EarthMother

I have such a hard time keeping track on the boards ... but wanted to send good thoughts to those in the deep potshole. As for me, I am back up to my 'normal' POTS levels & managed a few meetings this week at work. How is everyone else doing? MightyMouse are you still crawling out? Merrill? Where is Tearose? Has she gone undergroud? Let's get a headcount.... Who's in? Who's crawling out? And who is out and about? Good thoughts to everyone! EM

Nicely done at the ER! You were amazing!! We need to remember that we are not victims ... we are POTS Embassadors, and each time we encounter ignorance we need to do exactly what you did here ..... calm, logical, delivery of the facts....with a long well worded complaint to the powers that be! Thank you for being our ER Ebassedor last night. And ofcourse my deepest sympathy because I know you did not want the job and really could have used some help and support. Gentle hugs your way. As for the peeing ..I get these same shakes, bathroom trip, heart irregularities, bathroom trip episodes as well. It's a vicious cycle. What has been a godsend for me is DDAVP. It's listed here on the dinet site. I printed out the info then talked with my doctor who prescribed a small dose. This is stuff they give kids for bedwetting -- it is a mild anti-diuretic. I also can't handle other meds ... but the DDAVP was easy and very helpful. Goodluck in finding something that works for you. EM

Eckhart Tolle has some cool insights on this topic (I'd really recommend reading his book the power of NOW.) In short, we accept what IS. How could we not? This IS what IS. We accept that. And we don't project what IS now into the FUTURE and we don't dwell on what WAS in the past. Easier said than done I realize. But if we believe this philosophy than "illness" does not exist in the NOW. It needs a past (story) and a future (project/worry). The NOW may contain pain and disability but our illness contains often a long past and hopeless future. So how do we accept our illness? We don't. We accept the NOW and we realize that right NOW this is what is. I know my own ego screams loudly at this notion and says "If all I worry about is NOW, then nothing will ever get done! Nothing will ever change!" But I am learning to look at my own resistance and say "Is that so?" And let it simply drop away and come back to this moment. After all this moment is all that we ever have ... We accept the NOW. We never have to accept our story. Good luck to you on your own healing journey. EM

When I am very symptomatic the nausea is always part of the package. For me, keeping my fluid levels high helps. So compression hose, more salt, more water, more electroyltes etc. Other things that help some of the time include very cold aloe vera papya juice, or ginger tea -- but not together. Good luck finding something that works for you. EM

Sorry it's been a hard day ... are you taking little breaks, mini snacks? Lot's of breathing time outs (as Nina suggests.) Re-read the post on why palpitations occur: http://www.toppup.com/htdocs/dcforum/DCForumID1/357.html Then read it again! Print it out ... next time you have a palpitation instead of going inside your mind (where I go each time) reach for the printed article and read it again. By the time you get to the end, your system will have had a chance to re-negotiate and each time you can catch yourself before falling into that anxious state again you will gain back a little more solid ground to stand on. Good luck on your journey. I'm one step behind you! EM

Dear Nancy, Thank you for popping in to share your story. It's been a week to the day since the symptoms first started, and I think this is the first day I can say with some confidence that the sensation is finally gone. No I have no clue what caused it. I was fortunate that my therapist (who has fibromyalgia and a host of other chronic immune disorders and is an RN) also has burning icy sensations. She says for her it is mostly down her arm. But that when it hits it is unbearable and that the only thing that seems to help is wrapping it with a cotton bandage. I did notice with my face, that if I placed both hands on my cheeks and pressed lightly that the pain diminished. But then when I let go (perhaps when the blood came back) the pain came back. It was truly strange indeed. Good thoughts your way on your own healing journey. EM

So sorry you are having such a difficult time both inside and out. When I crash I go through the terrible nausea. Most of what you describe sounds like POTS to me. I remember my cardiologist (who I adore) coming in to the room one time and saying to me "You know POTS is really difficult for us doctors ..." I stopped him dead said "NO, its REALLY difficult for US patients with POTS." Then I smiled warmly so that he knew that I knew what he was trying to say and he smiled back and just said "I know." I really don't have high expectations anymore from the "proffessionals". Not to say they aren't doing their best, but in my years with this I think it has always come down to my own body's wisdom finding a way out over time. We all need a little more grace when we are suffering -- first to ourselves and then to all those around us who wish they could do more. Good luck to you on your healing journey. I hope some insights will come to you soon that will help. EM

Sending virtual warm soup, or cool ice greentea which ever feels better. Or maybe just a ladder to use to climb up when you can. Hope it is a short stay. Thanks Gena for letting us know. EM

