dizzygirl

that is very cool about your dentist...is he taking new patients?? LOL

Ernie.. that is fantastic news!! I am so very happy for you!

Jennifer.. hi since I was about 12yrs old i becan having problems with my neck.. and swelling in the right side of my body.. no clue why.. but in 2001..the pain in my neck was so severe.. to make a long story short..I was 19.. and working 2 jobs.. about 70-80 hours a week.. and my jobs required me to do some lifting of patients.. well one day after working I went home early becasue the pain in my neck was becoming unbearable.. and went to sleep and woke up unable to get out of bed or move the right side of my body..well this set off some things.. I was unable to move my head or arm.. and intitally had though i really had yanked a muscle in my neck and shoulder..and just kept right on working.. all them hours.. well about 2 weeks after I woke up like that..It got mucj much worse..i went o see my doctor.. and she said that I wa susffering from whip lash..(even though I had not been in a car accident or anything).. and that had I not come when i did that i would have been left permantly paralyzed on my right side of my body.. in regards to my neck being bent at a weird angle.. and not being able to use my right arm.. so this set off 1 1/2 of physcial theraphy 3-4 times a week...and alot whole of pain and muscle relaxers..the PCP I had at the time said that the injuries I had when i was 12.. had resurfaced I guess.. and we later found out that I have a herinated disk. at my c5-c6 level.. and that right where the disk is herinated my spine is rotated.. and that there is alot of tissue and muscle damage to my neck..arm and shoulder.. and that it becomes in flammed..and in a sense mimicks a whip lash.. and that with the amount of hours that I worked.. fatigued my body.. so very badly.. anyways getting to my point..that was in Aug.2001 and in march 28th, 2002.. Pots hit me full force.. and i have not been the same since.. so yes i definatly feel that my neck injuries have something to do with my POTs.. I just really never realized to what exstent until recently..I dont think that it is the sole casue of my Pots.. but it crashed my body out so badly.. goodluck to you! oh yeah.. i find that a tenz unit.. really helps relieve some pain from the next.. in regards to muscles/tissue pain..

Hello folks.. hope that you all are feeling ok.. Well here is my question for you all today.. last night I woke up with terrible nightsweats.. and my skin was so very hot.. my normal body temp is like 95-96 degrees... and yesterday i felt feverish at the docs office.. and my temp was like 99.. so for me that alittle bit of a fever.. and then last night and today its running about 100.4.. but I dont feel like flu-y.. or anything.. but at about 6am my feet started to ache and hurt.. and turn lovely shades of purple and the pain started moving upwards into my ankles then up legs and so forth.. now I hurt from my neck/base of my head down down..it is a very deep kind of bone pain and I am still running a fever and am getting the chills too.. I get like this quite often.. but dont usually run a fever over along period of time... so that has me wondering if I have an infection or virus getting ready to jump a board..my PCP calling in an antibiotic for me too take... Z-pack.. but like I said I get the bone pain like this alot.. and wake up with the nightsweats and feeling feveerish..I have read that this (sweat/fever) can be a part of dysautonomia.. I got some of those rapid realease extra strength tylenol..they help alittle bit.. I am wondering if any of you have any ideas as far as the bone pain.. I have had this problems since I was about 11yrs old.. and no-one has been able to figure it out... I cant take like pain medications.. I am allerigic to alot of them.. or do not tolereate them well.. same with anti-inflammatory meds.. so any suggestion for pain relief would be greatly appreciated... thanks guys Linda

my My chrissy.. people can be so critical and judgemental.. it drives me nuts.. i am sorry for your unforutunate experience..but please never feel badly or guilty or anything about using a handicapped space..USE IT!! and it somebod glares at you. glare right back or smile at them whatever.. you know that you have a medical condition that requires some extra adjustments in order to do simple things like going to the store..

