bttrflyamby1981

Hi Kawa, I'm sorry you had a reason to find us but glad you did. WELCOME! Amber

Hi, It feels like I drank too much and woke up with a bad hang over........but had nothing to drink? My head hurts, I feel week and have nausea, dizziness and I don't want to even think about food. I feel like I'm running a fever but don't think I actully have one. I have my two kids to take care of and am babysitting another today. I might have to call his mother and have her pick him up early. She knew I didn't feel well so she said to call if I couldn't do it. The question is, can I do it? I feel that more and more of my strength is being sucked out of me. Is it going to get worse? I thought I was doing pretty well, but now I seem to be going down hill a little at a time. I told my husband that I felt like I had a hang over.........he laughed and said "but you didn't have anything to drink"? I guess it is funny, but I'm not finding it so at the moment. Is this a normal feeling for POTS? Thanks for listening, and hope everyone else feels better then I, Amber

Hi Dayna, I agree with OLL.......... I also have a hard time trying to say how I'm feeling. Things always come out wrong or If I'm not feeling the symptoms at that moment I forget "how" they felt. Writting the symptoms when I feel them has helped. Good luck, Amber Oh, I have kids too......I feel for you. I understand how bad you can feel when you can't take care of your children. Just tell them you love them and give them hugs and it will be ok.

When I was put under for the same thing I woke up and felt really bad. The pain wasn't too bad, but I had dizziness and nausea. I made it home ok and slept everything off. Good luck, you might want to mention to your doctor if you are likely to get nausea. They usually can give you something to prevent it. If only I knew that when I had mine done. Amber

Hi Melissa, I'm so sorry your dealing with so much.......I wish you the best. Amber

Thanks, I'm thinking I'm going to have alot of work to do! I ment EP Cardio when I said Nero.....sorry I think the Cardio I was seeing may be ok with working "together". But then again, maybe not? He sent me to the ep doctor and I didn't care for him.........mostly because his english was very hard to understand and he was getting irratated with me because I had him repeat himself over and over again. Now that I have a computer I can do more research, so hopefully I'll come a little closer to the answers. Thanks again, Amber

Hi everyone, The Doctor's list didn't provide one in my area and I can't travel? How can you find a doctor who is familiar with POTS and will take you even if you haven't been dx? My Cardio, heard of POTS, but hasn't delt with a patient with it before. He sent me to a Nero Cardio who seemed to know more about it, but didn't seem interested in getting a true dx. He put me on a different med and sent me home. I'm trying to figure out where I should begin? I don't want to be written a perscription and sent home without answers. How do I get a dx if they just put me on meds???? The Cardio told me that he didn't know what to do, but wanted me to stay on meds to control the high heart rate. Anyone have the answers? Sometimes I feel that I can rely on you guys more then the doctors. Amber

Thanks Susan, I'll have to keep those medications in mind. I think I'm so frustrated because the pain makes it hard to think straight....... Not knowing what's causing them is another. Then to top it all off, finding a doctor has to wait untill I have insurance again. GRRRRRRR Taking one day at a time, Amber

I'm so sorry you feel so bad......... Hope you get better soon, Amber

Hang in there, I usually don't tell people this, but I didn't finish High School either. But in my case, I don't have a GED. Have yet to even try.......... My reasons? Too scared, no confidence, money issues, lack of support.....you name it. I don't feel this defines who I am. Not to say I don't want more out of life, but right now, this is working for me. When my kids are both in school, I plan to get my GED and go back to school. I know how your feeling, but you should be proud of yourself. Getting your GED is a big accomplishment! Amber

My husband and I like to play cards while listening to music and sharing childhood stories. It works well if you can't afford to go out or can't pay for a babysitter. We just wait for the kids to go to bed and then we can have "our" time. (Now that kids are getting older, we play a game of go-fish before we put them to bed) We love camping at the lake..........in the summer it's great to lay on a raft and let the cool water lap over my body. Amber

Welcome Kate, I have had POTS symptoms for a few years now and I find it a hard at times but it's not the end of my life. If I want to do something bad enough, I find a way. You can do the same.......don't give up. You can still change the world! In a way your lucky finding out you have POTS before you started your family, now when you meet someone and they chose you for your great personality, they are also choseing to be with someone who has a tough road ahead of them. (with their eye's wide open) My husband had no idea that when he married me that I would become ill, and he's the type of person who doesn't deal with any illness well. He's doing better since I found this forum, (not sure why) but it does make it easier. Everyone is different though so I can't say for sure how your life will turn out........ Stick to your plans, be who you want to be. You might have to do it a little differently then you had wanted to, but know that you can do anything you set your heart out to do. Just at a much slower pace. You have a strong personality and I think you WILL make a difference no matter what path you choose. Good luck, Amber

