bttrflyamby1981

I'm glad you got what you wanted. It sounds nice. Thanks for the smile you put on my face. Your happy energy rubed off a bit.

I had major problems with cramps in my legs while I slept........ I would cry my eyes out it was so painful. I'm so sorry your dealing with this kind of pain. Have you tried bananas? They helped me. I also was told to lay on my right side for the best blood flow. Deep breaths can be helpful too.( I tend to hold my breath while in pain), but deep breathing helps. Good luck and hang in there. Amber

I'm sending my best! Amber

Hi everyone, I did try midodrine I took the first dose and I couldn't even lift my arms, when it came to take the second I had started to feel better. So needless to say I DID NOT take it. I told the doctor that it felt as if I drank 10 pots of coffee and I wasn't going to even think about trying it again. He laughed at me and put me back on Toprol XL.

you are not alone!!! Please vent as much as you need. I get stressed too LIKE RIGHT NOW, MY DAUGHTER JUST BROKE A WATER LINE! sorry got to go

I agree with you ellen, I finally told my instructer at the gym what I've been dealing with, she was trying to push me farther then I could go. At first she reacted the way most people do, asking me why I was working out. I told her that the doctor wanted me to work out but that I have to go at my own pace. I also told her that if she wanted to help me she could give me encouragement instead of trying to get me to be at the same level as the class. She is so supportive now and that makes the exersize prossess so much easier. Amber

It does help a bit. Thanks. Just looking for alternitives, the Topral XL has helped but I still had symptoms. I thought maybe it was because I had a hard time remembering to take it. I took it before bed time and if I forgot I usually had a migrane the next day. Thanks, Amber

COGRATULATIONS on 25 years. Thanks for sharing, you look so happy! Amber

Thanks for your input. I was reading about the long term affects and it worried me. I have a book called The Essential Guide to Prescription Drugs 2005 By: James J. RYBCKI, Parm. D For Topral XL(METOLAZONE), the one I was taking. For long-term use: Reduced heart reserve and eventual heart failure in susceptible individuals with advanced heart disease. Does this mean if you already have heart disease? And does anyone know if you can develope heart disease while on the med. or will it help prevent it? I have never liked taking meds. and I tend to forget to take them. So I thought maybe if I wasn't feeling great it would remind me to take something? Make any sense? If anyone wants to know about a prescription just ask and I'll look it up. It also has a list of herbal/prescription combinations you MUST avoid. I find it helpful, but I sometimes get them mixed up in my head so I should look at more often to make sure I know what symptoms go with what and so on. Amber

Hi, Just wondering if there was a med. that you could take as needed? I hate to think of the long term affects the BB do to you. I have a family history of heart disease, heart attac, and I don't need another strike against me. The tests I've had showed that my heart is healthy and no sign of heart disease so far, I would really like to keep it that way. Can any one help? Amber

I wasn't able to exersize at all a few months ago, but the doctor wanted me to do as much as I could. I had dizzy spells when I walked around the block, but I pushed myself a little more each day. After awile I was able to do more, (walk faster, jog a minute or two, do all the dishes) It's not easy by any means, I do have more energy though so to me it's worth it. I now go to the Gym 4x a week and I do what I can and push myself a little farther each time I go. Every time I walk out of the Gym, I feel like a wet noodle. But I feel better in the long run. I get symptoms no matter what I do, so why not benifit from feeling like crud. Amber

LOL, My whole body cracks! It drives my husband crazy. It's mostly when I haven't done alot of movement like when I wake up or watch a whole movie without getting up. My legs hurt when I don't move them ALL the time, so I don't sit still very often. In the mornings you could put milk on me and have me for breakfast. Amber

Hi Lisa, So sorry to hear your problem, I can only immagine. Do you think that maybe you got something in your eyes because of the wallpaper? I have been having problems with my eyes too, wonder if you feel the same thing? My eyes feel like they have a glaze or film over them. My eyes kinda hurt but it's a tierd hurt. I've noticed even with my glasses, I have a hard time focusing and I'm squinting alot. Also blinking alot trying to clear my vission. Do you feel like this? Good luck I hope you get better soon. Amber

Hi MaryJo, I have had a burning watery eye feeling but don't know if that's what you are dealing with. The bottom of my eyelids get filled with fluid and feel puffy like I've been crying. I think for me it's more allergies then anything else but I also get migranes. If I don't eat as soon as I feel hungry I get very weak and dizzy. In fact I gained 20 pounds because I found comfort in eating. My symptoms seem to lessen when I eat small meals throughout the day. Now I just be carefull what I eat so I don't gain anymore pounds. Hope I have been of some help. Amber

