Merrill

Hi, Gena. I'm so sorry things are so tough for you right now. When it rains, it pours--and when it's raining family discord and illness--your own and others--you might as well be standing on the beach during a hurricane. Hang onto whatever tree you can find! I'm sending healing thoughts your way, m

James, I won't ask how you're managing to take your pulse while you're peeing (to know whether your hr is going up or down) ... but I do want to add that urination can sometimes cause overstimulation of the vagus nerve, which can cause a drop in heart rate and blood pressure--and I don't want to scare you, but in rare circumstances you can pass out. My husband passed out once (and thank goodness only once) while urinating ... luckily he didn't hit his head on anything! After a bunch of tests in the ER (I insisted he go for tests, although he didn't want to go--we were dating at the time and I told him he was not allowed to pass out in my house), they told him it was related to vagus nerve stimulation. It's not common, but it can happen to anyone. Doesn't sound like you've passed all the way out--just sensitive to your heart rate while you pee, I guess. Can you distract yourself with thoughts of bunnies nibbling dandelions in the field or sex or something while you're so engaged instead of thinking about what changes your body's going through as you pee? I like Tearose's idea of sitting down altogether. Sounds like a grand idea. If you want to learn more, try doing a google/internet search with the key words "urination and syncope and vagus nerve." best, m

Emily, a.k.a. dancing light, asked me to tell you that she was "blown away" by all the kindness and support she received in her big brown envelope!! A humongous THANK YOU for this enormous spirit booster!! Emily savored every card and message and has saved all of them!! Just a quick update....Last weekend, while I was away, Emily wasn't feeling too well, but she survived without me and I did enjoy having a little respite from caregiving. She stopped the intravenous fluids this week and after much stress and fighting with the local doctor's office, she had the PICC line removed yesterday. She actually has started to have a little appetite which means that I need to cook something other than just chicken and vegetable soup. As you might guess, she is still pretty exhausted and just sitting up for a short while makes her tired...she hasn't started doing any laps around the hallway!!! Now that the PICC line is out, we are planning a REAL bath and shampoo tonight!! THANK YOU so-o-o VERY, VERY MUCH for your time and thoughtfulness in writing to Emily...She sends you a BIG, BIG hug!! Thank you for taking care of our girl, Renee and Asher

Yes, I get this too when I lift my arms over my head. Washing my hair is especially brutal, which is why I do it seated in the shower. I can take my time with plenty of breaks with my arms to my sides. I also get a weird blood rushing thing--with arms up, the feeling goes out of my arms as I can feel the blood draining downwards; lower my arms and the blood rushes back with a tingling feeling. It's sooo hard to describe! Happens all the time in yoga and is quite annoying. The irregular heart rate has normalized somewhat with beta blockers, though. You're definitely not alone in this! Merrill

Dawn, ever the contrarian, I need to offer an alternate perspective. As you know, there are few doctors' offices and medical facilities in this country that are capable of diagnosing POTS and treating its diverse symtoms. Dr. Low and the Mayo clinic are tops in the field, and many many people who frequent this board have had extremely positive experiences in getting the kinds of tests that are simply unavailable almost everywhere else. Mayo can assist in diagnosing dysautonomia, but ongoing care typically comes from people's local internists, cardiologists and electrophysiologists, and neurologists. It sounds like you got a form letter, not poor care or ill treatment. It's probably safe to say this is the same form letter that is sent to everyone who wants support from Mayo in disability claims. Don't give up--just go see another cardiologist or neurologist and see if you can get that second signature somewhere else. It's impossible for any of us to know what it's like to live in anyone else's skin ... and that couldn't be more true for people with dysautonomia because the symptoms are so varied and our capacity to tolerate those symptoms is so idiosyncratic. Why can one person be unable to function and another person--with the same high heart rate and fluctuating blood pressure--work full time? I haven't a clue. But it's true. I'm a pots lifer, with ridiculously high heart rates (now controlled a bit by beta blockers) and a host of other symptoms. But I do work full time (seated 99% of the day) and make necessary lifestyle adaptations to do so. I write this ONLY because it's important that new people come to this board and learn about how to take care of themselves and understand that many different things are possible with this condition. I truly hope you're able to get the signatures you need... but what I hope more than that is that you find the right combination of medicines and lifestyle changes and medical care so that you can enjoy a return to health and strength and energy! That is my sincerest wish for every person who reads this note. Best, Merrill

Radha, a cpap machine helps people with sleep apnea (those who stop briefly stop breathing during sleep) contine breathing during the night. You can get tons of information by typing CPAP machine and sleep apnea into google. Here's one of the first sites I found: http://www.sleepapnea.org/cpap.htm best, merrill

I gotta tell ya, I got hired as an "extra" for the movie Music Box ... I was to appear in still photographs that were used in one scene ... and I was a Holocaust victim, so I was dead and technically lying down. (This was fifteen years ago...) It was grueling and exhausting and extremely unpleasant. You do NOT want that job ... and if you cannot take an extremely high level of stress, you also do not want to be a newspaper editor! That's my sourpuss 2 cents for the day. These job strands are extremely clever... If I can think of anything more positive to say, I'll add. For now, I'm grumpy. Maybe it's from the unpleasant memory that just got stirred up... Happy Friday! m

