dizzygirl

my first thought was could it be something that you eat or drink everyday...? maybe its some small and simple that you would ordinarily thing would trigger headaches. Or maybe by the time lunch rolls around your body is trying to tell you if needs a break and needs to rest...who knows... uhm it takes alot of blood to digest food.. big or small meals.. so could there be an even more lack of blood flow to the brain causing the headache? also..have you started a new meds or anything? that you have to take mid morning? maybe that is screwing with your system? I can feel for you headaches stink! I hope that you can find the cause of your headaches.. and that they go away soon hugs!

yup have always had mption/car sickness.. I was the kid who puked on everybody during car rides....LOL..ewww.. Uhm i still get very car sick...

uhm yeah maxine something is definately going.. and i honestly am getting mighty frustrated ....But in order to get GOOD medical care i have to travel.. and welll....gRRRRRRRRRRR! I'm half tempted to call the NSG i saw last october and speak with him...I was talking to my mom last night (she was there with me) after my little adventure.. and we where talking about getting me back to Milwaukee and get this ball rolling on surgery.... Lets face it.. the dr's i have seen cant figure out whats going on... the good dr's I DO HAVE in my corver have done all they can do...Stuff comes back abnormal but nobodys putting the puzzle together!... so maybe I need to take a leap of faith. Something is wrong.. and feeling the way I've been feeling now (not to mention the last 3 yrs!) in recent wks... somethings gotta give... and i guess i'd rather it be a piece of my anatomy..instead of my life ya know (bad joke..sorry) I have so many neurological symptoms these days that i dont know what is coming from POTS and what is coming from chiari.. not to mention the other illness i got going on...only that i have it going on... thanks maxine for the links.. interesting reads .... ~hugs~

hmm interesting tid bit of info lois! thanks! i think im headed for a pacer.. lots of talk about with my cardiac dr's... i hope that this is something that will be helpful to you, if you upgrade Hugs!

hey folks... hope your all doing well. last night...i wanted to wash my hair at least.. i wasnt up to a full fledged shower....so in the sink my head went and i washed my hair... well once i brought my head upright and came to full stadning i totally felt like i was going to pass out. and my entire body got extremely weak.. i'm taking like my entire body felt like it turned into silly putty... and i was trying to walk to the couch... and i was like falling sideways..i stumbled to the couch and i laid there for about 15 minutes.. hoping that the wekness would subside.. and it did not.... I felt very disoriented and had a strange feeling thru my arms and legs...it was like a fuzzy electrical surgy feeling... I'm not totally sure what is going on .. i have suspicions...prior to my hair washing adventure.. once i woke from my afternoon nap i felt weak all over but in a different way..if that makes sense. and i was just wrung out and blah all evening. i keep getting smacked with full body weakness it just hits me fast and hard. It makes me feel like I'm getting benadryl and the strongest sleepy med thru an IV that has instant effects on the body. geez i feel like i cant move when that happens (different from my paralysis spells i babbled on about before) . I dont know anybody get this> anything help it subside or simmer down? i get these darn near daily lately... and i sure dont like it.. they exhaust me more then i'm allready exhausted.. and make me sleep rediculously long.(4-6 hours after i get like that after sleeping all night and throw a nap or 2 in there on top of it!) grr i dont like feeling like ball of human silly putty!

JUJU!! all your babies are beautiful.. and i see my buddy spencer is still big and fat! india that is a really cute pic of her your newest baby girl has alot of her daddy in her

yeah i would not really worry about msa or paf.. as it really very RARELY affects ppl so young as your self. I see that you have POTS. has anybody really explained the mechanics of pots to you? Your blood pressure dropping when you stand is a hallmark of pots (dysautonomia) and it is normal for your HR to increase. from a dysauto. stand point that is. check out the main page of dinet.. you will find alot of info on pots... and a clear definition of POTS! it might help ease your mind.. good luck to you

hi i get slurred speech when my BP drops too low.. or i'm getting a bad headach.. OR I'm about to faint and my HR is soaring... uhm it is scary if your not use to it...

all the time..

maxine i had my loop donwloaded monday and it showed my Hr several times at 30bpm.. at various times of the day and night.. I'm going in again next wk to get my loop downloaded again.... there was some debate on my recording b/c there where some sensitivity issues going on with the recording..(not really sure what means).. BUT i guess we will see as time goes on with the loop being in.. I mean i dont know how there can be debate with a HR of 30bpm multiple times ya know? anyhooo... near syncope is a little better.... and i hope it chills out very soon!

