dizzygirl

HI all... i was wondering if any of your expereince your urine smelling like amonia? I noticed it a few months back.. and actually thought that one of my b/f's cat peed on my pj bottoms.. until i peed and realized it was me! Uhm it comes and goes and is not a constant "odor" I dont have any infection that im aware of... I've noticed that this gets worse a few days before my paralysis spellls get really really bad... My urine will some times be normal or sometimes will be very dark amber looking color.. im conerned about this and talked to my dr but i ddint get far... just wondering if anybody gets this?

thank you all for your support and kind words! it means alot to me thank you!

MAXINE~~~~im so very glad that things went well at NIH... and im super glad that you where taken seriously.. sounds like your getting answers.. I really hope that answer and an awesome medical team will lead to you feeling beter.. or atleast getting a treatment plan that can improve your quality of life.. so that you can fully enjoy those grand babies girls! BIG HUGS dizz

lisa prayers are always welcome.. helps keep me sane :)

wow that is a long time! i wish you luck in getting this hearing sooner rather then later

yup.. the very first time i tried mestinon.. i knocked me down in me down in bed for the first few days.. i have severe fatigue.. and my muscles felt like blobs.. and where very weak feeling.. uhm i had a hard time adjusting to the medication... but once i kind got use to it the fatigue and wacky muscle feelings went away.. and i'd get burst of energy...so maybe give it some time like goldie aslo suggested... i hope that the werid feeling go away and that you are able to tolerate the medication.. for some ppl it truly is the wonder drug good luck

I looked at the calendar today surprised at how fast the 2008 is flying by... and then i saw the date.. and realized that it has been a full 6 yrs ago to the day.. I woke up friday march 28th, 2002 with full blown pots..(i had had symptoms of pots tho LONG before this date.. but nobody put the pieces together.. and i was still able to truck along some how.. thinking that one thing had nothing to do with the other) and spent the next 3 months bedridden.. having to depend on every one but my self. I remmeber that morning quite clearly still.. I had worked the night before.. and gotten home around midnight.. and i was feeling more sluggish that night then normal .. i remember standing at the nurses station talking to John one of the other aides.. telling him that i felt kind of off... and he stuck a pulse OX thingy on my finger and my HR was 137.. he said wow girl.. your shouldnt be beating that fast!..then proceeded to joke about the affects of Mountain dew and how much caffeine there is in it...and how working double shift you need something to give you boost...... so i went to bed once i got home...little did i know that my life was about to change drastically 10 hours later... I remember waking up that morning.. with one of the most severe headaches i'd ever had!.. and i was so dizzy that i could not sit up.. and my HR was racing (more then normal) out of my chest... i called in to work and told them i wouldnt be in.. and caled a friend to take me to the dr's.. I could barely stand... i remember my friend helping me to the car.. on the way to the car i remember crying that i was going to pass out and that my legs felt weird... got to the dr's office and my BP was sky high and so was my HR... i made them turn off all the lights in my room and i laid there..feeling like death.. they told me that i had a migraine and that this is why my HR and BP where so high.... hmm that wasnt it! the medication didnt really touch the headache.... I had a non stop "migraine" i swear for the next yr!.. it set off a trail of worthless ER visits with Hr's hanging out at 200 bpm all the time....BP's ranging from 65/54 to 195/145.. dr's telling me that is was all "in my head" that it was psychosomatic... got send to the looney ward twice i think.. b/c test result kept coming back negative.. and they couldnt figure out why things wouldnt go down.. psychiatrist told me symptomns where NOT psychological.. so that was a PLUS... Its unclear what set my ANS system off.. like i said earlier i had symptoms as far back as i can remember... and thing went to apoint of no return this day 6 yrs ago... getting hit with this so hard.. totally turned my life upside down...I lost everthing...once i got sick.. and i do mean everything... my apartment.. job obviously.. health insurance.. friends 2 who didnt understand...ability to stand.. and my income...at times my sanity felt threatened.... Weird thing is.. that today i am sicker then i was 6 yrsa go.. and 6 yrs ago was pretty gosh darn bad....I jsut wondre how ya'all who get truly have gottne worse.. deal with it... I find it irritating and infuriating.. that at 26 yrs old.. that b/c of how i feel and limited energy level that i have to choose on an given day .. hmmmm i can either shower today.. or try and cook something that will last a few days.. i cant do both.. .. or to simpler things...like choosing between opening mail or saving my energy for the short trip to the bathroom.. or to being able to chew my food or drink fluids.. something that semmingly should not take loads of energy or effort.. truly do! I mean pots ***** at any age.. but to the younger women on her who are in ther late teens or early 20' 30's.. do you just feel kind a cheated? I mean if you had severe pots going on? In reagrds to having a family.. getting edcation and careers.. not to mention traveling or doing fun things.. living having a life? Dont mean to be a downer here.. but geez its pretty much the one place where i can come where i know that you'll all understand what im saying b/c you've been there or are going thru it.. thanks for reading... i guess.. 6 yrs bumms me out b/c i thought after getting diagnosed that i would have atleast responded to treatment.. and i havent.... i havent responded to any meds really and i swear i've tried pretty much all of it!.....i am also bummed that 6 yrs later i have to depend on other even more now.. and im an independent person.. with pride issues.. and i hate to ask for help.... a disappointed dizz