Oh yeah I also wanted to mention.. I took the lunesta tonight.. and fell asleep at about midnight and slept till 2;45am and woke up for a minute.. then fell back to sleep till 3:45... and when I woke up thenmy heart was pounding terribly.. and I was having back night sweats.. so I got up.. I am so relieved that I got atleast 4 hours sleep in a row!! and that horrible headache that i had been having.. from lack of sleep is gone... ALLRIGHT!!!!! YIPPPEE!! so there are some little improvements on my first night of Lunesta.. and the best of all is I dont have any of those wacky side effects.. and dont feel all dopey or loopy from it.. thank god!! allright folks have a wonderful day!

Hi all.. I had an MRI of my putuitary gland done like2-3-4yrs ago and that one was good.. so the diagnosis of POTs/dysautonomia was made.. however the most recent Mri showed "something". and that was done in July 2005... and I have not had luck with follow up on it.. I do definately have POTs/dysautonomia...and some other health issues.. some realted to pots.. some not.. Rita.. would verderbilt.. or Mayo be were I look into a reasearch patient? I think that that would be very interesting to have done.. and look into.. I was checked for diabetic autonomic neuropathy in May...but only my feet and lower legs were checked.. and that was normal.. so I guess the search will continue... and hopefully will come up with some answers.. I thank you all for you support and input.. you gave me a few things to think about ! dizzygirl

hi all.. thought i'd pop in and give you an update.. since my last post.. well i still have not slept..insomnia is the worst ever!! I am so white and pale it isnt even funny..even my lips are white.. SO.. iwent to the doc this morning.. and she wrote me ascript for Lunesta.. I am praying that it helps me sleep.. between such bad insomnia and the very high tachycardia.. and am just purely exhausted.. she also increased my propranolol to 80mg 3x's day.. and hopefully this will help with the tachy.. i go see the tummy doc. tomorrow...so hopefully i can address those issues too.. and get back on track.. goodnews.. I was able to schedule an appointment to see Dr. grubb for the beginning of october... they squeezed me in.. sherry said that they are stiilll trying to reschedule appointments from November of last yr.. I thank god that I was am able to get into see him..I have been waiting a yr and half or so.. my apps. keep getting rescheduled.. understandably so..with every Dr. grubb was going through himself.. But when she told me she could get me in in oct. I was near tears.. of relief.. i have been going down hill now for a few months.. and am at aloss of where to go next.. and a few cardio docs have stepped back from my care and treatment because they them selves have exhausted everything that they could do.. I am curious..I have had POTs to some degree my whole life.. but became severe 3 -4 yrs ago..and I have tried so many different med. therapy's and the usual stuff for treating pots.. and i havent really gotten all that better.. and have gone down hill quite quckly in the past couple of months.. I am wondering if there isnt something else going on.. other then the pots..what that is I dont know..i experience alot of neurological sysmptoms.. and some of my testing on EEg's and MRi's have comeback abnormal.. but the dcos that I have seen wont step outside the box so to speak.. and look at different avenues..once they rule out the normal things.. they stop.. and make me feel as though I am a mental case.. But all 3 EEg's that I have had done in the lasst 1 1/2 have come back that I have slowed brain functioning.. but they dont know why. i asked the doc.. if the fact that i loose total consiousness.. and the fact that during these times there is no oxygen going to the brain and what not.. if that could be casuing slowed brain functioning.. he actually was stumped at that question..and said that was out o his level of expetise.. what do you all think? and in July my MRi of my head.. the pituitary gland.. showed "something" on the gland.. but the doc who ordered the test.. never looked further into it.. infact stopped treating me 2 weeks later.. this doc was suppose to reorder the MRi..and speak with some nuerologist.. in hopes to get a better look at the gland.. and try and figure out what it is on there.. cyst.. that kind of thing.. I feel that..whatever this is on my pituitary gland may very well be akey into some of the problems that I am having.. and can explain alot.. what do you all think?? Am I far fetching here? Ok well I have had my mini rambling session...bye .. dizzygirl

