dizzygirl

ewwwwwwwww that sounds like a horrible experience.. ttt's i think are equivelant to human torture chambers for us pots people.. they make us all so sick! and recovery is different from person to person but they generally take some time.. take it easy until you start feeling back to your normal baseline... i have had BP's that low many times both with a tt and w/o a ttt..(after faints) um during on eparticular ttt before i was given meds.. my BP had a large drop.. i went from being 140/something to being like 61/53 just like that.. ttt's are no fun.. can you get a copy of the tt results.. and statr maybe looking into getting into one of the pots experts..who maybe can offer you some help? acuarte help i mean? oh and i would think a hr of 60 going to 95 would qualify you as pots... but again an expoerienced doc is so much better then one who isnt familar with our disorder... take tessa hope you feel better

prayers are with you pooh..hoping that you recover and feel better soon.. hugs dizz

MELISSA!!!!!!! Im SOOOOOOOOOOO very happy to see you on the board.. like others have mentioned I too cried when i seen that you where actually able to post.. and when i read of your victories! But it was happy.. full of smiles for you....Now i bet that was the best shower you have ever taken huh? You go right ahead and talk about anyhting that you need to talk about.. let us be your sounding bound... and help and support you.. no matter what it is you need to talk about.. you need an outlet.. somewhere safe and free of worries where you can be real...So talk all you want or need to we all love ya and are hear for you... such a blessing to have you back in your SUNNY CLEAN fishbowl dear...BIG BIG hugs from me! love dizz

wow maxine.. my prayers are with you and your family.. I hope that all goes well with ur mom friday.. you call me me if you need to talk k! you got lota going on.. and im a good listener so talk away girly! BIG HUGS dizz

wow im glad i asked now i dont feel so alone .. in my "what'd you say?" or HUH"S?? all the time.. which is driving my bf totally nuts.. ut OH WELLL! soembody else suggested to me tht it could be the whole potsy mess causing the hearing things as well... it continues to amaze the hebbie jeeebies out me how much this affects everything in our potsy... some of it is down right weird! if i find anything out i will let ya all know.. thanks a bunch

thnaks all for the update.. im glad to hear that melissa is holding stable right now.. tht is great.. melissa still thinking of you and sending prayers your way.. take care love dizz

i was wondering if any of you experience hearing loss? i have noticed that the past few months i have had hearing loss ..loss big time in my right ears and now a significant loss in my left ear..... and last month after my last Iv infusion.. i had an episode of brain swelling.. and once it subsided my hearing is like even more cruddier then it was before.. and my ears are very noisey lots of high pitched stuff... and other weird things.. well my point is since then my hearing is getting worse...any of you experience this???? im going for a ct scan of my brain here in a few weeks..as well as a full spine mri and stuff.. this is driving me crazy as i cant hear well and i keep hearing things wrong.. and i say What? and huh? what'd you say? geez this stuff just never ends!!!!!!!!! oh yea and my ears itch inside like mad! i feel like there is a little buggie in my ear tickling me..too...my actual ears hurt like mad and feel weird if i lay on them my ears feel stiff... dont laugh!! they really do and i do not have an infection in them.. but there is alot of fluid always in there

Happy valentines day from a dizzy snowbunny in PA! we got ALOT fo snow too.. Brrrrrrrrrrrrrrrrrrrr!

Hi was just wondering how melissa was managing at home? is she having any improvements? thinking of you melissa and hope that your ok hugs dizz

hi dr grubb also suggested that i get vaccinated against cervical cancer as well.. to get the gardasil.. we where talking about other area's of my life that i needed to keep healthy in.. and this topic came up.. I dont think dr grubb would advise something that would be harmful to use.. knowing that many of us are auper sensitive to so many different things.. I have a n appointment with my obg to discuss the vaccine.. if i get it.. i will PM you and let you know i had any unruly sideeffects... good to have all your ducks in a row tho before any new things

that is great jacquie that you have found somebody who is going to help you with this terrible nausea.. i hope that you get answers and relief soon hugs dizz

persephone maybe you need to go off cymbalta...that does not sound like very good reactions to a drug.. is ther something else that you can try? take care girl hugz dizz

maxine.. yea i was going to suggest a mattress topper as well.. also.. if your mattress is sagging.. can you put like a um board between the boxspring and mattress to firm it up a bit? and also the matress topper...you can go to walmart they have memory foam pillows that supports your neck for about 20-40 dollars apiece.. depending on the type that you get... they are great.. I also got a reall cool pillow for christmas that is great for support as well.. ill find the website and you can check it out.. ill email it to tto you.. ohter thought if you need more cusion and cant get a new mattress right away.. but waht about a down matres topper ALONG with the memory foam topper? just for a bit more cushion.. just a thought.. hope that you find a soultion.. and GIRL!! get a cpap machine for that sleep apnea! it may make a difference in your quality of sleep! good sleep==== some pain relief dear... hugz dizz

hey lauren im so sorry that you are now experiencing seizures.. they are by no means a walk in the park.. I have some type of seizure that not epileptic.. but they dont know what kind... I was on lyrica.. but to treat/manage pain.. and i eneded up being allergic to it.. it caused me to get itchy and rashy i really hope that you start feeling better soon lauren.. big cyber hugs to you!

