Merrill

Migraine, if it's antihistamines you need for your allergies, take a look at this separate discussion thread: http://dinet.ipbhost.com/index.php?showtopic=666

The doctor you want to see at Vanderbilt is Dr. David Robertson. I was told by the head of cardiology at Johns Hopkins that Robertson is THE leading researcher in this field. I spoke with him by phone; he was sooo kind and generous with his time. Dr. Low at Mayo in Rochester was also recommended to me, but hey, he's not in Nashville! Good luck; I hope you can get in to see Dr. Robertson.

Hi all -- It's been a grand day in Chicago too... Fantastic thunderstorms and hard hard rain and cool breezes kept us in bed all morning... just listening to the beautiful sounds of rain on pavement and leaves outside the window... Breakfast at nearby diner despite the rain, then just hung out doing this and that. Rain finally cleared this afternoon and I spent the last 45 minutes in the garden, weeding, mostly (which is so much easier after a rain), and thinking about rearranging some plants. I realized, though, that I had made nowhere near enough progress toward my 2 liters of water... so I came in for a glass and to say hi to you. Worst problem today is intermittant sciatica pain (not really pots, I don't think) but that too will pass. Glad to hear about nice days elsewhere... and as Jess said, your day too will come soon if today wasn't the one! Keep the faith, Merrill

Is claritin (OTC) / clarinex (prescription) an antihistimine? (Funny that I don't know that -- but I take it for my allergies and like it a lot ... works great w/no side effects.)

I agree, Sue. What a treat it is to see Jessica and Katherine's beautiful families!!! Thanks for sharing your Web sites... If I had a site, I'd share pictures of myself and my husband and our wonderful Green Cheek Conure, Jojo. She's sitting on my hand as I type. Sometimes I think she's just about as much "kid" as I think I can handle... and when she needs a time out, I just put her in the bathroom and shut the door. I don't think you're allowed to do that with a real kid, tempting tho it may be sometimes. If you do a google search for green cheeck conure, you can get an idea of what she looks like. I could write for days about her delightful personality... You can see the house we live in on television! Although the season just ended, they may show reruns this summer ... The Monday nite CBS sitcom Still Standing (starring Mark Addy and Jami Gertz & 3 kids whose names I don't remember) uses (video of) the exterior of our house as the setting. That is, the "Miller family" supposedly lives in our house. We like to watch just so we can say, "Hey, there's our house" when it comes on... as if we couldn't just walk outside and take a look. Fun, huh? Have a good weekend, everyone. m

Morgan, just wanted to add that I too am thinking about you in this sad time. Kitties are the best, as well you know...It sounds like she had the best life possible under your care. I know you'll find another little friend soon to love and share your life with. All the best, Merrill

Good luck, Nina. You'll be great! Boston's a fun town--have some chow-dah for me!

Tearose, I think moving to a one-story home is a great idea! (I think about it myself every now and then...) Any help you get from the movers will be well worth the cost...I've done "full-pack" moves the last couple times I've moved, and while it saves me from going through my stuff and throwing things out (both a good thing and a bad thing), it allows me to stay calm through the process and save my energy for putting things away where I want them in a new place. I hope you'll find other advantages to your new home as well... maybe there's a pretty little tree out one window, or space for a bookshelf you didn't have before, or an extra drawer in the kitchen. It's the little things, you know? Good luck! Merrill

This is sooo interesting to me. I posted about being thin on the other question about diet/protein... but yeah--oh my gosh how mean people can be!!! From high school through my late 30s, when I finally put on a little weight, I got the most obnoxious comments and stares from people! It was horrible... and of course I didn't know why I was thin either since I ate and tried to gain weight (tons of milkshakes and stuff to add calories). If I had only known, I'd have offered a simple explanation, felt more confident in myself, and moved on. Life was TOUGH -- finding pants small enough to fit my skinny frame yet long enough to reach my shoes (I'm fairly tall--taller than the "regular" size 2s and 4s out there.) It's true that people are way meaner (out loud anyway) to skinny people than heavy people. ("Why are you so skinny?" I even got, "I hate you, you're so thin." Thanks a lot, buddy.) OK, friends, I gotta go make dinner for myself! Merrill

