Sue

Thank you so much guys for all your comments. And yes I do think of all of you as my extended family. I am glad we can be there and understand each other when the rest of the world can't. I love you for that. Today is better. I talked to Dr. Grubb this morning. He took me off the Lexapro. I have now gained more than 40 pounds and still just don't feel like myself. I am back on Celexa until Tuesday when I see him. I am hoping the weight will come right back off at least some of it. I can handle eating "Bunny Food" for a while. but I don't excercise very well. I have read some posts on pilates I am going to try those. By the way there are some pamphlets that Dr. Grubb use to have. When I go on Tuesday I will see if I can grab a few. If I can I will let you know. Thanks again for lifting my spirits AGAIN!! Sue

Hi Paige, Having a miserable day myself right now but wanted to tell you I'm feeling for you right now. Sending good thoughts your way right now. ((((((((((((((((((((((((((((((((((Paige))))))))))))))))))))))))))))))))) .....and a hug Sue

Ok I totally give up. I was feeling really good today, so I decided to go out for a little while with my mom and sister. Well a little while turned into a long while. I kept telling them I was getting really tired. But does anyone listen!!! Well guess what. The next thing you know I'm on the ground having a typical episode. My sister, I love her dearly, is trying to tell me its ok your just having a PANIC ATTACK!!! Where she gets that I have no idea. I felt my pressure drop, that blood sucking out of your body feeling, arms and legs turning to rubber, HOT HOT HOT, so here comes this macho type paramedic type and he's just looking at me like my god what do I do with her????? I told my mom just take me home, NOW... now I'm shaky and getting a headache. and yes I made them leave. I have tried to explain to my family a million times what is wrong with me. They just don't get it!!! So what do I do. Well one good thing came out of it. I am wearing a heart monitor right now for Dr. Pelosi am hoping whatever he is looking for may be on the last transmission I sent over. I would NEVER wish this on anyone, but you know maybe just a day in our shoes might just make people understand Oh I get so aggravated. I still am on this Lexapro too, it doesn't agree with me at all, I see Dr. Grubb on Tuesday. May have to beg for something different. I am so sorry for ranting, but I thank god I have somewhere to go to get this all out. I love you guys for being here. Sue

I have tried all kinds of medications for urinary frequency, I even had a device implanted in my bladder, sort of like a pacemaker, you have it tuned at the urologists office. That didn't work either!! Had it removed. My urologists said it is a major part of NCS and didn't want to mess around too much because he was afraid the medications would mess up my system even more. Good luck Sue

I too am wearing a "king of hearts", My blood pressure falls quite low, usually 80/50 sometimes even lower. I am hoping this will provide my doctors with some answers. The cardiologist is thinking a pacemaker but Dr. Grubb is not sure. I would just like to find something that will give me my life back, I like everyone else have to much life to enjoy I do notice my heart rate fluctuates quite a bit. We go down to 50's and then up to 160. So I really don't know what is going on. Take care and good luck Sue

Well I rec'd my heart monitor yesterday. My cardiologist is using this to determine if a pacemaker would help me, I have NCS. My normal heart rate seems to be fluctuating between 70-80, when I feel pre-syncopic it falls around 50.. Does that tell anyone anything. It doesn't seem to be a significant drop in numbers but "feels" like a significant drop physically. Just curious. Sue

The weather here is starting to change, and by now most of you have heard me complaining about my weight gain with Lexapro. Well we are quickly climbing up to the forty pound mark. I pulled out my summer clothes just to throw some shorts on to sit in the backyard while my husband did some yard work. NOTHING FIT!!! NOT EVEN MY "STASHED FAT CLOTHES" I have never been so disgusted in my life, actually I was so upset I started to make myself feel worse then I already had today My appointment with Dr. Grubb is next Tuesday, I am so tempted to quit taking this stuff and just have him put me on something else in a week. My skin actually feels like it is stretched to the max. I actually eat quite healthy I don't know what else to do Sorry I just needed to vent. Sue

I am wondering why so many of you have had sleep studies??? I know my sleeping habits are abnormal but is that reason for concern?? I usually sleep 10 - 12 hours a night and that is not even enuf. If I don't get those hours of sleep I feel miserable like today. It was very warm in our house last night and I kept waking up. My husband offered to start up the air conditioner, I guess I should have let him. Now today I am total symptomatic. My head feels like a ton and I am very, very tired. So naturally its a couch day Your input is appreciated.. Sue

I have been doing the coffee thing for a while now. I found regular coffee was too much for me/and decaf was kind of gross. Now I buy Maxwell House LIGHT/it has half the caffeine and after I played with coffee/water ratial its not bad!!! and it helps me. Good Luck Sue

Hi I find that very interesting, I was diagnosed with endomitriosis as a teenager, I had my first surgery when I was sixteen. A massive cyst burst on one of my ovaries causing quite a mess. By the time I was 25 my pap smears were coming back with severe dysplasia. (Cancer cells), I had two C-sections the following two years and then had to have an emergency hysterectomy one month after my last C-section. Ironically that is when my NCS started. My husband seems to think it was caused by the two years of trauma to my body??? I'm not sure if the two are connected just thought I'd let you know my background Best Wishes Sue

