dizzygirl

Last night i was talking to my mom on the phone.. and we were talking about something funny.. well i began laughing.. and my laughter quickly turned into a fit of uncontrollable laughter.. everything was funny to me....well my laughter fit last about 4-5 minutes.. the subsided to a spontanious chuckles.... Well my laughter was so intense that i could not breath/catch my breath... and my heart really started to race... I thought OK Im just laughing.. shouldnt be no big deal once i settle down ill be good to go.. WELL...not the case...shortly after i hung up with my mom.. i started to get feverish.. and my feet where ice cold yet sweaty feeling.. and my fingers and face..even teeth felt ice cold.. my heart was racing really bad... and i developed a nasty head ache.. and radiating pain thru my face jaw.. and down my back... and my eye balls felt like they where going to be sucked thru my eye sockets out thru my nose of something.. weird feeling..sensation...I became very tired... and flicked the light off and tried to fall asleep.. well my body was in a full fledge tail spin... and i had ainsomnia allnight....with tachycardia ... then id get sensation that my heart would feel like it wanted to stop.. and it was doing flip flops and hard thuds in my chest all night.. and still is actually... all the other symptoms allnight as well.. and my pain levels shot thru the roof...and i got the crazy clinking in the base ofmy skull....vision was nuts... Im a bit irritated that something seemingly simple like laughing can cause such a domino affect....Im jsut wondering if anybody else gets symptomatic from laughing.....and if you know why...I kinda needed to vent.. b/c im irritated with my dysfunctional body today big time....thanks dizz

oh lord that bites.. i really hope that its an incrediant in the coco and not chocolate in general! hope that you are feeling better...and have no more reactions like that...

chrissy you dont sound all that immature to me!! I dont think there is anything wrong witht he disney channel! HAH! my dad is 45 and he still likes to watch spider man and the TICK every satruday morning.. and he is the biggest kid at heart i think i have ever come across! LOL like others have allready mentioned being silly and having fun really is a good /.....GREAT way to deal with the stress of this illness... I am 25.. and i have 2 baby girls nieces.. well i think that i some times have more fun with there toys then they ...no harm in that... there are times to be "adult" and serious.. but there are also times when you gotta let your hair down and "be a kid" and have fun Flop i really laughed at you flop toy comment.. im not sure if these where real popular about 6 or so yrs back in the UK.. but we had these critter called FURBYS that were very popular for a spell....they where a realy hoot...! i had 2 of them and my mom at one point had like 5...lol.. no worries about playing with "flop"

GGGEEEEEEEEEEEEZZZZZZZ! i know this is not suppose to be dificult.. but it still wont let me upload anything..says i have an invalid link and stuff

OOOOOOOOOOOOOOOOOOH! that si waht i was trying to do was upload a picture of my cat for my avatar...But photobucket works too.. they have some neat stuff.. ive never heard of image shack i will have to check that out... thanks for the help!!!!

hi im trying to upload a new avatar photo and im having trouble.. i looked in help.. BUT im still not getting ti to load up... somebody pleae help!! lol thank you!

dont worry danya.. ill be back! LOL.. uhm several times by the sound of things ...ill let you know next time im heading to milwaukee....

uhm i notice that at time on clonidine i will be fine before i tak it... then with in an hour or so of taking it i will fell very "witchy"...

thanks everybody for the support! Sophia.. yes i did ask about alternative treatments... Uhm I was told that at this point conservative treatments are really not going to be of much help.... i have been thinking of travel arrangements.. and will probably fly next time out there... as it sucha long trip!... Uhm I do have a few other dr's that specialize in chiari to get opinions.. thanks to the wonderful ppl on here!... i have many many concerns and fears about having any surgery really..the neck surgery freaks me out enough that alone.. let alone throwing 2 other major surgies into the mix... i do so badly with medications.. and other odd ball things (IV tubing..tape..ect..) i mean spinal cord.. brain stem involvement just gives me the hebbie jebbies for real... uhm.......hahah i forgot wahtelse i was going to write.. so ill sign off for now..lol... sophia no need to be sorry for asking q's.. i was allready thinking them myself.. hugs to you all dizz

glad that you found something atleast out.i hope that your pcp will follow you carefully for everything.!