I order from netflixs... and i really enjoy scrapbooking..reading (though books on tape/cd are a must these days).. uhm crochetting..quilting.. sewing..i like to design clothing and little crafty type of sewing projects.... i love to take photographs when i'm able to be upright... my computer is a must inlife.. I use it to keep in touch with friends and family... I blog... and write poetry... rare trips to the craft store always excite me !! Uhm unfortunately I spent alot of my day sleeping...and I'm working on getting a wheelchair that will fit my current needs better and allow me maybe alittle more "time" outside of the house... as it is going to be a powerchair that will have a power foot rest and totally recline back.. so I'm excited to maybe be able to leave the house alittle more easily if i can totally recline and get my feet up while im out.. Uhm I wish i could think of more things.. but right now this is what i can think of....I hope it helps alittle bit OH yes.. miss sunfish (soo good to see you on here by the way!!! ) I also shop online! its how i did the majority of my christmas shopping last yr and how i will more then likely do it all this yr!

thanks ladies!

Hi everyone... about 2 wks or so ago I had my loop recorder put in... during my procedure they gave me phenergan and a couple doses of uhm fentanyl I think?? or something along them lines.. that sounds like that.. my mind is fuzz on the drug name...I've never had that before...well anyways after my procedure was all done..i soent the day at the hospital and got fluids ran thru and some IV anti-biotics... went home.... and slept most of the rest of the day and the thru most the wknd. Well..my ANS didnt flip out until early sunday morning... and I've had alot of tachycardia and a GREAT deal of very near syncope since then.. and the feeling of near syncope is acutally increasing despite my salt and fluid loading. the near syncope is bad..I feel right on the verge of going up..and have that yucky warm flushy feeling.. instantly upon going upright.. UGH i hate that.... it has been 2 wks.. my incision is healing up good.. no signs of injection or anything... but my ANS is just having a hayday on my body in general. I wasnt sure if the procedure set it and that with combination of change of seasons and the crazy all over the map weather we been having..I dont know... But i do know that i'm quite tachy feelling dizzy.. fainty and uh got some werid tinglies going on in my face.. along with incresed exhaustion..(more then my normal exhaustion i complain on here about) So to those who've had this did you all react this way? thanks dizz

that is great that you to gals got to meet up! YEAH!

traveled to wisconsin to (took by bus 16 hours to get to milwaukee..drive time would have been 8-9hrs) get dx with chiari malforamtion..congenital cervical stenosis.vetebral artery issues..along with herniated disc and bone spurs... going to pittsburgh to hopefully begin treatment... Initally traveled from NY to PA to get dx with dysautonomia..(2-6 hours travel time 1 way) then traveled to the cleveland clinic and toledo ohio... also have traveled to various dr's in pittsburgh pa. kinda necessary if you want good comprehensive medical care to have to travel to be seen and hope that your dr will work with your local dr... or that you ans dr will work with you via phone email or whatever...

