dizzygirl

a set back can be caused by anthing that your body deems as over doing it at any time.. even simple little things that you wouldnt think would cause a crash do.. good luck to you i hope that you start feeling better soon!

chrissy i just wanted to add that yeah going to a urologist or your pcp might be a good idea..I have some bladder problems as well.. and often find that I tinkle more often then I'd like.. way to many embarrasing moments then I care to remmeber!! take care dear and i hope that you get some answers very soon!

usually once my heart rate gets going above 140-150 i begin to notice a difference in how i feel.. thoug sometimes i can be cooking along much higher and not reallly notice that my rate is above 170.. I think I'd have to say once my Heart rate reaches about 190..and higher ( then i turn to mush and am unable to move with out feeling every one of those 240 bpm!) that is when I feel the worst... I get very very cold feet... I'm beyond the point of no return with exhaustion.. and yeah.. the nausea and the sweats - or i should say what should be the sweats- instead is a really bad hot flash and the inabilty to sweat...are just an added bonus i guess.. i noitce that i shake uncontrollably when my hr is about 190.. and my insides feel like they are getting ready for take or something.. b/c they are "quivering"... ...

OHHH!! I'm living vicariously thru all of you!!!!! I would love to be able to travel to other countries!!!! I one day hope to be able to travel to Sweeden-England and Paris!!!!!!!!!! Ireland sopunds wonderful as well! Enjoy your trips folks!!! DUH!! sorry corina I just looked at the date of your poat and realized that you have come and gone allready! the south of france sounds fabulous!! I'm so glad that you are able to spend this precious time with your family.. they will truly remember things like this for years to come.. as I'm sure you will too!!!! now rest up dear!!

that is great! ireally hope that you continue to improve---its encouraging to here positive results!!!

OMG!!! lauren!!!!!!!! I am ssssssssssOOOOOOOOOOOOOOOOOO very osrry for your bad experience in the elevator!!!! i truly hope that you are feeling better tonight after recieving fluids.. and i hope that the next few days wont be too tough on you.. hang in there dear! big hugs linda

Since I've moved back to my home town in 2002.. I've been seen by 3-4 different neuro's here in town thru each hospitpal systems.. the first 2 here.. eeg's came back abnormal.. but they arent exactly sure why.. and they said that there is nothing that they can do for me.. as my case is very complex... and is not responding to really any treatment be it for pots or these crazy neurological symptoms that truthfully I have been having for a very long time... I remmber about 11-12 but my parents tell me that I've been dealing with pain numbness and things even before then.. my mom would take me to the ER.. and my pcp.. and we never got anywhere.. my recent neuro. did the most recent eeg.. and (i p[osted on that a while back).. they think I'm having seizures.. but again nothing really concrete enough..no further testing was done...though I'm going to give her a call tomorrow morning.. well see.. i saw a neuro in pittsburgh last summer.. she did a nerve conduction of my legs and one foot.. ...that was with in normal.. they did a QSART test and abnormal on that was the mini tilt that they did laying down my bp was like 132/?? and readily dropped down to 88/?? something. quickily..I had an MRI done of my Brain and pituitary last summer as well.. abnormalityies there too.. more recent MRI of neck shows abnormalitites too.. SOOOO... I've been told svereal times that I'm am going to have to travel out of town and most likely out of state for treat and evaluation.. both for neurological things and pots... Tomorrow I am sending my med records and films off to the chiari institute... I understand that they are thurough there.. and take you seriously... I think the recent neuro's I've sen are taking me seriously.. they just dont have any answers.. or the advanced technology to really go any furture... SO I'm sending the stuff out tomrrow.. along with a a prayer that tci will accept me as a patient and run some test and scan and MRI's..b/c i too see and feel that something is wrong.. i see myself deteriorating and functioning less and less...the amount of neurological symptoms cant all be chalked up to pots so if i hear anyhting i will surely let you all know.. wish me luck on tci!

thnak you ladies... I have been to many many neurologist in the past 9 years... about numbness and things... and they dont know...or they tell me that my case is beyond there scope of things.. and its too complicated for them.. so.. I guess i keep looking for a neuroloigst.... I figured a few weeks ago that i should probably be a bit more concerned with what was happening numbing wise.. when i cut my finger open and ddint even realize or feel the cut happen in my thumb! I'm frustrated in my body in the fact that it is going completely bonkers.. and that I'm unable to get some concrete answers for things.

katherine that is great news!! how wonderful to watch your home being built from the ground up! I Hope that you new home is filled with lots of happy memories for you and your family!

