shelby

I have been dealing with the same problems. I have seen a rhumotologist and done many tests with no positive outcome. Just experimental stuff going on with drugs and such. I am hoping someone has some ideas on what this could be...

Hi all, It has been a long time since I have been on here, but I am experiancing new symptoms. I feel like I am moving forward and sinking when I am sitting in my chair. I am not sure what this is. I have also been diagnoised with having inflamation on my rib cage causing chest pain. I am also completely nauseated. I have been diagnosed with Neurocardiogenic Syncope am I getting worse or whats going on?? Thanks, Shelby

I work at a hospital somedays doing registration so I was one of the few at the moment in our county and state to be able to recieve the H1N1...I recieved mine a couple weeks ago and I am doing great, no problems at all... I will keep you all posted if I experiance some difficulty, but so far all is well.

I was worried about the same things with the H1N1 that all of you are. There are two vaccines for the H1N1...the first is a nasal spray with a live virus. The second is the shot with the dead virus. It is reccomended that people who have health problems recieve the shot. I know that it is not avalible yet for most people, but I did get my H1N1 since I work one on one with patients at a hospital. I recieved this shot on Thursday of last week and have been feeling fine since. I was worried, but after reading the info provided before the shot and talking to the nurse who was giving it out, I decided it would be in my best interest to go ahead with it. I wish all a healthy flu season. Shelby

Sorry you are stuck st home. Today it is kinda cool here, but I am still staying inside just to rest up for next week. Another suggestion is a camel back which is a backpack that you can put water in. I suggest water and ice it will keep your back cool and you will have something cold to drink during your outing.

I have found those neck wraps cheaper at Walmart and they work about the same. They are in the sports isle with the golf stuff. You have to look around though because I have asked if they have them and they look at me all puzzled, I later find them on my own. Smartwater is another thing I have liked recently. It is nice because it has the electrolytes and no calories. They said on one web site to drink one half a glass of cold water every hour while awake to keep cooled down. Another said every twenty minutes so depends on how hot you are feeling and how hot it is at the time. Keep cool summer is upon us!! Anyone else want to share expenses and move to Alaska this summer?? LOL Shelby

I have had to use a wheelchair before and still have it just in case in my car all the time. I do feel like people are looking at me because I sometimes "walk" my wheelchair around. The world is not made for chairs though as shopping I always seem to knock down racks of clothes or other things. I also have a handicapped parking permit and have been given many glares by people when they see me use it...recently I was chewed out by an older lady because I "stole" the last handicapped parking spot at Walmart. She thought I looked fine so why did I have to use her spot. I try not to take looks and stares personally, but I understand it can be hard sometimes. I hope things get better. Shelby

I agree. I feel karma is there, but I dont believe I ever did anything this bad to deserve this one.

Things are interesting in the dating world. I am thinking that I am going to retire from dating, but then again dont I always tell myself that after a bad couple of dates? I had two bad ones this week alone and am ready to give up. I agree with bluesman about dating and feeling bad. I went out on Thursday and I wasn't feeling all that well, so as we have been out a few times I felt comfortable inviting him over to watch movies. So we were sitting there and I got a little nauseated and found myself running to the bathroom where I spent the next twenty minutes heaving in the bathroom, all the while he was in the living room having to listen to this because we hadn't started the movie and he didn't know how to run my DVD player. So needless to say he left and hasn't called back. The next night my date (different guy) came over to watch a movie, but when he went in to kiss me he turned his knee wrong and dislocated his knee cap. LOL at least I am not the one that broke in this case. He ended up leaving and hasn't called since, I called to check up on him, but I think he is embarassed about the situation and thus not planning on hearing back from that one either lol. So hope these fun stories at least made a couple of you chuckle. I need to write a book about bad dates. I seem to keep having them. New month, new lease on life!! Shelby

This is kinda funny for me because I get floaters and flashing lights as well. With the floaters it is sometimes really right there and sometiems I have to look for it, but always can find it. I asked my doc and he said my eyes were under stress because I wear contacts and glasses cause I am a blind chick without them. I guess I believed him, but not sure if he was 100% correct about it. Never looked it up I guess, as long as it eased my mind I was fine. The funny part is that they are so "right there" sometimes that I follow them with my eyes and my mom thought I was having a bad neurologiacl experiance once cause I was sitting mouth open with eyes freaking out going back and forth. So I know how you feel and wonder if this is another thing we are going to just have to live with??

I have the weight problems too. I gained about 115 lbs all togther, which is a whole person and very frustrating. For me it is the inability to do anything physical, and Florinef. I hate how I look and find that meeting and talking to new people can be difficult because they look at your outside before they look at your inside. I know I am beautiful in both senses, but it is hard to feel that way sometimes when others view you as overweight and consider you lazy. You almost want to wear a sign that says "Can't Workout, Sick!!" So I know how you feel and I hope that things get better. Shelby

Thanks all for your great responses. I am now talking to a man who is really sweet, but we are just taking things slow and doing the friend thing first and see where that goes. I will find my one and only, but it might take a bit. I am patient though. Good luck to all of you who are also looking. I hope Sara finds strength through this hard time. Shelby

Okay just a little venting. Met this guy a while ago as friends and recently it turned romantic. I told him about my health conditions when we started our friendship and he told me about his kid and stuff. So he introduces me to the kid and his mother and things are going swimmingly. Then on a date I get sick in front of him...I called my mother and father and had them come so he could go through the first time with help. So they get there I pass out and onward we go. So this weekend he tells me..."I dont think this can work. You are too much to handle. If you weren't so sick we might be able to make this work out." Um I expalined this before I met all his family and he met mine and we got involved. So are we too much to handle? I know some of you are married, so I have faith there is someone out there. I just got real upset cause he was like "your great and your sweet and I really like you...but" I mean come on tell me I talk to much or I have some kinda personlity flaw, not like that would have made it better. So onward to dating again. Lets see if we find someone else, better suited.

