dizzygirl

lauren i really hope that it isnt another ear infection.. I ve had several in the past few months..YUCK is all i can say.. I do hope that it stops soon though... and i hope that you start feeling better too lauren! and that those antibiotics help you in the long run..

oh he sounds like so much fun!!

for the past 2 days my ears have been ringing a high pitched ring.. and also they have been having a Heart beat in them.. but the heart beat is ..well a heartbeating sound.. that swooshes.. regardless of what position i am in.. Im am drinking extra water.....it does get worse when i stand so im trying not to do alot of that standing business... any one know how to make the noise stop?? Its diving me mad..

((((((((((((((laughing))))))))))))))))

gee whizz lauren! I hope that you feel better soon dear.. sorry you are feeling so icky.. hugs linda

i get this...i dont know what causes it .. only that ive had it forever.. and it flares.. and i usually run a fever.. and am in pain.. i too cant not stand the clothing or sheets or blankets rubbing on my skin.. a sheet is too much pressure..even my hair roots will hurt.. alot of sleep and it eventually goes away.. hope that you feel better!

((((((((((laughing)))))))))))) too funny... rachel.. i do that alot too.. i have wild hand gestures.. and facial expressions that go along with.. you knows.. and thingamajigg.. thingy ma bobber... you get the idea.. i write lists.. and have to re write the same list 3 times b/c i cant remember where the first 2 are.. only to find the original list of on the back of the 3rd list i just wrote.. with items i forgot about ! or looking all over for my keys on to find that they are in my hand.. HHA

nope and ive been on it a few times..

well im 5'4" and up until i was about 17 ish.. I was as skinny as a rail... I had pots then.. just ddint know it.. however at the tail end of 17 -18.. i began having alot of hormonal probs. then a severe worsening of pots... and i gained alot of weight.. much more then i care to publically admit!! I ve never heard of the stero typing of tall ans skinny for pots.. that a new one onme.. I ve heard that for EDS.. But not pots.. if your ans system is wacky its going to be wacky no matter how skinny or "plump" you are i think..

thanks for the update ladies! I am glad to hear that melissa is having some improvement. Melissa I do wish you a happy birthday.. with healing thought s and prayers now and in the future. You have such amazing spirit strength .. you are an inspiration dear! Hope that you get to swim around in your "clean" fish bowl very soon.. love and hugs linda

tehe that is funny! thanks for the laugh

i was born this way.. at 12 it got more severe..(though didint know it was pots) then again at 19-20 it got to the point that i was bed bound for 3+ months.. i think mine is passed thru DNA line on my moms side....

clonidine is suppose to be a good drug for hyperadrengic pots... I take it for adrenaline surges.. my biggest dose of clonidine being before bed.. as i get BAD adrenaline surges at night.. you can take clonidine in pill form or there is a patch also that you can use.. I personally like the patch better it offers a more steady constant stream of meds to your system.. but the pill form helps as well.. good luck to you

yeah i have since the beginning of november.. im thinking that it as to do with the change of seasons? as im not the only i know battling fatigue.. its seems to be a general thing.. not for just us potsy folks.. though i think we got a double whammy going on with fatigue

oh my god.. that is so sad and just horrible..she and your family are in my prayers...

wow i can really understand you hesitancy towards going *** concerns of pots...i really doo... BUT.. wow costa rica.. that might not be an oppertunity that will come along again.. especially not for free! Is there any way that you could fluid load right before the flight to and from.. (ie.. can you get IV hydration?? would your pots doc do that for you if you decide to go??) costa rica sounds like fun! I hope that you are able to work something out so that you can go... and live and enjoy life a little despite tis auntonomic night mare that we all live in.. hugs dizz

