maryfw

where do you get those?

mary

I wonder if this is something I should talk with my cardiologist about since she is the one treating me for my NCS. or just talk with my primary care physician about it?

Has anyone else had any luck getting treatment for sleep?

mary

My doc is sending me for a sleep study. I am totally exhausted today. I think I probably wake up alot at time and dont even realize it. Maybe I am not enterting into the restorative phase of sleep. I seem jumpy, like I am sleeping very light.

mary

My doctor is sending back to a sleep specialist. I think they call in non-restorative sleep. He thinks a sleep study would be a good idea. We shall see what happens this time. Didnt offer me anything to help me sleep because I dont have trouble getting to sleep, I just have weird dreams and feel like I didnt sleep when I wake up.

mary

Another bizarre dream last night.....

Only on midodrine.

Im going to the doc today. Not resting well. more wierd vivid dreams right before i wake up. i am sooooooooooooooooooooooooooooooooo tired.

mary

cold today even in Florida. Tonight it will be 19.brrrrrrrrrrrr. My husband now has to leave for work before I do so I had him start my car and left about 5 minutes later. It was wonderful to have a warm car to get into today.

mary

I seem to have the weirdest dreams and dream alot. I dont think I am sleeping well and I seem to dream about passing out. I cant even get away from my condition in my sleep!!!!!!!!!

mary

Welcome aboard. Just curious......what kind of seizure disorder is it that may or may not be related to the POTS?

mary

The ingredients are: Water, sucrose syrup, high fructose corn syrup, citric acid, sodium citrate, salt, natural & artificial flavors, monopotassium phospate, sucralose, acesulfame potassium, red 40, blue 1.

Is the sucralose and artificial sweetner? I really dont want to drink artificial sweetners so that is why I am being so specific. If so I never knew that and just does to show how careful we have to be.

thank you again for your help

mary

Where do you see the artificial sweetners in G2? I only see sugar or so I thought????????

dont want to drink artificial sweetners so can someone tell me what on the ingredients is the artificial sweetner?

thanks

mary

I got my first purchase of G2 last week. Not bad at all and half the calories and sugar. A few flavors available and I tried the grape.

mary

Jennifer..........I had considered getting some Xanax. Used to take it for what I thought was a panic disorder but now I think it was just the pots. Definitely will be calling me doc that some though. Not a bad idea at all.

thanks

mary

Tessa. I have never had a doc understand it either but I have suspected that it is POTS related and one day last month I noticed that the little hills were bothering me and later that night I had a near fainting spell so I am just putting two and two together. I think it is a Gravity thing. Even if I cant get a doc to understand it or agree my body tells me it is POTS. I also cannot do boat rides because of the waves or air planes because of the rapid acceleration on take off. I am just learning what my body cant handle and try to avoid it at all costs.

So I am glad I shared. and Merry Christmas to you too.

mary

I work for a very good company with very kind and caring people, even our CEO so I am very fortunate. I'm sure though however there would have been questions about my abilities if I cannot even handle a short presentation. My immediate boss was there and he knows about my issues but I have never been so specific as to tell him everything that effects me. If he had know that I needed a chair he never would have placed me in that situation. My error for not telling him but I am still learning my disorder and what triggers it and speaking in front of VERY important people EARLY in the morning while STANDING definitely does it.

I am unique in that I dont think any of you have the same problem with driving that I do. When I am in a car I CANNOT accelerate fast or my bp drops. I have had to learn to tell my boss and coworkers up front when I get in the car with them about my issue so my boss does not about that. I cannot drive though steep hills fast because that causes my bp to drop and when I am having a really bad day even the small hills can do me it.

I am very fortunate though that I dont pass out completely, I just come close.

I still feel blessed and want to wish everyone a very MERRY CHRISTMAS AND A HAPPY NEW YEAR.

MARY

Ok as if the mornings are not hard enough for those of us with Pots/NCS, this morning (7:45) I had to meet with our board of directors for our company and the CEO of our company. I work for a regional banking institution and we are in the top 100 banks in the nation. So I had to stand for about 5 minutes before I could speak and my NCS was acting up this am just from getting out of bed so by the time it was my turn my heart was pounding and I was seeing spots. I know that it is normal to be nervous in these situations but for us it makes things 10 times worse because the ncs causes nerves and the nerves cause ncs...............ugg....................I am just glad I did not pass out in front of all those IMPORTANT people and for that I am counting my blessings!!!!!!!!!!!

mary

I MADE IT!!

I am so sorry for what you are going through. No great words of wisdom to offer except that what goes around comes around and sooner or later people ususally end up needing help themselves at some point in life and may at that point regret the way they have treated others in life. I wish I could be more helpful so I am sending you my thougths and saying a prayer for you.

mary

Thank you. I googled it and found that one of the causes of PVC's is increased adrenaline..............well then we probably all have pvc's or pac's if that is the case. Al least now I know what it is and it is not so scary when you know what is going on.

Thank you

mary

No advice but good luck and I am saying a prayer for you now.

mary

could someone please tell me what PVC and PAC stands for?

thanks

mary

Yep. Mine does the flip flop thing and sometimes it feels like it stops for a beat. It has never been picked up by a monitor though but I know I have it. It is like Mrs B said.....the car that works fine when you take it to your mechanic.

mary

My son was recently diagnosed with NCS and the only treatment the doc wanted for him was NO CAFFEINE and lots of water and gatorade. My son is 17................now what are the chances of a 17 year old teenage boy doing that? Next to 0.

Amen to all of the above.

Ok. I needed to see a GYN to try to get on the pill to help my NCS symptoms. My symptoms are always worse pre-menstual and menstural and my cardiologist thought it was a good idea for me to go on the pill as a help for my NCS symptoms. Well I should have known better than to go to a GYN that had an opening so quickly. Got there and the nurse who was taking my history did not know how to spell "syncope". Then she had a hard time finding my bp and I told her that is because my bp had most likely dropped when I stood up and walked back to her office. And this was after I had told her about the midrodrine and what it was for. Don't you just love it when you know more about your medical condition than your health care providers. It was a comdey of errors the entire visit.

The good news is that I got a prescription for the pill and will never go back to that doctor again...........many other things happened so it was more than the nurse not knowing what she was dealing with. Oh boy. I will be a good girl and go ahead and schedule my appt for next year now with a doctor that is not so easy to get into to see.

Got to laugh.

mary

Welcome aboard. The only thing I can offer you is an ear and you will find lots of compassion here. This is a great place, very warm and safe.

mary