Welcome Jesse, As always wish we could all meet under other circumstances. But knowing we are not alone in this journey is truly wonderful. Thank you for sharing your healing adventure. Keep in mind that it is possible for this sudden onset to leave just as quickly and unexplained as it came. Tune in to the possibility and watch what wonderful things happen next. Good luck, EM

Poor Merrill, we have reached epidemic levels down here in the pots hole this spring. Hang in there that this may be a short visit instead of an extended stay. I finally see some light at the end of the tunnel and am hoping this recent -- I've fallen and I can't get up -- attack I have had is due to a virus and that I am coming around little by little. I never did well on bbs, and my cardio has not suggested I start them up again because they seem to exsasperate my fatigue (wonder if they would improve my spelling?) I take lots of magnesium for the heart racing and palps ... though I do think hormones are playing a big part for me now in this perimenapausal stage. Ok, it's Friday night and we are in the pots hole ... who has the karaoke machine? I can picture that little critter in Bill Murrey's Caddyshack .... the gopher on the golf course, it sticks it's head up from the hole in the ground and the music plays .... It goes something like this I'm alright Nobody worry 'bout me Why you got to gimme a fight? Can't you just let it be? Do what you like, Doing it nat'rally But if it's too easy They're gonna disagree It's your life And isn't it a mystery Who do you want? Who you be today? And who is it really Makin' up your mind? You wanna listen to the man? Pay attention to the magistrate And while I got you in the mood Listen to your Own heart beatin' Own heart beatin' Own heart beatin' Own heart beatin' Don't it get you movin' mmmmm-man It make me feel good (Boom, boom, boom, boom) I'm alright Nobody worry 'bout me Why you got to gimme a fight? Can't you just let it be? I'm alright Just let me be ***Ok, who wants the mic next? EM

WARNING THIS ARTICLE MAY BE HAZARDOUS TO YOUR HEALTH... I'm joking of course, and a thank you to calypso who's heart is in the right place for postig this. But those of us with heart arythmias who already think we are dying are likely to take this new "study" and lodge it deep in our brains as one more reason to fear for our lives. Even the researcher says "Albert says much of this increased risk was explained by the fact that women who had high levels of anxiety were also more likely to smoke, have high blood pressure, diabetes, and high cholesterol." Keep in mind those of us who have taken research design 101 in college ... you can not prove causation from corelation data. Phobias didn't cause these women to drop dead. My guess is if we dig a little deeper we'll find out which drug company funded the study. My apologies for the rant, I really don't want to ever discourage us from sharing information ... but as with everything take a critical eye and follow your doctor's advice and your own instints. EM

It warms my heart to hear good news! Thank you so much for sharing! EM

Try grating the raw apples for the non-food processor. Should be great! EM

Brava! Sorry I am late to respond my internet was down too last night. As I read your story, the anger I felt was surpassed by your amazing fortitude! It was like a spy movie were they capture our heroine and torture her for a week, then try mind control to break her down when her body is in a weakened state. But then, just like in the movies, our star fights back with every ounce of strength she can find and escapes unharmed. Remember that last part sweetness -- you escaped unharmed. They can't hurt you. We won't let them. Cheers to your resilience! EM

Hang in there everyone ... I PROMISE it does get better. I made a wonderful cookie recipe last weekend. For those who are still doing fruit it is a perfect fix. Not positive on the measurements but something like Take 3 cored apples (skins on! more fiber). and about a 1/4 cup margerine and put in food processor until the consistency of applesauce. Add 1/2 c walnuts, a few raisons (or not if you really want to keep this low sugar) and then 1 cup of quick cook oats and another 1 cup oat flour. 1 TBL baking powder and a 1/2 tsp salt. Pulse just to incorporate all ingredients then spoon onto cookie sheets. Pop them in the oven (350) for about 25 minutes and enjoy! Bon Appetite. EM

Isn't it amazing when the universe brings us just the right people at just the right time. Wondeful synchronisity. Thanks for sharing. Good luck on your continued healing adventure! EM

Thank you all for the kind wishes. Tearose, I got goosebumps reading about the rocket. Very cool, I am going to use that visualization in my healing. Nina, I am so sorry you are still in the pots hole too. It's been a couple of weeks now. Poor dear. I used your 4 day rule when I got this windburn pain on my face ... figured if it didn't go away in four days, I'd go to the doctor. Just got back from my appointment and it was uneventful ... which I guess is good considering we all know how bad it can be with a new person. I am running a low grade fever, my throat is a bit streaked so he does think I could have a virus. He then left the room and phoned my cardiologist (which I wrote about last week) and when he came in he said ... I called Dr. T to ask him about POTS and he said if I wanted to know anything I should ask you because you knew more about it than any of us. I smiled. It felt wonderful to have the full attention and respect of a doctor. We did talk a lot about POTS. He said it is possible (though unlikely) that my DDAVP could be causing the facial pain -- it's easy to test, I'm already in the potshole, so I'll try cutting back of going off it for a bit to see what's what. Ok, enough upright for me .... back to bed. Good thoughts to everyone, you are such an amazing team of experts! EM

