dizzygirl

melissa hi I did some internet searching too.. and I ddint really see a difference in the 2 either..but was wondering if anybody had any idea;s...I have had symptoms of diabetes now for about 4 yrs.. but did not get diagnosed w/ diabetes until march of 2005.. and i dont handle the meds well for diabetes..type 2 diabetes..as symptoms of diabetes can over lap with symptoms of POTS as well.. (symptoms overlap in some area's for both illnesses) SO I am not sure what they mean.. No I do not have an endo doc.. i have searched all of the county.. and there is not an endo that excepts my insurance..believe me i have looked.. the one and only endo who was here I waited allmost ayr to get into see him.. and when it came time for my appointment and I went downtown to see him.. when i go there they told me that they no longer offer an endo clinic! and that that doc was no longer there.. I'm like you gotta be kidding! So I'm still looking for an endo.. :)

ok having a potsy moment and did not explain myself well.. will post what Imean later..

Corina..its good to see you on here!! so sorry that you arent feeling well.. and had cold to boot! that really is not cool .. I hope that things get moving for you w/rehab.. hang in there dear! hugs dizzygirl

vanessa I am so glad that things are finally moving for you with vandy!! I hope that things move wuickly for you.. and that you get some answers about things.. and find amed that might help you.. HUGs

Hi I have taken klonopin in the past.. and I found it to be helpful.. i too it before bed.. as it made me incredibly sleepy.. and it helped me sleep somewhat better.. I had to go off of it this past spring I think.. but I cant at the moment recall why i had too.. Oh I rememebr.. I was on a combo of trazadone and clonidine as well as ambien to take at bed time.. and the trazadone doseage was quite high... as my cardio told me once.. "enough to knock out ahorse out".. well my syncope got worse..and we ended up stopping all of the meds above... with a combo of the meds.. my Bp was getting to low.. not b/c of klonopin.. but b/c of the trazadone... and once the trazadone was stopped the syncope didnt occur as often..

I seen a thing on the nightly news a few months back (it might have been a fews wks.. my snese of time is really messed up).. well anyways they are making pill bottles that like have reminder alarm thing on them.. I think that you set the times you take it.. I believe that the bottles reminder things run about $35 bucks.. so they arent cheap... and you can only use them for one kinda of pill.. so I'm not sure how feisable that would be.. but thought I would mention it.. as I also will forget if I have taken a pill too... and have to many of them to try and do a sheet.. to those pill boxes.. So what I do do is.. if I take the pill I will turn my bottle upside down.. so that I know that I took them.. kinda goofy.. but whatever works right?

Julie that is sweet of your nephew to get you a worry stone!! Children are incredibly intuitive and I think have more sense and compassion in there small bodies then most adults do! And yes I most certainly believe in miracles and the power of prayer.. so things just cant be explained any other way.. I usually am very calm and try to keep a positive attitude about everything in general.. you know that.. but I dont know this past week has been so hard in so many ways! and things symptoms wise are honestly really scarring me.. there are so many diferent things going on and nobody know why!! I sometimes think that it cant all be the POTS.. but then think well it wouldnt surprise me I guess if it was.. I just have been discouraged these past few days.. and this is the one place that I can vent my emotions and what not.. and not be made to feel like I am a complete head case... my sugar levels havent been to terribly bad lately... so.. I dont know what casued such a scary syncope epsiode.... Looks like I will have to be making some phone calls tomorrow... thanks all for the never ending support!! HUGS

Hi..I was on Inderal (actually the generic form Propranolol).. and I off and on did have chest pain on occasion after taking the med.. or sometime before it was time TOO take the med.. But that i think was my bodys way of reminding me that I need to take it.. Um I was on many different doseages of Inderal.. the highest dose that I was on was 90mg 4 times a day..(had also been on 120mg 3x's day as well..) Propranolol (inderal) worked the best for in regards in Beta blockers.. um the side-effects were not bad for me..(with the exception of occasion chest pain.. and a funny feeling in my chest..and it made me tired some days..) but generally speaking Propranolol worked allright.. I hope that his chest pains subside.. and that he can tolerate Inderal.. as for me personally...(it took over 3yrs to find a beta blocker that works half ways decent for me.. and somewhat controled tachycardia..I know take the stronger form of Inderol..it kerlone (betaxolol).. its a more potent form..newer form and works longer.. so I only take it 2 times days instead of 4 times a day.. and 4 -10mg tabs of betaxolol is about equivalent to 90mg of Inderal 4 times day.. but i really hope that he feels better