Oh my!! I am sorry to hear you have to go through all of that to find out that it was broken!! Good luck with the fixing of it. I have TMJ and have had two jaw surgeries and do you think it is fixed?? Nope. So I give up on that!! lol Again good luck hope they fix it!! Shelby

Hi all... Bluesman, I posted something about dating a while ago when I first became single after a six year engagement. I think you might find some interesting stuff in there. Sounds like your date went good and the after date call as well. Thinking that she is a nurse I am sure she will be understanding and accpeting of your illness. I do have the fainting so if and when I meet someone I would feel more comfortable telling them about my illness before I went out with them, just incase. Hope dating goes good for you...

I have a wheelchair and I use it less now that I am feeling a little better, but I lucked out and got it at a Garage Sale. Some people thought it was gross to buy a used chair, but it was only fifty bucks and it paid for itself right away. Sometimes in our state newspaper I come across ads for wheelchairs so that might be a thought. shelby

I am not the typical skinny POTS person, but I have NCS, so wondering if that makes a difference...if so can I trade diseases?? I am kidding, but since the start of my symptoms 10 years ago I have gained about 140 lbs. It ***** because I have the hardest time losing the weight and I went from being the athletic and fit to the complete opposite. I would love to start swimming or something to start losing some of the extra me lol!!!

Sorry this is so late I haven't checked in a while. I know how you feel I just went through a break up with my fiance of 6 years in April. I feel like I am going to end up alone, but even though it ***** right now cause the hurt is still there, I advise you to keep your chin up and play the dating game. I swear we should start a singles chat group on here for help and support while dating with POTS and NCS. If you ever need someone to chat with email me any time...Keep Smiling things will get better!! Shelby

I understand, I have myspace too and there are groups on there already for POTS, and more on Facebook if you are interested in that one. My myspace is myspace.com/shelby725

Hi Pooh, I went to the rehab center for three weeks of therapy and I personally thought that it was a good step twords getting better. I went there with NCS and fibro and I have done much better since then. They helped me with career help, stress help, we did physical therapy, occupational therapy, sleep studies, goals and workgroups. It was eight hours a day, five days a week I stayed at the Staybridge Suites across the street from the hospital it was a bit spendy but I was on Medicaid from Iowa and they paid for gas up there and my room and board, so if you are on that I would check into it. From my opinion it was the turning point for acceptance of my NCS and learning how to do every day tasks and get back on to a normal type of life. It also helped me figure out what I wanted to do with my life, helped me get into school close to me and figure out how to get my license back. If you have any other questions feel free to message back on here or PM me. I have to look at the big book I got from there to help me totally remember everything we did there, but it is expensive if you dont have insurance and it is expensive to live up there for the three weeks if you are from out of town...so I understand the questions and hesitancy to put all your eggs in this basket. Like I said feel free to contact me about anything. Shelby

I will start by saying your not going crazy. Effexor is the WORST to taper off and go off. I was on it for a while and I was having allergic reactions to something and they had to take me off of one at a time and when I went off the Effexor I didn't get to taper it off I had to just drop it and I was in bed sick for two weeks. So I understand what you are going through and it is perfectly normal. My doc says Effexor is one of the worst ones to go off if you tapper or just go cold turkey. Good Luck and hope you feel better soon!!

I understand this all too well. Iowa law is 6 months faint or seizure free. I went 5 years without a license and just got it back a couple of years ago and had to go through a lot to get it back with many physicals and visits to the DOT. I noticed that my neurologist has a poster of DOT restrictions state by state and I found this site you can go to and put in your state and they tell you the laws. It is an epilepsy site, but they treat them the same. http://www.epilepsyfoundation.org/living/w...drivinglaws.cfm If the site doesn't work go to www.epilepsyfoundation.org and in the search type in driving statwide laws. Hope this helps!! Shelby

I had two hours of saline IV fluids today for dehydration and the only thing I noticed was I got dizzy and more pale after the fluids...I do have a couple of bruises from injection sites and redness from tape, but that is the only thing that I am aware of. Now it has been 8 hours and after a nap or two I am feeling much better so hopefully my body will be up and ready to go soon.

I have had a total increase in anxiety since I was diagnosed. Although I have NCS, I noticed that when I go out I start to have such anxiety attacks that I have to learn how to control the breathing and talk myself into going into the place I was heading. I also have problems with meeting new people, like when a friend wants to introduce me to a couple or another friend of theirs, I just freak out. I just ordered a new kit called breath easy. It is a deck of cards that are supposed be breathing excercises to help with the anxiety and stress, feel centered and connected, and have more energy. I will try them out cause I am lacking in all those fields and report back later.

I once read a quote about therapy, and men sorry about this, but it said "Being in therapy is great. I spend an hour just talking about myself. It is kinda like a guy on a first date." I have to say that I love therapy. It is so nice to have somone give you feedback on the things that you are doing in your life. I do however think that finding the right counselor is the key. If you do not feel like you have a repor with a certain counselor then you should look for another one. Dont worry about hurting their feelings, it is the one time that being selfish and finding what suits you is very important. It is like shopping for a new pair of pants, you wouldn't buy the wrong size hoping you would fit into them...eventually. The funny thing is that my therapist thinks I should go back to school to be a therapist myself, but I dont think I would be very sympathetic, I would be like "and you think you have problems you should listen to mine." Hope that helps a little or at least you got a laugh today. Shelby