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CaptainHappy

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About CaptainHappy

  • Rank
    Newbie
  • Birthday December 11

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  • Gender
    Female
  • Location
    Georgia
  • Interests
    Photography, graphic design, flight sim

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  1. So I have an update! Somewhat good, in a way. I managed to find a new PCP who has been wonderful so far! I have to drive 45 minutes to see him but, considering my past awful experiences with doctors, I'd say it's totally worth it. I told him all about what's been going on and my increasing suspicion that I have EDS. He didn't really know anything about EDS, but asked me to explain it to him instead of just saying "oh, you can't have that." That is like a miracle to me!! He decided to refer me to a rheumatologist, who I saw this morning. She was fabulous. I was so pleasantly surprised! She actually listened to what I had to say, did a very thorough exam, asked lots of questions, and made it absolutely clear that she believes I am in pain and it is not "all in my head." I seriously wanted to cry. I'm sure many (if not all) of you know the frustration of not being believed by doctors. So after that consult, the diagnosis is hypermobility EDS. I was pretty sure it would be. I didn't realize what a relief it would be to get that official diagnosis. It sounds ridiculous but, after nearly a decade of trying to find an answer, I finally know what is actually wrong with me. At the same time, it's disheartening to know for sure it will never go away. The rheumatologist decided to do a trial of two new medications for the pain, duloxetine and gabapentin, and wean me off of the amitriptyline I've been on for the last 5 years. I'm a little bit worried about the duloxetine after researching and seeing some horror stories about side effects. Has anyone had experiences with either of those meds?
  2. Thanks for the info. My problem was not with the meds, but with the doctor's attitude. He wasn't trying to help my dysautonomia symptoms; rather, he was telling me that the SVT episode I was having due to being abruptly taken off nadolol was "all in my head."
  3. Thanks for your response. I would definitely have tried the anxiety meds if I thought there was any chance they would help. But unfortunately, I don't trust this doctor's intentions anymore. Especially not after I started back on the nadolol and these "anxiety" symptoms went away. I also found out from my cardiologist that the ECG that my PCP performed during that episode showed several PVCs, and he didn't bother to mention it. That really irritates me, because I told him several times that at least once a day I felt my heart "skipping" beats. I know PVCs aren't dangerous (unless you're having a ridiculous number of them). But to know there was actually something going on and I wasn't just imagining it, but the doctor didn't bother to say so... it just really makes me angry. So I'm now going to be looking for a new PCP as well. There was a wonderful electrophysiologist I saw when I was first diagnosed. However, he's with Kaiser Permanente and I'm not anymore. So I can't go back to him, and I have had absolutely no luck with any other cardiologists around here. I've kind of given up on looking in Georgia.
  4. Hi everybody, thanks for all the responses! I have had a lot going on the last couple of weeks, so I haven't been back until now to check the replies. I appreciate everyone's input. I'm still looking into all the options and trying to figure out where to go from here. I saw my cardiologist again today, which just reinforced the thought that I need a new doctor. I was sitting there miserable in his office with my BP still 90/60 despite the midodrine, and he tells me to just keep taking all my meds and come back in six months. Thanks. For those who asked, I've been tested several times for Sjogren's (and about a million other things) and the results have always been negative. I'm pretty sure at this point that it's just the dysautonomia, since nobody can come up with any other cause. Living with this is extremely frustrating, but it's awesome to finally connect with other people who really get it. Even though I have the most understanding and supportive husband I could ever have asked for (seriously, I don't know why he puts up with me!), there's no way he could ever really understand what I go through on a daily basis. It's nice to know I'm not the only one. Anyway, I've been looking into both Vanderbilt and Cleveland in addition to Mayo. I still haven't filled out the Mayo questionnaire, mostly because I've read about some negative experiences while trying to do some research. I just don't want to end up right back where I started, and a few thousand dollars poorer. But I guess that could happen no matter where I end up going. If anyone has any more input, I'd love to hear it. Thanks to everyone who's responded so far!
  5. Thanks for responding. I've done a lot of looking around online about which Mayo location to go to and kept seeing good things about Rochester, so that's where I was planning to go. I would be willing to go anywhere, really. It doesn't make much of a difference because it will be an expensive trip no matter where I go. Do you think it would make a difference going to Jacksonville vs Rochester, or would that just depend on the doctor either way? The lady I talked to earlier today said that if I got an appointment, I would be scheduled with several different specialties. So I'm assuming cardiology and/or neurology would be among them. I really have no idea what I'm doing here. I just got so irritated with the same old "anxiety" bs today that I had to do something, so I filled out the Mayo appointment request form when I got home. I have heard of the Vanderbilt clinic, but I haven't been there. My old cardiologist mentioned sending me there, but around that time is when I lost my insurance for a while. That doctor was with Kaiser, so unfortunately I can't see him anymore. I have had an autoimmune workup done several times, but nothing has ever shown up. EDS has been mentioned by a few people and, from what I've read, it seems to explain everything that's going on with me. But I don't feel like I can ask any of my doctors about it without being blown off. Hopefully I'll figure something out, I guess I just need to keep researching my options. Thanks again.
