dizzygirl

good lord maxine you have so much going on i hope that you get some relief from all of this. I dont have any words of wisdom on this particular matter.. but wanted to offer words of support :0) love, linda

hey folks.. I was wondering if anybody gets headaches whiel wearing compression hose? I wear knee high 20/30 or 30/40 depending on the day and activity... and about 30 minutes into wearing my hose i get an awful headach! wondering if this is normal or not thanks!

they are beautiful kitties!

when my pain levels are high my blood presure goes up considerably.....

Hi- I can remember having symptoms at about 4 yrs old.... (now that I've educated myself on pots) .. symptoms became increasingly worse at about 11-12 yrs old.. and then again when I was 19-20 and at the point they where disabling symptoms and i had to stop working and going to school.... i was diagnoses at 20.. confirmed dx's at 21... before my diagnosis of dysautonomia they (doctors) threw mostly mental health diagnosis my way.... b/c they couldnt figure things out... So i must be a nut case if the all great and power dr cant figure me out right?!?!

UGH!!!!!! I hate that you caught this bug!! If it doesnt clear up soon go to the dr... here all our hospital are full with ppl getting the same kind of thing... I've had it for about 3 weeks now.. going back to my pcp tomorrow..cause i aint getting better.... my dad has had it too... only he's had it for some time and has been on like 4 rounds of anti-biotics.. he has the cough with it (i only had that alittle bit) he just started taking some cough syrup with morphine in it.. and it actually helped a little he slept last night with out hacking all night..... i hope that you get better soon!!!!!! love you!

carinara-- I can certainly sympathize with your current situtation...I just wanted to throw my two cents in here.... For starters I really do not think that your boyfriend behavor can be chalked up to bi-polar.. that is an easy out - an exscuse to an abusive mans behavior and not wanting to take accountability for his OWN actions. He sounds like he is going thru the "typical" cycle of abusive patterns... and appears to "loose" when you are most valunerable. he needs to be held accountable.... I know that it is really easy to say "oh just leave him" but truth be told that is something that only you can decide in your own time.. when you are ready... Couple of thoughts...but do you qualify for any social service agency help? like help with maybe an aide? thru an in home health agency? who can come help you a few days a week.. Maybe if you could gain some independence.. in finding help for your self- so that you wont have to be so dependent on you BF- maybe that could help give you the confidence and comfort for when you have flares. also maybe see if there is something available for your daughter.. maybe big brother/Big sister... where she would get paired up with an older girl that would in a sense mentor her.. take her on outings.. empower her and encourage her.. give her an outlet? Also maybe contacting a local domestic violence hotline.. there are some that are run 24 hours.. where there are councelors available... I do not that in some area's (it depends where you are) counselors will come to your home... and your family might be more willing to help you then you think..maybe talk to your parents and see if they cant help you get into a place or get some money set aside for emergencys... call local agencys and see what kind of help you might qualify for... I wish you the best of luck.. and support in which ever direction you go in.... Hugs Linda

Hi... I was wondering if anybody on here has tried cardiac rehab to help your pots? has it helped you? how is it different from PT?.. and the obvious questioin the therapist take your pots seriously? and do they monitor you? thanks a bunch dizz

thinking of you ernie and i hope that you are having a successful visit at the mayo clinic.. hope you get some good results! love linda

my prayers are with you and your sisters family.. I'm so sorry to read of her loss.. and the troubles she has/is going thru.. god bless linda

TEA- sending hugs your way- when sleeping is rough.. I take it easy during the day if possible and try not to to be superwoman...I will nap if i can...and try to remind myself that my system will settle down eventually... i do not take sleep meds..b/c for me they do more harm then good... what about trying sleepytime tea or something soothing (decaffeinated of course) to help? hope your sleeping soundly soon!

rachel i'm sorry that you ended up with a fever and aches after fun time with your family! I often will run fevers -anywhere between 101.-101.5.. at will no infections generally.. I've found that if i do not get enough sleep or if i over do.. or simply because my body wants to...i will run a fever... sometimes if I'm about to go into bad adrenaline surges i will also get fevers. dont know why..just do! HUgs~

YEAH!!!!!!!!!! ERNIE!!!!!!!!!