HAPPY VERY LATE BIRTHDAY!!!!

**SQUEALS***!!!!!!!!!!!!!!!!!aHHHHHHH they are so freaking cute! oh i wish ed i lived close to you i'd be loving all your babies that you post up here!!!!!! aww my goodness id never get anything done playing with all those animals all the time! LOL.. I love the coat rack you got up very cool! any by the way i love the shoes that you have on as well in the one shot with the baby goat.. they look cool and very comfy! just thought you should know that ..te he keep the baby animals pics coming!

yup feel like a kitty here too!!!!!!! i sleel a great deal.. generally about 12 hours a night.. and then a nap between 3-6 hours during the day...cant control it i fight it.. and i end up sleeping longer... my "real" kitty's love it tho i think having mommy sleep with them all the time!! LOL

i expereince this and i must say it freaks me out! ive gottne no explaination for this happening... when i expereince it.. it "feels" like my HR wants to speed up but can not.. and my Hr is super slow.. and i feel like you described extremely weak.. and i feel fuzzy and some what disconnected from myself..if that makes sense.. i feel like im going to faint but dont... I sometimes get chest pain with it...... but not always... It will eventual do what feel like my heart is being turned inside out.. and and ill havfe some very painful Hr beats.. and then it will return to my normal rhythm... hope ya get some answers

so glad to here that your still on ssdi.. how scary to go thru that! hugs

to my fellow dizz so good to see you on here.. and im glad that you took the time to care for yourself (tho i and im sure other missed you too :) ).. and im SOOOOOOOOOOOOOOOOOOOOOO very happy to here that you are seeing improvement with treating the lyme..i have a big smile on my face after reading your post.. again so glad you having improvement your in my prayers lauren! love and hugs dizz

bee get out of my head girl sounds very familiar hun... just know im praying for you and hoping that "they" get to the bottom of things for you sooner rather then later...always here for you! love and hugs dizz

Morgan- YUP the MDA was the organization that made the appointment for me.. and i explained to them about PP as well.. that appointment was a complete and total waste of my time and energy...(what little i have) ... SO im just going to have to keep searching i guess and hope that things dont keep getting worse.. and that i can get the piece sof the tricky puzzle figured out... b/c I feel horrible.. and this state that ive been in for months now appears to be my new "normal" and i hate it! Im trying to get some sort of game plan set up.. as far as surgery things are concerned.. that is a stroy for another day tho.... but i appreciate the support on here for you all it means alot.... HUgs to you all dizz

maxine im so glad that you do not have MS.. and im so sorry that you have trouble snuggling with your new grandbaby.. that stinks! love and hugs dizz

