dizzygirl

lauren.. hang in there.. so glad that you got into vandy!! really hope tha they can help ya Dizz

well I get the "funny"fuzzy" cant quite explain the feeling in my face especially and in the lips too.. no ryme or reason or any clue what its from or what is casuing it.. I also get that feeling of electricity just running thru my head and especially my arms.. its a very messed up feeling.. and is hard to explain.. to the outside world!.. I get the feeling lik daily.. and it does driveme batty!.. and then I get it more severly during adrenaline surges.. sorry i cant be of more help.. just wanted you to know that you arent alone!

yes I also though of PMDD.. theya re finding that women can have this. instead of the regular old PMS.. whcih is bad enough!.. but if your having anger outburst.. during PMS time.. and feeling level w/ emotions at non-PMS times.. its worth looking into..talk to your Ob/gyn..I am considering talking to my ob/gyn...i have a problem before my period w/ anger ....well rages would be a more likely phrase o use....I know that a while back that I saw an advertisment on TV about this.. and thought that it sounded alot like me!! oh and I'm sure that youalready know this.. but your POTS can tend to get worse around PMS-period time.. b/c they are hormonal changes going and stuff like that.. I know that for me.. I get much much more symptomatic during this time.. and tht I pass out more during this time of the month too.. Hope I didnt offend you by mentioning the PMDD....

Belinda--just wanted to wish you well w/ your procedure on friday.. I hope that all goes well for you!! BIG HUGS to you!

LInda I had a very bad reaction to remeron... it was downright scary.. you can probably find my post on.. somewhere here in a search..I was given remeron to help me sleep.. But everybody reacts differently to medications.. so you might actually react well to it and maybe it will help you.. If you take the remeron.. I would recommend starting out at the smallest dose possible.. then if the pill can be cut in half or something.. cut it in half and work yourself up to a normal level.. they automatically started me on 30mg at bedtime..

OH LING!!! alittle girl! that is fabulous news!! CONgrats!!

Hi.. when I get the nasty surges.. dr. grubb said its Ok (for me) to take an extra betaxolol (which is a stronger newer form fo propranolol)... and my clonidine was upped as well.. so when its bad I pop an extra pill.. and lay down in a dark quiet room... till it passes.. or atleast lightens up...

Roselover~ I too had a great appointment with dr. grubb last week!.. a few months back he gave me the med provigil.. to help with my severe/debilitating fatigue...right now I am waiting for my recent illness to get rhu my system befoer I start taking it... hopefully it will prove to be helpfull for the both of us!!! glad things went well for you dear!!

yes I also have a horrid time w/ fluorescent lights.. they makes me feel weird for one.. and make my vision screwy...I get very symptomatic in stores with these kinda lights... walmart... Hmmmm.. we donot go there during the day anymore.. as its to crowded.. and hot.. and it makes me feel potsy as well as irritated! So we go at night.. now (open 24hr.).. and I use the powerchair... and I usually have about a 20 minutes limit before I get potsy.. so we are in and out....and the lines are generally shorter....if we stay longer then that I get symptomatic.. and extremely exhausted.. and pain levels go way up! so that is like my one outing for the week!! pathedic!! Julie hope that you feel better!

.. I hope that you are feeling better and that you made it home safely!

wow. it is amazing to me that you still work.. considering how nasty your pots is!! (i read you web page.. god bless you girl!).. Major Kudos for you.. wow..good luck and hope that you feel better soon.. be careful driving tooo.. LOL about holding down your own bed..LOL.. shoot.. some nights I try and lay down.. and I kinda end up doing a body slam into the bed..LOL my boyfriend is always like what is wrong w/ you!.. hey cant help it.. I get excited to see my bed! knowing that I can sleep and not feel like horrible b/c I sleep..its relief for me!!

LOL.. I guess so! we have tremendous strength..willpower and determination..and all other things that i cant think of right now that somehow keep us going..

Hi Julie.. I just wanted to ad that I too get the immediate and the delayed reactions to stress wheather it be everysay stressors or extreme prolonged stressors... I find that going into a dark quiet room.. andlayin down will sometimes help.. though not always.. also if a person is exsposed to extreme stress over time.. and regardless weaher this person has pots or not.. it will effect them eventually in some way... we unfortunately have the burdon of having very senstive systems.. I wish I were closer.. i would give ya a hug!! hang in there Julie! BIG CYBER HUGS

I am sorry that you arent feeling well. and hope that you feel better soon!! I too agree that G-d doesnt give us more then we can handle... but what about what we can tolerate!! LOL...

