dizzygirl

sorry that you are feeling yucky rita! i hope too that you can hang in there until the beta blocker blues subsides! hugs to you..good to see you on here by the way.. sorry that you arent feeling well but still goood to see ya stop by

dennis welcome aboard.. sorry that you have pots.. but glad that you found us for support! you should not feel like a freak for not working.. this disorder is very up and down... unpredictable i should say... I have not work since march of 2002.. so over 5 yrs. i was hard to accept that.. but after a while i guess it is easier to deal with.. I guess the question to really ask yourself.. is... do you really feel that you could work? and if so waht kind fo work and how many hours a week do you think you could handle? how many hours a day.. that kind of thing... and be realy honest with yourself.. too.. i know there are a few folks on the board here who do work.. but im pretty sure that it uses alot of the limited supply of energy to work.. maybe they would have more words of wisdom for yuo.. again you shouldnt feel like freak for not working.. this illness is hard enough on us!

thnak you nina.. I ddint even think to look on the physicians list! uH no i havent reid this doc yet... where is Upland pa? oh wait im going to guess by the area code that its in or around philly? my friend with pots had had some good success with docs thru u of penn... I figure it cant hurt to check it out.. they cant treat me any worse then ive allready been treated by the medical community.. at least i hope not...lol... thanks again!

congrats!!! what a miracle to have a healthy baby girl! much love and hugs to you your family and that baby girl! i hope that you can kick the pots down a notch or 2 soon

kits~ you change the patch once a week.. the obnly reason i do not use the patch instead is i have an allergy to the sticky stuff...they have 3 different strengths... you can shower with it on and everything.. like i said in my earlier post.. i have been on clonidine since 2003.. it does take some getting used to both the patch and the pill... I also wanted to mention.. again about maybe your BP is getting to low at night and "maybe " that is in part along with those adremline spikes.. that you are hallucinating.. Uhm im not aloud to take my clonidine at night.. if my bp is lower then 120/70..b/c it can drop you too low at night.. this is coming from my potsy doc... and clonidine is suppose to help with adrenaline surges... uh oh yea.. the patch making you drowsy.. yes it can make you drowsy when ever you take.. if you go to patch form.. make sure you start out on the #1 patch.. i dont remember the exact dose of the patchs.. hopefully you will get used to the drowsiness.. i can be truthfull.. that i still get really sleep 4 years later after taking my doses.. some days i can fight it.. other days i can not.. But seriously.. hallucinations are not a cool sideffect of any medication...if they dont stop after tweaking your med.. i would hate to see you deal with this type of thing all the time.. though i get your hesitatnce in going off of it... If i had hallucinatins where i saw the dead guy every night instead of only when my meds need upped.. i would NOT be on clonidine any longer.. i dont care how much it helps with things... having an adrenaline rush like that everynight really runs ya ragged.. hope that you can work something out dear hugs linda

hi.. im a pt. of dr. grubb.. he has done both for me testing..(that he has available to him to do) and manages my meds.... for my first app in 2003 i actually ddint have to wait long.. i was lucky and got an opening with in a few weeks..this was when he was still doing clinics on friday mornings..he does not do friday clinics any more tho.. But generally to see dr. grubb new patients have to wait about 8-9 months possible longer.. you could get into see bev sooner.. while you wait for an appointment.. even established patients if they want to see dr grubb have to wait months. You could have you primary treating doc call dr grubb's office and ask to speak with him about your case while you wait for your appointment to come up..and like susan mentioned you can call to see if there are any cancellations as well.. good luck to you!