Jell, the answer to that question is not yet known. Researchers are working on it. People have experienced onset of POTS symptoms following a virus, a pregnancy, a trauma/accident, and a surgery. I did not have onset following one of these precursers, yet I know that I did not inherit this syndrome either. 'Tis a mystery ... Best, Merrill

Be careful there, Ernie! Mary, I'm really happy that you've finally find a physician you can work with and who's gonna be in the trenches with you, fighting to get you pain free (or close). YAY! m

Hey, Mary, how'd your appointment go? I've been following your story and hoping you're doing a little better. No, a LOT better! Best, m

I can add this ... According to the NDRF handbook's glosary, hyperadrenergic orthostatic intolerance is "a condition where an inability to tolerate standing up is combined with signs or symptoms of excessive levels of catecholamines such as epinephrine (adrenaline)." Here's the URL to a page from the Handbook for more info: http://www.ndrf.org/NDRF%20Patient%20Handb...cA_pp59-134.PDF It's a little confusing, but it's something! Best, Merrill

Congrats, Jess. So happy to hear you're feeling well these days. I adore Disney World, lucky dog. Jealous! Stay well and have fun, m

In the midst of struggle and hardship, there are still good stories. This just in from Emily's mom (subject line: new direction) Just a quick update to tell you that the doctor has made two changes >in Emily's meds that we hope will help her. Last Sunday, he started >weaning her off the one that apparently was responsible for all the >near fainting episodes the previous week. There was some re-bound >from that change, so this Sunday, he added another dose of her >beta-blocker which seems to have helped her today. > >Today was a better day than Emily has had for several weeks. She >had her IV fluids today, which gives her more appetite and more >energy, so we got her hair washed ...Oh, the small pleasures of >life!!! >I'm also getting the hang of doing the IVs...no more disasters... > >Thank you for taking the time and energy to post and arrange for >mail from DINET. > So that's the scoop; since Emily's the silent type these days, I'll thank you all for your healing wishes on her behalf. m

Hi, everyone. As long as we're on the topic of migraines here, I wanted to recommend a book that was just published: All In My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache by Paula Kamen. Paula is a friend of mine--and I was delighted to see her book front center eye level on the new nonfiction rack at Borders over the weekend. I think most of us will be able to relate to her story on some level--she describes her battle against an invisible chronic illness (headache pain) with great humor and clarity. Here's part of what's on the amazon web site about the book (I'm not promoting amazon here--in fact, I AM promoting your neighborhood independent bookstore so that books can continue to be published by smaller publishing houses ... but that's another rant. ) From Publishers Weekly Imagine the sensation of a fishhook lodged behind your left eye and tugging backwards. Now imagine that you live with that pain 24 hours a day for 15 years. That is Kamen's headache, one that she attempted at first to cure but finally learned to accept. Kamen (Her Way: Young Women Remake the Sexual Revolution) first tried all sorts of drugs?some were addicting, others made her gain 70 pounds in six months; none had any effect on the pain. She turns to alternative medicine: cranial-sacral adjustments, acupuncture, gluten-free diets, magnets, yoga. Kamen intersperses her account of these increasingly bizarre treatments with a look at how Western medicine, and even feminism, abandons patients with chronic pain and other invisible ailments: since her pain has no discernible physical cause, she has been told it's "all in her head." This book may not be uplifting, but it is undeniably funny. Kamen's irreverent sense of humor about her pain and herself makes the book a delight to read as she unabashedly pokes fun at the corporate pharmaceutical industry (even while she hopes for a test-tube cure), doctors and other caregivers. Kamen makes the reader understand what it is like to be happy even while one is in pain. http://www.amazon.com/exec/obidos/ASIN/073...1070346-2244700 I hope everyone's feeling pretty good today ... m

Good work! I'm happy for you and with you. Take care, m

My heart goes out to you and your family, Purplefocus. Someone posted a beautiful MLK quote on this site months ago, and it's stayed with me: "Only when it is dark enough can you see the stars." Soon you will see light again ... hang in there. Merrill

Radha, are you taking a beta blocker? If not, you should definitely consider doing so ... low dose may be all you need to make eating, and life, more fun! If you tried it before and you didn't like it, try again, only split the dose in half. It can make a huge difference; my own problems have been made better by 25 mg of toprol xl once a day. And I agree with India and her friend about the sitting up like a proper person and not dining on the couch, easy chair, whatever. The postural piece is important to stave off symptoms. (Not to mention that it's better for digestion generally.) From past posts I know that you need to get some food in you, girlfriend. Try not to think about it too much, try the beta blocker, and if those things don't work, try to let your heart beat fast without fearing something's wrong. It's all OK! (I know, I know, easier said than done. But that's my 2 bits for the day!) Take care, merrill

