Jeng5158

Even crazier now, the EP called me this morning to apologize. He did say "you have a good doctor (my family doctor), since he caught it so I could change the report" and I sooooooo wanted to say no, I actually was the one to catch it, but I was so shocked that he had called I decided not to say anything and just accept the apology

Update! My PCP emailed me with results and said "Dr. So and so (the EP) didn't think it was POTS. just drink more fluids and if we need to we can try medication in the future. if you have any questions let me know." I replied back saying I was confused about the results and what happened during the test, so he reread the criteria and talked to the EP, who then said that I DO have POTS. Nothing like having to educate an electrophysiologist about the diagnostic criteria! lol Also got a referral to a rheumatologist to evalute for Ehlers-Danlos - while I'm beyond sick of seeing doctors and having tests, I figure if my husband and I are planning to start having kids next year, it's probably good to know if there is a genetic disorder or if pregnancy would be affected It's such a relief having an actual, confirmed diagnosis!

Hey everyone, just want to see if anyone experiences this and how they handle it. I've been on an antidepressant for years (Wellbutrin). My depression is well-controlled and on most days I feel very stable. More recently my fatigue has been getting worse and I literally could sleep any time of day (except when I NEED to go to sleep and then insomnia kicks in of course lol). I've noticed that on Mondays, I feel super super super depressed. Like, don't want to move, everyone irritating me, just want to go to bed and sleep for days. It's been worrying me because I don't want to take more medication. Thinking about it though, I don't think my depression has returned because literally every other day is fine. Normally, Mondays don't bother me because I work M, W, Th, F so I always know I have my day off on Tuesday. The day that it was the absolute worst was after a weekend of driving 4 hours, going to a wedding, dancing for a long time, and then driving back home on Sunday. This last Monday, I felt it a little bit, but I had been outside at a festival all day on Saturday and a little hungover on Sunday. I'm wondering if the deep depression I feel is really just bad fatigue from overdoing it or "running out of spoons." I'm usually better by dinner time and perfectly fine the rest of the week. Has anyone else experienced this? I'm always tired so it's hard for me to determine if I'm more tired than normal so I never put it together until I was thinking about the spoon theory and that the days that it happens are always after an active weekend. I'm not quite sure how to deal with it - I already drink coffee to perk me up and it's very difficult for me to get more sleep than I already am at night. Any ideas?

Yes, I am actually wondering about hypermobility/EDS because I fit the Breighton criteria/other EDS criteria and I remember getting worked up for a connective tissue disorder when I was a kid but my mom has no clue if they diagnosed me with anything - she has a lot of various psychiatric illnesses and tends to be more focused on herself..... - so I requested my records from the Children's hospital. My husband and I are planning on starting to try to have kids next year or so, and I know there are some issues during pregnancy related to EDS that I want to be aware of if I do in fact have it. I'm afraid to bring it up to my PCP because I feel like he's just going to think I'm just grasping at straws to be diagnosed with something or that I'm just anxious. Plus, I don't think he really knows much about it because when I told him that I am hypermobile when I told him my concern that I might have POTS, he said "hmmm....I don't really think that's related" - EDS/hypermobility and POTS have a huge correlation, so I think he's just uneducated about all of it. Thanks for your responses, I really appreciate it! I don't like talking about this stuff with my husband because I don't want to annoy him or feel like I've taken on the "sick role" and it's nice hearing other's experiences so I don't feel crazy

Thanks for your reply. I believe the test was 35 minutes total. It just stinks because I'm just exhausted. I'm sick of tests, I'm sick of doctor's visits, I'm sick of paying for bills for tests, etc. I'm so tired and at the point where I want to be done searching. This whole thing started with stomach issues and losing 30 lbs - I had dizziness and palpitations but thought it was just because I wasn't eating much - so I've already had a gastric emptying study, EGD, colonoscopy. Then when I looked into it further and had the aha moment where I realized the nausea/cramps were from something like POTS and dizziness was the main symptom, not the other way around, I had an EKG and echocardiogram. I feel like I'm wasting exorbitant amounts of money going on a wild goose chase that isn't going to change my outcome. I'm just tired of being told that I'm fine, but then that I might have something, but then I might have something else, etc. There is an autonomic specialist at Froedtert in Milwaukee, but you have to have full autonomic testing for him to see you and I'm sure he's booking out for months. I just don't know if I have the energy to keep pursuing this or if I should just deal with the symptoms. :/

