dizzygirl

sorry to keep chattering about this...I had another one of those freaky spells this afternnoon.. and OMG! i can barely move my neck to the left.. so much pain going on.. and everything hurts badly.. so does my freakin'head..I feel like my body's insides as well as outsides are about to burn to a crisp... and that Darn bee stinging feeling.. and numb feeling wont go away in my shoulder.. UGH i think its time to call the doc and home nurse..this is so beyond scary..

Julie---I read your post before you removed it...but wasnt unable to reply at that time (was at the start of another syncope w/paralysis..so not cool) Julie please call me if you want to talk.. i know things are rocky right now...call me at home allright! HUGS to you Julie! Linda

Nina that is very COOL!! I hope that this everyhting you want and more!! WOW how exciting!! I wanna come too!! I''l bring my own suitcase to crawl in.. its on wheels!! LOL very awesome news Nina!!

Morgan what a DARN (insert your own word here______) fool that doc is.. I'm so sorry that you went thru that.. tks jacquie.. i hope so too

thank you all for your kind words and suport! i'd be so lost w/o you all to lean on from time to time .. that isnt a bad idea baout a nutritionist.. though i eat pretty healthy.. and stear clear of the carby stuff.. and fried/fatty food.. and red meats..i wonder if inusrncae will pay for that.. hmm mommamorgan... i am so sory that you are in the canyon alot these days too..well atleast you arent alone there..i hope that our visit to the canyon is very short..b/c its getting real old down here!! So since i'm in the canyon. do you think I hit bottom yet?? and that maybe now i can start the S-L-O-W climb back up?? and i'll pull you up with me morgan! hugs to you all

are you prone to migraines? I get all sort fo freaky eye pain/pressure with migraines..hope it feel sbetter soon

oh wow.. I was kidding about the allergic to the body thing.. but yeah that would not be cool

hmmm. funny topic! I would like to be everything! I wan to fly.. like superman.. jump like spiderman.. kick butt like ZENA warrior princess..run (wareagle.. i have never been able to ru either!) fast like that little squirt in the movie the Incredibles.. bend that elasti-women.. actually I like all the characters in the movie the INCREDIBLES!..and um I havent though of my superhero name yet.. will get back to you that.. BUT I WANT IT ALL!! AHH! I am now INCREDAGIRL!! instead of dizzygirl!

Shannon I am so sorry that your friend made you feel bad.. and that they were so inconsdierate.. I wanted to mention.. Do you have insurance?? depending on the type of insurance that you have.. if you can get your doc to write an order out for and fax it to a rehab store.. insurance should pick up the full cost of a shower chair.. I know i just got a new one.. and insurnace totally pd. for it all.. ahower chairs make the whole showering thing alittleasier.. as do the detachable shower heads with hose.. take care! and great job on the being able to go to college full time! that si wonderful!!

nope julie they have not.. remebr that MRI we talked about ( the one that I cant get the films of!!). well after the eeg's kept coming abck like that they did an MRI.. that one showed the cycst on the pitutary and pineal glands.. and nobdy will follow up on it! I would think that considering the mutlitude of things going on.. tha they would follow thru on it..theywere suppose to repaet the MRI of the brain and gland in 6 months at the latest.. and it has beenalmost 10 months.. Think its time to call Dr. Heffez? i think so.. but I posted about my doc trip on an other tread. (meltdwon at the docs).. I kinda hope that I made sense.. i cant think very clearly today.. apologize for any talking in cirlces and such.. but I hope too that they figure things out as well.. thanks julie!

hi.. yeah i get goosebumps and chills during bad spells.. and I also get them very badly during adrenaline surges.. YUCK!.. I am so cold at times (like today) that I wear many many layers of clothes.. and am bundles under about 7 blankets.. and I will still be cold and shaking.. I think it the bodys way of saying hey HELLO!! I dont feel right..its a reaction to stressors of the ans system..

Oh my folks.. ifeel like a real basket case today..my coping abilty is "compromised" along with the rest of my body....I did make it to my doc today..and i was telling her about the epsiodes that I have been having this past week. and I started to cry..b/c i am so sick of feeling sick.. and being in pain..and you just reach a point at times where you just cant cope.. and I was there today.. you know you have a good doc when they get teary eyed right along with you.. i just kinda feel at the end of my rope...I know that there are ups and downs with pots.. I feel like I have fallen in to the Grand canyon of pots holes..and at the moment cant see the light at the top of the canyon...or any relief in sight.. I did find out today though that my diabetes has indeed progressed.. and pills alone might not be enough.. that I might have to take insulin shots.. I was jsut like OMG! i said that I dont want to have to be insulin dependent.. tha though just scares me to death.. my aunt was insulin depenedent.. my doc feels that my diabetes is playing a role in my pots acting up so badly right now.. she is giong to try and find me an ando to see.. she doesnt want to start me on anyhting new diabetic wise.. util she talks to somebody.. b/c of everything else going on other then diabetes.. i feel like my body is revolting against me..is it possible to allegic to your own body?? my doc thinks that i am releasing lactic (sp or anme right?) acid into my muscle during apsiodes that are causing paralysis..she said that the next time that i get paralysis if during the day (office hours) to call and they will direct admit me to the hospital.. and that when I t happens again after hours to call the on call.. and tell them that I must have IV fluids.. and explain what I have. she said they are not going to know what POTS alone is..they are still fighting w/ insurance about IV's I am very thankfull to have a good . great.. PCP.. but feel bad b/c I dont want anybody else to feel bad b/c there realy sint anyhting else right now to try in regards to treatment..my PCP told me today that she doesnt know whatelse to do.. and you know I can relate to what she is saying b/c I really dont know what to do either.. I mean I have and am doing everything i'm suppose to be doing.. I'm sorry I dont mean to be so negative.. but I am having a real dwon day and feel just horribhle.. I need some cyber hugs!

