AJVDK

Wow, I am happy you are doing so well. Its nice to here some hope. I am really down right now, but its nice to here good things. I hope things keep going good for you! Amy

I had alot of PAC's and PVC'c, I have found that betabolckers have helped alot. The done side to that is that my BP goes to low now. You should talk to youe doctor and see what they can do to help you out! Good luck, hope you feel better soon! Amy

I was on Florinef for a while, but due to the boalting I the doctors stopped. THey are going to start it again, but this time a smaller amount. You should talk to your doctor and let them know why you are worried, and maybe they can help! Good luck! Amy

I just started Cymbalta. Not sure if it going to help or not, but I can let you know! Amy

Hope you feel better soon! Amy

Congrats on the insurance. Sorry you had a such a problem! Hopfully once you get your card you will no longer have any problems! Amy

Congrats!!! I am soooooo happy for you!!! Amy

Thanks for the up date! Tell her we are thing about her, and hope shes out soon! Amy

I wish you the best of luck. I hope that this gives you time to get use to the idea of being gone. I also hope that once you get into the rehabilitation center things will start getting better for you. Good Luck! Amy

Happy Birthday! Hope it's a great one!

Well I just got back for the post office I over nighted all my paper work to SSDI ( Disablity office). Keep me in prayers or thoughts PLEASE. My phone interview is at noon on the 12th. I am soooooo worried this is not going to go thought. The worse part is that it take90-120 days to find out if your approved or not, if you are not approved then you get to start all over again. I am hoping it goes though the 1st time, but don't want to get my hopes up!!!! Also I went to the doctor last night and still getting the same thing, we just need to wait and see if anything gets better, and hang on to hope that a new drug will come out, and work for me. I asked him since I feel the betabocker is not really working, and I am getting dressed if I could stop taking it. So he just added a anti-depressent to the mix. ( like I am not taking enough drugs as is.) I asked him about triny IV fliuds, or Erythropoitin, or Mestion, as I have tryied all the other fun drug, and things that could help with POTS. he said to call Cleveland to taoday andd see it they have any ideas. Last time i called it took them 3 days to get back to me. I not understand it when you are there I got the best care, they sat done and explained everything, but once you leave the follow doesn't seem to be there. Anys sorry about my caring on....... Hope you all are having a great day!!! Amy

Congrats!!!! I am happy for you!!!! Amy

Thank you so much for all the support. I still am trying just to make it though the day ringt now. Wow time goes so slow when you are home. (Or at least for me.) My husbad has been great so far, and somw of are friends stop over last night and brought movies, as they know I can't do alot. It;s nice to be aroung people. Today I am all alone. I been sitting hear trying to plan out the next week so I try to stay busy so I don't get down! I know I can do this. Well I am off to take a nap. I am so tired all the time! Again thanks for the support! Amy

Well Fridy was my last day of work. I can't not beleive how hard it was on me. I loved my job, but I thought it would be earier then it was. I kept it togeher all day. It was when I got out to my car and sat down, I lost it. I begain to cry. I think the hardesrt part for me is that my life is changing. I can't controll it. My health has began to so much worse..... this is just not getting better. Now it comes time for all the disablity stuff. My phone call with them in on Thursday the 12th. Please drop a prayer or thought, I really need this to go though. I am hoping since my doctor is the one telling me I can no longer work, that will help, but I don't want to get my hopes up. I am trying fingure out what I am going to do. I am very worried about my depression as well. Over the last 2 years I have done pretty good. I got down from time to time, but now I am getting really depressed. I am seeing my doctor regarding it, and a theapist. I just don't want to go down that road again, and know its coming. See if I am not busy every min. of the day. I find the thoughts of drinking and using come up, alot when I am depressed. So I am going to try to find things to do. One thing I know I can do is be a better mother. I son for the 1st time is not going to go to day care but stay home with me. I think this is going to be good, but I am worried about the bad days, when I can't get out of bed. My husband family lives in the same town and they are going to help out. Which will be nice. I am also going to try and find a hobby, when I feel up to it I can work on. I think this will also give me time to try to find the right meds, doctors, and hope to later down the line recover or at list find a better quaility of life. I want to thank you all for all the support over the last few months, its been very hard on me, but one day at a time! Amy

Welcome Home! Glad you found the web site! Amy

Hello, Midodine has worked for me I have taking it up to 6 times a day at 5 mg, but find it works best for me at 5 mg 3 times a day. Good luck with the meds. It may take a while to get the right meds but hang in there. ( I need to tell this one to myself ) Happy New Year!!! Amy

Thats for all the imput! I am going to stay home on tuesday and try to get into see my doctor. I has had a chance to rethink what happened today, and I think I just need to look on the positve side I am here, and I will do the best that I can, and try to find the best treatment that I can one day at a time, and not worry about want people that don't know about POTS think. It there loss. It that doctors loss that he doesn't know how interresting we are! Anyways thanks for being here for me. I am going to tell my doctor about all the new things going on and see what happens! I am very worried that there is somthing going on though. I am getting very worried about forgetting things, at frist it was a funny joke, and to others, but now I am very worried, also my vision is changing to fast, and my pain un my head will not stop. It sounds dumd but it feels like I have a knief stuck in the back of my head where the neck meets the back of the head. Does anyone else ever have anything like this. I am worried, an keep think is going to go away, but that why I am so upthight. I am worried it somthing more that POTS and NCS......... I just don't feel right!!! Well thanks for listing have a great night!!! Amy

