halmad85

So sorry things are going so badly today. I also hope your kitty continues to do better and makes it through this. Hugs

Thanks alot for the replies and advice. I set up an appt with my primary to see what he can do to help me see someone who actually knows about POTS. I hope he'll know what to do to get me seen. I also called my regular cardio who I love, and asked him if I can have a prn for the symptoms (I told my primary that I would do this). I wish so much that my regular cardiologist knew how to dx POTS because he is so caring and never makes me feel like I'm not telling the truth about how I feel. His nurse is wonderful. She's the kind of nurse that makes you feel like you're so important. She makes you feel like she's your own personal nurse. I can only hope that I do the same for my patients at work. But, he doesn't know how to treat me. I don't know if he will give me an order or not for Ativan or Xanax. I have read that many people have taken these meds here. Do they help when you can't get your pulse and symptoms to calm down? That's what I'm hoping for because I can't handle the way I feel when I'm at work anymore. For now, I'm going to take your advice and keep my TTT scheduled if I don't get any reply from the insurance soon. The doctor I want to see is one that is listed on the DINET web site. I will bring the list of symptoms I wrote down for the other doctor and show it to my primary (hopefully he won't call me compulsive too). Usually he's always very caring and supportive of my needs...so, hopefully he will not be having any negative thoughts about me. Maybe he doesn't like that I am calling to see doctors I want to see instead of discusing it with him first, who knows? The only med I'm taking right now is Florinef 0.1mg daily. I think it's got my BP up a little more than before most of the time, but I haven't noticed any change in symptoms yet. Only on it for 2 weeks. So, I think I should be able to hold it until after the test. Thanks again for the help. I'm so glad I found this site.

Here I go on another vent in need of some kind and supportive words. I'm getting so tired of being the only one willing to help me. All the doctors covered by my insurance do not know what POTS is, so they can't help me. My primary's office is trying to get me approved for a visit with a not participating provider...It's been a week already and they haven't even spoken to the insurance yet to try to get me approved (they just left one message). I called my own insurance to see what I can do to help, but they said it has to be my primary. So, I have the TTT scheduled still with the doctor who doesn't know what POTS is. I want to cancel this test with him (as you guys advised), but I've been waiting to make sure I get approved for this specialist. Paying for the visit and test he will do out of pocket is not an option for me. The TTT is for March 1st. So, what if I don't know by then if I can see the specialist? Am I supposed to go anyway...or cancel, but end up not being able to see anyone else? I don't know what to do!?! On top of it all, I asked my primary doc if I can have some kind of prn med to help me along with work hours (which, by the way, I asked for last week also and they never called me back to tell me what he said). I always have tachycardia and crazy symptoms while at work, probably because I have to be on my feet for hours at a time. I mentioned Ativan or Xanax just to try to calm the pulse...and he said I will have to see a pysch doctor before he can order that! WHY?? I just don't understand what everyone expects from me. I feel like I've been dealing with this alone for too long. Why can't I get someone to push to get my needs met? What do you think I should do about this test? If I go to the Cardio who does the test, but isn't familiar with POTS, I could end up with the wrong dx or who knows what else. On the other hand, if I cancel and find out I'm not approved for a visit with the POTS specialist...what else would I be able to do at that point? Thanks for listening again! Jen

I get the shooting pains too. i've always just contributed it too my IBS. Hugs, Jen

Thanks everyone for the replies. I decided to take your advice and just cancel the test with the other doctor. I just hope that this one who was listed on the site is going to know everything about POTS. If I go to him, and he doesn't know at least everything I know about it, then I'm just going to scream! I only take 0.1mg of Florinef...so, I don't think I'll need to wean, right? I think that's the lowest dose and I only take it once a day. Maybe I should just stop it now before it starts to have to much affect on me. I don't know when I'll get to do the TTT. My appt with this specialist isn't until March 10th and then he'll have to get me scheduled for the test. I wasn't even going to start it until I got my test done, but then my symptoms started to become worse than normal each day, so I couldn't wait anymore. I was despirate for something to help me. Thanks so much for all the support and advice again. You guys are fantastic! Jen

I haven't been diagnosed yet, but I wanted to say that when I tryed Celexa, it made my symptoms of POTS so much worse. It actually sent me to the ER. I hope you feel better soon. Hugs, Jen