kitsa~ i can relate your not wanting to go off the drug due to your nausea.. and also the hallucinations! i have been on clonidine since i first saw dr grubb in 2003.. and it has been one of the only drugs that has given me relief.....it has been a godsent to me . BUT.. the side-effects from the clonidine.. are and can be quite rough.. I have expereinced hallucinations since ive been on the "PILL" form of clonidine.. but not on the patch form of clonidine.. why i dont know...I also get mood swings and fatigue from this med too.. the type of hallucination i have... is i will wake up and i will be fully awake and look at my boyfriend.. and he will look to me like decomposed corpse... it scares the crud out me.. i know im not nuts.. and it my medication.. but holy crud i can understand you feeling on this..it doesnt happen as often as you are describing.. I would talk to your doctor..see waht he/she says.. what kind of clonidine are you on? pill or patch? there are pill forms of clonidne and there are patches that you can use too.. I have used both..I like the patch form better.. it offered a more constant stream of cloninde to my system...and i did not have hallucination problems while using the patch like i do using the pills. your not alone on this dear.. ive talked to other who have had issues with clonidine..some choose to stay on it.. while other dont... like i said.. i dont have ahallucinations every night like you are.. and if i did i think i would consider going off clonidine b/c i dont think i could handle that every night.. right now i get it once in a while.. and i generally need to up my clonidine dose.. and then im fine again until i need ton increase it.. its weird but the way it is.. I wish you luck in talking with your doc and hoping that you both can come up with something to help you.. one more thought.. can you tweak your dose or play around with the timings of you clondine? maybe take it earlier or something? mabe your bp is too low.. dropping in your sleep? i do believe that low BP can do hallucinations as well..(somebody correct me if im wrong on this.. i seem to remember reading that ..)..and that is how your body deal with the drop in pressure.. our bodies do very odd things when we are getting enough blood/oxygen.. to our brain..... good luck hugs linda

emily thanks for the update! melissa i hope that you are more pain free by now and that you are recovering and healing up ok.. thinking of you prayers are with you love linda

MAXINE!!!!!!!!! thanks for the laugh!! heheh that is too funny! I dont think we will ever everf orget dr. mullet!!!!!! HA! may the prayers be with you maxine... dancinglight i dont mean to sound stupid.. but is university of pitts. the same as UPMC??? in pittsburgh...? also i have an appointment in 2 weeks to get the ball rolling on lyme...during that same appointment im getting the sleep study or at least referral to a sleep specialist set up... I guess my whole thing that got me upset with these docs.. is that this particular office.. KNEW when i called them back in january.. waht i was looking for and waht i was dealing with.. so i was more then a bit stunned ot find out they cancelled me out all together.. and i had thought that ok maybe now i might get somewhere with this doc.. he is a neuro after all with knowledge of pots to boot! and it was a let down for me.. b/c im not getting real far anywhere else. But i have to hold on to the belief that everything happens for s reason and that when one door closes another will open...just have to keep plugging along i guess.. hugs and love to ya all

hi folks :0) thank you gals for your support.. it means alot. Wareagle...I did ask my pcp about going to the mayo clinic.. his reply was talk to the specialists about it!.. But going to mayo ive been thinking of that.. ..i actually was thinking of talking to my local cardio about mayo clinic b/c he has been fantatic in referring me out... GOldie~ hmmm was talking a a dear friend of mine yesterday about this very topic.. while this teaching hospital are not close to me by no means....they are atleast in the same state! I was thinking of contact the University of PEnn.. in philadelphia PA.. my potsy frioend goes there and she has been treated wonderfully!.. she also mentioned another hospital there.. but i cant think of the name of it. I think there is a teaching hospital in Pittsburgh as well.. but would have to digg for info... masumeh--i am in pennsylvania persephone--love ya too! and no i havent checked out facebook yet... tammy and nadine-thank you! uh no i do not have a regular neuro.. ive been seen by a handful in my home town and they have all told me that there is nothing they can do for me.. I do want to mention b/c i kind of feel that i was maybe a bit unfair to my current docs....in my venting of recent events.. but my current treating docs have been wonderful to me and i dont know what i would have done with out them in regards to getting diagnosed w/ pots.. and for all there help support and effort..but they have been great... I went in for IV fluids over the past few days.. and it gave me a bit of a boost.. I felt decent for a full 12 hours or so!.. the brief break or lessoning of symptoms was something that i really needed not only for my physical body but for my mental/emotional body too.. b/c i honestly ive just had enough.. so i had a few hours of relief.. and now im kind of right back where i was 3 days ago.... again i thank you ladies for tour support.. means alot..

