Angelika_23

So, I went to the OB/GYN yesterday out of sheer desperation because of the constant horrible pain I'm in and the terrible nausea, not to mention the other "Potsy" things that are going on. My PCP pretty much said my bloodwork was fine, but when I got a copy it said my segs were elevated. Not sure what that means. Anyway, the OB?GYN did an exam, asked me if the pain was running down into my left leg and I said, "Yes! How did you know that?" He said I had a mass the size of an orange. He said my nausea was because I was in so much pain. He debated putting me in the hospital right then, but let me go home. He forbade me to travel, told me to stay in bed and take Vicoden. He scheduled an ultrasound at the hospital today, I went at 2, but haven't heard anything yet. I'm guessing it will be tomorrow before I hear anything. I'm not sure what is going on, but I'm honestly in so much pain I'm not even scared. I just want this fixed. I'm wondering if this issue is causing my Pots symptoms, and when it is resolved, they will die down again. My holter results came back. Avg HR 68, way down from 104. lowest HR 46 highest HR 129 2 single rare premature supraventricular ectopic beats 1 premature ventricular ectopic beat. I don't know if these things are anything to be concerned about. Anyway, that is what is going on. Angela

ok, got copy of bloodwork. All is okay except for slightly elevated Segs. Does anyone know what this is or what it means? Thanks, Angela

No, I am not on Inderal Cardiactec. Sophia, it is all white. Like globs of mucous. Yuck. The pain was actually worse last week. It is still a constant throbbing ache, but not so sharp anymore. Did you have the muscle spasms, too, Cardiactec?

Sorry, I know, TMI... I am starting on a crash and this is just the latest symptom. I started almost two weeks ago with low heart rates (when I am normally high). Then, I started having pain in my lower left side. Next came the nausea. And intermittent loss of bladder control. And muscle cramping and jumping. Now I'm having white mucousy diarrhea. My PCP is not being helpful. He said my bloodwork came back just fine. I am not pregnant. (We were worried about ectopic pregnancy) I have a 24 hour holter on from the cardio. He's trying to catch the low HR. Can someone tell me what that might mean? Angela

My body seems intent on torturing me. I posted earlier because I was catching low HR numbers. Since then my doctor lowered my dose of Toprol XL. So now, at various times during the day I am okay, then HR in the 40's, then tachy. It is driving me NUTS! I feel as if I'm going to pass out at times, guessing this is the low HR coming into play, then nervous, always tired. I have an appointment to see Beverly at Dr. Grubb's office next week. I have never met Beverly. I hope she is the sort who listens. I need to share the Vandy results with them. They went off my local cardio's information that I do not have hyperadrenergenic POTS, which Vandy says I do. I am thinking that will make a difference in treatment. I have lost 33 lbs since my last visit to Dr. Grubb, where he kind of focused on my weight. I hope Beverly doesn't focus on my weight too. I am open to suggestions if anyone has any. Thanks! Angela

I had awful problems with Effexor. It made my tachycardia and other symptoms much much worse. BUT, I am incredibly sensitive to drugs, so it may not be that it is bad for hyperadrenergenic POTS, just bad for me because my body doesn't much like anything. It may work well for others. Good luck! Angela

Interesting. My catecholamines were checked, and I was told I did not have hyperadrenergenic POTS. This year I went to Vanderbilt, and was told that my POTS is, indeed, hyperadrenergenic. My urine was checked for catecholamines inititally. I guess that test isn't always right?

Hello, First, I have discovered that even though my HR stays low now, it will still jump 30 bpm (just for a second or so) when I stand. Then it drops way down again. So I don't think I am enjoying a recovery from POTS. Plus, I am having left sided chest pain and I am SOOOOOOO tired I can hardly stand it. I put in a call to Dr. Grubb's office. They moved my appointment up to the middle of October, but then called back later and had me leave a message with all my symptoms on the voicemail for a nurse. They said she'll call me back tomorrow and I may have to go up to see them sooner. I'm not sure what to think at this point. Ack Angela

My heart rate is usually much higher, in the 120's at rest without beta blockers. With, it stays in the 90's or so. That is why this sudden change to a much lower HR is odd. Who knows... Maybe I'm getting better! Wouldn't that just be awesome! It would be great to not have to take all these meds.