I think that a dog... even if its not a serivce dog is a good idea for people who are sick.. b/c animals can sense before we can that.. that we are not well.. they sense it... I know my cat.. gets very very clingy when i am moderately to severely(cant move) sympotmatic.. and she will stay with me.. once when I passed out on the kitchen floor.. and was having paralyse during my syncope.. couldnt move or talk.. and the cat (Zena) meowed in my face and was licking my cheeck till I was able to crawl to the couch... though I have thought about getting a dog.. I also thought.. how would i care for the dog when I cant get up for days at a time? what if she/he had to go to the bathroom and I couldnt let him/her out or walk the dog? I say this only b/c I live/lived alone.. am alone most of the time.. and would be sole caretaker for the dog or any animal.. but i agree that a service dog would be helpful for POTSY people..

well the one good thing that did come out of being eval. is that both docs agreed that I have no mental health disorder..(which I allready knew!!!) both mental health docs...agreed I mean.. But yes I do feel better.. and I am so sorry that so many of us have had to deal with being termed "nutty" or mentally ill".. and that instead of getting proper medical treatment.. we got the boot to the psych unit!.. its just so sad.. and infuriating! maybe sometime down the road.. society and the medical communtiy will better understand not only dysautonomia.. but all the other illness that are not fully understood or accepted .... But atleast during my hospital stay I did get pumped up full of IV fluids.. which is what my PCP wanted.. b/c I couldnt get rehydrated on my own.. despite how much I was drinking.. HUGs to you all!

Hi I can relate to the sever nausea.. as I just had some bad bouts with it this past week! ouldnt eat or reallt even tolerate drinking fluids for days! UGH!! and tis was with taking compazine (sp?) every 6 hours..then it went away as suddenly as it came on.... but yeah it goes along with this lovely POTs that we have.. what others said is good.. I have the nausea ranging to mild to quite severe allmost daily.. it *****...

apparently not julie!! its just plain ignorance... well it was great to sleep in my own bed last night.. I had the best night sleep!! WOW!! I slept like 10 hours straight!! didnt wake up not once.. during that 10 hours..sweet relief! a great wonder fantastic nights sleep really does do wonders!!! No dizziness when I sit up today!! YIPPEE!! I am on the mend still.. but do feel better then a few days ago.. hugs to you all

Hi thanks guys... No it wasnt my regualr PCP who ordered the psych stuff.. my regualr PCP is very understanding of my POTS.. and she does try and make things easier for me if she can... I dont know why the doc just didnt ask me why I was on cymbalta.. I would have told him the same thing I told everybody else!! Hello!! Nope that would be to easy...I am though once i am feeling more energetic.. going to put something together including med history as well as doc and stuff like that.. and see if i cant get some of my docs to write some VERIFYING chroinc illnesses and such..(POTS~~ect..) so once again thanks guys for a the support! I always know that I can count on you all! I am going to bed now..as I am feeling kinda pooped out...ahhhhhhhh! i get to sleep in my own bed tonight!! YIPPEE!!!!!!!! with my own blankets and pillows.. WAHOOO! HUGS

hmm.. good topic.. my mom told me about tis show she saw on animal planet.. about t is women who had seizures.. that the dog could sense then coming even before the women could sense them.. pretty mazing.. dont remerb the whole story only that the dog some how saved this women life.. my mom wants me to look into getting one of these dogs.. but dont quite know where to lookinto getting one.. melisssa if you find the links let us know!

