Stace915

really depends on the day, fatigue and dizziness are a tie for me

Hi, I will be there, I was thinking about seeing if my boss would let us use my office in NYC, but the problem is there really is no place to lay down and then I am not sure what we would do about food etc.. a restaurant seems like it would be easier. Do we have a preference what part of the city to do this is? There is a great place in Soho for brunch and they aren't too pricey.

aww I'm sorry you had a bad nite, I know exactly how you feel. I was supposed to go out for a friends bday tonite too, but I didn't feel good and I slept till 6pm! I had told her that I had to see how I felt b/c it was a long drive, and that on top of going to a bar was a lot for me to handle. When I called to tell her that I couldn't make it, she said she understood but sounded annoyed, I wanted to go more than anything but no one seems to realize when we don't feel good we can't function. Hope you enoyed your ices, sorry I don't have better advice, just wanted you to know that you're not alone!

I am starting to think we should all move to Antartica and live in Igloo's all year round!

Ugg the joys of summer being sick. Time to hibernate in the a/c! Yesterday I didn't even make it to work it was so hot and humid even with the a/c pumping in my apartment I was dizzy and exhausted. I am at work today and once again feel like a zombie. I am sititng very quietly at my desk listening to all my coworkers talk about there Memorial Day weekends and how they all went to the beach and BBQ's and out to bars at night... all the things I used to love and can no longer do. Eveyone still invites me out but I don't know if they are just trying to be nice or just don't understand that I can't do these things. I have my appt. on June 9th with the access-a-ride doctor (the van service to and from work), finding it very hard to stay positive lately

that is a huge accomplishment, good for you!!!

Hi yes I would be interested and like mom4cen said, my doctor is in Manhattan and once we have some details I could mention the idea to him!

I was taking salt pills for a while but they bothered by stomach, boullion, is very high in sodium, I drink it like tea, pretzels (some are higher than others) and believe it or not my doctor said pizza is also really high, but I don't know how much pizza you want to eat! LOL, I drink the boullion 2-3 times a day ,2 cubes at a time, its kinda weird but you get used to it

Hi Dawn, I have been on celexa for a little over a year, I started at 20mg and then went up to 40 mg. I take it for depression and b/c supposedly SSRI's help with dysautonomia. I have been lucky and haven't had any side effects, but I do know that generally people lose weight with this drug, not gain although b/c I am on florinef my weight hasn't changed. Good luck and I hope this helps a little!

Hi that has all been a major concern for me since I got sick as well and all my doctors say that they don't know if I would get worse or really what would happen if I went off all meds etc. Its definately hard and I also always wonder, did I do something wrong, why did this happen to me, but if it doesn't kill you it makes you stronger and you and all of us have survived thus far and I really do believe we are stronger than most people. Good luck and keep your head up!!

Thanks everyone, I am getting to go to the doctor now, missed 2 more days of work and just walked outside to attempt to the public transportation since I am not up to driving and its not even hot, I think high 60's and I thought I was going to collapse... so now I am waiting for a ride... I was supposed to go on a job interview on Friday but apparently once again I have to put my life on hold until I get out of this "hole". Thanks for everyones support, and if anyone has any other suggestions as far as meds- PLEASE let me know

I hate hate hate dyautonomia, I was finally adjusting to all my new "limitations" and crash, 47 hours sleep this weekend and I still feel like I got hit by a truck. I made it to work (barely), b/c I can't afford to lose a days pay.. so I am sitting at my desk like a zombie, waiting to speak to the doctor and keep popping salt pills... I hate this!!! Sorry I just needed to get that out!

I just tried going outside and walking to the store which is 2 blocks away and came home b/c I was so dizzy I didnt think I was going to make it. Last summer was my first summer with POTs and I was hoping that with all the meds I would be better this year. All I want to do is go walk along the boardwalk, I love the summer and miss the beach and just being outside so much!!!!!

Thanks!

my feet turn blue, like a crayon, its actually pretty scary looking. As for my legs, I have never measured them but I swell in my thighs, I can feel it, the more salt I have the worse it gets

I was doing something on the computer last nite and 1/2 paying attention to the tv, all the sudden I heard something about beat blockers, so I started listening. It was about something called Long QT syndrome. Has anyone heard of this better. It sounds sooo similar to dysautonomia but it can be deadly and it freaked me out. I just found the link from the show http://abcnews.go.com/Health/Healthology/story?id=729251 but I am wondering if anyone else has more info, or knows how they tell the difference between that and pots.

Hi, I took Reglan.. it helped with the nasceousness BUT it made me so tired that I could not function and only took it for a week!

the salt pills were making me nauseous so my doc told me to start using boullion cubes instead, just drop one in a cup of hot water and drink it that way

Last summer I was out of work most of the summer and in the hospital and now that its starting to get warm again and I am not feeling great the doctor is very concerned about me riding on the subway and buses to get to work... and since parking is too expensive and I can't always drive the doctor reccomended me taking Access-a-Ride which is basically a van for handicapped/elderly people that would drive me door-to-door. When he suggested it to me, I got really upset. I feel like now only people that I tell know that something is wrong with me, since it is an "invisible" illness. I know that many people with this condition are in wheelchairs and much worse than I am, but as terrible as it sounds I am really embarrassed by the idea of taking the "handicapped" van. However the doctor is right, I can barely standup on hot days, nevermind ride a hot train where I might get a seat. I guess this was just me venting, and wondering if anyone has experience with this.

I am on seasonale which you only get your period 4 times a year, I like it a lot b/c the week of my period I usually feel terribly "potsy" so now I only have to deal with that 4 times a year

Yea I also have the same problem I usually bring some baby carrots to work with yogurt or something and by the time I eat the carrots I end up not eatting anything else till I get home and then I will usually have 2 small things. Last time I ate a big meal I went right to lay down afterwards.

Yes POTS too about a year ago I was diagnosed, but the last few weeks have been really bad and I am not coping as well as I was!

Hey everyone I have tried looking a few times for a support group in NY and haven't found anything. Does anyone know of one? and if not would anyone else in the Queens, LI, NYC area be interested in trying to start one?? I have had a terrible 3 weeks and made it to work today but feel like I am going to die and I am trying to make it through the day b/c if I lose my job I lose my insurance, and I just feel like none of my friends or family really understand what I am going through, although they try and actually meeting some of you might be helpful. Let me know if anyone knows any groups or has a suggestion.

Hi I take Celexa which is the same as Lexapro and clonidine. I was a bit skeptical when the doctor told me about Clonidine b/c it is for people with high BP and mine is very very low but he said sometimes it has the reverse effect in treat POTS. He was concerned about my reaction so he actually put me in the hospital for 4 days to try it and monitor it. Unfortunately it lowered my pressue to 70/40 but the weird thing was after that I started to feel better, but it obviously wasn't safe for me to walk around that way! So now I take Celexa anf Florinef in the morning, and Florinef and Clondine before I go to bed, and it seems to help with my sleep and hot flashes etc... good luck just becareful its a strong drug!

I am on seasonale but I don't really think it helps symptoms, the only thing I would say is that I get very bad fatigue when I get my period so now I only get it 4 times a year... but it doesnt help control my episodes or anything.