Dizzy Dame

Happy Birthday Nina!!!! I hope you had a wonderful POTS-free day! BIG HUG - Lauren

Hi all, As some of you know, I'm writing a series of poems inspired by living with POTS. The collection isn't finished, but I've submitted some of the poems to literary journals for publication. Two have been accepted so far for the Winter 2005 issue of "Convergence", a literary e-zine. For those who are interested, I've posted the poems below so you don't have to google them. I just wanted to thank all of you. I would still be crying in bed and feeling sorry for myself if it weren't for this site, and would never have begun writing again if it weren't for your support. Cheers, Lauren The Arrival There is no one to stifle this cry. The metal, unmoving parts of this hand this foot, under thick blankets, are only my own. Cells replicate: we each fill our longing with the other. I have stopped calling you. Mountains, my love, rest between us. Deer Comes to Eat Berries, After Months of Bark For months she slept in the snow. Mute, half buried among the alder. Her breath drew slowly, sap hardened, the night churned. She will emerge, a brown rubble of angles, weak and hungry, her ghost slung limp in leaf thrush. A portion of this beauty is disbelief. The world turns unevenly, and so, the heart.

Thanks for all the suggestions. I'll keep everyone posted on what they find. I can't believe that yet another thing is going wrong with my body can't I get a loaner until this one is fixed???

I'm not sure. I have had ulcers in the past if that makes a difference. Isn't acid reflux the same as heartburn?

Hi all, I know that Dysautonomia affects the GI tract. I think I'm beginning to expierence the wrath! For the past two weeks, any time I lay down for more than 30 seconds, I get searing heartburn. I mean I can't sleep at night! It's beginning to hurt to swallow food too! I had a few questions: 1. Could this a sign that my gallbladder needs special attention? 2. Can heartburn do real damage? 3. Can anyone guess how quickly I need to get to a doctor? I ask the third question because my internist is on vacation for the next two weeks, so I'd have to go see a different doctor, or go to urgent care. If I need to take this heartburn seriously, I don't mind seeing someone else, but if this is no big deal, I'd rather wait. Also, do any of you have home remedies for heartburn? Thanks in advance, Lauren

They did rule out blood clots, right? Please tell me they did a CAT scan. If not, and you're still having shortness of breath, you should call your doctor right away, or (and I hate to say this) go to a different ER. I've heard that people with POTS have a higher chance of developing blood clots because our blood pools all the time. Two years ago, I developed a clot in my leg that killed my right femur. The entire bone died! If that clot had lodged in my brain, or heart I wouldn't be writing this post right now.

Belinda, did they find anything to explain your shortness of breath? Also, I learned early on, that I have to remain composed and even chipper when I go to the ER. Most of the time, ER docs have never heard of Dysautonomia, so I tell them I have Autonomic Neuropathy (since I do). Then they take me more seriously and consult a neurologist, and also usually call my POTS doctor. When I first got sick, I had a similar breakdown in the ER, and they put me in the psych ward with "panic attacks". That was a mistake! I was almost attacked by one of the people on the psych ward (a girl ran at me but the staff grabbed her in time) Imagine what that did to my heartrate!!! It stinks having an illness that is rare and unheard of. We have to learn ways of making the doctors take us seriously. I hope you feel better though. And don't feel bad about what happened in the ER, it's not your fault that the doctor was an ignorant ****. Cheers, Lauren

I'm in physical therapy as well (after five months in bed, I was barely strong enough to walk). I do all of my excersizes laying down, and we go very, very slowly. So far, I haven't had a single flare up. You may want to research excersizes you can do while supine, go slowly, and rest if you feel tired. I was very active before I got sick, and one of the difficult things about it is learning to pace myself. I can understand if you're frustrated. But if you work slowly, you should do fine.