Thanks, I have kept a log and can find no link for why I'm getting them. I have times when I wake up with one and even if I take something, it will linger but not go away. Today I woke up with one and it just lingers.........The nero has real scared me about taking otc for them and that's all I have right now. At least it hasn't made me sick yet .........just enough pain to be noticed, so I can handle it. Thanks for your suggestions, Amber

I used to never have the dizziness while sitting, but here latley I have been. Right now at this moment I'm having my first "floating" episode........just sitting in front of computer. Very wierd and hard to describe. A bit scary too. But I'm still able to type so must be ok. I would not drive anywhere if I felt like this....... Everyone is different, I don't drive if I have a bad migrane, or if I take anything to treat one(perscription) All in all, I don't feel that I'm that restricted at this time. If I have to even question my ability to get behind the wheel and drive safely, then I won't. I'm not going to risk my life, my childrens, or anyone elses. Amber

Hi, I have a book I looked it up in........ possible benefits; effective prevention and treatment of certain forms of malaria effective in the management of acute and chronic rheumatoid arthritis in adults who have not responded to less toxic medicines Possibly effective in management of chronic discoid and systemic lupus erythematosus possable risks; infrequent damage of cornel and retinal eye tissues bone marrow depression heart muscle damage ear damage: hearing loss, ringing in the ears uses; treatment of Sjogren's syndrome there is other uses too but didn't think you wanted to know If you want to know anything else on this just let me know and I'll see if I can find the answer. Amber

My symptoms started when I was 7 months pregnant. I thought it was just the pregnancy. Feeling faint and nearly passing out if I was too hot. Now that I think about it, I had a shot about that time to stop contractions.Don't know if that could be related? Not sure if any family members have it. I wouldn't say that I have fair skin but I do have sensitve skin. I was born with strawberry blonde hair, but it was a dirty blonde most of my life......now I'm not sure I like to color my hair. I have brown eyes. Maybe we should think of our Mother and Father? My Dad was fair, blonde and blue eyed? My Mom is medium, dark brown/black hair and brown eyes. It's a thought. Amber

Hi lisa, I'm sorry your having to deal with all this. Having children is enough of a chalange and I'm sure this doesn't make it any easier. Your son having a cold shouldn't have to be such a big deal, I'm sorry you are going thru such a hard time. I have small children and I couldn't imagine if I had to go to the hospital for even a few days. It sounds scary and I hope you don't have to go that route. Wishing you luck, Amber

It's hard not knowing for sure what's causing our pain...........but scary to know the true dx as well. Just wanted to let you know I understand how you feel. I'm still waiting for the dx. Good luck, Amber

Thanks Mary, I didn't really care for him....he didn't listen. He put me on other meds too, but not at the same time. I took Imitrex to treat the migrane. Now I have to wait untill August before I can get insurance.........so I just have to deal with all this untill then. I'll check into a headache Doctor, and I should find a doctor who knows more about POTS as well. Thanks for your help, Amber

Just wanted to welcome you and wish you and your husband luck. Amber

It sounds like your trying to do to much. For me I had to start with walking (only), for about two months that's all I could do. Slowly I started adding more stuff like yoga and lifting weights. Everything I do I do at my own pace. I still have weekness and dizziness no matter what I do, but working out makes me feel like I'm acompishing something. The only thing you can do is listen to your body.......I couldn't imagine playing basketball or tennis. Just take it slow. It's your body and your the only one who can say if you have had enough. I have also had a weight gain and want to take off 25-30 pounds. I try and watch what I eat (not always easy) and I work out at least 4x a week. I tried doing more but it was too much.....I take it day by day. If all I can do is 5 min then at least it was "something". Good luck, Amber

Thanks Lauren, I do have a hard time around that time of the month............I have my tubes tied so never thought about taking birth control pills. Something to think about. Amber

Welcome, I know how you feel........I have not been dx yet and I think that in itself is frustrating. I still feel alone sometimes because I don't have that test confirming "this is what I have". Everyone here is very sweet and supportive and I hope you find some comfort in knowing your not alone. I myself found 10 tests that the doctors have not tried so if and when I get insurance again, I'm going to go prepared. Good luck to you, Amber

Dito..... , Amber

I agree..........someday hopefully we won't have to fight so hard to be heard or understood. A little at a time will get us there. Amber