im finding it hard to keep my head level about things... i recently had an apointment with a specialist.. a neuro muscular dr about my paralysis spells.. and they are kicking my behind.. coming in droves.. each one getting more and more intense... So I was at this partcular dr's office for roughly 2 hours.. and i was feeling mighty sick.. YUCK.. I saw the student intern dr first.. and we went over everything.. I told them that i was basically looking for someone to eval me for periodic paralysis.. that i dont need management for everything else.. the intern looked at me like i had horns and a tail growing out of my head or something.. the acutal specialist came in was in the exam room not even 2 minutes.. 2 minutes is being very generous by the way....and he was such a JERK!!!!!!!!!!!!!!!!!! BIG TIME JERK!!!!!!!!!!!! I dont think ive even been so insulted ( yes maxine even worse then dr mullet!!!!) in my life by a medical professional and ive been treated pretty badly more then once..,... he was very condesending.. I left here so mad im sure steam was rolling out of my ears... needless to say.. in one breath he said that i ddint have chiari.. but chiari was causing everything.. he based this one under 2 minutes in the exam room sitting across the room.. not even had looking at my films or nothing! yeah aparently this dr had e-ray vision and could see in side my head with his ugly glasses on! GEZZZZZZZZZZZZZZZZZ... SO>>>>>>>>>>>>> you all know i got my initial work up done in milwaukee.. the problem im facing is that im in a fincaial crunch of a life time and am not going to be able to get anything taken care of anytime soon... mean while everything is getting alot worse... the only thought that grouchy dr had for me was to go see a surgeon thru the other hospital in town.. I was like Now tell me Dr S0 In-SO.. how many chiari surgeries have they acutally seen here? and how many of them had the issue that i have like dysautonomia? and the list goes on.. he had no commment really and walked out the room.. NICE!!!!!!! So here I sit in a canoe with out a paddle... the pain is unbearable at this point.. my spine feels like it is going to cave in.. and it is afecting my breathing and.. and i think my heart as well b/c its been unruly.. I dont think we can go up any higher on my beta blockers...clonidine yes betaxolol nope.... i do feel at the end of my rope.. and quite frankly am tired of fighting day in and day out with all this.. all the while knowing that nothing is really available at this point to make it lesson... my local dr's who DO GET IT.. and dont say stupid things to ,me.. to belittle my intelligence or my "bizarre symptoms" they have done everything they know to do to help me... im tempted to go to the ER to get something for pain and nausea as its been non stop for some time now.. and im having trouble eating or drinking.. anything i do get in me makes me really violently ill.. and i dont even want to bother with food... or liquids they are just as bad.. if not worse the solids i think sometimes.... shoot i lost my train of thought......hmmmmmmmmmmm....oh im tempted to go to the er to get maybe a lessoning of pain and nausea.. for a short time... and maybe they can check the pressure in my head b/c my head feels like its about to burst off my neck.....and my spine.. lord help me!!!! i would be eternally greatfull if just something would let up.. and cut me a break... thank god for my kitty .. he is such a love bug!!!!! he must sense when i go into a paralysis spell b/c he comes nd lays on my chest... or he will nuzzle m hand and lay by me.. till its over.. sweet little furr ball he is! sorry for the depressing post.. but i had to get this off my chest.. i feel like im burdoning those around me.. so i keep my mouth shut... but here i can let it all hang out!

oh my nolie!!!!!! that is alot on your plate! im so glad that you where and have been able to help get your niece out such a horrible situtation.. that is NO WAY for a child to live.. im so happy that she is making such progress.. goes to show what can happen when you love and nurture a child instead of hurting and abusing her! prayers are with her! and you family for helping her! I hope that you daughter can get some help.. and that your hubby surgery goes well god bless!

well girl its good that they are sending you to a dr that is more uh qualified!! maybe that will make things easier... BIG HUGS to you i know you got lots going on.. and im sorry that its difficult to hold your baby girl grandbaby.. that is so sad and really bites... hang in there! love you! i couldnt find a pink panther giving a hug.. BUT this one was cool.. and give you the HUG impression! HUGS!!!!

