dizzygirl

sure.. how do I access the list?

YEAH PERSEPHONE!! you made it!! CONGRADULATIONS girl!! thanks for sharing with us.. BIG HUGS! LInda

hi guys... I am going to go see dr. grubb in January.. my appointment is Jan. 10th.. @1:15.. was wondering if anybody was going to be there on this day.. i would love to meet some of you guys! linda

Hi..I'm so glad that you got some oxygen!!.. when i am given oxygen it does help me tremendously...!!! let us know how you are doing with it..

Hi.. i have a great deal of vision problems/disturbances as well.. my vision is a norm.. very blurry and floaters galor!.....when my pots is acting up very badly.. i get even mmore floaters and black dimming vision... and my eyes are always very sensitive to light of any kind.. more during a potsy spell.. I see alot of double blurry bouncing vision.. especially if i try to read or look at a clock or something with digital numbers.. i see double.. and the Numbers.. "dance" LOL.. really they move all about.. as do words on a page.. bounce up and down!! its nuts!! sometimes if i take anap.. or put a cool cloth on my eyes it helps.. that a drinking some water or gatorade.. helps too.. good luck...

oh my julie.. i will say a prayer for you and your family.. that things turn out allright.. HUGS Linda

Hi Julie.. Bev gave you clonidine too!! she wrote me a script for it a few weeks ago....Um last summer or was it 2 summers ago?? I was on a BB + clonidine and klonopin...I would take the klonopin before bed... and my clonidine was the patch form.. then the BB's were pill form...my only real complaint while on these meds was that they made me tired... but tired b/c they were slowing down my system and HR... I..over a yr ago stopped taking klonopin.... this past summer I did have issues with clonidine and propranol..and mestinon.. my BP was getting way too low.. in part though b/c we hadnt ironed out the doseages and timings of my meds..(was on #3 clonidine patch and a pretty high dose of proranolol..) well I was taking the propranolol and mestinon at the same times... and it was not a good combo.. but once I tweeaked the timings of my meds.. and lowered some dosages.. it leveled out... I did end up having to go off the clonodine patch. But now am going to be trying the pill form as soon as I get the script in the mail.. Bev told me that it will help with my autonomic surges at night and help me sleep better too.. so I am exctied to try this in combo with my current BB.. which is betaxolol (hte new stronger version of propranolol)... I really hopw that this helps you to feel better!! Oh.. yeah.. she probbaly told you this.. but Bev told me not tot ake my clonidine at night if my BP is lower then 120/70... so that it wont drop more.. ( the lowest my BP has gotten that I have recorded is 45/23... and a really weird Bp of 150/0... my BP is all over the map its up its down.. but rarely is it 120/70.. this will be interesting!! )so do you have a way to check the BP before you take it at home?? good luck Julie.. BIG HUGS! Linda

hi..i also have a problem w. tachy during eating.. and there after.. for a few hours... or sometimes all evening...I dont eat alot at one time.. my meals are small...I have found that some foods that trigger these reactions for me during and after a meal.. like mashed potato's.. or any potato.. meat (beef and pork).. noodles.. andything with carbohydrates in it... starch.. ewww!. and any kind of bread that isnt wheat bread causes problems for me as well.. there are probably more.. but those are the big one.. Oh and hot dogs.. also are a rough one for me.. Oh.. yes.. and for me.. if I drink really cold drink with dinner.. that also sets off tachy...(as does something equally warm/hot..) I hope that you get somewhere w/ the doc.. and that you feel better soon Linda

i would take cab.. just incase.. so you dont have to drive. in the off chance that you arent feeling well... good lcuk linda

OMG ERNIE!! I am so sorry for what you had to go thru.. that is just horrible inhuman treatment! my god! and they arent going to see you until the end of january! OMG! oh that makes me so angry!!...in paralyse & syncope for 16 minutes.. my god.. did they atleast give you oxygen when they were holiding you up?? do you by chance know? god bless you ernie.. I really hope that after all that they can help you... hang in there.. i hope that you are feeling better this morning... BIG HUGS TO YOU! Linda