WOW!!! holy cow melissa... i do hope that you start to feel better soon dearie! my prayers are with you... and happy birthday too .. sorry that you have to spend it in the hospital though! take care andf eel better soon love and hugs dizz

oh believe me i get the muscle cramps and twitching as well... my cramps are all over... and my muscles feel like they are being torn to shredds and they burn like anything i ve ever felt before... but on the other end of the spectrum i get get the stiffness tht last for anywhere from hours to days.. i get that after the twitching and cramps.. sorry i should have explained tht a bit better..it also depends on what kind of paralysising that im doing to.. sometimes if its sleep related.. i wake up stiff as a board. then as i come out of the sleepy stuff.. i turn into silly putty...other times.. im a blob first then stiffen.. i cant help but thing there is something other then that going on.. what i dont really know.. the med i was put on was called diamox... i was put on it for 2 reasons.. my pots specilist put me on this.. he said that it will leve out my potassium levels... and hopefully help the periodic related paralysis.. the seconds reason i was put on diamox was to treat brain edema.. cause or origination unknown at this time... diamox was original a weak diuretic.. my doc said they found that it helps periodic paralysis.. as well as brain edema.... I unfortunatly could not tolerate the diamox and had to go off of it... i know that im having symptoms that dont quite fit anywhere with any of the illness's ive been dx'd with...thats why i think something other then paralysis is going on.. on top of everything else... ive pretty much stumped all my specialists.. so im looking for ways to cope with the pain on my own.. as nothing else helps

i hear tha ernie!.. like 5 years ago would have been great! LOL.. the coordinator came and seen me today.. everything is ready on there end the only thing that they are waiting for now is for the asistance office to sign off on the paper work.. she said they've been waiting for an othe women for 7 weeks.. and the dude in charge wont get off his duff and just sign the piece of paper.. FORtunalty the state is involved now so she said if i dont get my thing in the mail by thursday to call franky boy and get his duff in gear! im SOOOOOOOOOO greatful for this help.. holy cow...am i ever!

hey i wonder.. what do you folks do who have sleep and/or periodic paralysis... what do you do to help the stiffness? and just to clarify i dont mean normal old stiffness.. but holy cow everything is so stiff after an epsiode that 6 hours later you still can barely move those fingers or toes.. leg alone legs.. even my hips are stiff stiff stiff! I try flexing my fingers and stuff but. that doesnt go voer well.. makes me cry and cringe.. and want to bite my fingers off!.. i was on a med to treat the periodic stuff.. but i had to go off of it.. and my doc still has to give me something different. Uh.. those of you who have this probably know the stiffness im referring too.. its a head to toe thing... thanks in advncae for any pointers. im paralysing ALOT.. yuck and ouch.. oh do any of you get the extremely tight stiff paralysis on your face as well> anything help that?

LOL only reason that i remmber the snow one is b/c my b/f reminds me of that every time if snows.. and he has to shovel it alone.. and the oven one i just said.. laughed.. then forgot what i said.. my b/f again had to remind me... that is almost as good as finding the butter in the baking cupboard.. the brick of cheese in the silver ware draw.. and the phone in the fridge!! yes i did all those... hahahahaha

hey good topic! I dont have any pointers.. but in glad tht you started this topic b/c iwas just thinking to day that i need some butt/lumbar cushion for my chair.... I can quite literally feel your discomfort.. I ve been in my chair all day today while i have to do anything.. one of those. days.. and my darie air is like numb..lol.. legs ouchies... will your insurance cover any cushions for you chair?? a less exspensive though if they dont.. have you ever slepp on a memory foam pillow or something>>?? I ask b/c i was thinking of buying some memory foam pillows and using that for my chair.. good luck to ya

hey how are you doing today??? did you get any sleep?? I hope that you are feeling better this evening.. and are in less pain.. let me know how you are doin k?

she is cute!

hey you!// im sorry that you are feeling so cruddy... want to hop in my suitecase and ride the train with me to TCI...???maybe they can do something to help both of us potsy girls falling apart.. sorry that you feel bad.. wish i could make ya feel better.. or cheer you up somehow! take care friend love and hugs dizz