Migraine, I totally agree! I too remember the high school swim teacher making me swim--screaming at me from the side of the pool, while I held onto the edge for dear life. I could barely breathe! I got out of that class and took dance for the rest of my high school life... I didn't have a clue what was going on with my health, of course. I knew I had little stamina for exercise, though (and that dance class meant either sitting on the floor and stretching or doing exercises at the barre and I could hang on!) I also had major GI disfunctions since a kid and took different kinds of meds for what I thought (in my 20s) was simply "nervous stomach aches." A cryer! Yes! Still am! (Thank G-d I have a husband who doesn't seem to mind; he just lets me go on and on sometimes, hangs in there with me, and doesn't judge.) Anxiety attacks, dry mouth, low energy, heat intolerance, sleep problems... the symptoms were all there always--but when you're young, who thinks about your heart? When you're 42 like me, you start to wonder whether the old ticker can withstand this kind of racing, and you finally go after a diagnosis! So that's my story. It IS a blessing that young people not only are getting answers earlier, but that they have a place like dynakids to get support and share ideas and experiences, much as we do here. Hang in there Beala--Your son WILL get better... once some adjustments are made to his meds and his lifestyle (I'd put that head of the bed down and see how he does) ... It's sooo important (I think) for him to know that he's not alone in this--even if the people who share his experiences live in other states! If he can connect with others through dynakids or some other support network, it would help! (Most of us never had acccess to that kind of thing). I wonder too how much teenage hormones add to the picture. Time will tell, and time will heal. (One footnote: I went to a Middle School conference last year and attended a fascinating session on adolescent development. I know your son is out of middle school, but the several-times-daily testosterone rushes that adolescent boys experience lead to what they called "brain freeze." So you know how sometimes you ask your teenager "What were you thinking?" and they answer, "Nothing" -- they're actually telling you the truth! The mind does indeed go blank for a minute there.)

I was skinny skinny skinny (to the point people worried about me, but I ate!) all my life (and I think I've had symptoms of pots since I was a teenager). I could never put on any weight, no matter what I did. Finally, after I met my husband-to-be in 1996 (I was 35 and 5'7" 108 pounds), I started to put on weight. And put it on, and put it on. Something in me calmed down, I guess; I have no memory of difficult pots symptoms for a few years, and I put on 40 pounds. I've been more symptomatic in the last year and a half; I dropped 17 pounds the first year with no diet changes and then got diagnosed in January. Yes, I feel much better at this heavier weight (and I look better too ) ... I'm at a comfortable weight now, but every time I buy new pants, they don't seem to fit a few weeks later. If I could move into a different pots stage, my weight would stabilize again. I'm sure of that...

I'm also wondering what following a diet like this would do for people who don't have weight to lose... A lot of people with pots, especially those not on medications (myself included), have trouble keeping weight on ... When my symptoms get worse, I drop weight just breathing. Just thought I'd add that footnote. m

Hi Sue ... Glad you're headed in a positive direction with this thing! I will watch with interest to see how this change in diet affects you...we all may learn something. I'm curious about the protein piece... As I wrote in an earlier post, when I wasn't feeling terrific over the weekend (and I had tried the usuals...rest, [but couldn't fall asleep], water, salt, gatorade), I felt better after I had gotten up and eaten some grilled chicken. My head felt clearer and I recovered some sense of myself. Energy better too. I've only eaten fish and poultry as (animal) protein sources for the last 24 years or so... and certainly not every day. Are other pots sufferers vegetarians or fish/foul vegetarians? Does extra protein help with your symptoms as it seems to be doing for Sue? Thanks, merrill

Hi, Tearose! I've missed you! I'm having a sleep study of my own in a couple weeks; I think I've developed sleep apnea, but want to know for sure. I also am aware of rapid heart rates during the night, because I too wake frequently to the point of consciousness and feel the fast pace of it. (But my holter showed a drop of hr during the night to 67 bpm, so I know it does go lower sometimes, and so I know it's not IST.) I always figured the racing during the night had something to do with the extraordinarily vivid dreams I have--so vivid that I have a hard time distinguishing between dream and reality... Were you diagnosed with sleep apnea too? (There, the blood oxygen level drops low b/c you've stopped breathing--the brain triggers an arousal and message to breathe again.) All very interesting! Thanks for posting, Merrill