hi guys.. wanted to tel you real quick..i feel that my app. w/ dr.g was very helpful.. he answered alot of my q's.. and gave some helpful advice.. he gave me a script for a new med called LYRICA.. he said that it is being used to treat patients with deep bone pain.. and is hoping that it will help me.. that it is a new drug.. and he hastnr eally prescibed it to patients b/c he hasnt had the need too...but that they side effect are supose to be low.. we donot know what is casuing such wicked bone pain.. but are hoping that this new durg will work. he also upped my clonidine at bedtime.. to help with those darn surges! as it does help ( as long as i dont have streph throat!!) lets see.. oh he also wrote me a thing out so that PT can come to my home.. as I cant handle leaving the house much these days..he is also running labs to check my noreephrine. ephenephrine, dopamine. and cortisol levels.. Not to sure why.. mentioned something about a test taht is done at vanderbilt.. but in order to ahve this test done at vandy.. ( I do not know what the test is..) that my above levels need to meet the requirements... I think that he ma have also ordered them b/c of the electrical feling that I get running thru me... alot was discussed....it over all was a good app. and I feel that I got some q's answered or are atleast trying to get some things answered...

hello my potsy pals... as i'm sure you read in prior posts..I went and seen Dr. grubb at the beginning of the week.. ( I will post more on that on a separate post.. as I dont want this one to be a mile long!) it went well.. well i really had a rough night tuesday going into wednesday morning. and made the dumb-bell decision to just take the bus and go home.. STUPID girl I am sometimes!!.. well i felt horrible.. and came home and tried to take it easy.. went to the doctor here at home on thursday... and I told her what happened the prior morning.. and she said that she wanted to admitt me to the hospital... so she did.. it turns out that I am was majorly dehydrated.. and had streph throat.. and some nasty earaches... and hadnt been able to eat since wednesday.. though i was drinking like crazy.. chugging on the water mostly.. I was so thirsty.. i coudlnt get enough to drink.. and I just felt horrible! so off to the hospital I went.. and they hooked me to a heart monitor and inserted an IV into my arm.. and kept doing orthostatic BP"S.. so they got the IV going and during the first night there I was so very thirsty.. I couodnt get enough to drink!..I drank 108 oz. of water in the first few hours of being there.. they kept trying to get me to eat.. but i couldnt really get down with food.. .. then i tried to sleep and couldnt.. to noisey (therewas alittle old lady acros the hall from me w/ a bed alarm.. a singing one at taht.. and it kept going off..)and I was ahving my lovely surges!.. and they kept me awake most of the night.. UGH I did not feel well.. so i finally fall sleep.. and low and behold in comes nurses and aides to give me meds and more IV fluids.. then the aides come in and its like 7 am.. and they want me to get up and get cleaned up.. and kept pestering me.. so I finally said "look I dont feel well right now.. and when I feel that I can stand with out passing out or puking my guts out I will get cleaned up".. Gotta love the people that dont understand pots! Well the doc comes in a while later.. and told me that I had streph throat.. and that that is most likely why I had suh a horribel syncope spell the other morning/night.. I'm like yeah that makes sense.. welll I conitnuely got worse thru the day..( major GI stuff) couldnt eat ro drink anything.. and was surging like crazy.. but they werent bad ones like the other night.. but enough for me to be uncomfortable by them.. Well now here is where things get really just messed up...OHHHHHHHHHH this makes me so mad!!..The admitting doc decided to call in a psychologist in for me to have psych eval done!! can you believe it! Oh it gets better!! a socail worker walks in my room and asks if she can talk to me.. I'm like for what? she said well we need to speak with you.. I asked her to come back later...she never did.. but then in walks a Psychologist and a medical student.. I'm like what the heck is going on here! He said the doc sent hime here to do a psych eval on me... I was floored and though here we go again! I was a DX and am visiably sick and they are questioning me! he said that he just wanted to talk to me and see how I was doing.. I'm like fine.. so I talked to them and I gave them a run down of POTS.. and my history.. and said you cancontact Dr. g if you have q's about what I'm saying.. at the end of that eval.. he said well.. sounds like you are doing allright.. i will tell the doc that.. I told them that I thought I was doing and handling things relatively well consdiering how things have been latley... and that i would eb worried if I werent alittle sad or depressed some days... I think that I am reactiving realtively normal!! then later that evening a psychiatrist comes in.. and says that she would like to talk to me about a possible psychiatric problem.. I'm like what!! I said are you kidding me!" I got kinda mad.. and then got defensive.. and said look.. I'm in no mood to be eval. again today.. I have dysautonomia.. and again.. i can give you dr. g's #,,as well as all the other docs that have dx'd me.." she is like wait aminute! so I stopped talking.. and she said I dont doubt that you have POTS... and I dont mean to upset you...but i have to talk to you about why you are on cymbalta.. so i told her that I was on it.b/c dr.g had put me on it to help w/ leg pain.. and to help with autonomic surges.. to calm down my ANS system.. and that is the ONLY reason that i am on it.. not for anysort of Psychological or psychiatric dx." she said ok.. and stated that an assumption was made that b/c cymbalta was on my med list taht i automatically had a "issues" a mental health problem" she apologized to me for the mistake.... then I kinda felt bad for the way I reacted.. as she was only doing her job as was the psychologist.. and I got defnesive.. b/ i have gone round and round since I was a tenager being dx with multiple meantal issues when in fact it was POTS! not a mental health issue!! that and I though of the night that I was ina hospital in NY.. and they sent me to a locked psych unit when I was extremely tachy.. and potsy.. (didnt knowit was pots then.. it was assumed then too that I had mental helath issues) that psychiatirst was the first to mention to me that I might have over active adrenal glands.. and she was upset that I was sent to the unit.. and sent me bak to the ER..) anyways the next dsay I was still feeling terribe.. and when I woke up.. my face and lips where numb and "fuzzy" feling.. I was thinking oh great what is wrong now!.. told the doc and he told me that it was "anxiety"..was biting my tongue not to say something rude... then as soon as he said that.. he apologized for the mix up w/ the psychiatrist... anxiety my but-t! So all in all... the onyl thing this hopital visit actually did for me was load me up on major amounts of fluids.. and anibiotics... and I was able to leave today b/c I could finally ate something!! YEAH!!.. though I must say that I feel pretty decent today.. I have alitle bit of color in my face today.. and my lips area normal looking pink instead of the hideaous looking pasty purple color that they have been for like weeks now!... and I'm not dizzy! and can sit up right for alittle bit!! yeah!! It only took 10 1/2 bags of IV fluid!! too get me to stop puking and stuff..god that is alot of fluids!!.... So i never thought that i would even end up in hospital with streph throat of al th crazythings.. and that I got so dehydrated!. few people said that some of the night sweats must have been fevers too... to get so dehydrated..So I am hopefull that 10 1/2 bags of fluid will give me a few good days to fully get over this infection.. and maybe be pots free for a few days?? that would be awesome!! again thnaks guys for the support!