hello folks over the past lets say 6 months or so.. I've been havin increased numbness in my left side..( primarily my hand -arm and leg/foot) i used to only get the numbness once in a while... now i've got it about 85% of the time in my left pinky-ringer fingers and in my left thumb.. in my left thumb i have numbness/ and pain that is traveling down into my wrist and up my arm.. its painful.. and my strength in this particular arm is much weaker then my other arm... the same kind of thing is happening from the back of my knee down clear in to my toes.. i get over come with profound weakness in the left side to the point that i feel like the left side oif my body is dead weight.. i get it in any position awake or asleep(upon waking).. and i just cant move or feel anything no matter how much i want to or try.. i'm also gettinh alot of inviluntary twitching and stiffness.. i am trying to keep movinh my hand and fingers b/c of the level of stiffness that i am getting alone.. i fear the day will come in the near future where i will losse the ability to use my left hand.. when i try to move my finger .. my pinky finger i can feel it slide in and out of its socket.. and thta really hurts! i also noticed in a pic i saw of myself recently that the left side of my face apeears to look swollen..i can see the difference once looking at the other side of my face.. my eye and cheeck look swollen.. and my mouth looks a bit off kilter as well.. my eye looks like its going to pop out of my head or something.. it was really weird.. I was like waht the **%$! But i wonderting do any of you deal with this? and if you do what do you do about it? the pain involved as well? i had a nerve connduction test done of my hands when i was like 16 b/c of pain and weakness.. but the neuro that i saw said it was nothing and said to keep taking anti-depressants! and walked out of the room.. here we are allmost 9 1/2 yrs later and I'm loosing the use of my hand..geesh i'm falling apart! I thought I'd ask all of you about t his.. as I'm a bit uncertain of where to turn for help at this point.. there are so many different things/systems going wacky.. its a bit overwhelming for me as well as the docs treating me.. any insight would be appreciated.. thanks dizz

rebecca I am SOOOOOOOOOOsorry for your wacked out pa appointment! there are some good docs out there (and pa's and np's) who do care and are more concerned with the patient the the dollar sign.. I do hope that you find a good doc to treat you and take you seriously soon so that you can start proper treatment.. the whole load og crud about being agood actress and being fat is truly unethical and so uncalled for! not to mention unprofessional! GRRRRRRRRRRRRRRR! I too am "fat" but my weigh gain didnt start until "after" dysautonomia really started kicking me in the buttt. then hello i went from twiggy to a fluffy women! docs used to give me that you are heavy and its causing your problems.. I actually told one MD to bite me.. that there are folks who have pots who are skinny as a rail.. and still have symptoms to the same severity.. despite there weight! I havent got the you fat comment since! again I'm so sorry that you have a worthless appointment I really hopw that you find adquete caresoon good luck dear

yeah sophia that is waht i was trying to put type out in laymens terms.." how the disability or symptoms affect daily living" But it didnt come out that way! and by lists I meant symptoms of dysautonomia that are on the criteria and such for disabilty. and yes you can get disabilty.. based on dysautonomia.. but it can be a lengthy process..

Bec I do not believe that "dysautonomia" is recognized just that as a dx for ssdi,ssi..(i might be wrong.. but I'm allmost certain that they do not) But instead I know that when I wne thtur my appeal with ssi.. that they broke down the symptoms that i have DUE to dysautonomia.. (ie.. fainting-syncope-- near syncope, tachycardia..-arrythmia's.( i was able to show them strips of my Hr at 185-200bpm.. as well as all cardiac works up.. and statements from my docs even the ones who thought i was a looney.. but yet couldnt not denie the fact that I had a very fast heart rate.. shortness of breath, GI troubles, migraines, and the list goes on and on.. when you list your dx's list your sysmptoms too.. have somebody msybe help you break it down so that you can explain how the SYMPTOMS of pots/dysautonomia affect you in daily living.. But no i cant say that the acutally diagnosis of dysautonomia was used.... but the symptoms where.. does that make sense? the only thing i actually remember being on the criteria list for ssdi (for me was) depression.. anxiety.. and lung disease.. good lcuk to you in your ssdi fight dear.. other on here may have more infor for you

wow melissa! I hope that you get over pluerisy soon!! I had pluerisy the whole winter of 2002-2003..and it hurt! I hope that you get some good results from this IVIG treatment.. and that you state feeling better dear! hugs

she does indeed have more knowledge then most medical doctors on dysautonomia.. and she will try to help you with what she has available to help you with.. a new patient appointment of anykind may take a bit of wait time to get into.. good luck to you

Julie..GRRRRRRRRRRRRRRRRRRRRRRRR!!!!!!!!! your mom smoke blowing out my ears!!!!!!!!!!! that just is not right.. that mom of yours! boy does she need some psycho therapy!...you are far from a snobby person! you and your husband are very kind people... I never had the impression that either of you where snotty.. or fake for that matter... you can try letter writing.. I know i;'ve done this in the past and weather or not you mail the letter or not to the person you are writing too.. you are getting the true raw emotions out..... its a good tool in helping deal with things.. sounds like that counselor from back in 1962 saw the true mom that you where seeing?? hang in there Julie dear!! love and hugs dizz

Hi last summer i was on 360 mg of prorpanolol a day (and i still had tachycardia!) I've been on very high doses of other BB's as well in the past..(120mgs of cardizem per day, 200mg of metporol per day.. and on and on it goes!) currently i am on 40mg a day of betaxolol (which I've been told is the max dose) and .1 mg a day of clonidine three times a day

I too have often thought if dysautonomia would paly a part into "me" being aloud to adopt a child.. be it in the USA or internationally.. I have thought more about adopting internationally....like a brother and sister or something like that along them lines...so the children would have a blood relation to relate to growing up.. and as they got older... somebody who looks like they do.. But I have not looked into anything yet b/c i dont want to get told nope sorry you cant adopt a child b/c of health isssues.. granted i think it is important to consirder but it should not be the deciding factor... I know that right now or anytime soon that i could not handle caring for a child. especially being a single parent.. But I would hope that in the future that I'd be able to at least have that option. good luck to all of you who pursue this route!