Hi, Jess. Your note brought tears to my eyes last night (I was pretty weepy all day as you can imagine) ... Could you possibly be any kinder? Don't think so. Next steps? One in front of the other, I guess, one day at a time. Need to let my soul catch up with my body, as a good friend likes to say. This process is phenomenally demanding, both physically and emotionally. And with other family issues that weigh heavily... some days, frankly, I have nothing left. I can't seem to shake this dark cloud I've been under these last few years! (My husband and parrot are under it with me, thank goodness, and they remind me that brighter days are out there waiting, somewhere.) In the meantime, I try to stay on top of these POTS symptoms (I just walked a few blocks to get a favorite salad for lunch and thought I'd have a heart attack before I got back to my desk! I didn't, of course. ) and fantasize about the last three embryos sitting in a hospital freezer with my name on em and I try, how I try, not to feel so darn old. Sigh. Keep a good thought; I feel better just knowing you will. Peace, Merrill

Hi Danelle -- How are you feeling tonight? I hope you're on the mend after that horrific day you had. How terribly scary! You did exactly what I would have done if I had been hit like that... get the heck out of work and take a good long nap! Whatever feels good and right when you get sick, you should do! (I had a similar-but-not-as-bad spell over the weekend ... after resting and drinking gatorade, I found that the only thing that made me feel any better was to get up and eat some protein [grilled chicken]) I know you're a nurse, but I don't know much about your work environment. It's my guess that you're under a fair amount of stress--I imagine that working in a health profession and dealing with the public would be enormously challenging. But are your colleagues supportive? Are they kind? Do they know what you're up against sometimes--and are they compassionate in response? (Or do you feel like you're off on your own, unable to share? This would be very bad...) I'm hoping that you work in a place that represents something more than a paycheck--or that the work you do provides some kind of payment you put in your soul, not in your bank. All that's to say, I'm a firm believer in work and in staying connected as much as you can to a kind of work--and to a kind of place--that can be sustaining for you. That may ultimately mean finding a different workplace or a different type of work; it may also mean cutting back your hours even more than they are right now until your symptoms normalize and you figure out why there's been a change in your physical health. If you can work one hour a week, then do only that until you're ready to do more. Nina/MightyMouse makes a good point about the meds. It's true that there are known POSSIBLE side effects... but a couple reminders: 1st) you won't know how you'll react unless you try and 2nd) even if you experience side effects right away, you have to stick it out for a few weeks--many people seem to report that those side effects go away! That may happen for you too--and you just may feel better. The fact that you're in the care of one of the leading POTS docs--and that you've been experiencing an increase in symptoms--makes me think it might be time to give him a call and even to try midodrine under his supervision ... or florinef. I hope you'll take this letter in the loving spirit with which it is written. I haven't any advice to offer as to how to go about getting disability, except that people have successfully done so after long battles, which I've read about on this Forum and on NDRF.org. Most of all, I hope that you get better soon--keep telling yourself that you will, that this will pass! (It just has to, doncha know! ) All the best, Merrill

Karen, I'm not on any medications for a variety of reasons (some of which I've posted elsewhere and don't have time/energy to repeat). I'm OK without them; some days (or some hours during any day) my symptoms are less tolerable -- and I just have to go sit or lie down, drink a glass of gatorade, complain to whoever wants to listen for awhile--tho mostly I don't feel like talking cause it's hard enough to get the words out sometimes! My body seems to set its own limits, and I'm learning to listen better to what it's telling me. I've had this forever, but I learned what to do to take better care of myself only a few months ago. Since I started doing the things described in earlier post today, my hr has come down some; I just checked, and my pulse sitting ( 105) and standing (128) tell me that I'm slowing down a little. I don't monitor my hr, and I try not to check too often--knowing what it is doesn't help me much. I'm forgetting the name of the irregular beats; it's been awhile and I'm either old or brain foggy or both. Let me know if it's important to you, and I'll check my records at home tonight. Thanks for asking, Merrill

HEY! Finally someone voted that they had a child after being diagnosed! I thought I'd never see that day! Who are you, and what was your experience??? Did you have trouble getting pregnant? (How old are you?) Did your symptoms get better for a while during pregnancy b/c of your increased blood volume? (I've been told that might be the case for me...) Just got the news of a second failed in vitro attempt, but under ridiculous stress lately on top of all else. best to all, m

