AJVDK

Sorry to here the door got the best of you! Hope thing get better for you! AJVDK

THANK YOU ALL FOR YOUR SUPPORT. gUESS WHAT THE DOCTOR NEVER EVEN CALLED TODAY CAN YOU BELEIVE IT? SO I CALLED THEM AND WAS TRANFER TO A VOICEMAIL OF THE NURSE WHO HAS NOT CALLED ME BACK....... SO NOW I AM NOT SURE WHAT TO DUE. I WOULD LIKE TO TRY THE IV FLUIDS, BUT I DON'T EVEN REALLY HAVE A DOCTOR TO TRY IT WITH. I MADE A APPOINTMENT WITH MY FAMILY DOCTOR TO SEE IF HE HAS ANY IDEAS. MY FAMILY DOCTOR IS A GREAT MAN, WHO DOESN'T KNOW ANYTHING ABOUT POTS, BUT SEEM TO WANT TO LEARN. SO I HAVE AN APPOINTMENT ON THURSDAY. MY ONLY PROBLEM IT I KEEP FEELING WORSE, I AM SCARED, AND DON'T KNOW WHO TO TALK TO, MY HEART BEEN RACING OFF AND ON TODAY, EVERTIME I GO TO STAND UP I FEEL VERY LIGHTHEAD, AND DRIVNG AGAIN TODAY ON MY WAY TO WORK I STARTED TO BLACK OUT, I KNOW I NEED TO SLOW DOWN, BUT I ALSO NEED TO GO TO WORK, I CARRY ALL THE FAMILY INSURANCE AS MY HUSBAND IS SELF EMPLOYED, SO THAT JUST ADDS TO THE PROBLEMS. ANYWAYS THOUGHT I WOULD LET YOU ALL KNOW HOW IT GOING, AND IF ANYONE HAS ANY IDEAS ON HOW I CAN FIND A DOCTOR TO TRY TH IV FLUIDS LET ME KNOW! THANKS AGAIN FOR ALL THE SUPPORT!!!!! AJVDK

HOPE IT WORKS, YOU WILL HAVE TO LET US KNOW! GOOD LUCK WITH IT! AJVDK

THATS AWSOME!!!!! I AM SO HAPPY SHE GOT TO DO THAT, AND THE STAFF WAS SO NICE! IT NICE TO KNOW THAT THERE ARE PEOPLE OUT THERE THAT CARE! AJVDK

GOOD LUCK! YOU WILL HAVE TO LET US ALL KNOW HOW IT GOES! AJVDK

Hello All, Well today I went off to another appointment to see my doctor. So I got in my car and drove two hour to see the doctor. On my way there I found myself feeling like i was going to pass out, but didn't but kind of doing that black out thing........ not sure it you know what I mean but I am driving and the next thing you know you are 1/2 in the lane and 1/2 on the sholder. Thank god Iowa put those things on the side that make you cars shake like when you are getting close to a stop sign to know you need to stop, so anyways I was not having a great day, and was not feeling the best. Today I didn't have anyone to drive with, as I thought I would be fine so I turned done the help ( bad move on my part) Anyways I get to my appointment, 1st off I should have know somthing was wrong as I only had to wait 5 mins to be called!(LOL) os I get back to the room and they check the b/p, which was low, no big deal, and then they pacemake guy came it to check to see if there wher any events over the month since my last appointment, there are times where my haert rate is still going as high as 180-190's. I had been feeling like I was having fast heart rates again, but to me, its hard to beleive after having two catherter ablations to the s.note that I am still having this problem. I am just up set and got the one answer I been waiting for a doctor to say, but when they do it the biggest let down. My doctor siad I hate to say this to someone that is only 26, but we have tried everthing, also most of things we would try the other docotrs already tired before you got to us. he siad he felt the meds, may be making it worse but not sure, and does feel there my not be anything to make this get better. He said I just need to learn to deal with being tired rest more, and learn my limits. He said they really are out of options, and treatments, and are not sure what else to do. He said they a as fustrated as I am that I am not feeling better. (I guess I respect they for saying they don't know what to do, but now what?????) He said we would call me on tuesday after he talked to another doctor..... ( so I am sitting here thinking what are you going to talk about?????) So this was my day, I am just down, as I was hoping that they would come up with some great idea of somthing new to try, or anything just to hang on to some hope that I could at least improve. I want my old life back ( I am sure this is what you all want to here me going on about how I want to feel, but how do you deal withit????) I just so hard to keep going for the 1 to 2 good hours I may have that week. I guess I never planed life to be this way, plus I guess I was hoping there, was just a med I could take, or so on to fix it and get on with my life, plus I don't have anyone really taking the time to understand whats going on. Anyays thought I would drop a line to is if anyone has any hope, or ideas on where you go form here! Thanks