Yes the home nurse who comes to the house called the ER and informed them that I was coming in and that I needed IV's.. part of the problem yesterday was that. it was an oncall PCP that they got on the phone they second time tha they paged my regular PCP.. and since this on call PCP did not even know what POTS was.. he wouldnt just directly admitt me to the hospital.. even though earlier.. my regular PCP wanted me admitted after an assessment was done here at home.. thye got htings cleared for me to recieve fluids at home.. but the agency did not have them available and would have to wait to get supplies.. and the nurse who came to the house.. said tht it would be after midnight or later (lastnight) before they would even get things pulled together.. and get to my house to set me up.. so that ultinately is why I even went to the ER.. I knew that i needed fluids.. So tomorrow I will deal w/ my normal PCP and cardio's and hopefully get things looked into.. But for tonight.. I needed to vent and talk to ppl who get it.. as I sometimes think I dont know how much worse tis pots can get.. then it does get worse.. and its like geez! this really bites

Hi I did go to the ER yesterday evening.. and the ER staff was horrible to me..I had to argue with them to give me IV fluids.. the ER doc was a real jack ***!.. so very rude and arrogant and pompus! as were the nursing staff... the only reason I went to the ER is b/c the on cal nurse who came to check me over.. made me go... she said that she wanted me to be admitted to the hospital and that that is what the doc wanted to.. (the on call doc thru PCP office).. b/c of dehydration again! and the fact that I had new symptoms.. and still am having stinging in some spots.. and so much trouble.. I really argued going with her.. as the ER they are just horrible.. and I have had such bad experiences with them... So I really needed IV fluid..so Iwent..and they gave me a hard time about givng me fluid and wanted to know why I couldnt just drink fluid to get rehydrated.. and I told him that no matter how much fluid that I drink its not going to do the trick...the ER doc and nurses had absolutely no clue of what POTS/dysautonomia was.. (no big surprise there!) my Bp did a nose dive from being 130/89 and dropped to 95/51 upon sitting up.. big significant drop if you ask me.. and they ddint even run the full bag of fluid into me.. there like your fine you can go home now.. I was like Ok. my BP droping like that.. and the fact that I still have stinging in my face /hand and shoulder.. and my arm keeps going totally numb... and to top it all off..I had an allergic reaction to the tape and EKG leads!.. and broke out in a horrible rash.. and my skin turned so beat red and got so hot.. from my breast up.. that I looked like I had sunburn... But you know apparently its fine to be like.. if you go to this particular ER!! So here it is sunday afternoon.. I'm still dehydrated..and having numbness and stinging. and all this potsy stuff going on... the Er doc was suppose to page my cardio.. and he never did.. and he never ever investigated my new symptoms.. not that I expect miracles or anything from an ER.. but atleast some reassurances that i wasnt having seizures or a stroke or something would be nice to have checked out. i mena hello!! common sense here dont ya think? GRRRRRRRRRRRRRRRRRRRRRRRRRRR!!!!!!! I am just very annoyed.. and mad at myself that i even went to the ER.( as i know that is the kind of treatment that I am going toget..) so tomoorw I guess i call Dr. grubb and get there thoughts on the things...

hi I can totally realte too to family ppl in general not getting it.. Why just this morning my boyfreind told me that my syncope can be CONTROLLED if I just told myself that I wasnt gong to pass out.. and focused on something else.. I'm like UH NO!!!!!!!!!!!!! My response was well Vin if that is true the I could cure all of my potsy friend who are so sick and pass out when ever they stand or do or dont exert themselves! lots of comments like well I feel like I am going to pass out once in a while or I get dizzy.. and it doesnt make me sick.. I told him that I dont need comments from the peanut gallery.. I dont have any suggestion for making people get it.. but wanted you to know that I understand.. and wish there were something that I could do to make pple understand