Maxine~ i totally have to chime in on this topic... I agree and see alot of what you are talking about and have directly experience alot of hoorrific care. LIKE__ Last wednesday i began having gall bladder pain and come thursday night into friday morning it was so severe that I couldnt not sit up striaght or move w/o making the pain a million times worse...and the pain was affecting my breathing.. well anyways I went to the ER where my GI doc is out of b/c i called his office bright and early and spoke with his receptionist... he was at the hospital all day and he was suppose to have been called when i got there... Well long story short.. I waited over an hour to get back to a bed.. (mind you my Bp was low and my heart was racing..more then normal) 2 1/2 hours after being taken to a gurny...a dr comes - talks to me for like a minute... they get an IV started.. and the guy nurse.. he didnt set the pump up properly... or connect my iv tubing properly.. and he walks away as the pump is going off! i was lik ***? so few seconds later the tubing comes apart and there is blood and saline running everywhere i hit the emergency bell.. 5 minutes passed before anyone came back.. then they asked me me "what i did to the Iv!" IDK i told my B"F that this hospital is where all the neds school/nursing school rejects go... meaning the ones that barely pass out of meds school for reall.. (aside from my gi dr he is sharp as a tact..) bunch of ding bats... ANYways.. I aksed for pain meds.. they brought me meds i was allergic to 3 times! (3 diff meds) then once they gave me toradol and it didnt work they would not give me anything else... come to find out.. the dr comes in and tells me that my liver isnt functioning properly and that is swollen the liver.. and then discharges me.. I asked why is my breathing being afected..IDK..then said your liver is pressing on your lung b/c its swollen........ i asked why is my liver swollen and not functioning properly? IDK.. asked again.. why cant you give me some answers in sentences? IDK! I was so mad! i asked him to page my GI doc considering the CT finding and the fact that he was right in the hsopital... dr flat out refused to... said it was necessary.. uh hello! he said follow up with dr so in so on thrusday of this wk! wrote me a script ofr pain meds.. nurse comes back with the script and i said I cant take this I'm allergic to it.. and she got all huffy and went ot he dr and he said then i cant give her anything else.. so I've suffered and am still suffering today! I also noticed that if you have any past mental health dx's even if they are past issues that ARE resolved.. that you complaints are chalked up to your mental health stuff.. and you are not taken seriously.... I was dx with ptsd and major depression when i was 15... im 26 now and if a dr see's that in my chart.. he will automatically be dismissive... I watched family members be brutalize and treated like dirt b/c they have no insurance...my fathers has damamge to his heart from a heart attack in april and no cardiologist here in our town will see him w/o 250 down first before he is even seen... My father and I where also seen by the SAME neurosurgeon in recent months.. and we where both treated like crud... I was told that there was absolutley nothing wrong with me.. despite a highly respsected nuerosurgeon telling me otherwise.. and a stack of MRI's also showing other wise... my dad's MRI's where never even reviewed and they told him there was nothing wrong with him.. when he is having severe neurological symptoms.. and his mri shows serious stuff on it... and as far as weight issues go and treatment.. its horrible! for me specifically.. what dr's dont seem to understand.. is my rapid weight gain is a SYMPTOM of whatever is going on.. dr's see that your overweight and autonomaticaly assume that you dont take care of your self...and eat horribly and well are lazy... now for me i have abnormality showing up all over the place and nobody is putting the puzzle pieces together... I have a brain/pitutary mri done like ohh 3-4 yrs ago.. and it came back abnormal showing stuff on the pitutary and pineal gland.. I pushed for answers and follow up and was dropped as a patient... I have many horror stories and could go on forever....and i'm in a rambly kinda talk forever mood.. so I'm gonnna stop here.... but yeah the health care blows ... espec if your poor....

wow.. beeen thinking of you and wondering how you've been doing! you have lots going on..BIG HUGS TO YOU!!!!!!