Hello all, I just thought I would drop a line and see if anyone has any ideas. I was told in June that I have POTS only after 5 years of being passed around by doctors, given tons of differnt heart meds, they even put in a pacemake to help, but each time there where no big improvements, I was startubg to thin I was carsy, but anyways they started me on Theophylline 200mg once a day, midodrine 5mg 2 times a day, and Bupropion 100 mg twice a day, about three weeks ago I called my doctor and siad I am still not feeling the well, my heart feels like it is skipping beats, and then takes off only then to crash and have my pacemaker kick in. I been very dizzy, and my blood pressure is staying very low, I am tried all the time, and I can't seem to drink enough water. When I sleep I wake up to feeling hot and sweating all over, I somtime even have to get up and change close as I feel so wet. So last Monday they add fludocortisone. Now I feel the same plus I feel so bloated I can't stand it, my sock are even leaving line on my legs in is gross, and I hate the way I look, I called the doctor and he said to wait and keep taking the meds untill I see him on Monday. I am so tried of feeling this way, and the meds don't seem to be working! My I even called my family doctor to see what he said, but it was the same, plus he doesn't know anything about POTS and the Doctor I see for POTS still doesn't seem to know alot, he maily deal with the heart, he was a refferal for my pacemake and was the one to tell me I have POTs. I am just trying to find the right drugs. Have any of you tried any of these and did they work for you? Does anyone have any ideas on diffenent kinds of treatments? Amy

Thank you Emily, I am so thankful for this! I can come here and everyone understands! Have a great night! Amy

1.) Amy 2.) age: 26 3.)POTS 4.) Diagnosed at age 26 5.) Iowa 6.) Worst: dizziness/ blacking out, tachycardia, very bad chestpain, headache, extreme fatigue 7.) Best: Fatige, mild chest pain, mild headache 8.) new durg I am on Wellbutrin, florinef, mitodrine 9.) Just starting in the POTS world, so just getting started on meds! ( but not had the best luck! beta blokers didn't work well.

Welcome back poohbear. I hope everythign works out for you! AJVDK

I have only gone once, and would never go again, but i think I was at the er so many times I could not even count anymore. I feel dumb now knowing it is just the POTS, but I truly thought with the cherst pain I was going to die, I guess now I feel very dumb. But look at it this way, At least I am atill here! One day at a time!!!! Amy

I just stopped taking it lask week. I was taking 2.5 mg at 8am, 11 am, 2pm, 5pm, 8pm and 5 mg at 11:pm. To me honest I think it worked better when I took just 5 mg in am and 5 mg in the pm. Amy

May be this is a dumb question, but what is Vanderbilt about? Amy

I wanted to thank you all for you great words! Its been really hard for me. I been sitting here over the last few weeks truly trying to tell myself, I been trying to tell myself maybe I don't have POTS, every other doctors been wrong. I know that sound very bad, but I wanted that quick fix, "take these pills and you will feel better", I was even starting to think "It's all in your head" thing was a good thing. I guess I am still at the trying to deal with this yet, I am having a hard time finding a doctor that wants to treat me, they been playing with the meds over the last 8 weeks at the U of I, and I think they are more guessing then really know what they are doing. I just been getting worse, as with the chest pain, the dissyness, heartrasing and the biggest thing I am tried all the time! DO you all think this is just POTs? DO you think maybe is time to find a new doctor? Does anyone know a good doctor in the midwest? I am just wanting to feel better, and I really am just looking for hope, support, and a doctor that knows about POTs! Thanks again for all you support! Amy