Well over the weekend things got even worse, from leg pain to backpain to no sleep last night. This week is my last week of and work, and on my way to work my eye sight went I could see more then 15- 20 feet in front of my car and it was bruled, and I was very dizzy. When I got to work i found myself graying out and not even being able to hold a full convestion. Things though the day got worse I left at 3:00 pm the thought well my family doctor is out today ( he's handling most of my care, and with Cleveland). So I though I would try a walk in clinic instead of going to the ER. I have a $1000.00 I have to pay before the insurance kicks in and pays (new year). Don't get me started on BCBS. Anyways so I had to wait in the waiting room for 45 mins to get called back the hole time I am dizzy and my head is in pain and there are children all over screaming ( I feel bad for them but I was just not feeling well.) I should have know that when I heard the doctor ask the nurse she has what??? What is POTS, and what with the blood volume?? So then the doctor comes in and acts nice even though I already know he doesn't know anything. So he ask all these dumb questions, ( never checks my b/p, says my heart sounds ok, my heart was paced at the time, I told him my pacemaker paces most of the time. ) I told him I was worried as I almost passed out today and that I felt really off, I told him I had a bad pain in my head and neck, and that I dizzy most of the day. So he has his nurse drow blood, which she could get it out of my arm for a cbc so the just take it off my finger. He comes back and says, everything looks good, well you may be alittle anemic, or you may have a viral infection?? So I asked him if there was anything I could do about the head aches, and neck pain, and my vision problems today, he said when you get home you could take so advil. He said he feel sorry for my and hopes I feel better. I turly beleive he thinks I am crasy. I hate Doctors........ Sorry to vent, I am soooooo mad and I still feel bad. Plus now I am out my copay, and didn't get any help. I am going to try to get in to see my doctor on tuesday, but grenally it takes a few days to get in! Well sorry to vent! I hope you are all having a better day then me!!!!! Amy

Michelle, Happy New Year to you too!!! May is be a great year for you! Amy

I know this is the best and hardest year of my life. I can say though I am happy I finally found out what was going on, and that I am not crasy! ( Well maybe alittle ) I am gald to Know what I have is POTS, NCS, and MTT. I know its not the best thing in the world to have but it nice to finally know! I do get down from time to time, now I am trying to look at the postives. Each day I am given, is the day I choose to make it. Some days are slow, and time to rest and to slow down, this is the time I can think about what I want to do with my life, When I am lucky enough to get a good day, this is the day to to the fun stuff, to me anymore the things that make me happy are the small things. Like spending time with my husband and son, going out to eat, having friends over. The best thing that could of happen fianlly tookplace, a chance to look at my life. I was working 40-60 hours a week, bring work home, not being a very good mother, or wife. Now I can no longer work due to the POTS getting worse, and can no longer do alot of things, but the one nice thing about POTS is we have time, I have time to change, I have time make the diffenerce, I know it's going to be hard, but mostly I want to become a better person, and here is my chance. By going on disablity I am going to have a chance to start over. I know I can't do alot of things, that other mom's can, but I can be there for my son Blake for the 1st time. I can be a good wife for my husband, and I can become a better friend. So for me the best thing that happen this year is that I finally open my eye, and want to change my life. The other great thing that happened is I found a great doctor will to trat me and make sure I get the treatment I need. Happy New Year to you all!!! Amy

Morgan, I hope things start getting better for you. Just tell yourself one day at a time. I know it's better said then done, but good luck, I turly hope things get better for you soon! Good luck!! Amy

Well I wanted to drop a line and wish you all a Happy New Year! Let's hope that 2006 is a year for all of us to feel better, but if not it nice to know you are all here!!!! My New Years goal's is to slow down and enjoy life. Take time to try to find what works for me, and what gives me the best quality of life. O' heres an update my disablity phone call, and paper work in due in on Jan 12, then it 90-120 days of waiting. The good news is my doctor is writing a cover letter for my medical records, and the United States Senater of Iowa is going to follow my case so hopfully that will help it to go though the 1st or 2nd time!!! (Let's hope!) Also the O2 is helping, I am getting sleep, and it taking the edge off the chest pain, and head pain I have, plus it give me a chance to think again!!!! (Not sure that is always good, LOL) HAPPY NEWS YEAR!!! AMY

No you don't need a referal, but I did have to wait for my insurce to go thought to go as I live in Iowa. I took a while but I got in, and it was worth it. I found out I had low blood volume and MTT. SO it was good to know what was going on. Good luck! Amy

Good luck with the pacemaker! One thing I can say is I thought It was going to be the worst surgery, and it really wasn't bad at all, I fetl more pain when I had my 1st ablation whoch wasn't that bad, plus due to me "drug problems" it the past I wan't to remind "clean" as I was worried so I did it with no pain killers. I think I was crasy, but really it was bad! I wish you the best of luck, and help it help you out!!!! Happy B_day to! Amy

Hope things get better for you, but I know what you mean. We all need to sick together tell we all get better. Hopfully that day will be soon. I never thought that this would rule my life!!! But one day at a time!!!! A keep dreaming of a better no potsy day! Good Luck hope you feel better soon! Amy