Hi, The past few days I have been having "funny" episodes. Feel like my heart is beating too hard and get that feeling like an adrenaline rush. But when I took my pulse, it was irregular and in the 50's.That is totally unheard of for me. My HR is usually high all the time except for in the middle of the night. I have taken my BP and HR a few times and I'm getting stuff like 117/68 and my HR is always in the 50's. This is a big change, as my HR is usually high, like over 100. I called my cardiologist today, and he told me to start taking half of the Toprol XL that I normally take. If my HR is still down tomorrow, I have to go in for an EKG. The only things that have changed are that I am exercising some, and I have lost 30 lbs (I still need to lose more). When I exercise, I can still get HR's up in the 160's or so. I am very tired. I am guessing that is because of the slow heart rate. This is so confusing. And at a bad time. My oldest son is going to the homecoming dance this weekend, and two of my boys are in the parade, and it is such a busy weekend for me to feel so badly. Can dysautonomia "switch" on a person, completely changing the symptoms? Thanks, Angela

I had issues with my family understanding - they kept saying I had anxiety or I was making it up, whichever was more convenient. I took my dad and sister with me to Vanderbilt, and they got to see firsthand what happened when I was off meds for three days, and they listened and took notes when I saw the doctor. It was a very good thing. I still don't think they understand it totally- but they do accept something is wrong with me and it is not "in my head" Angela

I have bad reactions to prednisone, and dexamethasone. I get "sunburn skin" which is where my skin FEELS like I have a sunburn, but I don't even have a rash. It hurts soooooo bad. Then I get the muscle pain and weakness. And yes, tachycardia. I live in fear of getting bronchitis or something that will make the doctor try to prescribe those horrible steroids. Angela

This test really stunk. I couldn't get up for almost an hour afterward, and even then I was shaking so hard I couldn't even walk by myself. I voted this worse than the tilt because my ttt was improperly done (on meds with my stocking on...) so my ttt wasn't too bad.

Hello, I am an HR coordinator, and I currently administer the leaves of absence (FMLA included) as well as being on an intermittent one myself. 1. Yes, if you not being there is causing a problem with getting work done, they do have the option of moving you to an alternate position while you are on leave. It would have to have the same pay and benefits. I have not been moved, they need me where I am I guess. 2. Yes, part of the law is you have to have your healthcare provider fill out a "certification of healthcare provider". This only needs to go to HR, and no one else. Not even your boss. Your doctor can put that you have a chronic condition, I don't believe they need to be super specific. I've seen them where they simply state surgery, etc. and the amount of time that may be needed. 3. I would tell your co workers what you are comfortable with them knowing. Mine know what is wrong with me. They aren't sympathetic to it, and I believe they resent my absences. However, I have been with my group for over 9 years, so it isn't like we don't know each other very well. Plus with my hospitalizations, they knew something was up. Good luck! Angela

hello, I have been all over too. I have travelled to Wisconsin to see a Neurosurgeon for my chiari, I have been to Cleveland a couple of times, I have been to Toledo to see Dr Grubb, I have been to Vanderbilt. Around home, I have been to at least three local hospitals and have seen countless specialists here. I have to say, my local people besides my cardio ep didn't do a lot for me. They all kept diagnosing me with depression and mental illness. I would love to send them all my test results from Vanderbilt and my office notes from Dr Grubb! Validation! Angela

I feel like such a moron. The doc at Vandy suggested I should do some aquatic exercise, soI was doing the water aerobic class at the Y last night, and started feeling bad. I knew I was tachy, so I went to the side of the pool to rest. My mistake was I should have tried to lie down. But, in the water there wasn't really anywhere to go. So I stood there, and I guess I looked really bad because everyone kept asking me if I was okay. Then the lifeguard came and made me walk with her, she said stopping suddenly wasn't good for my heart. So we walked, then I got out of the pool and THEN I started feeling REALLY BAD. I guess it showed, because the lifeguard shoved everything off the bench that was near and had me sit. Then I fainted. Just for a second. So she held me up and cleared the rest of the bench and had me lie down. She ran to call my husband, then got me a glass of water. I sat up, chugged it and fainted again. Just for a second. By this time, the whole class is watching, I feel like an idiot, and now they want to call 911. I begged them to not call 911. My husband got there while they were debating, so no 911 thank God. They rolled me out to the car in an office chair. It was so embarrassing. Today, the lifeguard called me to make sure I was okay. It was a very kind gesture. I bet they have me marked in the system now as a liability Those of you that swim, how do you handle this? I wasn't able to get up and go to work today... My boss will kill me. Angelika

Hello, The doctors think my POTS is post-viral. I had viral meningitis a few years ago and my symptoms started about 6 mos after that. Welcome! Angela

Yes, the world went gray all three times. It was awful. But I didn't actually pass out.

