all4family

Hi Chrissy, I wish I had an answer, but I can say I relate. Sometimes my mouth is very dry, and no water makes any difference. And it seems like I am peeing out more than I am taking in. Are you taking in salt too? I know my electrolytes are always off when I have blood work done, and it doesn't seem to matter what I have taken in. I was also fasting when I first became sick. Haven't done it again since. I hope you find an answer. Suzy

Hi Jan, For me my blood pressure is erradic. Sometimes very high, sometimes very low. I was worried about the salt, and my blood pressure too, so I just started adding it slow. So far it has actually normalized my B/P slightly. I am not up to the full amount my doctor has told me to take yet, but so far so good. But if I don't drink enough fluid with it I do notice I get a headache. Maybe you could just try increasing a little, and see if it has a positive effect. If it doesn't then let your doctor know before you try any more. Hugs Suzy

Hi EM, I am with you forget the cough! Bring on the food! I've always found the food remidies to be the best! (Maybe I just like the food huh?!) Let me know if they work. I tried the suck on a peppercorn one yesterday, and I don't know if it is just a coincidence, but I didn't cough a lot last night, and I am not coughing yet today. Just hope it lasts! Hope your feeling better, Suzy

well my post may be a little late. It's only 3 where I am at. I have trouble with most things I try, and wasn't disapointed with the drinkable contrast. I got a rash head to toe. The lady doing the CT said she had never seen that before. No one has reactions to the drinkable dye. But she wouldn't give me the injectible either. But the next 2 times I took the drinkable dye I took a dose of benadryl before, and didn't have any problem. If you are concerned, you could ask if you could take that before hand. Hope this helps, and hope I'm not too late. Suzy

Hi EM, I found this looking for a solution for my cough that I have had for a long time. Something that wouldn't leave me drunk 24 hours a day! just some natural remidies, but worth a try. http://useinfo6.blogspot.com/ If you try any, and they work let me know. I'd love to quit hacking for a while. Hope you get feeling better real soon. Suzy

Hi Susan, thank you for sharing that. I like what the doctor said about dysautonomia being a pretty disease. It's like if someone can't see with there own eyes your illness then to them it doesn't exist. I hope you wil come to have more of those rare times when sara can go shopping with you. Thank you for the encouragement. Hugs and best wishes to you too. Suzy Hi EM, I love your song! You look so happy in your chair with your dog on your lap! I am happy too. At least I feel happy! I just have some silly mental block about if I am sick enough to use a chair! I guess if I have been sick enough to quit living for the last 5 years that should answer that question. I love your little poem, or statement. I started writing poems after I got sick, now I am writing a book. Thank you for the encouragement! It helps to know I'm not alone. Suzy

Hi Angela, I have not been repeatedly sick, but can definatly empathize with the feeling of getting sick a lot more than I used to. I am still battling an ear infection I've had over a month now. I had the flu, way back in October, and still have a cough. But I don't know if it was from the flu, or if I had it before. I just don't remember. It seems like when it rains it poors. As for your cardiologist....that is just wrong. Unfortunatly I have heard those same words all to many times. I hope you get some help with this soon. And if you get an answer....please share! Good luck, and feel better soon. healing hugs Suzy

Thanks for doing this poll. I was glad to see the question about singing. That was the first symptom that I noticed in my life, and still a most bothersome one. I felt like I was all alone, but now know I am not. Suzy

Thank you Morgan! You are so right. And that is so true about helping myself, and my family. I know my husband doesn't like having to try and haul me around places, and I know his back is thankful too! You are right. Before I ever needed a wheelchair, or even thought of needing one I felt bad for anyone in one. And if someone does have a bad opinion, who gives a rip, (like you said!)! If they do that is there problem. I think though that it is how I feel about myself being dependant on something to help me. But that is something in me I need to change. I want the freedom, and me sitting here not having it because it means that I am less then I was before is just silly. I have known I have been less able to do things for 5 years. So I just quit. I quit doing things. And that is no fun of a life. I will use my chair, thanks for the boost. Suzy