Hi thank you gals so much for your input.. ernie..yeah can relate to the burning muscles.. especiall in my arms and shoulders.. eeww that is a horrible feeling,,, and I am still recovering from the bad epsiode fron saturday.. and its thursday!.. BIG OUCHIES! my bones hurt but good.. and my muscles geez they hurt..both of my wrisrs and my ankle feel like I sprained them.. and fatigue is unreal! jannieern--I have had several EEG's done (some from this oast summer).. the eeg tech who did my test.. has done it a few times before and he always tells me that I have an interesting interpetation.. the eeg shows no seizure activity.. but does show that my brain functioning/activity is slowing down.. go figure they dont know why..I will look into the mag and calcium.. morgan.. hmm you are making me think! LOL..low potassium makes alot of sense for me.. ove the yrs. during bad spells..(bad syncope spells&HR over 190 and higher) my potassium would always come back low and I would have to take potassium pills for a while to get things back to par.. and thenit would "disappear again" and back on potassium I would go.. so I am going to look into that as well.. and I am going to look up periodic paralysis as well.. thanks for the support and input! much appreciated!!

belinda DO NOT worry about what you post.. this pots is very hard to deal with at times and you need to be able to vent whatever you are feeling about it.. I PM you my number.

yes ernie!.. sometime i will dream about fainting and will wake up feeling like I have fainted.. I get exhausted like I do after fainting..sometimes the next day i do faint..or my POTS symptoms will flare to the max and I am donw and out for days at t time.. I have often wondered if I am actually fainting in my sleep.. is that possibel to faint while sleeping? it scares me what my body is doing.. and that it is doing it allready while laying down!.. what am i suppose to do then when i fell like i am going to faint upright? if i am fainting when I am allready down?? geez this really *****! and si getting old real fast thanks ernie!

Hi ernie and morgan.. and anybody else who might be able to chime in on this... But I am wondering.. has a dco given an indication what might be casuing you paralysis during syncope? and how long does your paralysis typically last? I know that the past few paralysis invilved syncope's that i have had last an hour or more... last one lasted from start to finsih roughly an 1 1/2 hrs.. and i must say that my muscles and body hurt so badly! my wrists and ankles feel as though I have sprained them or something.. PT thinks that they fele that way.. b/c my arms and legs were contorted for so long.. and the twitching during the paralysis..really uh..put some stress on things.. I am ahving little paralysis episodes (espcially yesterday) that last a few minutes then go away.. and i am so tired tht I fall right back to sleep and that vicious cycle went on for about 8-9 hours... just looking for some input I guess.. and reassurance that I'm not loosing my mind...I go see my doc this afternoon.. hoping that I can get somehwere with that.. Oh yes.. my paralysis epsiodes are happening while I am allready laying down.. one i had befor would happen after standing then dropping tot he floor.. and then i would have paralysis.. now it hapening while laying down.. I just dont get it and it is so scary to be aware of what is happening to you.. and have not be able to talk or move.. and to be jumping around like a fish out of water.. amajorlyhurtindizzygirl

Hi folks I am having some issues like big time lately (the past week or so).. like last night for instance was a reall doozy.. My question is.. do any of you ever dream that you are passing out in your dreams? (very vivid dreams by the way..) and that one you wake up you are on the verge or are having a syncope spell.. even though you are laying down allready? I had this happen several time yesterday.. and each time my entire body would go numb.. and get that funny feeling in it.. and I wouldnt be able to move for a few minutes.. the onyl way I can think to describe the numb feeling in my body is it is a cross between smacking my funny bone ( only afrom head to toe) and feeling like my entire body is asleep..it is not a good feeling.. quite painfull actually.. and the usuall syncope feeling like rapid HR.. sob..dizziness.. ect. I am concerned about this.. as it only used to happen once in a while.. and now is happening ALL the time.. and with recent syncope events in the past week.. I just dont know...I have an app. to see my PCP this afternoon.. I feel that i am getting weaker in every sense of the word weaker.. and I cannnot hardly eat..or drink.. I try and force myself too.. but pain in the stomach is more then I can tolerate or bare at the present..and the weakness is apparent to the naked eye to other that know me and see how I am just slidding down hill.. I dont know what is happening to me but I do NOT like it! sorry guys but had to ask about the dream thing.. and have a mini vent!

Thanks!! big BIG relief for me !! thank god!

just wanted to update things.. I spoke with my nurse and she explained to me that they the doc is thinking that my diabetes is progressing to the next level so to speak.. despite diet changes..the home nurse came this morning and drew blood to check my sugars and also urine to check the level of sugar in my urine.. some times I dont know if I am feeling abd from pots or diabetes.. or both..kinda *****.. yucky!

HI!! I am so very glad that you had a half a day of being functional and feeling good!! that is great!! I know tht when I have a good day or good hours that i really charish them!! YIPPEE!! HUgs!

nina I am so very sorry that your app. got cancelled.. i know that you have been suffering terribly w/ a horrendous migraine..yuck.. i really hope that you can get some relief soon Nina

hi brideagainmorgan! that is fantastic! wow 25 yrs! that is along time!! god bless you both.. and enjoy your special day with your "HUBBY"!! heres to another wonderful 25 yrs to you both!!

hmmm thanks for posting this.. It is interesting...

Hi my normal body temp for me is like between 95.6-96.4.. if I am running at anyhting above these numbers. even at the normal body temp of 98.6..I am running a fever..

sorry for the confusion.. I DO allready have type 2 diabetes.. I'm thinking that maybe they are thinking that the diabetes is progressing.. i will get more detail when I see the doc in person.