amy thinking of you! so glad to hear that things are going well that is fantastic!! cant wait to her of you baby being born.. do you know waht you are having? or are you going to be surprised? lol :) thinking of you,, have you hubby take you for drive donw a bumpy country road.. maybe the baby will not like it and decdie to come out! hugs linda

yea im not on florinef.. i have tried it several different times and each time had to go off of it.. feeling drugged is not to a cool feeling at all...im still getting it very sudden onset.. yucky

oh wow.. thanks for the updates ladies! god love ya! melissa I hope that you start feeling better and recovery nicely.. and arent in s much pain very soon.. I pray that once they get your meds pumping back in you that you feel some much much needed relief... prayers are wwith you sweetie! love and hugs dizz

sorry that you are feeling so cruddy maxine.. hugs that you too gets some answers and feel better soon many hugs and lots of love dizz

hey folks Yesterday I saw my pcp and explained my new/worsening of symptoms to him.. and while he listened to what i said that was going on that was about it.. the doc does not know what to make of my symptoms other then they certainly are bizarre'.. There is something going on with me other then POTS.. and wahtever this is .. is progressing... my pcp admitts (like other doctors ive seen) that they are missing something crucial.. that will help put the puzzle pieces together.. but nobody know what that is.. and aside from doing basic testing.. nobody seems to want to take a real stab at what is going on... I asked about going to the MAYO clinic.. he said to talk to the specilist in may about it. I was Like OK. Nothing else was addressed... I come back for a follow up in 6 months. I was like Ok I just told you that im having increased Nuero symptoms.. and you say come back in 6 months. that is waht got my last pcp fired! He had me in his office with my BP sky high.. I was still in freaky faint mode.. with seizure like stuff going on right before his very eyes.. and he sent me home and told me to call him in a week if i wasnt feeling better... after i had had a full night of adrenaline surges and paralysing.. yeah ok. So today is a new right? maybe i can make some head way somewher else..WRONG!!! I was supose to go to NY to an insittuion there for Eval.. however.. I ve learned that inorder to go there i need nearly 4 grand up front.. I was like yeah that is half og my yearly income. So that is out. Low and behold today.. ya know that specialist i mentioned a few paragraphs ago?? well this particular docs secretatry called me to get more information from me.. for my app. coming up in a few weeks...Which mind you I made this appointment back in january of this year I told them up front what i need from this appointment and who i had seen in the past for current and past treatment... well i got a call today from this lady who was full of herself. And at first she said they where going to put my appointment on hold until i sent my med records for review.. before they decide if they will see me or not.. then as i gave her more detail on what i was experiencing and that i have reached road block after road block.. she informed me that my appointment is now totally cancelled.. her exscuse being this doctor is not a seizure doc. I was like WHAT! I only told her 4-5 times that I DO NOT have a confirmed diagnois of any kind of seizure disorder.. that my eeg's have all come back abnormal.... but thye can not say for sure that i do or dont have seizures.. but i dont have epileptic stuff going on.. and then she went on to tell me that im allready being treated for my pots.. while i aid that is technically true.. that my current treated docs are at a loss of what to do for me. and that i really need to be seen by a neurologist. WELL this doc i was suppose to see in a few weeks is a neuro. what the heck... since when is it the responability of a secretary to make such an inportatnt decision of weather or not a patient is going to be seen and eval? Then she went on to say that my insruance will not pay for out of state services.. that is a load of horse hooey.. b/c my insurance has paid for many out of state doctors infull i might add... she just kept telling me that you case is too complicated.. and that this office is not where you need to be.. so i asked well then where is the correct office..that i need to at.. and if your office is not going to help then id appreciate a referral to somebody who can help me. Im just at my witts end dealing with all of this.. there is something wrong.. something si causing my pots symptoms along to go absloutly nuts.. and i cant get anybody to i mean NOBODY to take any action... i recently tried talking with a nurse who was so rude to me it was unreal.. nurses that rude should not be dealing with patients at all they should be kicked to the curb i think.. well this particular nurse so would not listen me at all.. i was trying to talk to her about chest pain i was having.. and i just got nowhere.. and ended the conversation b/c this nurse was so arguementative ,condasending, and arrogant... that i coudlnt stand talking to her any longer.. it was a waste of my time and energy... I honestly do not know ehre to turn for help at this point.. i feel right now that i have tried every avenue that i have available to me at the presnt moment and ive been shot down again and again.. and getting no where fast.. meanwhile my health satus and my fucntioning level seems to be going down the crapper faster then i can keep up with it... I just cried all morning today... i was so upset.. it try not to get my hopes up... but ya know when you live with this day in and day out.. its kind of hard not tohang on to something hopeful. I really feel like hope has fown the coop here.. and i dont know here to turn to next...there are so many issues.. 2 docs have told me know that im having swelling on my brain.. 1 doc told me about an abnomral brain mri..4-5eeg's abnormal.. no answers.. labs abnormal no ansers... then dropped me as a patient almost immediately.. my symptoms are worsening and new ones are coming about.. yet.. nobody will do anything about it.. so what do i do now? anybody here got any suggestions?