Hi morgan, I am so sorry. Did they do that to try and fix problems that were caused by possibly POTS? Or was it something else it was done for? That breaks my heart when someone does something to try and improve problems they are having, only for them to be made worse, or add new ones that didn't exist before. That was how I was with the medications given to me. They just made my problems worse. Did it at least fix the problem they were trying to fix? Take care, Suzy

All right Jennifer! You should just be a comidian! I laughed so hard (ok not really hard or I couldn't breath) I almost passed out! I will run this by my husband, but he might run up to petco, and get me a collar! rolling on the floor croaking! Thanks for the laughter. Suzy

Hi UtahApoc, welcome! But sorry for what you are going through that brought you here. I have to say I don't know what idiopathic hypovolemia is. Maybe you could explain? Is it the same as saying POTS? I am so sorry that you are having a relapse. I know how frustrating that is to be doing well, then have the familiar symptoms return. It's like you want to hurry up and do anything you can to stop it. Please don't lose hope. You got a lot of good things in your life to be hopeful for. I know how it feels not to be able to shower. I have just gotten to the point I don't even try showering in a standing position. I sit on the floor of the shower, and use a detachable showerhead. But when I am really sick even this is to hard. I hope that this is just a short thing for you, and you are feeling better in no time. Take care, and don't be discouraged. Your not alone out there. Healing Hugs Suzy

Hi Shelby, yes! that is how I feel. I once had to get something on the top shelf of the grocery store (this was before I had my own) so I got up to get it, and felt real self conscious. which is silly because I had to get in the store to get the cart somehow. But people do give you funny stares if you don't look "sick" like they think you should. I am sorry you got chewed out by that lady. It's people like that that make the "not taking the stares and looks personal" a little harder to do. Thanks for your support. Suzy

Hi Thankful, what you said about your husband is so familiar. In the beginning my husband(and family based on what doctors said) would push me. I was going crazy trying to do everything, and would lay down in between miserable. I would push so hard, and end up unable to keep going. After a while like you said they learned that they ended up taking care of me, where as when they let me go at my pace I could at least do more for myself. I am glad that you don't feel self concious anymore about using the carts. But sorry you had to become sicker to feel that way. My husband won't shop with me anymore unless I am in a scooter. The last time he went with me at costco, that I refused to use one, I got real bad, and although I didn't pass out I was close. I was like jell-o, and he had to get me to a chair (thankfully there was one close by). I had to sit there for a little bit just so I could make it back out to the car. So that was the end of shopping for me. I will definatly have to get me a seat cane. I did see one at the swapmeet for 25.00 I think. Thank you for sharing your experience. Suzy

Hi tearose, you captured how I feel about the "not being sick looking enough" perfectly. It's like being somewhere in between. I keep being reminded by my daughter (smart little thing she is) that it draws a lot more attention when you pass out, then just using a scooter does. Not only that, but I do not have fun that way, and am not part of what is going on. I am just in survival mode trying to find the closest bed! Hi Flop, I can't believe your cardiologist wants you to throw it away! He wouldn't feel that way if he had to walk a mile (more like a few feet) in your shoes. That is so much what I want. The freedom. I want to feel independant. I want to go and not think to myself how big is the store, and how long are the lines? Will I be able to make it? Or will I have to go find a place to sit, and never finish what I wanted to do. I can't get my scooter into my house either. (not without help.) That is why I think he got me the walker. He thought it would help me in the house. Thank you for sharing. Hi mkoven, it just amazes me the way people will react to someone using assistant devices. I always thought the world was more open minded than that, but have learned much different when I got sick. I dont' think my husband understood why I wanted it, but feel so self conscious using is. I am glad that you are no longer embarrassed by using them. I hope I will get there soon, because I know it will give me so much more freedom. thanks for sharing. It helps to know that I am not alone. Suzy

