AJVDK

Wow that is great! I am happy for you! Amy

Thanks great I am happy for you! Amy

Gald to hear you are back home. PLease keep us posted on how you are doing! Amy

Welcome!

Well starting last night I been working on going off my old meds, and will be starting my new meds in the next week. When I got up today I felt so bad. I am dizzy evertime I stand. Its odd I thought the meds didn't help at all, but wow it is bad today. Will it get better in the next weeks? I am going off of the Florinef, (I am taking one every other day for the next week) Metoprol ( I was taking it 4 times a day am am also stopping this ( 2 times a day for 4 day, 1 times a day for the next four days and then done), I am also stoping the Theophylline, and Cymbalta. Then I will be starting Lexapro, and Clonidine in the next week. ( I am staing on Aspirin, Ambien, Sucralfate, oxygen) Sorry for stressing out, I am just going home on Sunday, and I want to feel somewhat ok. I havn't been home in a long time, and I just wanted to feel ok. So any ideas of anything I can do due to help get thought the next few days, to the next few weeks to try to stay on my feet! Thanks, Amy

When you talk to her next tell her we are thinking about her, and hope she gets better soon! Amy

Sorry I hsve nothing to add to the topic, but I thought I would drop a line and say I like the "POTS" sign. Thanks really good! Amy

Hello Everyone! Well today I went to another doctor appointment. My husband went with me. For the frist time the doctor turly listened and tryied to help. (altthough its only because my family doctor called and talked to him and said how upset he was with my care.) It was odd though. In all my years of going to the doctor I have never had a nurse sit in on the whole appointment. I felt like she was there for a witness as things have gotten that bad with my doctor, myself, and then my family doctor getting involed. But it doesn't matter as I finally am getting good care. During the appt the doctor keep shaking his leg, and twiching his hands, and keep messing up while typing the infomation in the computer, he was more uptight then I was after everything was said last week. Can you beleive that? I am happy to have a family doctor that cares so much about my treatment. When the doctor came in he had the new artic that Dr. Grubb just had printed, about the dofferent kinds of POTS, and the meds. The doctor is going to treat of that list and see how I do. The one thing that scares me is he said as bad as things are they are not sure if there will be a large improvement. I don't want to live my lofe like this, but at least for the 1st time they are not giving my fasle hope.The doctor said we are going to stop all the meds as I have not improved. I have to go off sloe on the metoprolol, theophylline, and florinef. They are going to start me on Lexapro, and Clonidine. Then when I go back in a month they are going to add Erythropoietin. Have any of you ever been on Clonidine or Erythropirtin? Has it helped? Also at the next appointment we are going to talk more about options of fixing the hreat problems I been having he said there are a few options, a differnt pacemaker that has more options for settings, or going back in and fine tooning the av note..... So at least there is some hope of the heart rate problems also! I am alittle worried about making a change in the meds, but at the same point I really have nothing to lose as I been feeling so badly. Amy

Happy B-Day Roselover! Hope it a great day! Amy

Congrats on getting out on your own. That is great! I hope you are able to keep it up! You will have to keep us posted!

Hello Everyone, Please say a prayer or keep mr in your thoughts. I have an appoitment to see an EP doctor on Thursday. My family doctor called the doctor and explained how upset he was with my care. He told them I have been to Cleveland, Mayo, and the U of I, and now I just need someone to follow my care here. He explained how I need someone to finally follow my care, and really want to help me get better or at least try to help. That if he was not interested in helping to let him know and he would find somone else to take over my care. This doctor said we would like to contiune to follow my care, and wants to see me right away and see if we could come up with a treatment for my POTS, and look into my pacemaker and see whats going on! I don't want to get my hopes up as I have been let down before, who knows maybe this will be the time I get the care I need. Also: Guess what, this was really awsome! My family has been coming to this site. In fact many of my family members have been reading information, and my mom has told everyone about my story listed under the story part of the web page. I can't beleive how there are starting to understand everything I/we go though. In fact a good friend of my mom's order 5 bracelets, gave one to my mom, one to my aunt, and then to 2 of her other friends. When my mom told me this last night I got off the phone and just was so happy to know they are starting to understand! I hope they will continue to seek for information when it come to POTS/ Dysautonomia. I am just happy that the next time I go home that there will be more understanding of whats going on with my body. Take care! Amy

Congrats! I am happy he was able to help you out. It will be nice to have on the Hot days. Amy

Good Luck with the testing. I hope you find some answers to whats going on! Amy

Sorry to har you are feeling bad today. I wanted to let you know that I take Cymbalta. I take 6o mg once a day on top of all the other drugs. I am now sire really how it works but I can say I am going alittle bit better since I started it. I am not sure why Cymbalta seem to be the new drug, but I was told about now by my family doctor, who was told by Cleveland for me to try, and when I went to the cadrio doctro they said it the new drugs, and gald I am on it. ) Really not sure why, but I can say like I said before I am not so down all the time. Good luck! Amy

Wow! That's great! I am sooooo happy for you! I hope it keeps getting better for you! Amy

Wow, what a night! I am hoping you are feeling better now! I am very thankfull for the brochers too. It was nicw to hear about more health care workers learing about POTS, who knows maybe some day, many will understand what it is like.

