Dizzy Dame

Thanks guys, I'll try the ginger ale and see if it helps. Cheers, Lauren

It could have been what we not-so-affectionately refer to as a storm or surge. Like mom4cem said, the best one can do is tough it out. If it gets really, really bad, I sometimes go to the doctor. I've had to learn to pace myself, and I mean pace myself. I don't do anything that is too tough, and I try to be fixedly horizontal by 9pm every night (meaning not getting up for anything) with the lights low. This seems to help as my worst crashes always happen in the evening. Also, meditation has really helped: focusing on my breathing and clearing my mind can keep my adrenaline from affecting me when I'm crashing. Maybe something like that would help you as well. Hope you're feeling better, Lauren

Julie, That is pretty good news, and it's nice his wife's co-workers are so supportive. I'll keep him in my thoughts. Hugs, Lauren

Morgan, Perhaps it's best if you take a break, but if you're determined to stick with PT, I'm sure you can find a therapist who is willing to work with you. I went to PT and when I first started seeing Holly, I couldn't even do five leg lifts or curl a 2 pound weight (after four months in bed it's no wonder ). Anyway, Holly worked with me for two months and by the final session, I was able to lift my 35lb wheelchair in and out of my station wagon (which was my final goal). If Holly worked with me, there should be someone out there who is willing to work with you too, and who won't push too hard either. Good luck, Lauren

Hi guys, I know that some of you suffer from relentless nausea, is this a part of dysautonomia? I ask because for the past few weeks I've been having severe nausea on and off and the past few days I haven't really been able to eat because of the constant desire to go hug the toilet (if you know what I'm saying). Also, does anyone know any non-chemical ways to help nausea? I've tried chewing ice which seems to help a little, but I'm looking for something more effective. Thanks, Lauren

I hope I'm not too late to chime in. As you can see, people react differently to flying. I for one can't handle it, and my doctors have reccomended (after the last horrific flight) that I never fly unless medically necessary until my health improves. However, I'm pretty sick so it makes sense that I can't handle flying. You may want to consider getting fluids before you get on the plane if you're having trouble hydrating. Also, keeping a relaxed mindset can do wonders (sometimes I think my fear of a crash actually leads to one ). If you have to fly, you have to fly and I'm sure you'll be fine. Good luck, Lauren

Linda, Just dropping in to wish you well. The flu is no fun, I hope you begin to feel better soon. I don't know any natural ways to cure the flu, other than tons of fluid and bedrest. Feel better! Hugs, Lauren

Blackbird, Yes, I'd love the name of that hotel you like. Is it expensive? Is it close to the University? Thanks so much, Lauren

Good going Persephone! I'm so happy to hear you've been feeling better. And you deserve it. Maybe that good luck charm I sent you really works Hugs, Lauren

Hi, I quit smoking when I first fell ill with all my autonomic troubles. I'd been smoking for eight years, which is not as long as you. My boyfriend, who'd been smoking for 11 years decided to quit with me. Bottom line: quitting is miserable. There's no easy way to do it, and no matter what, you're going to be going out of your mind. I used the patch the first few days, but developed an allergy to it and had to go cold turkey. The first two weeks were ****. I didn't sleep, I was sullen, fussy, and couldn't sit still. My autonomic system went insane as well, I had bursts of tachy, SOB, brady. After that the cravings became less violent. I can say that after the first two months, things got much easier. Now, after seven months, I'm disgusted by cigarette smoke ( I think my body recognizes it as poision). Just hang in there. Know that it will be horrible, but that you can do it. I used a "one day at a time" mentality that really helped. Just tell yourself "I won't smoke today" or "I won't smoke this hour" or "I won't smoke this minute" don't think of it as forever, that's too hard. Good luck, and I hope the nodes in your lungs aren't the big C, but if they are, you can fight it. Hugs, Lauren

Julie, Your brothers family will be in my thoughts. I really hope everything goes well. Hugs, Lauren

HI Lisa, I've been out for awhile so I'm not versed in your history. However, as others have said, I would get a second opinion before rushing into a drastic treatment. I've had doctors tell me that ablation was the ONLY option, but later found out they were full of crap. Doctors often have the best intentions, but they're not infallable. Okay, with that out of the way, I hope whatever you decide to do helps you greatly. You'll be in my thoughts. Cheers, Lauren

Hi guys, Thanks again for all the support. To answer Blackbird's question, I'm going as an outpatient. I'm nervous about being hospitalized again, so I declined to do the study (my last hospital stay was horrific and I've sort of developed a phobia of hospitals). I am beginning to improve, I even bathed myself yesterday! I think this recent crash had everything to do with the travel. I had a horrendous plane trip and I suppose this recent bad health was a delayed result. I'm not out of the woods yet by any means but as long as I'm getting slightly better each day I can handle anything. I hope everyone had a happy New Year! Cheers, Lauren

Thanks for the support guys. Things seem to be getting worse and better. I had an unusual episode last night and my boyfriend had to call 911 again (violent shaking, supine tachy, chest pain), however, the hospital they took me to was very helpful, albeit clueless. The doctor was willing to listen, and they gave me some fluids to make me feel better, and eventually my heartrate went down, and bp went up. Oh, and Corina, I can't do the beta-blockers because of my brady and hypotension...my body likes to swing like a pendulum so any drugs just do damage on one end or another...I'm too polar right now But thanks for the suggestion. Again, thanks guys for your support and thoughts. Happy New Year!!! Cheers, Lauren