For the last 5 years I have missed out on so much in my life. Of course for most of the 5 years I thought it was because I just couldn?t handle being in public for emotional reasons. Which really doesn?t make sense. If that were the case I wouldn?t feel just as bad at home, and before I became sick I was a very social person. But whatever the cause I have been very limited on what I can do. So I have been having a real hard time accepting this. I keep telling myself I won?t stay sick. I will be one of the lucky ones that gets better with time. But regardless right now I can do very little without becoming symptomatic. Even shopping. (which I love to do.) After seeing how well I do shopping with one of the electric carts at the stores my family decided I needed one. And I have to agree I was excited to do things again. So my husband talked to a neighbor, who had a electric scooter for 50 dollars. Said it needed batteries, and we should price them before we buy it. So he ran to a bunch of stores before they closed, and found some for 21.00 dollars. So that made the scooter just under 100.00 dollars for us. I was excited to get doing more again, but somewhere inside I was still in denial. Getting on it, and going for a long stroll around the block with my family felt real good though. Now I could go, and not feel like I couldn?t make it back. So I have been using my scooter and doing much more than I did before. But I feel very self conscious when I am on it. Over the last couple of days I haven?t felt good, and have been real snappy with everyone. So my husband went shopping for some groceries, and when he came back he was up at the neighbors house talking to him. When he walked in the door he had a walker with a chair in his hands. I shot him an angry look, and said thank you, then tried to get busy in the kitchen. Not knowing what was wrong with me he asked if I was ok. Fine I said, and then tears just spilled out. It was at this moment that what I have been keeping bottled up in me all came to the surface. Why was my question. Why do I need this? A walker. Old people use those. I really was grateful for the thoughtful gift my husband gave me. There was just an inner battle going on. One that wanted the help, and wanted the acceptance. And one that was afraid of what this meant. Does this make me disabled? I want more than that! In truth the walker was very helpful. After he left for the store a second time (I think he was escaping) I sat on it while I made dinner. I want to do things. I really do. I just want to be able to stand on my own 2 feet to do them! Guess I will have to make this a chapter in the book of my life! Do many of you use wheelchairs? And if you do, do you feel self conscious ever? How many of you have had this battle of the wills? My will vs. my will? Thanks for listening Suzy

Hi Jan, Thanks for the support. Unfortunatly when the breathing trouble comes on the only thing I can do is to lay on my stomach with my arms under my chest, and breath the best I can. There is no enrgy left for panic. I usually will fall asleep many times during an episoed, and wake trying to get a breath. Fortunatly it always has passed. My hands and feet go numb especially when I go to sleep with this. But I have been to many doctors, and have tried many times to tell them what happens. They don't believe me , and think it is in my head, so there is no sense fighting them about it. I have a dialated esoapogus. sure that doesn't help matters. Sorry to hear you've been having problems. I hope they are getting better for you. Suzy

Jennifer, you make me laugh again! So healing to laugh! (AT DOCTORS!) But seriously, I found this site when I was looking for information on dysautonomia. It is a vet who got dysautonomia. http://wheredidigetthislemon.blogspot.com/...at-is-pots.html Maybe if we call her she can go into practice for the treatment of POTS! Of course we will all have to dress like dogs and cats! I will be a chiuaua weinerdog. See you all at the sand box! (or looney bin whichever one comes first!!)

Hi everyone, Thanks for your replies. Sorry I haven't gotten back sooner, I haven't been doing very good. Hi dizzyde, yeah me too. I don't go to the fitness test, except once in a while if I think I am really ballanced that day then I try, and it actually was much closer to my age then. I felt better though, because my son who was 8 at the time did his test, and it said he was 87. But I don't think he understood what he was supposed to be trying to do. I like when new exercises get unlocked also. Hi Katja, If you don't mind my asking what is the distal autonomic neuropathy? I hope you don't have the EDS, but if you do I hope you get it diagnosed. It seems so many people have so many reasons for there POTS. None of which ever seem to be from deconditioning. I have positive blood tests also that SHOULD prove my symptoms to the doctors who want to assign there own causes, but just getting them to listen! I'm sure you know how that goes. My TTT was second to my blood test. Thank you for sharing. Hi Morgan, I am so sorry for all that you have been through. I can't believe they call that deconditioning. Deconditioning happens when your body is inactive for to long I thought. It sounds obvious to me that it was caused from the ablation. I am glad the doctor validated you when he said there is definatly something wrong with your electrical system. It is bad enough to feel so sick, but to be told it is in your head is like stepping on you when you are down. Sorry you went down and broke bones. I am always afraid I will hit my head, and make matters worse. Oh would you mind telling me what the ablation is? I did read about it on another post, but don't remember exactly. Suzy

