't passed out since june before this week as i've gotten better at "catching" myself over the years, but the body sometimes beats me to it. so for the deconditioning concern i'm going to stick to things other than walking for now outside of my apart...swimming, pilates, etc....i'd been doing okay with bits of both.

things got worse the other night before getting better. pretty scary worse thinking back. having some trouble breathing, weird twitches (diff than my "norm" ones), sudden weakness, vomiting non-stop that seemed diff than my "normal" gastroparesis stuff. wednesday night was NOT good. before things got to their worse i did talk to my toledo GP/family friend but i actually considered calling 911 later on...something i have NEVER done. ggggggggrrrrrrrrrrrrr. looking back i probably "should" have, but i can't put down the stubborness on every front! and in the moment i probably wasn't thinking too clearly....

after multiple unreturned calls to dr.grubb's NP over two days - very frustrating - i eventually talked to her but as nice as she is my GP was honestly more helpful. she pretty much agreed to what we had already supposed...that somehow my body seems to have - in effect - "overdosed" on the XR mestinon that i switched to a few days before. so that maybe i wasn't getting any of it when i fainted & then somehow i got too much at once. it's a longshot but it's the only thing that makes any sense. so....who knows. i'm back to a lower dose of mestinon & am not going to do the XR pills again...at least not anytime soon. the thought is maybe my GI system being so slow didn't combine well with the XR mechanism of the pill.

i'm feeling better than i have since tuesday but am still having a tough time sitting up for more than a bit at a time. gggggggggggggrrrrrrrrrrrrrr.

so...that's the scoop. hopefully it was problems with the med. even though we were hoping the mestinon increase would help, not hurt, i'd rather a med be the explanation for a nasty flare up than have it be entirely unexplained, ya know?

and no worries about the wheelchair use....right now it's not an option, & i won't be risking it anytime soon even if i get to feeling back to how i was a week ago.

and dr. grubb is trying to help me find a decent PCP through an oncology friend of his here in cleveland so i'm keeping my fingers crossed on that front too...

thanks again for all the support. the fun never ends, eh??

:P melissa

p.s. the stupid human tricks idea made me laugh!:-)

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Sweetmelissa, I always think of you when I see that commercial....I hope you are feeling better soon. I am really thinking of getting a chair or scooter, at this point conditioning is not a grave concern to me. But i would think, that getting up as much as you can and not falling and killing off your head or some other neccessary body part superimposes whether you can do jumping jacks or not....just my own personal biased opinion. hopeyou'rebettersoonmorgan

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Glad to know things are better. Please know all remarks to you are made with love and we just worry about you! Take care of yourself (please!).

Love,

Carmen

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so....i woke up today with a sore throat, slight fever, & sick-type nausea (vs. gastroparesis kind)....so maybe this whole week was a precursor to that. who knows. hopefully it's an explanation but sure isn't helping me to feel any better...

morg-

the song reference makes me smile so...thanks:-)

and while no one's interested in my getting conditioned to the point of athleticism...solely to try to help symptoms...i agree that at this point it's more important not to be cracking my head. having had spine surgery years back solely b/c of a fall...i'm really not interested in a repeat of that! and i would definitely be a proponent of getting some wheels for yourself. they've allowed me to do things that i couldn't do at all otherwise...go to the store & "stand" in line, go to the farmers market by my house, etc....

ttm-

i know it's all out of love. sorry if i came back as being defensive....was just trying to articulate the frustration of trying to push at the encouragement of a doc vs. dealing with reality, ya know? i KNOW you all just want to keep me with no bumps on the head & no trips to the ER! and i probably would have written the same things to myself!

thanks again all...

B) melissa

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