Dayna, I'm glad to hear your depression is a normal reaction. I've wondered about this myself. Most of the time, my family tells me to "bite my upper lip" when I begin to cry about being sick. I had an aunt who had rhumatoid arthritis and they always compare me to her saying "you know, Beverly never wallowed in her illness". I've been made to feel like I'm weak for being depressed about being sick. Hearing that this is normal, that I am normal, makes me feel empowered. Thank you so much for posting on this. -Lauren

YES!!! I call it "phantom itchiness" because I usually notice it when I go to scratch an itch. It's wierd, and for me, a little scary. How long does this last for you?? I usually get this sensation for a day or two and then it passes. I thought I was the only one who had this. I'm going to ask about it when I go to Vandy in December. I'll let you know what they say.

Pooh, If you feel better without the meds, why take them? My doctors originally tried me on all sorts of meds, but we eventually came to the conclusion that I was most functional without the medication, despite the tachycardia. I'm just wondering what benefits you're getting from something that makes you feel sicker than without it. I do hope you have a wonderful thanksgiving, eat lots and enjoy yourself. Cheers, Lauren

I have what some describe as "air hunger", where I just can't get a satifying breath. I've learned this is a sign that my bp is low, and if I lay down, it goes away. I also have difficulty breathing at times: it feels like I'm having to "remember" to breathe, and that I have to work harder to get my chest to expand. My POTS doc says this is likely due to my dysautonomia (since breathing is governed by the Autonomic Nervous System). Of course, having difficulty breathing should always be taken seriously when it first appears. If this is a new symptom for you, you should probably go to the hospital to rule out the bad stuff (blood clots, asthma, allergies). If nothing shows up, talk to your POTS doctor... at least that's how I handled my breathing problems. Good luck, and let us know how it turns out. Cheers, Lauren

Like everyone else said, this is a sign of a healthy heart. Noone's heart beats in a continuous rhythm. Just as a normal heart slows down at rest, and speeds up with activity, it also slows down and speeds up with respiration.

I've been taking Orthotrycyclin Lo for a few years now. I haven't had any problems. Before I went on birth control, my periods were horrbily irregular and very painful. Now I only menstruate (sp?) for three days and it's very light. Don't be scared. The active hormone in birth control is progesterone, and it's already present on our bodies. It's not any new chemical that we would have to adjust to. I hope it goes well for you, Lauren

No MSG. The link above is to a store that makes them by hand, and lists the ingredients as salt, sugar, licorice and aspertane. I talked to my doctor about the aspertane, and he said that if I'm only eating four plums a day, I shouldn't have any problem with it. I'm sure you could find plums without aspertane. I'm sure I've tried the japanese plums. The neighborhood I live in is often referred to as "Little Tokyo". When I first tried the plums, I bought them from my local grocery store (which is a japanese grocery store) they were very sour. I eventually found slightly sweeter versions of the Li-hing that I could stand. I also have a major problem with MSG, so I understand your fear.

My endocrinologist reccomeneded I get the flu shot, my internist thinks I couldn't handle it if I had a reaction, and my POTS doctor wants to wait until I go to Vandy. So I don't know what to do I tend to have strange and violent reactions to everything that enters my body...including a lot of foods. Oh (sigh) the life of a potsy

I eat the soft, powdery ones. The taste of the plums varies depending on the manufacturer. There are some that are sweet, and taste like salty prunes, there are some that are so sour they make me throw up. I try to go middle-of-the-road. I don't eat them with anything. I just nibble on them, and chase them with gatorade to wash all the salt out of my mouth. And yes, they are an aquired taste! Believe it or not, my cardiologist here was the one who prescribed them to me. He actually wrote them into my file as part of my treatment regimine. He says there's no food that's saltier on the planet! Go figure! Otherwise I'd never have stuck it out. Yep, they're salty alright!!!