Hi my potay pals.. for the past couple of days I have been feeling worse then ususal..(yuck)..have been down for a few days now.. well yesterday.I felt abosultly rotten.. and my nurse came and my HR was beating very irregular (or irratic I should say..) and it had been beating like that for about 7 hours.. going from beaing non existent hr beat to a very fast one just like that.. the nurse is like wow.. your heart is doing some crazy stuff.. I'm like I know.. now can you besure to tell the doc that! sometimes I think she wonders about my weird hr issues.. as it doesnt always act up in the office! go figure right.. so anyways I spent the day like down.. and couldnt sleep a wink all day.. which I desperatly needed.. darn insomnia is kicking my rear!.. so Its was like after 4am.. and I was laying here trying to sleep.. and all ofa sudden I felt like there were bees stinging me insdie the roof of my mouth.. and then it spread from the roof of my mouth thru my entire body in short order.. and that stinging bee feeeling got more and more intense in a spand of a few seconds.. and then this very nasty not good warm feeling swept thru my entire body.. and the tachy hit me full force as well and the dizziness..and nauseouness(SP??) and I felt my self grow very panicky.. and I pased out.. and the sad thing was I was allready laying down!! Not really sure how long I was out.. I'm guessing a while.. b/c before that syncope bee stinging started it I had looked at the clock and it said 4:43am.. and I was thinking god I wish I could fall asleep!.. and the whole event leading to the syncope was quick..I think...and the next time I was able to look at a clock.. it was after 6am.. eww.. and OMG! But anyways after I came too.. I still had the stinging in my entire body though not as severe.. and my muscles burned very bad.. I dont know how to describe the burning.. other then burning.. and they were (my muscles) were twitching and moving.. and I wanted to get up and get my boyfriend.. but I was having a not being able to move.. paralyse with the syncope.. I was aware of what was going on w/ me.. but I could not speak or move.... and that alone just really scares me to death.. I hate it when I get the paralyse..i really do I mean to be aware of what is going on.. but have noway to call or get help..as you lay there twitching.. and have your heart beating out of your chest and all the things happening to your body.. the horrific burning in the muscles.. my god.. I dont know what the heck is happening to me.. but I'm sick of it..I hate this pots.. I did finally fall asleep for about 6 hours after I was able to move and what not..and I was so thirsty.. right when the stinging started.. my mouth got very dry.. and my togue felt like uh very dry.. and i t was stuck to the roof of my mouth...I have tried to drink water and juice.. but i feel so pukey.. its not going well.. i fell pretty bad today as well..but needed to talk about this syncope.. as it reall just scares the heebie jebbies out of me... my muscles hurt very bad today..thru my whole body... and I have the usualy potsy things going on lonly intensify it by 1000..I still have some bee stinging going on in my face hand and neck/shoulder blade.. eww.. only now it feels cold inside the tissue/muscles.. geez that sounds nutty.. eww..lord help me!

Hi folks.. I got my labs results back from my Ohio trip. it showed that my cortisol level was low and that my dopamine levels are slightly elevated... Bev was going to pass them on to Dr. grubb for "the next step" kinda thing and to see what he wants to do..leave it or persue it.. I was just wondering if anybody had any thoughts on what this means.. and what these "chemicals/hormones exactly do in the body.. and all that good stuff.. any input would be greatly appreciated!

That is wonderful!! I am happy for you!!

melissa I totally understand your desperation and frustration..I feel for you.. I really do.. i too wish that there were more "experts" on dysautonomia. shoot even more regular doc and health care professional that understadn POTS?dysautonomia would be a plus! I wish I had more of a suggestion for you!! hang in there.. I know easier said then done.. HUGS

Melissa Hi.. Um.. I might be wrong here.. but I dont think that they have a cancellation list.. due to the fact that so many people want to see Dr. grubb.. Um.. I think that the only way that you could get in sooner is if you scheduled to see Dr.G's NP Bev.. and if not that.. I know april seems like a long time off.. But new patients (as well as current ones) generally wait on the average of 7-8 months for an appointment.. Do you have a doctor other then your PCP who treats you? cardio or anyhting? if so they could call and speak with Dr. grubb about treatment that you could try while waiting to see him... Dr. grubb has been good about talking to my docs for me about treatment and such.. it worth a try.. hang in there

Roselover I am so very sorry that provigil ddint help you and has made you so sick.. I hope that cymbalta helps you. I tak cymbalta.. and I do notice a difference on it.. hope that it helps you! hang in there my dear gentle HUGS

Julie i am so sorry that you are feeling so bad.. I'm sending you some virtual HUGS! and I hope that all goes well with your brother.. I wil continue to pray for you and your family.. Pls talk to dr. g about everything.. I think that he would want to know.. maybe he can offer or point youin some direction for help.. I dont beleive that he would want you to be suffering so .. hang in there and take it easy Luv and hugs linda

