AJVDK Posted February 19, 2006 Report Share Posted February 19, 2006 I am not sure what to due anymore. I am ready to give up on finding a doctor or a treatment that works. I am begain to think that I am just losing it. I can't beleive how dumb some doctors, are and how many of them no nothing about POTS. I am just ready to lose it! Sorry I am venting I just don't know what to due.Well as alot of you know I am having a really hard time finding a doctor. My family doctor is has taken over my care for now, but he admitts he doesn't know alot just want we has read and information he has been looking at. I saw him again on friday, as things are going down hill fast. on Thusday, it got so bad, my son who age of 4 comes in to wake me up as he is hungry and wants lunch. I sleep till he woke me up alittle after noon. I feel like a bad mother. I got up made a sandwich for him, had to sit down while making it as I got dizzy, then went bad to bed, took some pills for the headache, and was back out. I am tired all the time, I have no energy, I am dizzy all the time, my b/p is running really low, my hands and feet are ice cold, I have blurred vision..... I don't know what to due. Plus the chest pain has gotten alot worse, and my heart skips a beat then the pacer kicks in and this goes on alot of the time too. I am paced at 70, and my pacer is pacing 93% at the time, I saw the doctor on monday,he didn't look at my records, he said I would feel better if I didn't have a pacer, and that I should have it remove, and I would feel better, plus people that have POTS, don't need pacer for a form of treatment. I understand where he is coming from, but I have 2 abltions and most of my sinus node is gone. How could I have the pacer removed? Plus he also didn't seem to agree with the records from cleveland. He beleive since I didn't pass out on the TTT it wasn't a postive test. While in Cleveland they said it was positive because of how my b/p changed. Also we didn't think the blood volume matter. So he didn't think I needed the cadrio rehad, cleveland wanted me to go thought, plus this doctor wants me to stop all my meds. I am taking Midodrine, Fludroctisone, theophylline, Metoprolol, Midrin, and Cymbalta. This is the 3rd doctor back home I have seen. Not one doctor will listen to Cleveland. It so hard to know whats wroung, know that you think a doctor is right ( the ine in clevelenad who deals with POTS) and not have any one listen here. One doctor just wanted to increase the meds, and see me in 6 months. The only person on my side is my family doctor, and he said on friday I know somthing is going on, but he feels helpless. He thinks I would feel better if we turned the pacer up in the 80's but he can not do this, and could get my blood prusser up, and to stay up. He also wants to get me into the cardio rehab program that Clevelad wants but we need a cardio doctor here to agree and that not happening. So he said monday hes calling the Dr. at Cleveland to try to come up with idea to get the treatment I need. He siad I may need to fly back out there and see whats going on. The problem with this is, even if I go out again, I still am not going to get the care I need here. Plus I am now waiting and hoping that disablity goes though, and have not worked in two months, Last time it cost about $1500.00 to go out there for the week, and this time I just don't have the money to spend. I don't know what to do. Is it wrong to want to get the treatment I think will help. Is there a time just to give up and just live this life. I just want to do everything in my power to get better, I want to go back to work. I want to have a life again. I don't want to be stuck in a house 24/7. I want to have human contact, that has nothing to due with my health, or helath care. I sorry for venting.... I know many of you are going though alot, I just don't know what to do. Any thoughts, or ideas would be a help!Hope you are all having a great weekend! Amy Quote Link to comment Share on other sites More sharing options...
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