I am not sure on this one in Jan. o4 I had an ablation and then in July 04 I had a pacemaker put in. Due to the amout of ablading my heart rate when too slow when I was sitting for too long, or when I was sleeping. The one thing I found out Is that my herat rate still takes off from time to time and I still feel like passing out, and somtimes still pass out. The one good thing about a pacemake is they are somtimes more app to try meds as your pacemaker will stop you heart from slowing down to much. They one thing I will say is I thought my pacemaker would change my life and make me feel better, unfortently I was not that luck, but I have heard of poeple it has worked for! Good Luck with everything you will have to let us know what happen! Amy

Chrissy, Hello, Welcome! Have a great night! Amy

Hello, I understand where you are coming from. My sons preschool meet in greet is next monday night and I am not looking forward to it. I am worried that they are going to ask me to help, as I am always trying on too much as I am afarid to say no, my problem it i over do it and worry about it after, the problem with that is I am ended up done for a week of tow at a time, and now i feel like the good days are far in few. Do you have anyone that could help you? Or due you know one of the other parents you could have help pick up and take to perschool when you are not feeling well? Good Luck! Have a great night! Amy

Kristen, Thank you sooooo much for the support. It means alot! Thanks Amy

Tracy, I nice to know I am not alone. I am trying to slow down too. Some days it just had to stay postive! But just coming here makes me know I am not alone! Thanks Amy

Carmen, Hello, I had a dual chamber pacemaker put in July of 04. THe ooacemake has helped with the bradycardi as my heart is paced 97% of the time. The bad thing is your heart will still take off and race when it wants too. I have phine checks every 3 months and a vist with the EPS Doctor once a year. It not so bad, but I was looking for a big diffence when I got it but in, I thought it was goign to change they way I felt only to but to much hope into it to be let donw. Now pacemakers are get and I am gald not to have my heart slow down any more as my heart rate is set at 70 beats. Just don't but all the faith in the pacemaker as I did. I was a big let down for me. But keep it mind this was just my feelings, they have helped alot of people! Goodluck with what ever you do! Amy

Hello, I take theophylline 200 mg er, fludrocortisome .1mg, bupropion 100 mg twice a day! Have a great day! Amy

Hello All, First off I would like to say thank you to all of you for the support I get here. It?s hard as this seems to be the only place that truly understands what I go though! Well I am trying to slow down and learn how to live day to day, and not due to much, and not to over due it! It?s been very hard! My son wants to go all the time, but I think overtime he will understand that sometimes I just need to slow down. I saw my family doctor twice this last week, as things are just not going the best. I been having my heart take off racing, and then will slow down as about fast as it takes off. Lucky I have a pacemaker to help when it slows down!  My family doctor got a hold of my heart doctor, and they made some med changes again. So the changed them on Friday. I am hoping this will made things get better. Why is it once you get down it takes so much to get back up, and try to get going again? I been getting a lot of rest, doing everything they say, and still feel down. I have been having really bad chest pain, lightheaded, shortness of breath, and my left arm been feeling numb. I last time I felt like this I went to ER, I sat in the chairs for 2 ? hours before they would even see me, and the got me back to a room, and the nurse starting freaking out as my heart was out of rhythm, the drew some blood and came back and said my potassium was low, they gave me some potassium and said to follow up with my family doctor the next day. I still was feeling bad when I left, so the next day and I went to the doctor and my potassium level was 3.6 so it was fine. It finally went away, but the heart skipping beats is this normal? I took a stress test in June heart was fine the hole time, but on the recovery, I would skip beat, then the pacemaker would kick in and then is would go fast and then skip beats again, when it does this it last no long then 15-20 mins. But it just makes my tied. The doctor I have doesn?t seem to know a lot about POTS, but after 5 years of going to doctor, thinking I was a mental case, at least he listens to me. My first heart doctor thought I had tacacardy only so I had a EPY study and then they ablated some of the areas in my heart, after this study I started feeling the same way again, so they went in and did a 2nd ablation where then they ablated too much and they but a pacemaker in at that time, this was July of 2004. A month after that I still wasn?t feeling that great so I got a referral to Mayo, where they first said it was in my head, then after so of the testing cam back they thought it just my pacemaker not working right. So they made so adjustments, and they sent me home. Due to Mayo being a long why form home I want to find a doctor close to home, that when I went to the Uof I. At my 1st appointment after the treadmill test, and the EKG and Looking over my medical files for the last 5 years they said I had pots, now I have this and I find myself, wishing there was a quick fix. The day I had my pacemaker put in the doctor said once you recover from the pacemaker being put it you are going to fell great again! I guess I was looking for the quick fix, or the right med and I would feel great! It so hard to stay positive not knowing how I am going to feel day to day. 3years ago I was playing league hockey, out hiking and biking, now I am lucky if I feel like I can go to work today. I am to dizzy and try to skate any more, plus if I get over heated now I seem to me down for a few days. How do you make the lifestyle changes? How do you learn that you can not do everything you once could do? Maybe this makes mea bad person but I find it hard to deal with. Maybe it makes me a bad person that I want more???? I know I need to look at today, and focus on the here and how but it hard for me! Over time does it get better? Do you learn to know your limits? If you live in the limits do the good days start coming more? I am just looking for answers on ways to better cope and living with POTS!!! Amy