Hi Genie I have NCS and take Lexapro, but don't like it. I have gained 30 plus pounds now and are stillhaving a lot of pre-syncope. I am seeing my doctor next week to get off. But am sure you know everyones experiences with these drugs are SO DIFFERENT. Best wishes Sue

Hi danelle You can email me if you like breystarr@aol.com Sue

Hi Danelle Can't help you out on the flying/have never done that but wanted to let you know if you are staying at the hotel on the hospital grounds (Can't think of the name of the hotel but someone will see this and let you know) they will give you a discount just let them know you are seeing Dr. Grubb Your a day early too!! My appointment is the day before yours Best Wishes Sue

I am happy to say I celebrated my birthday to the max and had an awesome day!! My teenagers took me out this morning to Dave and Busters, kind of like a grown up Chuck E Cheese , was a little shakey there, very noisy!! But did great. Went to the casino, with parents. husband, sister and girlfriends (lots of support there huh??) then to dinner. Best part, the CHEESECAKE AND WINE!! I can't tell you how good that wine was!! It has been so long. My husband said I was like a teenager boy having sex for the first time. LOL Thank you everyone for your comments and suggestions, I did drink a big glass of water with my wine. But boy it was YUMMY!!! I am majorly tired though now, but I don't care. I am ready to snuggle in my bed and sleep a good 12 hours like I normally do. I feel so blessed right now, good night, Sue

can you tell me exactly what an ablation is??

This is really sad. My children are on spring break this week. I went in my sons room this morning, he had his blankets rigged up around the heat duct in his room. When he got up I asked him what was up with that. He said he was so cold last night he figured if all the heat went under his blankets (had it fixed like a tent) he would be warm. Well it worked but I was so upset. Our therm. is on 65-68 any higher and I can't stand it. I have been reading alot about the cooling vest I may just have to get one and wear it all the time. Thats pretty bad your child can't sleep in his bed cause he's too cold. My daughter is always running around with extra clothes on too. She sleeps with double pajamas. I think I have made my family suffer enuf.

My appointment with Grubb isn't til the 27th, but I am steadily still gaining weight here. This morning I told my husband I think my skin is stretched to the max, it actually hurts. I have now gained 34 pounds since being switched to Lexapro. (8 weeks) I am wondering this. If I am correct Florinef (which I also take) is a steroid, I wonder if there is something in the Lexapro that is aggravating it to make me balloon out like this, or maybe I am just not good with the Lexapro ??? Worse yet how am I ever going to get this off?? I am really starting to worry.

Thank you everyone for your replies!! Tomorrow is my birthday and I am going to my favorite restaurant for dinner, and along with my dinner I am going to have my first glass of wine in ALONG time. I will take advice with the big glass of water but I am going to enjoy slowly every sip. Sue

Sunday at dinner everyone had their glass of wine, except for me, of course. I wanted to just swipe those glasses from everyone and drink every last drop of wine. It just looked so good. I was never a heavy drinker, just social. But I was told not to drink with this. I haven't touched anything in 16 years!! Do any of you drink?? Even just a glass of wine. Does it affect you and how. Just curious. LOL Theres a little bit of wine left in my fridge, I could be tempted

Hi April I am also trying to find something I could do from home. I contacted Better Business Bureau, they told me most of the listings you have to pay for are scams. There is nothing they can do to get rid of them. One thing I have found is Purple Heart, or Salvation Army. They will pay you for doing phone work at home. You might want to try them if you don't mind phone work Sue

Hi April I have noticed that too. I have NCS. I am wondering does POTS cause all of these other problems??? Or has POTS been the results of everything else??

Ditto here too ladybug, I haven't worked in a couple of years now, except for part time jobs here and there, that I usually have to give up because of my illness. My husband says my job now is to just take care of myself. It sounds like you have a wonderful support system and that is wonderful, we all need that. Let your family love and support you, hopefully brighter days are coming. feel free to email me whenever if you want to chat. Sue

hi tearose My mom has always had problems sleeping since I can remember, and would never take anything. She blames this on being a mom Always listening for the baby, staying up for sleepovers, waiting for the teenager to come home, the late date nights, etc. and even though we are all on our own now she cannot find a healthy sleep pattern. recently she bought a CD player for her bedroom and she plays a cd of a soft bubbling brook, some birds chirping quietly, and some other peaceful sounds. (Bought at Target, they have others too), At first we really didn't think it would help, but it HAS!! She isn't sleeping a full eight hours but the hours that she is sleeping are sound and peaceful Just an idea, it may help Sue

Can't tell all of you how much of a lifeline you are to me. I may not always comment but I am on reading getting advice everyday. You have helped myself and family tremendously. Just wanting to thank you and wishing all of you a blessed Easter. Sue

can you tell me what that is?? Sue