It's so hard to crash ... I can't recall how long its been since I felt this bad... All the 'normal' pots crash symptoms ... but on top of that I have this sensation on my face like wind burn. It's not on my skin, some just below the surface. Anyone ever hear of that? If it wasn't bilateral I'd swear I was coming down with shingles. Have a dr. appt. this afternoon -- with someone I don't know ... ick. Trying to hope for the best but worrying the worst about all the unknowns. EM

La pens?e de vous. EM

I think it is irresponsible for doctors to leave terse messages with their staff that say we should come in and then we need to wait days before they can work us into their schedules. You may want to consider calling the office back and saying you want the doctor to call you at the end of the day when they are through with patients/rounds and discuss this "new news" with you briefly. Keep in mind, this is your body and you have the ultimate choice on what to do. Take all the information, take everything in you can find ... then sit quietly .... often the answer comes from within our own inate wisdom. Good luck on your healing journey. EM

The LA Times just did a piece on this today.... I think this link will stay live for the next few hours before it goes into archive subscription only: http://www.latimes.com/business/la-fi-shar...ack=1&cset=true I have TWO of these ionic breeze air systems and must admit I love them and was crushed to read the possible concerns by CR. When we had the bad fires last year in southern california the ionic breeze was the only thing that kept me in one piece. Everything smelled like smoke for weeks afterwards -- there was ash in the air, on the ground, it was really icky. I put my two units in my bedroom and was able to have "clean" air in at least one sanctuary in my house. I'll be following this story closely as well. EM

Morgan, If you are looking for some alternative therapies ... look up yoga classes in the phone book. Often these folks will know who the local reiki, pranic healers, chi gong practitioners or other healing hands in your neighborhood. Good luck in your healing journey. EM

Hi James, Congratulations on the job! Have you read the post I put up on palpitations ... It was titled "Palpitations. (sub) Everything you ever wanted to know ..." started on March 24, 2005. Read it. Take it with you to work. And read it again. I just saw my cardio today to confirm with a "Real Person" that what was said in the article was true for me. Print it out, show it to your doctor and say -- hey, are my palpitations benign too? It may give you some piece of mind. That said, I completely understand how you feel -- I left a meeting last week when few hit really hard. It's the pits. Even though you "know" intellectually that they won't kill you ... I think the Vagus nerve hits the "doom and death" center in the brain and it doesn't matter how much cognitive reason you bring to the table, it still has the power to knock you for a loop. Tomorrow I have my yearly job review. My boss knows I have POTS ... but it's still a very terrifying thing for me to face a performance review. I will likely have some back up plans in place ... excuses to leave if necessary. And if so, I'll collect myself and re-schedule if it comes to that. Fact is I have POTS. Some days will be better than others ... some days will feel almost normal ... and some days will be the pits. But I have a lot to offer my firm and sounds like your new employer believes in you as well. Give yourself grace and compassion. We are all here rooting for ya! EM

Yeah Tearose!!!! Isn't it amazing to have your breasts on so many people's minds! :-) You have been in our heart and thoughts these many days. Thank you so much for sharing the good news. As I was waiting and cold today in the cardio's exam room ... I closed my eyes and FELT everyone here. It was like being supported from all sides. Sometimes this place is simply beyond words. Good thoughts to all on your healing journey. EM

Merrill so sorry to hear about your Mom's injury. I hope she isn't in too much pain. Gentle hugs to you for being able to be there with her in the ER. It's been sunny in southern california -- up to 80 on the weekend. So it was wonderful and relaxing. I saw my cardiologist today who did the routine, hook-em-up -- you look marvolous -- commentary. He offered to do a 24 hour holter but he said I really didn't need one. He said "You have POTS. These skipped beats are going to happen. You heart is structurally sound and you should not worry in the least." Then he got this serious look in eyes and said "The fact is you know more about POTS than most doctors do and you really need to go out and educate people about it." I said, sure thing doc. And he said "No really, I am serious. I have a few other POTS patients and they just don't seem to understand. It is terrifying for them and they want some drug to fix everything, then by the time they come to see me they are on so many medications it is making them worse instead of better." He reviewed my chart, told me I was doing the best things I could and I told him about the dinet web site. I think I'll send him a follow up letter with more information so he can help spread the word to his other patients. Can't thank everyone enough ... for the information ... the insights ... and the opportunity to feel whole and hopeful. Deep bow. EM