dizzygirl

goldi~ im going to see a PA thru the pulmon. office in a few wks.. but not for this particular thing.. for sleep related stuff.. but you can be darn sure ill be bringing it up! sunfish~ uhm yes actually a few times ive had fluids.. i do get this stuff about half ways thru the infusion... my infusions are run thru so very slow tho...I havent had iv fluids since june b/c of a a nasty spell i had in the hospital.. i deceided that until i find out what is causing me to r4eact the way i do to IV fluids that im not going to go in for lfuids.. b/c it just doesnt outweught the benefts any more.. i leave the hospital feleing worse then before i went in! nuts.... hugs to all

dont be embarassed! but this can be invovled in pots.. like flop said esp. if you stand very quickly... it can scare you.. especially if you havent really dealt with moving sloping floors yet... hope that you doing better today...take care linda

glad you got your paws on the actual report...now hopefully next wk you and your doc can figure something out.. so that you not suffering so much all the time...thats alot of bulging disc to have by golly...that issue alone will make you feel like pooo hang in there love linda

uhm with in the first 24-hours of starting the stuff.. like i said earlier.. my lungs began to feel like they where wet...my breathing i felt like i really had to work at it.. it was hard to breath like just a normal breath.. and i have extreme weakness and fatigue...unbeleiveable fatigue that i felt deep into my muscles.... iwas taken off the drug and the wet feeling began to go away.. and the fatigue improved some.. so i think very well i could have had a reaction to the medication... But how do i now explain the same kind of symptoms..(they are not as intense as they where while i was on diamox.. but there none the less)....they have come and gone since october... i know that there are some pots patients that can have a feeling like there is glue in there lungs... BUT havent come across anybody with wet lung yet....unrelated to pneumonia or something that is... well hopefully this episode does not last long.....

hi i was on diamox for 2 reasons.. 1. for episodes of brain swelling and 2. to treat periodic paralysis.. to *help hopefully* keep potassium levels normal.. i was only on this drug for like 3 days.. and was quickly taken off of it...and this was in octber of 2006...

hi bp should be about the same in each arm.. uhm.. there is a reason for it.. it was explained to me.. but i cant recall waht the reason is sorry!

nope not alone on tis one...I have like no sex drive at all either...been like this for the past several yrs. while ti can very well be meds.. the ans system does control sex drive too.. so i think it s probably a combo...

hey .. Since october of 2006... after i was started on the medication diamox... I had anasty reaction to the med and i had to go off of...or waht i thought was a reaction to the medication anyways.. so did my pcp at the time... anyhoo to the point.. since being on that med i have bouts where my lungs feel wet (as does my chest) and i have more troble then normal breathing...also shortness of breath is majorly increased as is a congested feeling..sounding cough/breathing.. ive had chest x-rays..they are normal amd my lungs listened to.. im told they are clear.. but deminished... recently the congested junky feeling is there all the time.. and the wet feeling come and goes..I also have a very mild sore thorat.. its not like sore throat sore throat.. but a nesuaince.. of sorts.. wondering if any of you expereince this? Like i said at the time I had thought it was a reaction to amedication which at that time it could have been..but ive been on a steady decline i would say since then...for a good 5-6 months after trying that med i was sick..smacked with one infection/virus after another for like 5-6 mos. straight....(streph throat x'2-3...ear infection.x' alot.bronchitus a whole lot..and so on) anyone?

hmm well.. maxine... im glad that you orth surg got you in so quickly.. hopefully now you will start getting some answers as to why you have been feeling the way youve been feeling.. i mean in more depth then what you found out a bit ago.. Take a deep breath.... and try not to worry..(i know easier said then done.. :0) ).... this surgeron is where you need to go to get acurate feedback... im sorry tho that your left kinda in the lurch waiting for what these 4 things are.. that would be bugging me too....even if you cant do anything right away ya still want to know what s up.. much love and many hugs to you.. call me if you need to vent or just chit chat.. love ya juju.. dizz

is it time for a caffeine full starbucks yet??? Bee i can so realte you what your talking about! only thing i can suggest to you is to take is easy... and if your sleepy.. (and you know by sleepy i mean beyond anything even close to sleepy!) then sleep.. dont try to be super mom wonder women right now.. let some others help pick up the slack so to speak... Hopefully whatever this is flaring up right now will soon pass.. and youll be back to your normal cruddster level of potsieness... take my advice from one anvil (no not bowling ball head ) head to another...rest up and let your body sleep if it wants to sleep! do what you can.. and the rest will be there when you back up to par... you allreayd know what i feel like when i get like you are now.. so ... take it easy...my friends lots of love from your anvil head.. steam rolled out wetnoodlebodied friend! Dizzaloo