Oh my Julie... You've got to put yourself first my dear.. I know that it is hard to do b/c lets face it your family is your family.. But you have got to remember that you cant fix a dysfunctional person if they DONT want to be fixed.. orthey dont want the help..i think that i might be able to help you inregards to faimly parental messiness.. but i wont elaborate now.. i will call you and well talk k.. as far as your nephew is concerned..keep offering him support.. and let him know if he needs a way out that you and ron are there..(i will call you about this one k) Emotional stress is going to effect your dyatuonomia greatly... you've been dealing alot lately dear.. and things came to a head.. With such emotional stress Julie sometimes you've got to just kind of give ( i dont mean give into it as like your giving up.. I mean give into waht you are feeling at the time deal with it feel it and process it.. then release it).... into the emotions in order to deal with.. and i know that is very scary and is not going to make you feel so hot.. but i think in the end it might help you..have a good cry.. and call upon those in your life who are truly supportive of you in all aspects of your life.. and understand and care and who are not going to judge you.. and just let you be you...sometimes you have got to walk thru the bad stuff.. in order to heal from it..and i know that that is very hard to do.. give davis a call..if you dont come down from this attack soon... I'm sure he can be reached on the weekend in the event of an emergency.. so dont heistate to call him.. or call him first thing monday morning... hang in there Julie dear.. and i'll be in touch k.. hang in there.. and try and relax.. and calm down.. call me if you need too k i emailed you my new phone number.. Big love and hugs linda

hey there miss sunfish! I hope that all goes well for you this week.. and that you are out of there soon. and back home in your own fishbowl soon! take care dear and let us know how things are going when your up to it. Big hugs linda

hi jacquie! AHH! the shaving legs fiasco!..LOL..whatever you do do not stand to shave you legs.. I know when i was a teenage i'd stand and sahve my legs .. correction I'd stand on one legs and prop the pther one up).. I'd always wonder why my legs would turn ssssssssooooooooooooooooo very purple!! But my legs would bleed and bleed even 4-5 hours later the "dots" or goosebumps would be bleeding.. that stunk... I learned by trial and error that i needed to sit down when i shaved.. then I've found a few things that help avoid the nicking of the legs... Gillette sensitive skin shaving gels work nicely.. adn they make the legs feel smooth too..along with the gillette pivot razors.. they ruin about $5-6 dollars for about 10 razors.. and the gel is about 2 something.... or waht i use like all the time now is the Intuition razors.. you know the new fangiled razor thingy that is out now.. they are exspensive though.. but its a all in one deal.. with the stuff around the razor that is in the middle (sorry can think of waht it is called).. but you can shave your legs in one swoop with this gadget... no need for gel or anyhting just water... but like i said the cartridge thing runs about 9-10 dollars.. and the refills are pricy.. they run between $9-14...they have snesitive skin ones.. that is what i use.. they are pricy... but i find that they are easier to use.. then having to go thru the hassel of gell and shaving the rinsing..(iactually dont have the energy to do all that now! lol) .. and I've had no prblems with nick or bleeding since i started using this..

I was given Levsin sublingual tabs.. to use for when my guts are in an uproar.. and i'm nauseated and things like that... I only take it when absolutely needed b/c it does and can cause your HR to speed up.. that and even if i only take 1 tab.. I'm constitpated for about a week after taking it.. i would talk to your doc who gave this too you.. mabe you can drop down to taking it only when you need it...

Julie hi.. I dont know anyhting about the finctional exam you had to do .. i've never been thru one.. But i wanted to pop in and say hi.. and I know things are hard right now..wish there where something that i could do! Wanted to send you some Big gentle hugs... dizz

Alexia.. no the reasoning for it has not been explained to me.. only that it really sounds like I'm having 2 diff. types of paralysis occur.. thats why I'm hoping to find a neuro or any dco really that is specialized in these disorders.. so that i can get adequate treatment.. and maybe get grip on things.. I've had sleep paralysis since i was a small child.. and it settled down a bit for a few years in my late teens.. but is now like going crazy... SO I will keep looking and i will let you know when i get an explaination as to why sleep paralyse occurs!

has it been "officailly diagnosed.. no.. but on an unoffical level yes.. kind of why i need a doc to "officailly" diagnosis it.. and do a proper sleep study for sleep paralysis.. and then to go over my current and old labs.. plus history....my potassium levels have been low for over 5 years more often low then normal...and i'm sure thru out my entire life.. as I've been paralysing since i was a child.. its my understanding that this periodic paralysis might explain my incredibly high HR that i get.. aside from the pots realated stuff too.. but um yeah i think my records kind of speak for themself... if somebody who is fimailar with the disorders is looking at them that is...ya know? hey thanks for the link melissa!