Thanks for letting me know that it's not abnormal to have POTS and still feel symptoms when sitting or laying. I was definelty starting to doubt myself and thought maybe it is just anxiety or just in my head. I did make an appt with on of the doctors listed on the website. My insurance doesn't cover him or any other doctor who was suggested to me, but my PCP will try to get me approved for the visit. I asked the receptionist if he knows about POTS, dx and treatment and she said he does. She said he himself doesn't do the tilt table test, but he will send me somewhere to have it done. I'm not sure now if I should just wait to have the test done by whoever he will send me to, or if I should just keep my TTT scheduled with the other dr. who didn't know about POTS, because I already have the test scheduled for the 1st. I'm not even sure if he'll know what to look for. But, if the test does show any abnormalities, maybe I could just go to this other doctor with the results of the TTT, and simply not follow up with the one who does the test. I don't know. About the Florinef, yes, I started it a week ago. My BP at the doctors office yesturday was 130/90. That's very high for me. I actually made me nervous. I didn't know if it went up after standing or not yesturday, so I checked it right now and this is what I got. Sitting 106/59 P 79. Standing 93/67 P 113. So, I guess it's not raising my BP to stand, except for the diastolic. Thanks for all the advice again. I really appriciate finding these boards. I've learned so much already. Thanks, Jen

Thanks alot for you quick responses. Maybe I should just cancel with this doctor now and go to one of the ones listed on the web site. I think I will actually. Thanks for that advice because he's probably going to make me feel worse about trying to get some answers. I live in PA. The closest one is a couple hours away, but maybe I can just get my husband to drive me. I get very nervous on the freeways, expecially if my symptoms act up. It's well worth the trip if I can find someone who will say, "Yes, I know it could be this, and I can help". So, those of you who do have POTS can have symptoms while sitting or laying down too? Is you pulse high at that time or can it be normal too? He made it sound like the pulse always has to be high when I'm having symptoms in order for me to have a problem that was related to the HR. He really let me down. I was so glad to find a doctor that did the TTT, but he didn't know anything either. I'm starting to wonder if I'll go though this my whole life not knowing why. I just don't know how much more I can take of being so sick all the time and having nobody to back me up. Nobody knows why it happening or what kind of affect this is having on my daily activities, on my life. I dread going to work everyday but with all my bills, it's impossible to even call off for one single day. Thanks for the support. I do feel a little better about the situation now. I'll call my primary tomorrow to set me up with an actual POTS specialist. Thanks, Jen

Hi everyone! I'm so frustrated with doctors and trying to get myself a dx that I could just scream. I'm starting to consider just accepting it...yes, I have tachycardia and it can cause alot of symptoms, plain and simple. I saw the doctor today who actually does the tilt table test, and guess what..he's never heard of POTS!! He said he's heard of sinus tachy causing symptoms, but never heard of it being reffered to as POTS. So, basically he's just going to do the test now to get me to be quite. I told him today that sometimes I can have a symptoms without my pulse being sky high. For example, I had some nausea and just the cloudiness and shakiness today. But my pulse was about 90. Usually it will be higher during my symptoms, but sometimes I even feel one or two symptoms when it's not so high. So, he immediately was saying that my pulse isn't the only thing causing these symptoms. I did explain that if my symptoms are severe, my pulse is always about 120-160. Maybe he's right. Maybe it's not only the cause of my symptoms. I don't know what to think anymore. He checked my pulse while sitting/standing. Said it was 70, then went to 100 after standing. He said that is normal adjustment for the body and gravity, and there was nothing abnormal going on with that. He was also quick to say because there was no change in blood pressure that I shouldn't even be taking the Florinef because it's more for orthostatic hypotension. He didn't seem at all interested in the pain I've been having since all this started. He didn't seem to find my fatigue, cloudiness, and loss of appetite related. He also told me I'm complusive because I wrote him a list of my symptoms and described them for him. I thought it might be more helpful if I had time to think about it so I don't forget something or get mixed up in my words. He mentioned maybe I have an anxiety disorder. Expecially since I've already talked to 4 other doctors about the problems I'm having. Well, I just think it would be nice if I could find one that knew how to diagnose POTS, or at least have heard of it! I feel ready to give up on trying to find out why. Maybe it's not POTS. I mean, I do get symptoms while standing for long periods of time, just about always. My pulse will be pretty high at that time. But, I also feel bad sometimes if I just sitting down, but it's not severe. I do know that when I lay down, my symptoms will usually subside, except for maybe the cloudiness and just kinda feeling out of it (fatigue). I don't really know what it is, all I know is that I'm not right these days, and no doctor seems to know why. Any encouragement you can offer would be great and thanks so much for listening. Thanks, Jen

I'm so glad that you felt well for at least half of today. I hope it continues.