Julie-- hi!! I'm so sorry that you arent feeling well.. pots is so hard... have you ever tried mestinon or Pro amatime to help raise your BP?? forgive me.. i cant recall if you have or not...brain fog! maybe they would be of help to you.. if you can handle the side effects?? I know that you are really sensitive to meds.. and stuff...you could talk to harry maybe or call bev and talk to her about your BP.. she if she has any suggestions?? I know for me.. that when my BP gets low.. that if I make some campbells chicken noodle soup.. and only use about 1/3 of the can filled with water..to add for the broth... that if I eat just the broth with some saltine cracker in it that it is a real boost for me...its a quick fix.. if you dont want to add any more pills to the mix.. oh and drink some water or gatorade with the broth and crackers too.. that helps.. and some times you just need to lay down till you feel better..for me when my BP geta really really low... and i cant move... to make the broth or drink anything...sometimes thats all you can do....is lay down.. HUGS to you Julie.. I hopw that you feel better soon Linda

hmmm... I ddint vote b/c I'm not sure whcih to answer.... I have been on both timespan and non timespan.. with the timespan.. I absoluelty could/cannot handle the doseage....or that form of pill.. it caused some nasty unbearable side effects for me...I had alot of severe GI problems on timespan.... and it caused some speech difficulties..for me.. and the dose was just to high.. and was causing overdose (speach difficulties/slurred---couldnt form words....seizure like symptoms...though no seizures..) for me.. i was on 180 timespan twice a day.. and couldnt handle it... Now I have been on the 60 mgs 3 times a day and the first few days.. were really rough.. but after my body got used to it.. it did help... my mind was clearer and i did have some more nergy...and eventually. my dose went to the time span then back down to the regular..was on 120mg 3 times a day.. and have had to keep knocking it down.. as the dose was too high...)go figure.. at one point could handle 60 mg now i cant!! so I'm currently taking 30 mg 3 times day..(half of a 60mg pill).. and the side effects from taking 30 mg verse 60 and higher.. is much better for me..still get some GI upset.. but not a severe..... the only down side to 30 mg is it wares off before the next dose is due.. and I really feel it after about 4 hours after taking it.. that its waring off.. so I will now have to monley with the timings again on the mestinon... for me it has taken allmost a yr to find the right dosage.. but I finaly did. and it does help.. not drastically.. but every little bit helps!!

HAPPY BIRTHDAY PAMELA!! HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY TO Y_O-U!! HAPPY BIRTHDAY DEAR PAMELA!!!!!!!!!!!!!!!! hAPPY BIRTHDAY TOOOOOOOOOOOOO yOUUUUUUUUUUUUUUUU!!! CAN YOU hear my beautiful singing from PA?? happy b-day.. here's to a good year to come! Linda

Lauren..OMG!! girl.. what a flight you had.. that is horrible!! I am glad that you are feeling somewhat better now that you are on land.. I hope that things go well at vandy.. and that they can help you! Hugs to you fellow dizzy!

Ernie.. I am so very glad that you made it through your testing OK... now you listen to that doc and take it easy for the next few days... or I will be forced to come to canada!!!! let us know what they found out when you are feeling up to it K.... love and hugs ernie Linda

wow nina!! OMG!! I have had both pneumonia and puerisy.. though i cant say that i've had them both at the same time.. one alone is enough.. and hurt like H***.... Oh my... and collapsed lung to boot.. whew! girl take it easy....I really hope that you start feeling better soon.. HUGS Linda

oh my pooh.. I'm so sory that you arent feeling well!! I hope that you start to feel better soon.. HUGS linda

Ernie.. just wanted to send some hugs and good thoughts your way!! thinking of you today and wondering how you are doing w/ your testing.. hoping that they can help you!!! HUGs and love Linda

oh wow.. i hope that you feel better soon julie.. hang in there HUgs Linda

oh my nina!! Ihope that you feel better soon!! and am glad that you did go to the ER.. and that they found a cause of your pain. and that they can fix it!!.. hang in there mighty mouse.. hugs linda

HI... well here is my thought... haloperidol.. is a very heavy duty drug.. I was on it for a time.. (i was majorly misdiagnosed w/ having Bi-polar w/ rapid manci cycles... turned out it was flashbacks from trauma causing me problems... as the flashbacks I was having were hallucinatory flashbacks... a diference!) But my point being psychiatrist are wuick to lable you qitht he popular mental disorder of the times... and I know that haloperidol.. is just so potent.. and would really mess me up after taking.. but i began taking it after I was diagnosed with pots... it did make my pots worse...I'm not sure what the other 2 medsa re that you are referring too.. But.. you can get pots by chemical exsposure right?? So these heavy drugs are chemicals... so I wondering if they ddint play a part in your pots?? I'm not saying that these drugs are the cause of you pots...these heavy drugs...some of them change your chemical reaction in your brain.. and some can be mood altering...and very wcked on the system.. I thinkthat they played apart in your illness.. that is my opinion and I may be way off here.. but I had at one point been on some heavy psych drugs.. .. I was really over medicated.. and wrongly.. misdiagnosed... thinking that oh they must be right!! when they werent!! sorry i have got off on abit of a rmable there.. but yeah.. that is my opinion.. just from my own personal experience.. and reading on medications and what not..