  6. Hi everyone, This is my first time actually posting here, but I've been lurking around and reading others' posts for a while. I'm having a really rough time right now, and this seems like such a supportive community, so I'm glad to have found it! I'm hoping others might have some helpful suggestions. I was diagnosed with POTS and IST in 2013 after 5 years of being told I was crazy (just in slightly nicer words). My resting heart rate was in the 130s, jumping up by 30-40 if I so much as stood up. I was referred to two different psychiatrists, both of whom turned around and sent me to cardiologists. Finally, after passing out in the middle of a college class and being hospitalized, I was started on verapamil to decrease my HR. When that didn't work, my cardiologist added nadolol. That finally brought my resting heart rate under 100 for the first time in years. I was on that combo for about three years, until I started having episodes where my HR would drop into the 40s or 50s. I'd get this weird, heavy feeling in my chest when it would start dropping. I mentioned it to my PCP, and he had me stop taking the nadolol in case that was the problem. I woke up the next day with a HR of 160. The doctor switched me to half the dose of nadolol, and it decreased the frequency of the attacks, but they still happen. The worst was a couple months ago, when my HR stayed between 40 and 55 for about 5 hours. I couldn't get up off the couch. My resting HR has been creeping back up over 100 in the last month or so, and I went back to the cardiologist last Thursday. He took me off the nadolol again, but this time added midodrine because my systolic BP has consistently been under 100. As soon as I made the switch, I started feeling miserable. My HR was in the 140s-150s constantly, and there was no increase in my BP. I called the cardiologist back, and he increased the dosage of both verapamil and nadolol. Today I had a regular follow-up with my PCP, and my HR was 155. It went down to about 115 after lying on the exam table for about an hour, but that's as low as it got. PCP called the cardiologist's office... then came back with a prescription for Xanax. Considering I went through five years of hearing "it's just anxiety," I was not happy. After I explained that these symptoms didn't get worse until I was taken off the nadolol, the doctor thankfully called the cardiologist again. He came back and told me I was to restart the nadolol, but I should still give the Xanax a try, "just in case." I went home without filling the Xanax script and took the nadolol. And what do you know -- two hours later, my HR is down from 125 to 89. After dealing with this so long and finally thinking I had a doctor who believed me, getting the anxiety spiel once again really pissed me off. I've been thinking for a while about trying to get an appointment with the Mayo Clinic, and I went ahead and filled out the online request when I got home this afternoon. I got a phone call within an hour. The lady I spoke with sent me the questionnaire to fill out, but I haven't done it just yet. I've read (not just here, but other sites as well) about people having both very good and very bad experiences with Mayo, and I'm concerned I'll end up having one of the bad experiences. But I'm kind of at the end of my rope here. The thing that's really getting to me is that POTS and IST are just two in a long list of health issues I've been dealing with for seemingly forever. Since 2012, I've also been diagnosed with fibromyalgia, IBS, Floppy Eyelid Syndrome, and severe Dry Eye Syndrome. I had surgery for the FES in 2014 and pending a consult with another oculoplastic surgeon at the end of this month, I'll probably be having another surgery. I was told I'd get 5-7 years out of the first one, and it's been 3. The dry eye syndrome has led to corneal scarring and vision loss. After a serious flare-up earlier this year, I had an amniotic membrane graft in my left eye. That helped, but I still can't see worth a crap unless I'm wearing contact lenses. I have to have something physically on top of my cornea to be able to see. I basically don't produce any tears, and no one can tell me why. I had punctal plugs inserted that fell out within hours, so I had my lower puncta cauterized (didn't help). I have constant tingling and shooting pains in my hands and feet, lower back pain that never goes away, and joints that decide they don't want to stay where they belong at the slightest provocation. I can't walk up a flight of stairs without feeling like my body is just going to shut down. I have heartburn so painful that if I didn't know better, I'd think I was having a heart attack. I have a very hard time believing these things aren't all connected in some way, but so far I've just been shuttled from one specialist to the next like it's not all part of the same body. I'm sorry, I guess this kind of turned into a rant. But I appreciate if anyone's read this far! So I guess my point was, has anyone with the same sorts of issues gone to Mayo, and what kind of experience did you have? I am pretty much willing to try anything at this point, but I'm really worried it will end up being yet another (ridiculously expensive) dead end.
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