hello fellow potsies! i wanted to post a quick post .. and let you all know what i found out...Uhm the trip to milwaukee was ver long and tiring.. but i feel worth it! Monday i had my baer and ssep testing done along with better mri scans/chiari protocol.. my results show that i do indeed have chiari malforamtion. It also showed that i have congential stenosis... Uhm my left cerebral tonsil is herniated .. and that i have pinching and "squooshing" going on with my spinal cord and my brain stem... uhm also that i have a majorl bad herniated disc at c5-c6 level and a large bone spur at the same spot hmm its also shows that i have a vetebral artery being sandwhiched between my hernated tonsil and the brain stem... my chiairi diagnosis was made not only b my mri's but also b the ssep testing...there where abnormalitys there too.. first course of treatment rght now is too get surgery done to fix my neck and m bone spurr... it will be scheduled with in a few months... then chiairi surgery... if i decide that i want to go that route...actually i'm facing 3 surgies ... uhm.. the dr feels that my dysautonomia and my pots are congenital... that my pots is being mde worse by the chiari... that i have had both issues like i said since birth b/c i have ALWAYS been sick... I relize that chiari suregery is not a cure for chiari or for pots.. but atleast im getting some answers... and the dr that i saw assured me that what im suffering from is very real.. and that im not crazy.. and most certainly and am not in need of a psychiatrist like ive beeen told over many yrs that i need b/c I wasnt really sick. I feld so validated the moment the dr and the NP started talking to me...i also still feel overwhelmed at all the information thrown my wa as well.. and ever more overwhelemed that im finally getting some answers!!! I kept saying WOW!!!!!! and OMG!!!!!!!! when the dr was talking to me... im still overwhelmed and quite honestly in shock that i got answers! Today i saw Bev at dr grubs office... im going to give mestinon a whirl again... im going to take a quarter of a 60mg tab once a day a slowly slowly work my way up to the full 60mg. Also increased my beta bockers.. as well.. but im only going to start one new meds or medication dose increase at a time.. get use to one thing then increase another... just wanted to let you al know what i fond out... the new/confirmed diagnosis dont explain everything but they sure do help!! Hugs to you all!! dizz

I havebeen on clonidine since 2003 and dr grubb put me on this medication. Its is pretty much the only drug that has helped me with the adreanaline sureges that i get.. ive got from getting them nearky every night to only having them maybe real bad 3-4 nights out fo the month Uhm i agree with others that getting the dose right is tricky...I have uppped my dose many many times. UHm i just went upot to 2mg twice a day... i do hav side-effects of this meds.. it makes me very drowsey.... and it does affect my mood on occasion.. but the benefits far out weigth the side effects for me... hope that you can find something that helps you

HAPPY BIRTHDAY EMILY!!Hope that your having a fabulous day

hope ur feeling better soon amy!

rachel yea i have similar symptoms that you are talking of... and yea pots headaches i think sometimes are indeed worse then migraines... my legs turn purplish dark red.. even black in spots...w/o hose on.. and my upper legs are that color when i have hose on...its amazing! the colros they change... Flop... yes i get a small amount of sweeling in my feet.ankles (mainly my right foot).. when im not wearing the hose..But when i wear my hose...both feet swell to the point that my stocking like cut into my feet/ankles... I do have days where my stocking do not cut into my feet and i dont have swelling... so im abit baffled whats making them do this.. guess its a question for the ANS dr!! thanks for the info ladies!

hope that you get some answers soo and are feeling better.. thinking of you .. love and hugs linda

Bee.. girly you are so NOT a DOWNER!!! dealing with this stuff day in and day out can leave the most positive of people in a funk at times... I know that your fatigue has been bad for you... I wish i had something to say that could help you with that.. my thoughts go to maybe trying b12.. i dont actually know if this will be a huge help.. and i cant remember if you've treid this or not allready... another thought....i agree with jacquies suggestion of a sleep study.. it cant hurt to have one done if you havent had one done in a whuile... also another thought.. as it was pointed out to me recently.. you know i have nasty fatigue as well... but maybe the change in seasons is affecting you?? you know our bodys are so very senstive to changes in weather and seasons and what not.. I dont want to sound like im down playing ur faigue at all with the season comment thing...i mean well sweetie! I hate that you blood test for mito is so freakin exspensive... I hope that you can find a way to get that test done so you can at the very least know for sure if there is mito going on or not.. then go from there.....it infurates me that you where told "I think you have mito disorder then no real folow up was done!!! Again wish i had more words of advice and suggestion to beat the fatigue.. if i find something that helps... ill be sure to let you know.. know that im here for you Bee!!!! love and hugs dizz