Hi.. i have been on a ton!!!!!! of BB's in the past 3-4 yrs.. and I honestly dont remeber what ones they were.. a few made me very fatigued.. though..atenolol.. LA toperolol? (SP ? --i may have gotten the name totally wrong!!.. potsy moment! ) right now I am on propranolol.. it does not make me tired.. how ever after about afew months the dose does not work well for me and I have to increase it.. but all in all it works good.. Like I said I have been on many many BB's.. and had to change them because they didnt work.. or they stopped working.. sometimes you have to "tweak" the dosages.. in some cases the dose was too high.. and it slowed the old ticker down too much.. or it wasnt enough.. and didnt slow things down.. i would recommend starting at a small dose.. and work your way up.. if you dont tolerate the med. well then talk to the doc about it..and see what else you can try.. there are alot of BB's.. it just might take some time to findthe right one for you.. and the right dose.. good luck to you! HUGS! linda

Hooray for Melissa!! you go girl..!! I'm rooting for you.. have a wonderful first day!! tell us all about it later!! HUgs linda

Chrissy hi.. I too have some of the eye problems that you mentioned.. I get the blood shot eyes and around my eyelids turns pink.. and they get puffy.. and they actually look glassy.. one eye looks glassy and one eye looks well dull looking.. does that makes sense?? sounds crazy I know!! ( i have a "lazy" eye.. and the eye that looks dull".. when pots is acting up badly..my eye will be even more "lazy") anyways.. getting to my point.. you mentioned using eyedrops....have you tried the eye drops patanol? my eye doc prescribed them to me.. because of allergies.. and I could not wear my contacts.. it does help some.. as far as sinuses.. I have had sinus problems all my life.. I dont know if its a potsy thing.. but I know where you are coming from there too.. and for makeup.. i can not wear eye make up of any kind..kinda of *****.. its funny you brought this topic up.. I can relate to alot of what you said!! sorry I dont have alot of advoce though on what to do for it.. as i am still trying to figure that out for myself.. i find that during the day.. I usually stay out of the sunlight.. and keep my room dark.. my eyes are very light sensitive.. the cool wash cloth does help.. temporarily.. If I go out during the day.. even if it a cloudy day or the dead of winter.. i have to wear dark sunglasses.. because its too bright outside!! a freind bought me this really cooleye mask from walmart..it is filled with this gel stuff.. and you pop in in the refridgerator .. and it is nice and cool on the eyes.. it works alittle better then the wash cloth sometimes because it is cooler and stays cold longer.. they only cost a few buck.. allright Chrissy.. goood luck to you!! Linda

interesting topic... !!! I just want to add a me too.. on going to Outer sapce.. that would be so awesome!! and yes.. i will agree with steph's comment on the pool and walking on our hands.. my fellow POtsy friend and I often joke about how nice it would be to walk around on our hands...LOL

ariella.. good to see your name pop up.. sorry that you are having such a rough time though!! I will second Corina's question. are you using Mestinon?? it is used to treat myastenia gravis and pots too.. I dont have any advice on your test.. sorry.. i have never heard of it.. but I do hope that you start feeling better soon.. and that all goes well with your test.. hang in there ariella.. we are all here for you!! Linda

Emily you are such a sweetheart.. thank you for sponsoring the forum this year! I know that this forum has been a life line for me many times too.. ..and thank you Michelle for starting it all!!! you guys are the best!!

hi chrissy.. welcome to the forum!! KUDO"S to you on going to college!! Hooray for chrissy!