good to know im not aline in these freaky feelings.. tho im sorry that you gys ans gals have it too! it bites.. ..Uhm no i havetn checked my BP when this happens.. I do have a BP machine..so next time i have a spell im going too.. Donna F.. Uh yes i do have issues with low BP.it gets quite low... but i also have issues with High BP as well..Im curently on 2 different BP meds.... I have tried the meds to raise BP and i do not do well on them.. so I do other thigns to help raise my pressure like wear compression hose, salt/fluid load...things like that..

jacquie--HI Uh lets see i got approved in may.. and the beginning of august i started recieving my monthly benefits...and I recieved my first installment of back payments in october so about 6 months after i was approved.. and then i recieved the 2nd half of my back payment 6months after my first backpaymeny check.. I did not recieve it all at once.. congrats on getting approved!! its such a long process that once you finally get it you breath a sigh of relief.. i know i did!

yes prayers are with the family and friends of the vicitim in this horrible tragedy.. my heart goes out to all suffering this tremendous loss

hey.. wondering how melissa is doing.. was she able to get home? How is she doing this week? thanks! melissa still thinking of you and prayers and good thought being beemed your way love and hugs linda

many many hugs Maxine!!! im hear for you call me if you need to vent! much love and many hugs dizzaloo

Im right there with you Rita! I am in PA.. and for the past few weeks i have been unbelievably dizzy! and im not exactly sure what is triggering it myself.. its not my period or an extra illness to deal with.. Im going with its the change in seasons? Now that the trees and posies are about to bloom into acting.. maybe that is why.. I am you probly other too have slipped into the spinning tunnel of dizzyness.. hope that you feel better soon rita! good to see you on here by the way

thank you ladies for your input.. tammy I have thought about adoption as an option for myself.... as it is a very real risk that my body may not be able to handle the stress even if i could get pregnant with fertitilty treatment.. I have talked with my pcp and a few of my other docs.. b/c i do need there realistic opinions and input..my pcp was very blunt in that she had real concerns... Right now all Im doing is research and reading --gathering information...and you gals did give me a thing or 2 to think of as well.. and i thank you for that.. In Leu of my pots issues.. it (my pots) is quite severe right now to put mildly...I would need to get ALOT healthier and ALOT more stable...and the truth is i may never be healthy enough to go down this road.. and that is something i will have to deal with... and it is something that i am keenly aware of and reminded of very often.. But Im open to all possabilities... despite the challenges that would be involved I cant help but think that a strong suport system would make a difference... thanks again

im sorry amy that you are dealing with this.. sending you big cyber HUGS!! wanted you to know that im thinking of you love and BIG HUGS dizz

good luck with the MRI!!! love and hugs linda

Hi alexia.... Im not going to start any kind of fertiilty treatment any time soon.. my focus has been trying to get my body on track both pots wise and period/ovulation wise....my body is being SOOOOOO stubborn! So right now im researching options.. and wondering if anybody on here has done this post pots with fertilty treatments thanks alexia!