Fun topic!! HI!! My name is Linda.. I am 23 yrs old. and I live in Pennsylvania in the USA.. I have had POTS pretty much my entire life.. and finally got diagnosed in 2002.. I am having a very rough time with it.. but am still trying to keep a positive vibe on things... before I became severly sick w/POTS. I spoke out against domestic violence and childabuse and went into the local highschools and colleges speaking as survivior w/ the local agency(s) who were in charge of public awareness.. about these epidemics ..with the hope of atleast helping one person.. if not more.. and education is the key!! It was my goal before becoming sick to go thru nursing school.. and to also obtain my degree in Social work. I want to be a socialworking Nurse!! and I'd be darn good at it to!! I primarily want to work with the preemie babies in neonatal or to work in labor and delivery.. and if not that with the elder persons. From 16-20 I worked in the health care field as an home health aide and a CNA.. Iprimarily worked with alzheimer/dementia patients.. in the nursing home..I really loved what I was doing. I enjoyed working with the elderly. I also worked in an ICF(intermediate care facility) facilty for the mentally/physically challenged.. and truly loved my job.. though very Uh "hard work" at times.. I found pleasure in being able to brighten someones day weather to give them a hug.. sit with them and talk and listen..or just hold there hand and bring a smile to there faces.. during a rather bleak situation.. I had a favorite patient w/ dementia who would yell out lottery number as well as Bingo numbers non stop!! she'd yell B 10 at the top of her lungs.. then proceed to tell us all at the Nursing home that took care of her every day.. that she "HIT the JACKPOT" and won the lotto and was taking us all to Florida to live with her. so that we would have to work anymore!!" I really miss her! and every now and then I will still hear her yelling out LOTTO LOTTO LOTTO! I WON THE BIG ONE!! Funny sint it how one person can bring so much humor and joy into a situation! had to share one of my favorite resident stories with you all!! It is my hope that one day I can complete nursing school and schooling to be a social worker.. and truly do what I lUV to do.. take care of people!!

hey thanks guys!! Perse-- yes and good shower or bath and being clean is such a treat!! Who knew that bathing would one day turn into such a luxury!! LOL!!

yeah i have found my self getting tired of gatorade as well.. with in the last few weeks.. I think it is more the level of sugar in it that bothers me more the the taste.. I pretty much have gone to drinming water. when I can tolerate that.. I have tried the propel water.. and I just can't do the flavored water of any kind.. YUCKY!--it grosses me out If it is the sugar in gatorade that is giving you a a problem.. they also make a powder form of gatorade.. and you make the strength to your own liking.. that runs about 3-4 $ and you get get in at walmart or anywhere really..(grocery stores..) I also agre that the blue flavored poweraide (for me anyways) is better then gatorade... and is about all that I can handle in the gatorade dept.

Yeah!! I'm so happy for you!! I really hope that Procrit offers you some help!!

Hi I thought that that i would share with you that i am finally gettin some much needed home health care services!! I feel like this has been a long time coming.. in regards to the fact that I have been deteriorating drastically over the last yr or so...dr. kept saying that I am right on that fine line of being eleigbnle for services.. and I guess i finally crossed the line into being able to now recieve help.. Kinda pathedic .... But anyways.. a nurse,PT,OT,aide,social worker and and speech thereapist will be coming to work with me.. speech thereapy is so that they can work with me on my swallowing.. as i am having difficulty swallowing..(choking.. and food sticking--lump in my throat.. YUCKY) so hopefully they will be able to give me some pointers to let the food go dwon.. then it will be a matter of it staying down , and uh in!! an aide will come 3 times a week. to help with the whole showering thing.. so that maybe i can get a shower every other day! wahoo!! though I am not that comfortable with having to have help showering.. I agreed to hav an adie present in the event that i passout --get sick or do need some help..(ie--hair brushing.. boyfreind ahs been doing the brushing and braiding.. god love him) I am so greatful for the help.. as I have been at my wits end about things.. and I am hoping that It will take some the stress of my relationship with the boyfriend if.. some other people are hear to help.. and the burdon doesnt soley lay on him.. b/c I feel very bad about that.. and it casues some big time stress and problems for us.. they are also )social worker) going to try and figure out a plan of action so to speak for me for long term care.. and to find some housing that will meet my needs.. I know my PCP has mentioned nursing home care and or assisted lving care.. assisted lving though..insurance does not pay for it.. and ti starts out at roughly 2000$ month for very basic care. and as far as nursing home care.. she said that it would drive me nuts.. and that insurance wont pay for it.. until I am to the point of really really neding it... that and I will be DA**ed if I am going to go live in anursing home at the age fo 23! (these options where entertained due to the fact taht I will be living alone int he near future.. and I have no family around to help..and level of functioning is close to non exsistant.. and freinds are scattered along the east coast!!.. though good about checking on me via phone.. not much that they can do long distance!) so at the ver least I need to be in a handicapped apartment.. then w/ home health care and some kinda of long term care..something will work out.. But I wanted to share with you guys that finally after having gone down hill so much in the last yr or so.. I finaly got some help.. I dont know weather to be relieved or to cry.. ro both.. relieved that I finally am getting some help at HOME! and the urge to cry b/c I am at the point where insurance is paying for services now.. and that I need the services.. Kinda bittersweet so to speak.. I have mixed emotions

wow I didnt know you had to tip either!! wow thay must think that I am very cheap!!

hey that is great!! I know a few weeks ago I got my hair cut..(after about a yr!) and I love it!! I was so very happy with the haircut and style!! its amazing how a new hairstyle boost the self esteem isnt it!??