hello everybody! I hope that you all had happy holidays for those that celebrate! Hmmm So i had a HIDA scan done uh 2 wks ago i think...well i went to the docs to get my test results and it shows my gallbladder function is 9% (i think i should lack of working) Uhm he is recommending that it comes out.. I'm now waiting on an appointment with a surgeon.... SO.. I thought before my appointment I'd hope on here and ask a few questions so i can get all my ducks in a row.... For those of you who've had your GB taken out...how'd you do after surgery? And for those of you who have neck/chiari issues... how did you work around intubation? b/c my neck doesnt not turn well to the right.. and having my head bend back or even tilted (i know i will be out but stilll) having my head back causing me problems.. and considering that i have compression on my brain stem.. I dont want some dummy.. who cant pay attention to what i say think he'she is god! ya know what i mean? can they intubate with your head sideways (i can trun to the left OK...) Did you all have this done as a same day surgery? that makes me feel really nervous! I know that it is common now days for this to be done same day... DO IV fluids before surgery help with pots afterwards? I guess I want to know your expereince and pointers as far as recovery goes before i go in! Its really sad to see the number of years it took me to get some one to take me gallbladder pain seriously! and i had a hida scan done 3-31/2 yrs ago and they said my gb was fine! though the test i had some this time was done differently!! I mean i think its taken some time for myGB to be functioning low.. SO I'm guessing that in 2005 that this thing wasnt functioning to snazzy then either!! thanks.... I might post more questions later...

prayers are with you sweetie! lots of love!

EM i use a powerchair.. and my insurance paid for it in full (right before all those medicaid/medicare changes where made in 2005) Uhm like i said my is a powerchair.. and it has a manual recline lever on it.. uhm my doctor had to write up orders and send them over to a rehabilitation store (that sells medical equipment) and the guy who handles that stuff met with me.. to see what i needed.. then i had to meet with a physical therapist to eval me.. and allow me to explain pots and how it affects my day to day living and mobilty IN my home... Uhm the whole process took me a good 6 months or so i think and my insurance CO. paid for the chair in full.. i paid no out of pocket exspenses. I currently am going thru the process again.. as i need a fully reclining power chair that is all power no manual to it...and this process is kinda the same steps.. only is going alot quicker! then before.... good luck to you....

Yeah see that is the thing.. i've had alot of test results come back abnormal....(mri's ct scans..eeg,s..ekg's, breathing tests,lab work,sleep studys..and the list just goes on...) with no concrete answers as to why! i so need a dr.. that will put the puzzle pieces together.. and like i said before its not going to happen here at home... I see that you have low potassium... have you been checked out for periodic paralysis?

as i'm going thru a yuck bout of adrenaline surges~I had had them some what under control!~ (meaning i was not being awaken every single night with them!) just having daytime ones..when either i would stand too long or go into a store (the lighting trigger them for me along with the standing before i get a powerthingy) I have had 24/7 severe nausea.. and since wednesday i've had vomitting... which is kinda a violent vomitting... along with diarrhea... i dont have the flu..but i know my doc will be like well maybe its the flu...ERRR NOPE! I had just nausea and vommitting on wednesday.. thursday... my body kept getting really weak.. and my muscles would go fuzzy.. and i'd have to go lay down...should have been a red flag that i was going to go into surgy meltdown mode! so i wake up at like 4am in a horrible paralysis spell and i can not move.. and my muscle felt all electrictrified...and i have horrible pains in my guts and in my stomach... I really hate how i physically feel during these.. i cant truly put how crappy it is in to words... the paralysis spells really s&ck.. i've seen local dr/s here at home.. to try and treat these and they brush me off 100%...So i wont even atempt anymore to see local specialist.. b/c they treat me like crap and dont take me seriously.. so until i can afford to travel to see some one..i gues i just deal with them...along with everything else... to the other with paralysisi spells on here do you have bladder issues????? after spells??? IE--- constantly feeling like your going to wet you pants? having alot of joint issues hurting and pain.. and recently my larger joints.. (ankles knees)..tailbone) have been slipping out of place and over exstending.. and gosh darn it that hurts.. last wk i was walking down the hall and my knee and ankle in the same leg just went out..OUCH! my small joint have been doing it too toes and some fingers... so it use to be just when i was coming out of paralysis that my joints would flexable..b/c the muscle tone would be gone.. but now it happening when i'm not in one and that just freaks me the heck out.... anyways I'm just tired of dealing with so many symtpoms and most of the time i can deal with it.. but when you get so many systems all going nuts at the same time it can really run ya down...(i mena more then the every day dealing with mutliple sysytems) I guess it does bumm me out b/c i'm not sure what is triggering this... and I have a hard enough time dealing with my normal day to day stuff... let alone dealing with the extremes too... and these surges...GRRRRRRRRRRRRRR OOOh i dont like em.... and i dont want to upp clonidine again b/c this stuff while it does help the side effects stink.. but i put up with them b/c.. id rather deal with nast y med affect then deal with 7 day a wk surges... but here i am daily surges and daily side effects... so anyways i'm just complaining today! thanks for reading

Hi ya.. I was on propranolol.. and it initially would work and i'd have to keep upping the doses..(by the time i was taken off this drug i was at 396mg a day.. taking a 90mg dose 4 times a day...) i was on the timed release and the short acting...I did better on the short acting i believe... Uhm the only side effect that i can recall from propranolol is it really added to my fatigue...after taking this I'd get (more) sluggish and sometimes would have to nap....i was still really tachy though alot of the time.....w/high rates Uhm I hope that you are able to adjust to this med and stay on it.. i know that giving your body time to get use to a new med can totally stink.. and can freak ya out tooo! I know what you mean about facial flushing... i've found that clonidine helps w/my facial flushing.. I'd rather walk around with a white pasty face.. then a fire engine red face b/c my bp and hr are all over the map... best of luck to you!