Hi Carinara, Thanks for sharing that. She is actually my favorite, I watch her videos all the time. I was watching her when I found this other one. I think that Kyli is a good spokes person for POTS. And her videos are entertaining. I hope you will make a video in German. If you do be sure to post it here! The more info out there the better. There is also this website from Miss South Carolina International, who also has POTS. http://misssouthcarolina.blogspot.com/2008...for-you-me.html Glad to see there are other late nighters. (or if you are in Germany? what time would that be?) Take Care, Suzy

by Phil Fischer MD. Anyone know him? one more. Suzy

Hi Jump, thank you so much for that. That really does give a good explanation to Pots, and deconditioning. It really is a balance, and one that I am having a hard time finding. I laugh because I punish my poor body for not being able to do things it used to by forcing it to go, and in the end the only one who suffers is me. Maybe I will print that out(this whole subject out for that matter, lots of good posts on this), and the next time I try to let someone effect my way of thinking about it I will read it and remind myself it's not a defect in my behavior. Thanks a lot. Hi dizzyde, I like that winning the lottery analogy. That was how I felt to. yee haw! I'm free I'm normal again. I hope it doesn't slip away for you. I have a wii fit too. I have a love hate relationship with it. It judges your age partly on your balance, and I have none. It said I was 73 years old! I'm only 37! But I like the exercises on it! they are fun, and I am hoping it will give me more balance. Lizzegrl, The wii fit is really a lot of fun, you learn balance, and get fit all while having fun playing a video game. here is a site on it. http://www.nintendo.com/wiifit/launch/?ref...+fit+what+is+it Suzy

Hi Julie, That sure would explain a lot of what I have been going through for the last 5 years. I get that tightness of chest, and the only thing I can do is ride it out. And any time I have trouble with eating I get these worse. I finally had to quit going to the ER for it. They would never do anything, and usually made me feel worse. There was one time that I was pre-treated before an MRI with dye to make sure I didn't have an allergic reaction because I had already gotten hives due to the dye you drink. (no one is allergic to this!) but they pretreated me anyways, and I felt better instantly. So much so I thought maybe they had snuck in a shot of anti-anxiety drug. I figured that was how it was supposed to feel after you take an anti-anxiety drug although I never did. But on the down side a few hours later I had such muscle tightness I couldn't move. I assumed it was from the steroid, or the dye. Sorry you had a crazy day at work. Thank you for jumping in last night. I can always think back later and say maybe this is whats wrong, but it's hard to think when you feel like that. I wish I could go to Boston! But I will find something. I got my release form, and will fax it back to them on Monday. Then I'm on my way. I do have one question for you if you don't mind, is this something you have for life, or can you "grow out of it?" Thanks so much. And I hope you have a extra relaxing night after a crazy day at work. Hugs Suzy

Hi, My experience with both anxiety meds, and antidepressants were before I was diagnosed. I had very negative reactions to them, and they made my symptoms more severe, and added many that I didn't have before. I improved greatly after I went through withdrawl. If you would like to know more detail I'd be happy to tell you just PM me. Suzy

Hi, just wanted to tell everyone I am breathing easier now. I read your post Jennifer about the MCAD, and went on a mad hunt to find it. While I was doing that I got almost an entire dinner in, and I feel better. Which was interesting becase I have noticed that I get this a lot when I can't eat. And as I was reading, I read the about the "can't get too anything. Too happy, sad, and one was hungry." I feel like I've been ran over by a truck now, and am wiped out, but at least I'm breathing. I can't say thanks enough to everyone. When I didn't know what to do I came here. And am so glad that I did. I am going to try and hurry, and get the MCAD thing figured out. I am waiting for paperwork now, but am considering going to Phoenix just to get it and get this thing figured out. I don't want to keep going through this. Thank you Julie for the list of doctors. I will be calling one of them. Thank you, thank you, thank you, everyone. Hugs Suzy