So I had my tilt table test done last Friday and I'm a bit confused. It was done by an electrophysiologist so I feel like I can't really challenge what he says because I'm not the one with years of training in this field. My normal resting heart rate is around 85-95 but it was going at 115 before the test and no matter how much slow breathing I did I couldn't get it to go down so they just started the test. I didn't mentally feel nervous but I just couldn't get my body to calm down. About 15 minutes into the tilt table I felt dizzy and was sweating. He came up to me and said that my heart rate had increased quite a bit but my blood pressure was holding steady, so he didn't feel it was POTS but that they would keep going with the test. First - isn't the diagnosis of POTS based on increase in HR WITHOUT hypotension??? They kept going and after 25 or so minutes, they administered nitroglycerin. I felt more palpitations and was sweating even more but never fainted. He then came up and said he still felt it wasn't POTS but they would wait 5-10 more minutes. Right when he said over the intercom to the nurse that it was time to stop the test, I felt a huge surge of lightheadedness. The nurse said my blood pressure had dropped suddenly from 125ish systolic to 87ish. I never fully passed out because they lowered the table right away. The EP came over and said again that he didn't think it was POTS. My heart rate apparently got up to 170 though (don't know if that was before or after nitroglycerin) and was high throughout the whole thing, but that I had already started high. He said he feels it's inappropriate sinus tachycardia, possibly from dehydration. Again, isn't the diagnosis of inappropriate sinus tachycardia based on increased resting HR WITHOUT any other explainable cause (like dehydration)? And he knew by looking at past PCP visits that my resting is normally below 100. So not sure what to think. I guess it doesn't matter that much because no matter what the diagnosis, I don't want medication unless my symptoms are intolerable. I just feel like POTS would be the diagnosis based on what I heard my vitals were during the test and I'm confused about how the EP made his conclusions. During the active standing test, my resting is 85-95 and goes up to 140ish when standing, I also get red/purple feet. They had me keep my shoes on during the test and didn't look at all for the pooling of blood. Has anyone had a similar experience or any insight?

I have one and love it! Not sure how to add or search for friends though - do you know?

Thanks everyone, I appreciate it!

Thanks for your reply! I am worried about getting it done at the local hospital...there's no one who really sees people with dysautonomia so I'm afraid it'll be interpreted wrong. My insurance won't cover it at the academic hospital 20 minutes from me unless it's ordered by a doctor there...and the specialist will only see you if you've already had autonomic testing so it's kind of a catch 22. I'm just hoping that if I do have POTS, my results are significant enough that it's easy to interpret. At home they usually are, but what if the process of actively standing increases my heart rate and since the tilt table takes that away, it makes my results negative, even though it's not simulating real life? I know I'm really overthinking this...it's just hard being a young female and being afraid of not being taken seriously.

Hey everyone! I'm new to the forums and so glad to see a support network of people. After 8 months of not knowing what's going on, I was tentatively diagnosed with POTS. I've always had dizziness and assumed I just had orthostatic hypotension so when I developed a lot of nausea, I didn't put two and two together that it only happened when standing or when moving around after a large meal, so I had a billion GI tests done that were negative. I think at that point they assumed it was IBS or psychosomatic. I don't remember where I heard about POTS but I saw a description that was exactly how I would describe myself and realized that I don't have just low blood pressure, I actually have a really high orthostatic heart rate. I did standing tests on my own with hitting 130-140 every time, with my feet turning purple. I saw my doctor yesterday, asked about whether POTs could be causing my issues, and he did a quick standing test and my heart rate was 126 after 2 minutes of standing. He now ordered an echocardiogram and a tilt table test with the tentative diagnosis of POTS. My question is has anyone ever had a false negative tilt table test? It was my understanding that symptoms and change in heart rate is more pronounced with the TTT than with a normal standing test, but then I read a few things where the change was less. I'm just worried about having another negative test and being looked at like I'm crazy, even though my symptoms do fit and I've never not hit the criteria with the standing test at home. If I don't have POTS, obviously that would be awesome.....but I also don't want something to be missed because it's a good day when I have the test. Does anyone have any thoughts or firsthand experience with different results between the standing test and the tilt table? Thanks so much! Also - I tried to search this and couldn't find anything but if a thread has already been done on this just let me know.