ernie.. still thinking of you dear....I just cant imagine being in aparaylsis eppy _they are horrible that alone....let alone having that happen to you.. again i hope that you are able to heal and find an outlet.. as well as get justice! much love to you linda

Ernie you are one brave women.. my god... I believe you and i thank you for trusting us all enough on this board to share what has happened to you and the struggles that you are currently facing...... ernie it takes great courage to come forward about rape....thank you Oh ernie I am so very sorry for what has happened to you.. and again so sorry for how you are being treated... its deeply troubling to see the you being victimized (police& hospital stafff..) over and over again...and especialy horrific that you have had to see this sick monster since your assault. Can your husband possible go to the hospital with you when you have to go there? Or do you have a male family member that can escort you and stay with you when you are there? Or even a friends hubby that you trust? most of what i would say has been said ernie... please know that my thoughts prayers and love are with you... Ernie please hold onto your voice .. your courage.. your rights.. and hold on to the light that you will get thru this and heal from this trauma. Much love to you Linda

hey folks.... MY GI symptoms are kicking up pretty badly. Nearly everytime i go from laying/sitting to standing.. I immediately have the diarrhea urge..it is instand with in seconds... but its not just diarrhea... I get the chills and hot at the same.. I break out in goosebumps from head to toe.. i shake uncontrollably internally.. my mouth gets really dry...and i get horrible flushing. oh and really bad cramps in my lower intestines....intense nausea..oh yuck and i have to get to a bathroom immediately...Uhm I've found really nothing to calm my system down.. as i go thru this at times many many times a day... its an obvious autonomic response... i just dont know how to slow that response down! i take levsin for bowel issues.. but when its such a rapid response the repeats over and over.. the levsin doesnt do squat! this has been an ongoing problem for literally as long as i can remember.. even before i had full blown pots symptoms. However.. its becoming quite a pain in my rear...uh literally! LOL... to others that have this type of issue .... have you found anything to help it? thanks

uhm yeah pots had totally affected my social life from the word go! i went from working and being in college to being bedridden...most of my "friends" (you truly find out who your true friends are when things get rocky!) split... at this point in my life.. i'd say i pretty much have no social life...while i talk to close friends and family.. i am aunable to travel or for my local friends.. its nearly impossible to go out and even do an hour or 2 to have lunch or dinner... while i love visits from friends.. i've one to many times been unable to keep my eye balls open and i've fallen alseep! while my closest buds understand.. i still feel bad b/c they took the time to stop by ya know? I dont know if it werent for the telephone mail service or the innternet life would be prety gosh darn lonely! anybody found tricks to being able to get out n about?

HAPPY BIRTHDAY EMILY!!!!!!!! Lots of hugs to you!!!!

hmmm i agree with corina kinda hard to answer! Uhm here is what i found some success with. as far as medications go.. Clonidine has been a good drug for me.. when i first saw dr grubb he put me on the clonidine patch.. and i had a fairly decent improvement for a few months anyways. I now take the pill form of clonidine and it works allright. uhm Mestinon was initially helpfull for me early on.. I had to go on very high doses of mestinon.. and i did not do well on the higher doses of mestinon.. and the "low" dose was no longer effective. Cymbalta was another drug that was initally helpful. I LOVE cymbalta it helped give me small energy burst and made my brain fog better. cymbalta was another one where i quickly had to up doses and could not tolerate the side effects at higher doses. IV fluids ...mm IV fluids are always helpful.. depends on the amount and speed of the drip.. I'd be good for about 8hrs. to maybe 2 days on a 12-24 hrs worth of IV fluids. Non medication things....rest, learning what time of day is best for me to do things, prioritizing my uhm -stuff---uh activities! (lol) and not being hard on my self for not completing everything... KNOWING LIMITS!!!..accepting help from others.. that is a big one for me.. accepting help b/c i am/was a very independent person... and i'm stuborn and dont want to ask if i can avoid it Uhm Knee high compression hose have been good for me... i wear then when i know i'm going to have to be upright for a while.. shower chair is a must in my book! powerwheelchair has been a blessing.. it has allowed me to be a little more social (after ive slept all day of course ) when i other wise would not have been able too... I am alot sicker now then i was 6 1/2 yrs ago.. but these are things that i can think of off the top of my head that have helped for a minute over the yrs. oh yeah propranolol helped me too initially (its beta blocker) until i again got to very high doses once again and had to switch to my current BB.. betaxolol..by the way is decent as well! keeps the ticker below 150!