Hello all, Last week was a big week for me, I worked way too many hours, then came home to help my husband with his paper work with his new company, and pulled off a big party for our colse friends. By Sunday night I was so beat that I just wanted to sleep for a full day! When I wake up to my alarm clock on Monday, I got up to my heart racing and feeling hot than cool and I was beat red when I lloked at myself in the mirror. My doctor that I see for the pots is 2 hours away and is always seems to be too busy, I went up and saw him two weeks ago and all he did was up the meds, and adjust my pacemaker. I called my family doctor, and when and saw him where he tryied to joke around with me to make me feel better, but my heart was still out a rythem, as I am righting this now I am waiting for my family doctor to call and see what he says my pots doctor said to do........ I am so tired of fighting this, the ups and downs are getting to me too much. Everytime I start to get better, and finally get back to work fulltime, I push it to hard, or start to get sick again! It's always the same thing. THe big problem os my husband is self empolyeed so I cover all the insurace. I am in a very stressfull job, I think causes part of the problem, I don't know what to do, but I am sick of new meds and them telling me it going to get better. Does it ever get better?

I want to thankyou all for the support, Knowing I am not alone makes me feel alot better, just knowing there are others out there that know how I feel! Thank you! I means alot I been feeling alone! Thanks Again, Amy

Hello, tonight it the first time here! After 6 years of going to doctors, 2 heart surgerys, and a pacemaker put in, I found out I have had POTS all this time, I have been all over the midwest from trying to find out what's was wrong with me. I find out all along it was POTS. Now I been told that it going to be hard to treat as everything they have already done to my heart. Two weeks ago, they started me on, bupropion, potassium, midodrine, and theophylline er. The 1st week on these I felt great. I had more get up and go than I have had in a long time. I have been so tired for so long I couldn't beleive how good I felt, till this monday here I was taked to the ER. My heart was racing so much, and I couldn't breath. I have never flet this bad. THey gave me some IV fliuds and meds and then I came home. On tuesday I went to my family doctor, who listen to my heart and took an EKG and my heart was out of rhtyem. So he called my Doctor at the U of I and they say to stop taking the durgs. Then with 24 hours my blood prusser was so low I was starting to passout. On Friday I did pass out. So I called them back and they are starting me back on the theophylline to see how I do on the alone. I am just tired and sick of not being able to keep up with my 3 year old son. I have not been to work since Monday, and they are trying to work with me, but in the last year I have already been off over 8 weeks with all the sick leave, I can't lose my job it carries my medical insurance. I am just looking for support, trying to find others that know how I feel, and any one with ideas in any way to hope. I am so gald there is a place like this to come!