I had the BP and heart rate taken while lying, sitting and standing. I had to breathe in and out on command. I had to breathe into a tube that was connected to a blood pressure thingy, and had to keep the mercury at 40 for 15 secs. My HR went crazy! And my heart felt like it was beating wrong for a bit afterward. That is what got my HR to 155 and made me so miserable. Then they put my hand in ICE water, and I mean mostly ice a little water and I had to keep it in there for a minute. That really hurt! On paper, that seemed to me to be the least problematic besides the BP and HR stuff, but it really hurt! Those are the tests I had. Angela

Thanks Sophia, I'm not sure if anyone remembers, but my POTS is believed to be post-viral. I had viral meningitis in 2002, and while I seemed to make a full recovery from it, I started with POTS about six months later. And, my symptoms waxed and waned, so I was diagnosed with anxiety disorder for almost 5 years until I ended up in the hospital for several days. So I haven't had this my whole life like a lot of you. You have all been so supportive of me when I was at my worst, and needed so much for someone to understand. You have all helped me find answers, or at least directed me to places I could find answers. I know I wouldn't be where I am today if it weren't for you. And, of course, help from above. Thank you, thank you, thank you everyone! I appreciate you all so much. You have no idea. I am by no means cured, and I still have bad days, so you aren't getting rid of me so easily. I'll still be around Angela

Hello, I have just returned from my outpatient visit at Vanderbilt. I have to say just about every person I encountered there was pleasant. It was a very positive experience. The testing was absolutely horrible. I would not like to have to do it again. I was almost in tears after the third test, and couldn't even sit up after the fourth. I wonder how long it will take me to get back to baseline... I get to start my meds again tomorrow. The doctor confirmed I do have POTS. Which we knew, but it's nice to have the testing now to validate it for my disability. (I am only able to work part time for over a year now). The interesting this is, the doctor put in my report that I had an "Exaggerated sympathetic vasoconstrictor response". He also refers to me as having "hyperadrenergenic responses". When speaking to me in person, he simply said my autonomic nervous system was in overdrive. He also said my autonomic reflexes were intact, and that that is a very good thing. My EP cardio here tested me for hyperadrenergenic POTS and said I didn't have that... Anyway, the good news is, the doctor told me that I will recover from this. I have slowlybeen getting better. A year ago I couldn't hardly get out of bed, and now I am walking a few times a week. I still have bad days, and I still can't work full days as of yet, but things do seem to be getting better! So that's my news! Angela

I am off some of my meds, the beta blocker being one. I am now having some issues. It is sure going to be a long drive to Nashville. Wish me luck I have my testing tomorrow morning, and my visit with Dr. Italo Biaggiano tomorrow afternoon. Angela

I don't know why, but I've gained about 50 lbs since I first got POTS, 30 of it in the past six months when I started the beta blocker. For a while I thought I was the only POTS person who wasn't skinny. My doctors keep focusing on my weight, but I feel that the weight is a symptom, not the cause of my problems. Good luck Angela

Happy Birthday Ernie! And hoping for many more in remission!!!!! Angela

Hello, Well, the stomach issues have abated. I've been on about a quarter dose of Mestinon since Friday last week. At first, I just had stomach trouble. Now, it is gone, but other things have come to take it's place. My chest feels very heavy at times. I am having these weird heartbeat things where it feels like my heart is beating regular, but at the same time have a drumming sensation for about 5 secs. Then it goes away. I am also finding that I feel anxious. When I breathe in, it feels like I am gurgling or something. Could the mestinon cause all this? Will it go away? I tried calling the doctor, but the office did not return my call. I'll try again tomorrow. Angela