ME TOO ME TOO!! ME TOO!! I am so glad that I ddint fall down those freggin' stairs!!.. there isa mirror on the landing of the stairs.. I just see myself falling into it one of these days.. No I cant get an elevator put in.. though ti would be very nice if I could!!.. would make me much more mobile... this is my BF's house.. and I'm only going to be living here until an apartment opens up.. and that appartment building has a ramp out front.. and an elevator.. and all 9 floor are all one level apartments... and there are laundry rooms on each floor... it actually is a very nice building.. there is a good size kitchen/ gathering area on the main floor.. along with wheelchair accessable bathrooms.. and there is a small exercise/weight room.. and a large lounge room (w/ a Big screen TV!! YEA!) and a computer room off of that.. then there is the lobby.. where the older ladies sit and crochet in the evening.. (LOL---) and the older men shoot the breez... andall in all this will be the perfect place for me to be once I get in... sorry short rambling there!! UM..EVIE!! OMG!! how scary that must have been for you.. I'm so sorry!! I'm going to see that psychologist tomorrow.. to do my first "relaxation breathing stuff" techniques.. I think that it will prove to be helpfull.. the psychologist is great.. she is very understanding.. and has treated a few other pots patients. .. and is aware of the difficulties that come along with pots.. and has impaired functioning can be.. so I will learn some breathing stuff tomorrow.. that will be neat.. thanks guys for the support and encouraging words once again!!!! love and hugs dizz

Oh wow!! that is fantsatic!! I;m so very happy for you!! what a blessing!!

hey all...I had a rather scary experience recently..I was getting ready to come to bed.. and hadnt been feeling well all day.. I was layed up on th couch all evening.. that probably didnt help matters mcuh.. but anyways.. I was trying to climb the stairs to go to bed.. carrying my blanket and a reg. size bottle of gatorade w/ me.. and I was having a hard time making it up the stairs. as my legs felt so heavy.. as did my arms.. I am towards the top of the stairs only like 2 steps to go.. and I start to feel really dizzy and lightheaded.. and I 'm thinking OH NO!.. my legs gave out on the stairs!! my boyfreind was not far behind me.. he's like OMG are you allright? I fell forward and dropped my blanket and gatorade.. and had i not grabbed my railing and fallen forward instead of backwards.. I would have fallen dwon the stairs.. the whole flight of them! that really scares me! I am famous for passing out on the stairs.. so this is nothing new.. but it always scares the hebbie jebbies out of me.. and I will start thinking the "what if's"....I have spained my ankles.. and messed up my knee's and smacked my head so many times due to falling down the stairs.. my boyfriend.. it was the first time he had ever seen my fall to the floor like that... he had been with me thru many many blackouts.. but my blackouts and syncope are different.. it scared him.. he asked me if this is what happens when I pass out? I'm like yeah.. this is what happens.. my legs and body just drop.. I hope that what i'm about to say doesnt sound bad.. but I'm in some ways glad that he was there to witness the stair insident..b/c he alsways amkes light of the fact taht I have troble witht the stairs.. and of my syncope.. not taking things very seriously.. alot of doubting me.. and critisism for my lack of "housekeeping" skills these days.. but anyhow.. I'm just more convinced that I need to live in a place with no stairs!! I'm really praying that an apartment opens up very soon.. this is rediculous!! i cant even cary a blanket up the stairs!! Hello!! how pathedic!! sorry folks just needed to vent that one.. thinking of you pooh.. while the Dr. Suess song often plays in my head.. though i changed a word or 2! I "hate" my syncope.. I hate it cant you see?? i dont like ti here not there!! I dont like it anywhere!! LOL hugs dizz

Miriam... I dont have what you are speaking.. but I have alot fo troble with my eye (s).. I have a great deal of blurry spotty.. cluody.. dimming vision.. I have floater constantly.. they are always there.. no matter what my BP is.. I also have some goofy things wrong with my eye (left eye is very bad).. I cant think of what they call the problem with my eye... I know its lazy.. but there are 2 other names tied along with it.. a eye doc told me once that i have one of the most interesting eye that he had even "seen".. i have a split in my retina.. and my eye is only held in place.. by a fine thread.. that if i ever recieved trauma to my eye.. that I would loose it& or the sight permantely.. they think i was born that way..