Wow!! Thanks for all the replies. I went to work and felt horrible again. Then I come home and read all these understanding posts and I'm so relieved. I didn't think that doctor knew what he was talking about with the B/P. I think if he knew anything about it he would have a least tryed to see what my pulse did after standing. He was starting to make me feel a little nuts for thinking I have POTS. So, thanks for the replies. I also have noticed that sometimes I can have one symptom without the other. Is that uncommon? For example, I can have a pounding heartbeat and nothing else at one point, then I can have nausea later and might feel lightheaded, but no heart pounding. I think that's one thing that was throwing off that Cardio as well. He said my symptoms are too generalized. I can't pinpoint exactly when these symptoms happen and exactly how I feel because it's not always the same. I can say that if it's a more severe episode, then I'll have all the symptoms that I complain of at the same time. But, sometimes it's just some of them at a time. How do I go to a board from where I live to talk to others near me? You guys mentioned that but I haven't had enough time on the boards yet and I'm not sure how to do it. Another question. So far I've been given Toprol XL, Cardizem, and Florinef for the symptoms. The Toprol didn't help at 25mg, so my regular Cardio increased it to 50mg...then my pulse when down to 42 and my symptoms where horrible. Cardizem made me very tired, but I got through that to try to get it to work and nothing. At the most it calmed the palpitations, but nothing else. So, now I have a script for Florinef, but I haven't started it yet. I want to but I'm afraid that if I take it and end up getting the ttt in less than two weeks, it could mess up the results of the test and I won't get any answers. What do you think? Should I just wait to start until after the test, or am I nuts to hold on to it and suffer if I could be getting help now? I am trying to increase fluids and salt at least for now. Thanks so much for the support. I really appreciate all the kind words and advice. I wish you all symptom free days. Jen

Hi everyone! I'm so glad to have found these boards because being sick all the time and getting nowhere with doctors has been getting hard on me. I could use the opinion of other who have these problems: I've been experiencing alot of episodes of tachycardia 90-160bpm. It will usually occur when first get to work and I have to stand for long periods of time to set up medications (I'm an LPN). This wouldn't bother me, but I have alot of symptoms during this time...SOB, palpitations, dizziness, lightheadedness, nausea, heavy legs, generalized shakiness and weakness, chest pains (quick pains go as soon as the come), and just feeling like I could pass out, but I never do. I've also been having alot of pain eveywhere since this started. Usually sharp burning pains in my back, neck, sholders, thighs, and hips. Plus my right shoulder has been hurting to lift for the last 2 months (seeing a rheum for this). I think the first time I had this type of symptom is when I took a medication for my bladder (I have interstial cystitis), Ditropan. After the second pill I could barely walk..so, I stopped it right away. The next med I tries that cause the same problems was Paxil, and then Celexa...both those sent me to the ER. My doctor started me on them for the shakiness and "panic attacks" while driving on the freeway. Then I continued to have the symptoms almost daily. Some days it is more severe than other days. I also have the symptoms during and after taking a shower, doing housework, just playing with my family, or just simply being on my feet for too long. I saw my Cardio after the second ER visit. He did a holter and stress test. Stress test was normal, except I personally can say that when he had me running on the treadmill, my feet alomst gave out on me..it was horrible. The holter showed the I have tachycardia, up to 160bpm, and that my symptoms occur during the periods of tachy. Which I already knew. Then I mentioned the possibility of POTS and from there I've seen a Neuro, and another Cardio who said because my BP didn't fall upon standing I might not have that. Although I'm under the immpression that orthostatic hypo is a seperate issue, but can occur at times. The neuro didn't know anything about the disease. The neuro did reccomend a Cardio that does the tilt table test. So, after getting the run around from my primary's nurse, I finally got an appt with him for the 15th of this month. So, I'm hopeful that he will have an idea of what I'm talking about. Does it sound like POTS to you guys? It would be nice to know why I feel the way I do. Do POTS symptoms come and go...or would your pulse always be high after standing? Sometimes I feel ok, and my pulse is not to bad even after standing. Other times it is very clear that I have a problem and I feel like I should be in the hospital. I have been able to continue working, but I had to stop working overtime because it's just so hard on me to even be there as it is. It has been very hard on me because I seems nobody knows about this disease. When my cardio and my primary spoke to each other about it...my primary gave me a TB test because he thought they were talking about a lung problem POTTS. It just getting very frustating to see all these doctors and get nowhere. Thanks so much if you made it to the end of this. I just haven't had anyone to talk to about these problems, so now you guys get to hear it all. Thanks so much. Any advice is welcome. Jen