Hey folks I've been meaning to post an over all update for sometime now... but...havent really had the energy too! Over all some of my symptoms are progressing and becoming worse.. and other symptoms that where getting worse are maintaining there rightfull level of crappiness... and my fatigue and excessive sleepiness are still driving me mad... nothing helps this.. not diet changes.. small amounts of excercise.. medication.. i really hate it.. its a big COMPLAINT of mine... On the chiari front... I have really been jsut sitting on this.. b/c surgery is something that I'm very uncertain about.. I'm not sure i want to have surgery only to end up on the other end of setting into motion a ball that is unstoppable with complication and many surgeries.. granted i do know that "this" doesnt happen with all chiari surgeries but honestly.. I've talked to alot of chiari patients who still have symptoms still feel sick and are going thru there 15 or more surgery... I'm being cautious probably to the point of avoidance on some days.... I'm set up to see a neurosurgeon first part of september...to get an other opinion on the "issues" as far as neck surgery goes.. I feel more comfortable with having that done... but i havent come across a surgery i will let touch the hair on my head let alone my spine.... So I'm hoping that i will feel confident in the level of comprehension and skill of this neurosurgeon i see in sept. I'm also scheduled in sept. to get my lopp recorder put in.. and to see about 6 different doctors at the cleveland clinic... SO busy month for me in september! I also.. (after much reluctance) decided to start seeing a psychologist who treat chronically ill patients..b/c i need an outlet that isnt ppl in my daily life.. I think its a wise decision acutally.. and have my first appointment on monday... dealing with so many different chronic illness and non abating symptoms is really taking alot out of me emotionally/mentally...so hopefully this will help give me some perspective So in good news..I have a new baby nephew named zakk.. he was born july 1st.. and is an absolute doll baby! and my niece haylee is growing like a weed..she is now 15 months old.. and is starting to put words together... and she is a little giggle monster full of energy.. these babies are such a bright shinning star in my life...and they add a sense of purpose as well... love them to pieces! So that is the short skinny version of updates from me! I'll post another update after all the riggamaroll in september... I hope that you all are doing ok...Big hugs dizz

hi uhm dr g is going to be putting mine in i still have to schedule it.... and i guess try and get the mri done first...and your riht maxine going back and forth to toledo would be WAY TOO much ! as my niece would put it "NOWAY" TEA~ Uhm the loop can stay in up to 3 yrs. its being put in b/c i have such out of the norm symptoms.. and "we" want to see if my HR is dropping to low .. maybe that is causing some stuff to happy.. i have a hospital ER trip where my HR was yoyo-ing back and forth going to high 70's 100' and dropping to 29 and went on like this for about 20 minutes.. the hospital staff b/c I was still talking to them and conscious.. chalked it up to "equipment failure" even though they hooked me up to new "equipment" and the same darn thing happened.... forget the fact that my heart often feels like its gonna stop when i get certain spells..... gee wizzzzzzzzz!!!!!! I got to get an MRI of my thorasic spine done.. having lots og psine issue and lots of other issues.. I really should post an update! thanks for the input ladies!

OMG! what a beautiful kitty!!!!!!

yea uhm too many symptoms to sort out.. just about everything in my ANS system seems to be affected.... tearose gives a good pointer!

hi ya folks.. i'm going to be getting one of these implantable loop recorders put in ...sometime soon... what i was wonder can you have MRI's done while having it in? I'm going to be going to the cleveland clinic to see a NSG. and I'm going to need an MRI done of my thorasic and stuff done... SOOO I'm wondering..cause i think I'm going to have the implant before my appoint in spt. with the nsg. will an MRI scramble the device? maybe i should try and get it done before i have the loop in hmmm,..... thanks folks

Hey all.. I'm going to be starting adderal (sp??) for my fatigue.. since my insurance will not pay for provigil.. and i'm wondering if any of you have taken it for fatigue and if so what are you're experiences with it? does it help? any weird side-effects? thanks abunch Linda

ajw.. yes they are very exspensive!! i had been getting them at the organic grocery where they are nearly 4 bucks ! and i found them at the super walmart for 3 dollars.. and i found them at sheetz (its a convient store/gas station type thing) but they are expsensive there too... i got 3 of them last night .. they are filling.... is odwalla a similiar product?

maxine~ OYE VEY!!! yes they treated me well in the hospital.. thanks for the links..... better control of ans symptoms.. hmm what is that!?? girl i'm having trouble getting the normal things undercontrol with ans stuff.. let alone all this crazy stuff.. i didnt know there was a thing as an neuro -endo!..hmmm..have to check that out.. thanks again.. hugs back to you!