dysautonomia effects everybody different in regards to how they do at certain point in the day... some ppl do well in the am other do well in the afternoon.. or late evening hours.. I know that for myself that I have been all over the spectrum of what time of day i do better in.. there are times when i "perk" up and am more functioning after 7pm.. other time.. I function better at like 11pm for a few hours... lately I am doing better the very first hour or 2 upon waking.. by 9-10 am im back in bed taking a nap...(most mornings..unless i have a very bad night then its a different story).. and as the day goes on I feel progressively worse.. and the remainer of the day is shot. then there are times when morning hours are absolutly horrible.... dysautonomia is always changing for us-one wk tachy and chest pain is the biggest symptom.. the next wk it could GI issues and cold feet.. be it a delayed response or just the way things are working for you at this particular time..

hi folks.. i was wondering.. do any of you experience sweeling in your feet and ankles AFTER (its not there before) you put your hose on? and my next question is.. do any of you experience bad headaches in the back of your head after taking you hos off for the day? I ve noticed and maybe its just a coincidental.. but after i stand up after taking my hose off.. i get like insta heart pounding in the back of my head.. which leads to alot of pressure and stuff back there... its like a loud hard pounding BOOMBOOM BOOM in my head.. so NOT cool! and makes me feel like kaka

WOW KUDOS to thos eof you who can still take a hot bath or shower...hot baths and showers.. are a big trigger for fainting .. or blacking out for me..or near syncope... I learned after my last bad faint in the shower that I keep it as cold as i can possibly stand it... and i run a fan to exhaust any heat and have my door wide open.. with another fan or the ac running.. and of course my lovely shower chair with a back.. and i only shower if somebody is at my apartment with me.. so please me careful with ur hot baths or showers!

hi mary.. i take bextaxolol and clonidine for my hr and BP..this is a good combo for me.. but in order for this combo to work fairly well im on max and high doses.. Uhm youmentioned being a bit apprehensive about trying a bb.. you mentioned your on proamtine... uhm maybe if you try a low doses of a bb to see how you to.. in combo of course.. maybe you BP and HR would level out a bit.. it takes alot of trial and error some times with meds.. in order to find the RIGHT one for you... Uhm is your dr treating you for pots knowledgeable about pots? or just kind of going by the seat of his/her pants? Maybe your local dr would be willing to contact via telephone an expert in the field.. if he/she is nervous about prescribing a beta blocker.. hope that you find some thing that helps you.. good luck!

so sorry to hear about your brother.. i hope that he is diong better now.. I know that you are dealing with alot of medical issues your self ernie.. and have been pretty gosh darn sick...you are dealing with medical issues and autonomic issues that reach a level that the "majority" of us on here DO NOT experience...you are a rare bird after all :wub: .... i know that treatment has been a long and tedious process for you.. and im so glad that you have found something that is finally working for you ernie.. I pray that you do not face the risk that can come with your medication and that it continues to help you and give you back a quality of life that you so very much deserve and want... i imagine that its a heavy and scary burdeon to carry.. with the genetics involved in your family... But like i said I pray that your the exception... and dont have to face things like waht you brothers have and did go thru.. again i hope you brother os on the mend and feeling well.. hang in there ernie! BIg HUGS from PA much love linda

WAHOO CONGRATS!! very good news for you that you got approved for ssdi!.. i mean that is a no brainer! but it went thru YEA! and melissa im so happy to read that you are feeling pretty well.. that is fantastic!! Im happy for you! love linda

Hi jacquie.. did you mean levsin? if im talking about the right medication.. I have been on this med now for about 2-ish yrs now now.. i take it when the spasms and diarrhea get unruly.. and it does help.. plus an added bonus.. it helps with bladder spasms.. and the urge/feeling like i have to pee every 2 minutes when i get into autonomic meltdown... this medication has helped me .. side-effects that ive noticed for myself have include... it makes me drowsy.. so dont drive till you know how your generally going to react to it... and uhm.. it sometimes can speed my heart rate up a bit.. nothing wild and crazy.. but enough for me to notice that its a bit faster... and if im having a rough patch where i need to take the med more then once or twice in a day... and a few times during the wk.. i find that it does bind me up.. But the side effect are mild.. and the benefits of the drug.. are worth the mild side effects! I hope that it helps you!

aww very nice photo's! thanks for sharing them