if you decide to have an EP study might i suggest that you have an EP do the study that has SOLID KNOWLEDGE in dysautonomia.. my EP study was done by dr grubb.. and honestly i don think i would have felt comfortable having it done by any other dr....only b/c dr grubb (of coure) is one of the leading ans dr's... and i had comfort in knowing that he was not going to ablate my Hr unless he was absolutly sure it was a problemn toatlly unrelated to pots... i say this b/c as im sure your probably allready know.. ablating a persons heart BEcause of pots.. can in most cases make patients worse... b/c the body acutally needs the Hr to get going in order to help keep you from dropping to the floor everytime you stand or sit up.. stand to long.. lalalal... I only mention this b/c i saw a few EP dr's who (wanted to help are good drs) wanted to ablate.. had some knowldge of pots... But where uhm well versed.. in dysautonomia... I know how having high rates like you speak of feel...not good! why did you need to lower you beta blocker? can maybe you try something else that works better for you? what about trying to get into see dr grubb or dr fouad at the cleveland clinic? they are cardiologist very well versed in pots... uhm maine.. w/o looking at a map i cant quite place how far up your state is up north... Uhm i have a good friend with pots who has a very good cardio thru the university of penn in philadelphia.. dr . Lin... uhm he has been extremly thurough w/ her and she has had to have what 3-4 Ep studies done now.. with 3 seperate abaltions... this particular EP cardio.. was like i said extremely thurough... and instead of ablating her sinus node he looked until he found the area's affected.. her tachy (high rates the got her going at 220 during the EP) and it was toally unrealted to pots... an EP study can really help rule out other rythm problems....then if you find that its not a diff rythm problem focus on the pots.. I know that it bites to hear that... but i was Hr broken when i was told it wasnt something else .... b/c i was hoping hey something else.. this fast tachy will be gone.. not the case... but after several yrs of dealing with high high rates im fortunate to find a med that does help... good lcuk to you.. i hope that you can find an EP to help ya out

LOL.. Hi! maxine yea i agree.. but the trick is finding a "good" endocrinologist.. my local one isnt exactly of much help~ does taht surprise you? Uh yea i have 'something" on my pituitary gladn as well as my pineal gland (lesion) and pituatary gland there seems to be conflicting answers.. and no follow thru...maybe i should try an endo thru pittsburgh or cleveland or something.. anybody knownb of a good endocrinologist in these area's? i seem to have some real wackiness with the stuff in my body that is suppose to control my hormones. i sure would love to find out what it is b/c i would love to be skinny again! endcrin stuff went nuts at 17 and my body hasnt been right since...i mean the real what it is b/c ive been on treatment for pcos now for a while and my hormones levels arent coming down.. and im still having the same stuff happen.. and no period even tho my meds are suppose to make me have one.... so i think there is more to then pcos... ok now im rambling.. but boy i sure get irritated!

cardiac tech~ hi... Uh have you ever had an EP study done? I know when i saw my pots doc and we talked about my HR being 200 and higher.. he decided to do an EP study b/c like you allready mentioned (while there are a few of us on here) pots patients dont generally go "that "high in HRs. my doc told me that i could have a uhm electrical problem somewhere in the hr.. causing such High rates.. however my ep study we couldnt find an electrical prob. or a reason for my high hr rates. after my Ep study he changed my beta blcoker to a stronger one..(i had been on a massively high doses of propranolol 4x's a day.. and i was still having rates that where running p to 240bpm... he put me on bextaxolol.. and this med has helped ALOT.. its the most effective beta blocker ive been on... I still get tachy but NOTHING like i used to get.. Oh i wanted to say also.. that just b/c HR of 200bpm and higher are not "typical" of pots.. it is still possible.. (i think) I think that when dealing with our ANS systrems anything is possible! But our system are so sensitive and react and are so wacky... that maybe our/your body is over compensation when you stand or sit or wahtever.. in order to keep you front fainting.. and maintaining a bp.. oh and about bp.. generally when im having high rates my BP will be really high as well... but i also have big drops in bp as well... Uhm i forgot to look at your signature are you on a BB? is it possible if you are maybe trying a new one? Another thought have you had your catecholmine level checked (ie adrenaline..norephinephrine and all that? checked out? good luck to you

ultra sound ok.. uhm nodules.. that actually makes sense b/c my mri also showed that i have ALOT of rather large nodules thru the neck and uhm upper body... thanks!

hmmm.. too bad we couldnt get bill gates to fund or some some interest in POTS! Uhm i talked with dr grubb about procrit.. as its one of the few things i have not tried... But b/c of the insurance i have.. and all the chances to medicaid and medicare...procrit is not covered... Im thinking of trying b12 shots.. or the liquid stuff.. I recall my dad giving me this b12 stuff as a kid ..(i had horrible fatigue then too) and he would make me hold it under my tongue for a few then swallow it.. i remember it gave me a bit of a boost.. also thinking about restarting mestinon and cymbalta.. as i did get small improvement... But im not sure i want to deal with the side effects .. they where brutual on me... I kind of feel like im at a cross of choosing the lesser of 2 evils... unrelenting pots symptoms or nasty med side affects.. hmmmm..however will i choose! (((sigh))))) oh well.. well see.. thanks for feedback folks!