Ami~~ willows~~~ Happy birthday dear!! I always love to read your stories.. you have quite the sense of humor! HAPPY BIRTHDAY! \ love dizzygirl

wow melissa I so so glad that you are finally home and in your own bed.. I bet that is a wonderful feeling.. and you kitty must be loving that you are home too!! I hope that you get pain relief soon from those G and J tubes..... and that you continue to heal and get better lots of love and hugs dizzygirl

amby.... ooch.. does the florinef raise your bp? I would say that with bp's in the 70-80's that you would need to give florinef a try.. im not md.. but.. i know enough to know that you have low bp!.. Um the doc who prescribed it for you.. is he goig to tweek your dose? maybe he needs to increase it!! also a thought.. can you drink some salty liquids/eat some salty foods?? and wash them down with water? that may give ya boost with your blood pressure...UGH headaches on florinef are no fun.. have you tried midodrine?/proamatin yet? that also is suppose to raise BP...it has side effects as well but they should go away once you get used to it..just a thought.. I hope that you feel better soon.. and those headaches go away.. hugs dizz oops sorry just seen you where on midodrine!

emily hi.. i dont have any words of wisdom on these meds your talking about.. but i was glad to hear that lyme treatment is helping with neck pain.. i hope that you are able to tolerate the news meds.. and that you get some improvement with it... and i your will cherish any improvement and sense of normalness (sp??? ).. good luck dear big hugs linda

lauren so glad tht you have something worked out for now.. and a plan set up for furtur down the road.. thank goodness... im right there with miss emily.. ive been worried about you as well!! hang in there dear hope that sun peeking becomes afull bright sunny summer day! love and hugs dizz

thanks emily for the update! Melissa I am so glad that they have found a way to get all ur meds into you! YEA! also im very glad to hear that they are working better then they have in years.. that is fantastic! i can not even beginn to imagine how scared and scary it must be for you your family and your doctors that you are off antibiotics.. WHEWWW! girl...i just pray that with meds properly being able to scoot into your body that maybe it will really be the turning point for you.. and from here on out you continue to healing and get stronger and stronger and better and better.. much love and hugs melissa! dizzygirl

hey.. your Bp going up after exercising .. and ur heartrate being in the 40's is probably a response to the exercise for one..as many of us have exercise intolerance..(all part of pots)...and your heart rate in the 40's your bp going up was more then likely a compensating for the fact that your heart rate was lower then your used too.. ther for the body has to find was to keep you upright... pots developing after a heart virus.. i dont know...but you have a pretty good work up right? and it you had a heart virus im pretty sure that your doctors may have picked up on something like that.. such variation dear.. from low to high to normal back down and up.. its all very normal with pots..it is alot to deal with and it is very scary at times.. the lowest my hr has been is 33 and the lowest my Bp has every been is 45/23 also ive had bp's with zero bottom numbers.. the highest i hav every been is Hr 240 and bp 195/145... I hope that i dont sound like im down playing waht you are going thru.. im just trying to find a way to reassure you that what you are experiencing is normal when dealing with pots.. the ans system is so complex...and it really does affect so many different things that its mind blowing at times... but if this is something new its always good to get checked out by your doc.. do you have an ans specialist? hang in there hugs dizz

oh thanks you guys! Ive had a wonderful birthday today....or b-day weekend i should say.. yesterday one of my best friend from childhood... and i went to a movie..its been along time since ive been able to sit in a movie theatre.. the movie BEcause i said so.. was hilarious..we went the the first showing and there werent alot of people there.. so the movie theatre wasnt over heated! then we went to the mall..that was great as well... again havent been to the mall in ages either....i found a sale (wahoo!) and i bought some of my favorite body spray which was a real treat... Once i went to sleep last night.. DRUM ROLL PLEASE!!!!!!!! I slept a solid 8.. here that 8 hours!!! WITHOUT WAKING UP! NOT ONCE!!! OOOOOPS!!! i posted this somehow before i was done typing... anyhoo it was fantastic for me to be able to sleep a solid 8 hours... i woke up to a birthday cake my b/f made me.. it was yummy! He mybf had a whole evening of things planned for me.. but unfortunalty the weather is really really bad here.. and his beautifully thoughtful plans didnt go thru.. he had planned for us to go out to dinner this evening at the restauraunt where we had our first date .. then he was going to take me to DIsney on Ice.. I had mention some months back that i would love to go to that and he remembered!! and he planned every thing for the evening time so i could rest up during the day... what a sweetie! BUT the weather had diff idea's.. so we stayed in where it warm and safe.. he we ordered take out food wahtever i wanted.. again yummy! so its beena wonderful day.. Iv e got to talk to many friends and family members today.. whic is awesome..and had a nap with the kitty.. perfection! so so far being 25 is pretty cool! even tho im quarter of a century old! LOL.. thanks every one much love LInda

the cleveland clinic does blood volume testing.. im going there in less then 2 weeks to have one done...Um I believe that the University of Pennsylvania (located in philadelphia)they do blood volume testing as well.. a friend of mine had one done there a few months ago dr.fouad at the cleveland clinic ordered my test... good luck to you

oh how sweet and fabulous tht her kitty got to come and see her this past weekend tht is great and can be such a mood lifter as well! and she got to dogs visitiors as well that is very cool.. will they let her kitty coma back again if she is going to be in longer? any updates on how melissa is doing? have they gottne any closer to figuring things out? found a doctor or faciilty that can help her? lots of hugs and prayer your way melissa dizz how are you doing em?

ohWOW! thanks nina for all the info and the link...it was helpfull...