Morgan, I don't know whether you're up for reading all the posts these days... in case you're not, I saw that you wrote that you're looking for a reply from Emily to your emails. I don't want you to feel disappointed that you've not heard from her (on top of everything else you're going through); it's my understanding that she isn't up for emailing or being on the computer to read forum posts etc. right now. But she's groovin' on snail mail, so we've started something of a mail drive ... If you feel up to it yourself, you can send a card to her c/o the DINET PO box, and Michelle will make sure that she gets it. I know it's hard to wait, whether it's for a return to health or for good news... but hang in there. Wishing you the best--I hope the new med's beneficial effects kick in soon for you. Merrill

Julie, I don't know whether you checked the Web site already, but the dosing schedule your doctor gave you is what's recommended by the manufacturer. Actually, on the site, it says you split the 100 mg morning and night. http://www.topamax.com/how2Take.html I'm sure there's other useful info on the site as well. good luck with this; I hope it helps you! merrill

I'm curious--is it set to beep when your hr reaches a certain level? Does it beep when there's an irregular beat? I can see that the beeping could be disconcerting to others. I see that it's nice to have their concern--but it sounds like their worry is more upsetting to you than the way you actually feel. If that's the case, then remind your family that you're wearing the monitor as a way to help the doctors find a way to help you--not as a way to get your family's sympathy. You're used to feeling a certain way and you're dealing with things just fine! If you feel well enough to go out, then you should absolutely do so--and they should support your efforts. One more week--hang in there. Conversation in your home will return to normal, except hopefully, after your follow up with the doctor, you'll all have a better understanding of who you are and what you need to take care of yourself and to have others take care of you. Best, merrill

So what do you do next, Texasgrrl? did your doc prescribe physical therapy to deal w/your neck issues and hopefully cut down on the frequency of the migraines? My disks are bulging in the same places ... grr ... and I just got my PT scrip extended for 4 weeks. I too get wicked headaches; a handful of times I've wondered whether they were migraines. What a drag it is getting old...

Hi, Morgan. Can you have electrolyte drinks? I really recommend something like that, especially b/c you had the runs for 4 days... that's really a lot, and you're quite depleted right now. Plain water won't be enough. Have you called your doctor? I'd even check with the inner-ear doc ... our bodies need some salt, I think--and it seems like that, along w/other electrolytes, might help you improve right now. Best, Merrill

Hi, guys. I wish I had better news to report regarding our Dancing Light... but the truth of the matter is that she's still having a really tough time recovering from gall bladder surgery. Last week was a tough one. Her mom writes, " ... she has been weaker and had more dropping blood pressure, near fainting episodes, shakes and nausea. She is staying in bed and trying to be still. Every time she moves, she gets another spell. She isn't doing too well on the eating either. She doesn't have energy for anything--talking on the phone, going on-line, watching television. She feels too miserable to even get herself distracted. She does still enjoy receiving your notes and cards via snail mail...she has a keen ear for hearing when the mailman is at our driveway Emily had a PICC (a peripherally inserted central catheter) put in at the hospital a week ago and then we arranged for home health care services to set-up the IV fluids at home this week. They have instructed us on this procedure and we are struggling to get that figured out. Yesterday, I had the blood coming out of her instead of the fluid going into her!!" This is disappointing news, of course ... I don't know about you, but I really miss Emily's wit and wisdom ... her incredible compassion and capacity to empathize and lend support--and to make us laugh. Whadaya say we send back some o' that love to her ... via snail mail?! If you send a postcard or letter to Emily, c/o DINET, PO Box 55, Brooklyn, MI 49230, Michelle will forward the mail to her. (Thanks, Michelle!!!) And thanks to all of you. Keep thinkin' those good thoughts... Merrill

Xanax works within first fifteen minutes and doesn't stay in system longer than 4 hours, or so I'm told. It might be a good option for you! How often do you think you'll take it? Do you suffer from high heart rate anyway? What other medications are you taking? I ask because I filled a scrip for xanax in advance of an MRI -- I've taken a fraction of a pill on a couple of occasions. It's nice, but not that big a deal--addiction won't be a problem. I intend to take it rarely, before a flight or other high-stress situation. (I hate it when I'm in a meeting and wish I'd taken some...) If high heart rate is a problem, I recommend low-dose beta blocker instead of xanax ... sometimes the high heart rate makes you feel panicky, and if you can get that under control with a non-addictive super safe and commonly prescribed medication like beta blocker, you might feel a whole lot better generally. About a month ago, I started taking 25 mg of toprol daily, and it's brought me down to a more comfortable place (low 100s instead of mid-100s all the time) and so I feel less anxious all the time. Maybe that would help you too? (Forgive me if you're already taking one... ) good luck w/your decision, m

I'm sorry too that you're not feeling well, Morgan. You can make it; try to stay positive as best you can. Maybe the 50 mg is too high a dose to start? I don't know that medicine ... but we all react differently anyway. Can you split the tablet and try 1/2? Or call your doctor for a lower dose tablet? Maybe your reaction today was a fluke ... you get headaches sometimes anyway ... and maybe a touch of the flu that's going around? Either way, I hope you feel better soon ... and that the medicine works for you (at your current dose or a different one). take care, merrill