Veryblue, just curious, did you read my reply to you on May 3rd above? Please reread it. The reason to ask your cardiologist to look again at the details of your 24 hour holter monitor is to find out what your heart rate is WHILE YOU ARE ASLEEP (not to look at the sinus rhythm). The answer to that is essential. For people with POTS, HR goes down during sleep... and that's not because we're lying down. (What happens to our bodies during sleep is different than what happens during wakefulness--no matter what our "posture." And what happens to your heart rate during sleep if you have IST is different than if you have POTS; at least that's how my cardiologists explained it to me when they were giving me a diagnosis.) Also, it doesn't sound like you've had a tilt table test. It only sounds like you're trying to measure your heart rate yourself. The TTT is one test that's considered diagnostic for POTS. If you haven't had it, ask for it. And again, blood pressure changes all the time--for everyone, including people without dysautonomia. Checking it by yourself can make you more anxious, not give you the data you crave. (BP is not what doctors look at when they're trying to find a cause for rapid heart rate; it does, however, explain a host of symptoms--including fainting--that SOME people with POTS suffer from.) People on this board can help you to the extent that we understand what's going on within our own very complex bodies. We all suffer to a different extent with our POTS; we all have different test results, different reactions to medications, different lifestyles, and more. We can share all that information and provide encouragement and support, of course! That's the best part! But I just don't think anyone can give you a definitive answer! And as the forum disclaimer notes, "The content of this forum is in no way a substitute for professional medical advice, diagnosis or treatment." By the way, if it's any consolation, my heart rate--as well as many others on the forum--is way higher than yours both sitting and standing and lying down too. I've learned to accept it, I live with it, and I take care of myself as best I can. I drink a lot, salt my food a lot, wear compression hose 18 hours a day. I try not to worry about it so much; it's not dangerous, my heart muscle is of normal size and function. (Irregular heartbeats, of which I had more than a thousand during my 24-hour holter, are also considered normal.) That's my experience; hope it helps you some way. Also, as MightyMouse suggested, you should try to do some reading of the research articles available on the NDRF.org site as well as on this DINET site. Good luck.

Hi -- I would absolutely include the information/article on POTS! What could it hurt? It validates everything you're going through and provides the science to back it up. There are other articles--not about quality of life issues, but about the diagnosis and treatment of POTS--that you can also send (probably available on this Web site or on NDRF.org. If SSDI reads them, all the better. I wonder if you can document the things you're sending them... (take a picture? Definitely keep your own copy of everything...) so you'll always have that info for your lawyer, if it comes to that. Good luck--I'm sorry you have to go through all this... it requires enormous fortitude on your part, but I can tell you're up to the challenge. Take care, merrill

Thanks, both of you! I appreciate your good wishes!!! Best to you too, Merrill

VB, I would hope that the results of your poll wouldn't color a decision you have the privilege of making about graduate school ... There were 30 "votes" -- out of what, 1/2 million people (minimum) that are believed (by leading researchers) to be out there in this country alone who are coping with the symptoms of POTS. I've been visiting this board for a few months, and even in that brief time, people have come and gone... Maybe they feel better or got their questions answered! It's great that you feel decent now--playing softball and dancing and going to movies and doing all the things you SHOULD be doing right now! You're doing great! Not a person in the world, healthy or afflicted, has a clue how they're going to feel in 5, 10, 20 years--tomorrow even! Live for today!!! It's all we have! And if today you can open a book and expand your mind, I say -- GO FOR IT! Congratulations on your admittance to NU Law, by the way. That's fantastic--you'll love living in Evanston... and the glories of Chicago are but a fast heart beat and brief train ride away! (You'll also have access to some of the best cardiologists in the country.) Oh, wait. Law campus is in downtown Chicago. Nevermind -- You'll love living in Chicago, and fabulous Evanston is but a fast heart beat and a brief train ride away! Take 'er easy, Merrill

My 91 yr old father-in-law (who lives far away) is having his pacemaker replaced (adjusted?) next week ... he's had it a number of years and I guess the batteries are wearing down... Is the procedure risky? Lengthy? In-patient or more typically out-patient? (I can imagine they might want to observe him overnight...) Thanks, merrill

Hear! Hear! Goldicedance, you've said it well. In my experience, it's the insurance industry, not the doctors... Sigh. It's a political problem as well as a social one. But there's an election coming up in November...

Jessica, you're just the sweetest, and I've always thought so. Thank you for your reply; it means a lot to me!.