I've noticed If I keep water with me I can enjoy being outside more. My family spends alot of time outside, and the last three years have been hard. My winters are a little better, but it can still reach high temp. more offten then not. If I know I'm going to be outside, I make sure I drink more water before I even go outside. Some days it doesn't matter what I do, it's just too hot. I have thought about moving to a cooler part of Arizona but I've lived here my whole life and I'm not ready to yet. I couldn't find the info I wanted, but after thinking about it I think my meds. said to stay out of direct sun because you had more of a chance of sunburn. Could have been another med. I was on though. I've been on so many, that I get them mixed up. Maybe it's just been hotter then usual or more humid. I don't have much humidity here so not sure what that would do for the symptoms. To live here, it's like opening up the oven door everytime you step outside. Amber

I live in Arizona, very very hot. I too have problems with heat. I was on the beta blocker Topral XL, and I think it said something about avoiding direct sunlight. I'll look yours up and let you know what it says. Amber

I never noticed if the weakness I have is more on the left side or not. I guess I should pay att. I do know that when I get migranes they are mostly on the left side, would that be related? The only reason I was aware of this is because I did a log on the migranes I had. Maybe I should do the same with the POTS symptoms. Amber

I'm sorry to hear your not doing well. We live with our bodies every day, we no when something is wrong. Go with what you feel. Good doctors will listen or at least try everything they can to find out what's causing you to be in pain. Good luck! Amber

I said a prayer tonight Best wishes Amber

I don't need to buy things at a pawn shop for them to be broken. My two year old son wants to know how everything works. If it wasn't broken before he touched it, it will be.

I get the jitters so bad I have people ask me if I'm cold and I say " no, I'm hot but give me a minute" The looks I get at the gym are quite funny. I'll be fine one second and holding onto the nearest solid object for dear life the next. I FEEL LIKE GUMBY! Sometimes I can't even putt in words how I feel, if I tried it would sound like this; ?????. How do you put that in words? This cheered me up, thanks. Nothing like pokeing fun at yourself to make light of the blahs. Amber

wow, your story is very much like my own. I don't think I asked my doctor any questions though, mostly because he addmitted to me that he didn't have any exsperience with POTS. He heard about it and I had alot of symptoms. I never asked for details and I'm kicking myself for it now. My memmory is horrid and I sometimes have a hard time understanding the smallest of details. Trying to sort things out can be a challenge. I think at one point and time every one of us has been told it was all in our head. Your not alone. It sounds like you want to be aware of everything that can be connected to POTS. I think that's great! Don't let others that don't understand how scary it can be, tell you any different. It's ok to want to know what other possable symptoms might develope or even get better. I'm new with this as well and I'm learning new things every day. I do know that everyone is different, some are less symptomatic then others. Meds. that I can take might make someone else feel worse. It's trial and error. You are starting out great by finding out what you can, asking questions. As for wearing yourself out, we all do it. It sounds to me that it's worth it to you, and that's what counts. I want to give up all the time because symptoms bring me to tears but I don't want POTS to tell me what I can and can't do. I used to run track and I was always at the top of the class (the role model). Now I get frustrated not because I want to be at the top of the class but because I can't even do housework without getting dizzy. When I work out at the gym I work myself to tears. I walk instead of run when I've had enough. I have to stay close to a wall so I can hold myself up. I have good days and bad days. Today has been a bad day. I do yoga every monday and today is the first day I almost passed out in this class. But I pushed myself through the dizziness and the foggy vision and finished the class. Just venting a little, sorry. Good luck in finding your answers. Amber

I'm sorry you feel so sick. Not sure if the meds. will help. Just wanted you to know I'm hear for ya. hopefully you will fall asleep and have a better day tomarrow. Amber

Thanks, the Dr gave me all the samples he had and wants to continue to see me but I'm running into the problem of pre-exsisting stuff. If I'm not on meds or treated for six months then they can't consider it pre-exsisting. Isn't that lovely! I've been ok so far and have been off meds for two months. I had these problems for two years before I found a doctor who would listen to me. So I guess I just have to do it again. Talking to everone makes it easier to deal with. Thank you. I don't think I could say it enough. My husband doesn't give me support(I think it scares him so he pretends it doesn't exsist) So I really need the support anywhere I can get it. Amber

Hi, I'm happy you got the dx. I tried midodrine but I couldn't handle the side affects. I felt 10 times worse. But it may work for you. The only thing I've been ok with is beta blockers but it doesn't help all symptoms. Good luck in finding what's right for you. Amber