Well I hope you get you "pots feeling on the monter" it will be a great thing as it will help the cardio doctor be able to treat you better. I know its not fun to worry about the heart rate. I wish you the best of luck! Are you wearing a 24- hour, or a 30- day Holter? I wish you the best of luck! Please let us know what you find out! Amy

Bama, I know how you feel I am like that all the time. I am hoping that one day I wake up and don't feel like I am drunk just going thought the day.

Nina, I got mine when I was still working full time. We talked to my family doctor, and he said it was a good idea, as I can not walk very faw with out needing to take a break. So I got mine under the DNV for being in a heart class for not being able to walk more then 200 feey without taking a break. Also I would think if you have a good relation ship with your reg family doctor I will beat he would give you one, and hopfully he would know how hard it it for people with POTS to be outside. I was really surprised how easy it was for me to get mine, in fact hear in Iowa they even gave me two so I have one in my car, and one in my husbands car. They where really nice at the DNV too. Good LUck I hope you are able to get one! Amy

Sorry to hear about your aunt. I hope she will soon understand what it is like for you. Sorry you have to listen to that.

Just wanted to drop a line and say Hello and Welcome! Amy

Well I just got back for the doctor appoitment with my PCP. I told him what happened the day before and he when ahead and collect the cadrio office and expressed his concern to them. I am happy to have him on my side. He siad we will find a doctor to take the case and follow up with me regular, and if they will not, then we will have to look into others to help find the care I need. So please keep your fingures crossed I am hoping to find someone that will listen here close to me. Thanks for all the support you all have been giving me!!!! Amy

I know I am tring to stay positive, and keep my head up, but after yesterday, I am ready to give up. I am starting to beleive there is nothing going to help. I can't beleive how how cold heart doctor can be. I went to my doctor appointment yesterday. My 1st appointment was with the pacing team. The ywo women hooked me up, and started to run the pacer test, and recive all the information from the pacer. The women asked me who I am feeling. I told her how I feel my chest has been feeling with some heart racing again, and odd beats where the pace kicks in more like skip beats. She said well the pacer only show one race heart heart that lasted in was on 1/13/06 and was 180 beat...... I said I know there got to be more. So the looked at the setting it only records if my rate it over 175 bpm. Well to me that kind of dumb as when I got tacky before it was 140-160 range. So they got done with the pacer and where looking for the holter result, which where not done yet, so I still don't know what that showes. Then she says to me you haven't been hear in a year, and you have gone for referals, what would you like us to do for you? I am like HELLO why do you think I am here. I nicely said I am hear to try to receive local help and treatment with my POTS/ NCS/ my pacer you put in, and help me in the treatment. ( Right now I am hot, I am trying to keep it togeher, and this was the resaon I left, I alway thought they didn't care, or I wasn't some east fix.) So they move to over to another room where I waited for more then an hour for the PA to come. Mean while I can hear them making a few commets out in the hall. Well the pa finally came in and said well I haven't seen you in a while. He said tell me whats been going on I told him I went to Uof I and they said I have POTs, and that I went to Cleveland and they said I have low blood volume, and rapid blood flow, and at Mayo they said I have NCS, and POTS. He told me well ok what do you what from us? and again I told them what I was looking for. I told him about the results from the TTT, and the other blood test, and ECG, I had the mediacl records with me. I am like do you want to see them. He said no. He said back before I left they said they beleived there findings where I had neurally medicated syncope. But it doesn't mateer because they are all the same. He told me it doesn't matter if I have POTS, NCS, Neurally medicated syncope. He went on to tell me he is surpised I have not out gone it yet as I am 26, and find it hars to belive I am getting wrose as almost everyone out growes syncope. So I asked do you thing I am going to get better? He said I don't know I thought you would have by now. This is really good they did a TTT test back in 2000 there, and then a new TTT in cleveland in 2005. He told me they no longer do TTT as they really don't find them to be usefull, but he would had bet $100.00 that I would had show B/P changes. He then when on to say that we treat them all the same, no matter if it is POTS NCS, of neurally medicated syncope. He said I should increase my florinef, and midodrine. I should follow up if things don't get better, or I could always go back to Mayo, or Cleveland. ( Can you belevie that, I only when for the referals, because I was not getting better and not receiveing the care I needed from them!) So I don't know what to do, I really don't think they are going to be any help. So I am beganing to think its time just to give up on finding a doctor here, but with my new insurance I am stuck here. I don't know what to do. I am begaining to think I am crasy, or losing it. I can't belive how doctors/pa's can treat people. All I want is feel better and get on with my life. At 26 I don't want to be stuck in my house, I should be working and having a life, that all I wan't. Sorry to vent I just don't know where I go from here! Amy

Sorry to hear about how bad yu are feeling. I how things turn around soon for you. Amy

Linda, I have been on the Cymbalta about 6-7 weeks now. It was helped some. I started at 30 mg, and then went up to 60 mg. It been the best ssri I have been on. The only side effect I had with it was I had some wegith loss in the begain, and I felt like I didn't want to eat but, it went away. Now I am not having any side effect from it. Amy