"UGH!" is the word. I called yesterday to recheck the time of my appointment at Vandy and the nurse told me it has been cancelled! I was supposed to go down on the third, but it's been moved back to the 17th. I know that's only a two week difference, but I've been so sick lately that turning over in my sleep will send me into a two-hour tachy episode! I can't believe how sick I am. I mean I can't even wash myself at this point, my boyrfriend has to bathe me because I'm too weak. And now I'm looking at at least another two weeks of this ****. I woke up this morning, and for the first time, was dissapointed. I don't want to keep living if this is my life. I know (at least I tell myself) that things are going to get better, but I'm beginning to wonder. I was doing so well the past few months, and BOOM, I'm sicker than ever before. And I'm kidding myself if I think I can do school in three weeks! If I don't improve fast, I'll have to cancel the semester, which means four months of sitting in bed all day, every day, again. Okay, I'm done whining, I just needed to vent. Any thoughts, advice, or similar rants are welcome. Thanks for listening Cheers, Lauren

Morgan, How awful! I felt like I was going to pass out when I started P.T. but never did, that must have been incredibly annoying (understatement?). Keep up with it though, after a month of P.T. I began really improving (that is before the recent crash that's left me sicker than ever) but, yes, I did improve with P.T. Keep us updated on how it goes Cheers, Lauren

Linda, I'm sorry things are still acting up for you. You need a brake girl! Sometimes I wish I would pass out for like a week so I could get some rest! I'm sure you're feeling the same way right about now. I've been gone awhile, so I also wanted to wish you a (capital M) Merry belated Christmas and a POTS free new year. Hope things start looking up for you! Cheers, Lauren

Jacquie, After you rule out any life-threatening causes, you may want to talk to your doctor about o2 therapy. I've been meaning to mention this to my doctor because I've learned (from multiple trips in an ambulance) that when I feel really short of breath, laying down and o2 seem to help. I know my SOB is caused from low bp, I'll actually begin to pant if I'm standing for more than 1 minute. I suppose my brain isn't getting enough blood and it sends a signal to my body that says "no air". Have you tried laying down with your legs elevated when you feel this way? Okay. In a nutshell: Go to the doctor first. If nothings "wrong", try laying down with your legs elevated. Let us know how it goes. Cheers, Lauren

Carmen, I'm sorry and congratulations all in one I really hope the pacemaker helps with the brady. I have brady episodes and they scare the **** out of me, so I imagine the pacemaker will give you some relief there. At least your accessories are implanted so you don't have to spend money on jewelry? Sorry, that was an attempt at humor. I hope your christmas was POTS free and fun, and I wish the same for your New Year! Cheers, Lauren

Thanks so much guys, I feel a little better after reading your responses. I'm glad the T-wave isn't something to get terribly worried about. My cardiologist is new to me, so I wasn't sure what to make of his "don't worry" stance (because sometimes doctors say that and don't really mean it). I hope everyone had a wonderful christmas! i'll write more later when my hands stop shaking so much! Hugs, Lauren

Hi all, First, I'm sorry I haven't been writing. Things have been very bad for me lately, but I promise to catch up with everyone once I begin to improve. I really need some advice though. A few days ago I had a very scary episode that sent me to the hospital via ambulance. When I got there the doctors ignored me, didn't even do an ekg, or take my blood pressure, or even LISTEN to my heart! and sent me home eight hours later with a "chest pain" diagnosis. I went to my new cardiologist the next day and it turns out my ekg is abnormal (more than before). I have an "elongated T-wave". He didn't really explain what this meant, and said there was no point in exploring it fruther since I'm going to vandy in two weeks, but now I'm terrified. I've been having increasing chest pain and my crashes have become more "violent" in nature ( higher tachy, numbness, paritial paralysis etc.) This may sound silly but I'm worried I'm going to die. First, does anyone know what the implications of an "elogated T-wave" are? Also, I'm considering suing the hospital I went to for negligence, does anyone have expierence in suing? I've never sued anyone before and don't even know where to begin. Thanks so much for any advice and prayers you can offer. Merry Christmas, Lauren

Merry christmas Persephone. I'm glad everything arrived in one piece, sorry it took forever to send. Hopefully your next semester won't be so hellish. Hugs, Lauren

Pooh, I'll write more later, but I wanted to let you know that pedialyte seems to stay down when I'm sick. I hope you start feeling better soon! Man, we're all gettinh so sick on this forum, there must be a "crash" bug going around! Cheers, lauren

Hi all, Well, I made it from Hawaii to Maryland, however the trip wasn't easy. I began to crash a few hours before getting on the plane, but we didn't have time to go to the ER for fluids so I boarded knowing the flight would be difficult. It was. We hit turbulence...Capital "S" Severe turbulence within an hour of taking off. The plane was shaking us like beans in a tin can, and everyone began getting sick, including me. After about 1/2 hour of dry heaving (because I'd already evacuated everything in my stomach earlier that night) my heart-rate steadily climbed to about 200 bpm and hovered there for the next four hours. The flight attendants had to page for a doctor, and I was put on oxygen. For awhile, they ( the doctor, and the captain) thought we'd have to make an emergency landing in L.A. to get me to a hospital, but my heart rate began to go down as we approached land, so they decided to keep going. By the time I landed at Regan National I was barely conscious and my BP was around 60/40 laying down. I DID SURVIVE! I've been resting "comfortably" the past few days at my boyfriend's father's house, and I'm starting to recover. I can't write anymore, but that's the skinny. Hope everyone's well! Cheers, Lauren

Ernie, I'm so happy that the test went well, and I'm sure you're very, very relieved that nothing happened (as in your heart didn't go out ) Hopefully this is a sign that nothing is going to happen in the future. It must be horrible waiting for the diagnosis, espeically when you could tell the doctor knew what it was. Hopefully it's something treatable and simple (because lord knows we already have enough untreatable, complicated stuff going on!) You're still in my thoughts and prayers. Hugs, Lauren