Binky~~~~ thank you so much for posting for me!!! your a sweetheart!! Love ya girlfriend!! To all my potsy pals ( you too binky!) thank you so very much for your guys support and well wishes. it truly means alot to me.. and really gave me alift to see all of the responses.. and kind words... I will post on a new topic about my hospital stay and such.. and my visit w/ dr.grubb... thanks again guys!! Love and hugs right back to ya all!! Linda

hi gals ( anf guys) just wanted to pop in real quick and say thanks! Julie.. dear no it wasnt your driving!! LOL! you drive just fine.. carmen--Um.. ya know I have been tested multiple times for what they thought were seizures.. my eeg's are always coming back w/ slowed brain finctioning.. but no seizure activity... and for migraine's that is a real possiblty.. but I dont /didnt have a headach.. a neurologist told me over the summer that she thinks I was having convulsions.. due to my BP having been so low.. and stayed so low over a period of time.. that that is how my body reacted to the stress my body was under was to convulse.. who knows... a recent neuro.. thru a headache clinic just last month told me that my brain is very active.. menaing that.. wel that its active b/c I have so bad light/noise sensitivity 24/7.. and that b/c I have aura's with and with out migraines allmost daily.. I'm on meds for ti.. maybe I should call her office.. mom4cem.. yes I was by myself in the hotel room.. I.. it was scary.. and I honestly dont know how i made it back to my bed... part of the reason why i think I had a black out spell.. b/c sometimes after a syncope spell I have a hard time remebering things.. belinda and hmichel.. thank you!! hmichel.. i'm glad that you werent by yourself during that episode.. I still dont feel great.. down right horrid actually.. but hopefully will feel better soon.. I hope.. love and hugs

hey guys.. I am wondering where I might find some info on the (above) levels.. and how they affect pots.. I tried doing an internet search.. but.. didnt find what I was looking for...thanks guys