I was wondering if there are any newer meds available recently (as in the past yr) that are being used to treat pots??? right now im pretty much just on beta blocker and clonidine.. and i want to stay as medication free as i can BUT.. symptoms are going to nutty.. that im really considering more medication for treatment.. ive treid florinef,proamatine,zoloft,paxil,prozav,lexapro,effexor, cymbalata,mestinon, provigil,lyrica, a hadnful of ssri's (that i dont do well on) and a boat load of beta blcokers and afew calcuim channel blocker which again are a night mares for me the ccb's Im really hoping that there is something new to try!

Yea ernie!! Im so very happy for you! I really hope that cymbalta help you!! i was on cymbalta for a while and its one of the few meds that offered me any kind of relief.. i hope that you get some relief sweetie! love linda

i have lots of joint pain as well.. i always have.. but no reasons for the pain have been figured out yet...hang in there....

hey folks.. another question been meaning to ask.... in my mri results it showed that my thyrois gland on the left side is enlarged.. it also showed that there where abnornalitites with my volca cords and my treachea...(i cant think of the specifics at the moment).. few questions...I have had my throid tested and tested and retested more times then i can remember... and my thyroid tests always come back normal.. im wondering can you have half and enlarged throid and still have normal thyriod finction tests? Also do thyroid isues can those be snowballed (go with pots) can a wacky thyroid contribute to pots symptoms is waht im tryong to say... are there potsies on here with thyroid issues as well? as pots? i guess im wondering b/c i have alot of endocrine things going on.. but not a whole lot of explaination as to why.. other then.. PCOS I know that an underactive thyroids can contribute to weight gain -fatigue things like... hmmm... thanks fior listening to me think out loud

hey all thanks for the info.... Uhm drop attacks .. that is intersting.. for some time now i have been dealing with suddne extrem weakness and lathrgic stuf...in the past several yrs.. i had a few episodes where my legs would give out.. but it would come and go and then id be allright.. now im getting them ALOT.... I had wondered if if was BP related// but i dont get dizzy or anything like that.. so i kind of put that reasoning off to the back burner... I think that celexa is one of the efw meds that i have NOT tried..i' dont seem to do well on ssri's...but i see bev from grubb's office in oct.. so i can talk to her abut it.. is there a smaler dose of celexa available? thanks again for the info folks!

pat hi.. i live in pa.. while I have never had a drivers license.. When i was 21 i took the pa form thingy to my pcp to fill out and she refused to fill out b/c i faint sitting laying standing with and without warning..not to mention im pretty much alway pre/near syncope feeling.. I do not believe that she ever sent anything to the state saying that i couldnt drive.. only that she (told me) was not comfortable releasing me to drive... which after i weighted the pro 's and cons.. i decided not to fight it b/c my symptoms are so irratic and unpredictable.. i decided that the risk of me driving and getting symptomatic..(ie..everything going blury the lanes looking like they are moving.. suddne stopping.. the stress of driving in heavy traffic..not to mention some of the crazy drivers out there) that the risk of hurting myself and possibly somebody else.. just wasnt worth the risk.. for me anyways... However if i even get to a point where i improve by leaps and bounds i may revisit the whole driving issue.. I think it comes down to if you feel you are comfortable enough to drive short distance.. on a god day.. or if you have somebody available who maybe can go out with you if you are driving (someone else who can drive) that could drive if you suddnely feel that you can not continue driving... I know that my grandmother had her license taken away towards the end of her life.. but that was b/c she had a brain tumor and the tumor was causing seizures.. but that is a diff situation from pots...(gramma lived her in PA too) good luck to you pat.. i hope that you dont have to go thru any more ttt's!

uh i dont mean to sound illiterate .. BUT is compression along the same lines as having your spinal cord pinched off from a bad herniated disc? i have a slow not quite comprehending brain today.....!

hi lindajoy...my legs turn purple all the way to my hips... Uhm and they get a dark purplish reddish almost balck looking on some spots on my feet and ankles...Uhm i wear knee high compressions.. and even with those on my upper legs will still turn deep red where there isnt compressions.. tho not quite as bad if i didnt have any on at all... do your feet feel like they are swelling when you get pooling? my will feel swollen but acutally arent...its weird!

hi ya folks.. I was wondering.. ive in recent wks.. been having alot fo trouble with just falling down with no warning..I am NOT fainting or blacking out.. but im falling over.. stumbling.. and unsteady on my feet.. It is some times with in seconds of standing up or taking a few steps.. other times i can be standing and bloop down i go.. and like i said i am not fainting or balcking out.. and there is no warning.. its kind of like my body temporarily turns into a giant blob for a few seconds.. then returns to normal after i lay where ever ive landed for a few minutes.. what do you all do for this? I have an appointment to see a neurosurgeon coming up in october.. and to see a neuromuscular dr in december... and am seeing my ans dr in october as well..talked to my pcp...he says to go to ans and neurosurgeon.. suggestions anybody?