YEH!! i have teh same sort of reactions.. there are time that i go int o walmart or something and try walking around.. only yo run to the bathroom 5 times in 20 minutes... i get just like you describe! SO now when i go to walmart.. i use the power buggies they have available.. and i either late and night ot early in the mornig when the store is pretty well dead.. to ensure a cart is available... if im ventureing out by nyself i use my power chair.. which is not easily transportable..so i use the lift or something to cart me around.. BUT its a life saver... b/c I can fully recline if i feel sick.. and it alows me more "time out in and about" uhm like someone else mentioned always carry water or gatorade with you...maybe dress in layers.. incase you get hot or cold quickly.. uhm have a nsack or sorts in your purse.. something salty..pretzels beef jerky.. something like that.. also.. dont be afraid..(again like toehr mentioned) to let your friends know whats going on... uhm squating does help.. i squat and rock back and forth on my feet... until i feel some waht normal again..and then generally need help getting to my feet.. so a cane would be handy for that as well.. dont fear talking to your friends.. maybe that will understand and want to help if your feeling sick.. and need to go or something.. hang int here!!! i know it sukcs have this at any age really and not being able to do "normal" things... you eventually learn triggers and ways around things.. and tricks that help you get thru outings...(ie best times for you to go out.. and when you feeling best..)

hello.. i went to se my ENT today.. I was suppose to get my other ear tube in....But after taking a looksee at my ear.. he decided that it was not feasable to do in the office.. b/c of "increased risks" my ear drum is pulled in-ward pretty good.. there for it is thinned out.. and he is concerned with perferating the eardrum....SO not ear tubey today... good thing is the hearing in my right ear (the one with the tube ) has improved to being PERFECT!!!!!!!!!!!! YEAH!!!!!!!! my left ear is about the same with hearing loss.. Uhm to put my left tube in he wants to put me under.... I know its done as an out patient thru the surgery center...my concerns are.. my dysautonomia.. of course!..Uhm when im put under "local" it knocks me off my rocker.. what are some things that i might do or ask my ENT to do to decrease my risk of a potsy meltdown? Ie bottoming out my BP? and stuff like that? Normally under local what i have issues with.. is my pulse ox levels drop in the low 80's.. and my HR some times goes up..i dont actually know what my BP does.... So yeah that is my wonder for the day... what the risk with general anestisia? thanks!

maxine i know right??????!!!!!!!! (((((((((BIG OLE" LOUD SIGH))))))))))))))))) im doing about the same fatigue wise.. and it driving me mad!!!!!! im so pooped out its not even right.... i hope the nueorsurgeon and the neuromuscular dr canbe of some help for me.. im about going bonkers.. if i had the enrgy to do that that is... this paralysis stuff is CRUD CITY!!!!!!!!! my muscles feel like OMG!.. my leg muscles re the worst right now...trying to keep moving even a little bit.. but lordy i need some help!

oh my lord that is a loud of horse hooey morgan!!!!! grrrrrr ssdi is a pain the behind...so sory that your being put the gov wringer again... dizz

aw boy that Bit*s!! I hope that you can get something to help you get out of the pots hole miss mouse!... bright side.. atleast there is lots of love being sent you down there... feel better! lots of hugs dizz

hi.. few things that hopefully will not bother your pots or interact with medications.. dont use decongestion with sudafed.. that could cause you to feel worse... viruses really knock you thru a loop.. I just got over a bad bug of some sort here a few wks back... try making a cup of decaf tea... and put a honey and lemon cough drop int ehtea while it is HOT.. and let it start to disolve for a minute...inhale the vapors of the steam it will help loosen and open things up.. and also you know drink the tea while its still hot/warm.. it will help loosen the junk in your chest up...I swear by these tea drinks!!!!!!! its not cure all but they sure help...! also if you can handle nose sprays try just normal saline or afrin no drip nasal.... Im a goof ball and i have trouble with normal saline nose spray.. so i used afrin when i get sick.. works nicely.. also kinda goof.. but KLEENEX makes puffs vicks tissues.. and it give your nose a litttle whiff of vicks... Uhm.. run a humidifryer.... Oh and if you can tolerate this.. try gettting a netti pot.. those things are neat for cleaning the old sinus out.. there is a sinus rinse that you can get to help clean the gunk out of your nose/sinus... uhm if you can get a potpurri pot... and get some eucoliptus oil... and pour it in the top portion of the pot and then alittle tea light candle.. the vapor from the oil.. it helps open things up as well.... drink lots of fluids to keep from getting dehydrated.. warm fluids too.. it you use decaf tea bags and sugar free cough drops.. hopefully you wont get sick of tea real fast! its my gramma's little rememdy... hope that you feel better soon and that you dont have pneumonia!!!!!!!!