Linda, I'm so sorry to hear you didn't get the answers you were hoping for. Hopefully Dr. Grubb will be able to figure out what's causing your incredible heart rate and get your poor little heart some rest! I'm getting ready to go to Vandy next month, and fear the same answers. It must be very hard. Keep your chin up though, if it is POTS, then maybe it will just resolve on it's own I also hope he gets to the bottom of your pain. I know you've been in agony frequently and you need a rest girl! Take care, and try not to dwell on the bad news. ((((Hugs))))) Lauren

Finrussak, The rehab is seperate from the hospital. It's just a physical therapy/cardiac rehab clinic run privately and owned by my therapist. I asked my doctor about cardiac rehab and he wrote me a perscrition for the place. I didn't have to do any begging or convincing, so I don't have any advice on what you should say to your doc. best of luck, Lauren

Hi all, Dancing Light asked me about "Sweet Li-Hing Mui" I eat for salt. They are pickled plums and they have about 1/2 a gram (500mg) of salt per seed. I've been eating four or five throughout the day for months to get my salt. I found a place that sells them online for those who are interested. They're an asian snack and are very popular where I live in Hawaii. Here's the link: http://www.crackseedcenter.com/Category.aspx?categoryID=28 As a disclaimer: the plums are very bad for your teeth, and if you eat them, you should brush your teeth shortly afterwards...all that salt corodes the enamel. Also, they may make you naucious (sp?) when you first eat them because of all the salt, however, I got used to them after a week or so, and now I crave them all the time. Happy snacking, Lauren

Emily, I take a handi-cab (cab with wheelchair room) to the appointment, which isn't far away so it's cheap. I can't walk more than about 50 yards without having to lay down (or collapsing), so the wheelchair has made me more mobile. I start out by stretching. I stretch my legs by bringing my knees across my chest (hard to explain), and stretch my hamstrings while lying on my back using a rope (kind of like a stirrup). I rest alot too, usually for every five minutes of "excersize", I need one to two minutes of rest on my back with my legs elevated. The excersizes I've done so far are ankle rotations, leg lifts, and "bench pressing" two pound weights-- all while lying on my back. I'm pretty weak, so even this excersize wipes me out. Today we wanted to try sitting excersizes, but my blood pressure dropped too low before we could even start! I wear a pulse-ox probe on my finger while I'm working out, so we can keep track of my heart rate, as soon as it gets too high, we stop. Don't get me wrong, I feel dizzy and pretty bad after therapy. I usually go straight to bed and need several hours to recover. However, I need to do this. Staying in bed all the time, I fear, will only make me more sick. Still, I can feel the difference it's made even in this past week. I have more energy...today I even cooked myself breakfast (in the microwave )

I've never been diagnosed with seizures, but I was on neurontin for Fibromyalgia. I just wanted to warn you, and anyone with POTS, that neurontin can cause hypotension, and my doctor took me off of it when I developed POTS. Just thought I'd give a heads up.

Hi all, I started cardiac rehab / physical threapy about ten days ago. I go five days a week for one hour. I started going because I'd spent the past six months in bed and was getting to the point where I was too weak to wheel myself in my wheelchair, or open a bottle of gatorade. I was skeptical at first. I assumed the thrapist was going to make me work to hard and tach out, but my first visit was suprisingly painless. Over the past seven visits, I've been able to excersize (spelling?) while keeping my heart rate down (we rest if it gets over 115). My therapsit has also taught me a bunch of excersizes (sp?) and stretches that I can do while lying down. I'm getting a little stronger each time, and I've noticed I have a little more energy than before. I really feel physical therapy has been wonderful. I'm not cured by any stretch: I can only stand for about 1 min before collapsing, but we both think we can improve that through working my leg and abdominal muscles. I was wondering if any of you have had similar experiences. What kind of "workout" do you do with your threapist? Are there any excersizes you've done to improve the "blood pooling effect"? Anyone had bad expierences?

Good luck Linda! Keep us posted on how it goes ((((Hugs))))) Lauren

Part of my dysautonomia is difficulty regulating my core body temperature. My blood vessels, I assume, just don't contract and dialate as they should, so I get overheated easily. Cold weather affects me as well for this reason--I begin to shiver if the weather is colder than 60F, and my feet and hands go numb if I'm in a cold room for too long. Could you have the same problems with body temp?