Well what has helped me the most is increasing my fluid and salt intake.. lots of gatorade compression hose BB-Propranolol.. prevacid(for GERD.. but seems to help with the nausea and chest pain that I et.. some of the chest pain is from POTS/tachy. and some of it is from GErD..) Mestinon.. 120mg 3x's day eating a healthier diet.. more veggies.. occasional IV's fluid..and oxygen.. WOW!! I feel really good after a treatment of O2 and fluid!

wareagle.hi... in october I checked in to getting life alert installed in my home.. and a social worker came to the house.. and I did not qualify for the service .. at least through this agency.. as I am young.. and Dysautonomia.. according to this person.. is not considered a life threatening condition.. mind you at the time I was lving alone.. and had no body around to support me.. and was passsing out so much.. and for undetermined amounts of time.. HELLO!! but I never thought of ADT or something.. I will have to look into that! and no you did not over step my boundaries..its all good! dizzygirl

Hi Poohbear.. welcome back!! We missed you! WOw I am so sorry to hear about the difficult time that you are having.. and I really hope that things get settled for you.. and straightened out.. My goodness it is horrible moving once.. let alone haivng to move twice in 2 months! I feel for you! take care pooh..

Hi all.. I was on ambien for 2 yrs.. and at first it worked very well.. in regards to sleeping.. but then after a while it stopped working.. so I stopped taking it.. and then insomnia just has gotten SO bad that i needed something to help me sleep.. but I must say that I am going to use much much more caution when it comes to taking something for sleep.. or any med for that matter.. Em.. I really hope that you get some much needed sleep tonight...hope you have "sweet dreams"

Hi early on in my pots before i knew.. what was wrong (pre-diagnosis) I had 4 9-1-1.. calls over the spand of 7 months..

OH NO!! you had the remeron Mightmare experience too!! I am so sorry about that..and yes it was very scary.. I thougt I was going to meet my creator..I really did... I will never take that again.. I am not sleeping wither Em.. I was up till almost 8am this morning.. and only slept about 2-3 hours... and its been like this for weeks and weeks now! IWANNA SLEEP!!

hi sally ann.. i have never had bellspalsey.. but i have pots.. and my mom and i are pretty sure that she has pots as well..or some type of dysautonomia.. I feel really bad for my mom..she does not have health insurance to go get checked over.. gotta love those employers who dont offer insurance to full time employees! freakin' cheapskates! sorry i rambled a bit there..but yes..we both have dysautonomia..really makes me wonder about that genetic componet.. if there is a gentetic link in some families..I will try and find some info on it..

hi sally ann.. i know what you mean about hubby's and boyfriends!! My boyfriend doesnt even try to understand.. acording to him... it is imposible for aperson to feel sick so often... that is such a dumb thing to say.. But i am feeling "better" tonight then i did earliier.. thank god!!

Oh yeah i forgot to mention.. I am not taking that crazy med.. remeron anymore.. I took it that first night.. and I'll be darned if i am going to take it again.. I am back to insomnia once again.. but I dont ever want to feel like that again...! scary!

ME TOO METOO!!!!!!!!! Yes Julia!! I have terribly problmes going out side or even outside of my little AC bedroom...I have turned into a hermit crab.. i do not leave the house hardly ever.. not with this heat..and I Love to shop!! If I do go out its lat in the evening or like 12 at night..(we have a super walmart down the road) WAHOO!! Walmart is the highlight of my shoping experience for the week.. and it is to buy gatorade and water!! LOL and...yes Persephone.. I find that i have the same problem in the winter.. in tolerance to extreme temps... I like really close to the LAKE Erie.. so.. I live in my AC room.. my boyfriend jokes around and tells me that i keep it so cold in here that he needs to keep a snow shovel out side the bedrrom door.. to dig his way through the room!! LOL.. funny I dont think its all that cold in here... ..HAHAHAHA! Oh tracy.. I want to add another me too.. to your #2 comment.. i find that i have that problme too..even if it is just alittle hot outside.. it ends me into a tizzy.. my BF.. like to point out that when ever we go out.. that I make a bee------line to the bathroom... Hey I cant help it!! and yes I often feel better after wards..untill I am back in the heat again.. or get over heated from standing too long... dizzygirl..