EarthMother

Belated welcome Kathy! There is wonderful advise here. I'll second the post earlier on magnesium. It helps my heart rythm more than any other med I tried. I take a product called natural calm (a magnesium powder you dissolve in water.) And it is wonderful for anxiety too. Having gone through an undiagnosed chronic illness especially one like POTS that sends the body chemistry racing, it's really easy to develop panic attacks and eventually agoraphobia. Feel free to email me anytime, I'm an old pro on both counts! Welcome to the boards. EM

Apart from the "traditional" subtle healing sounds that soothe our sole ... I have a favorite Jewish artist that really makes me feel good. http://hasidicreggae.com/ To listen to Matisyahu you would be convinced he was an off spring of famous reggea superstar Bob Marley. But to watch this hasidic artist you are struck instantly by the geniune passion he has and his ability to plug in to your own sense of spirit. There are lots of free downloads of his music (and lyrics) on his web site. http://hasidicreggae.com/index.php?section=article&id=23 Shalom. EM

Dear TeaRose, Sorry you have to go through more tests ... my thoughts are with you. Gentle hugs your way POTS Sister. No doubt you did the same internet searches I just ran ... and I don't see ANYTHING out there suggesting a link between heart rate monitors and calification specifically NOR any correlations between HRMs and electro magnetic fields or cancer of any kind. There is certainly a lot out there on these microcalcifications, which would indicate these are very common mamagram findings. The follow up tests you have described seems standard as well. Good luck tomorrow morning. Salubrious. EM

THANK YOU! This was exactly what the doctor ordered. As I watched it I kept thinking of all the people I needed to email this too. Salubrios! EM

Dear Gena, I am SO sorry to hear you are down the POTS hole. A 15 year old boy in the house?!!! I feel your pain. Sorry you had to go off the licorice root. I know my system is very particular and does not adapt well to any change. Many of the symptoms you mention are heart related ... have you tried this product yet? http://naturalcalm.net/home.shtml I am a really big fan. While I don't have sleep problems myself, I know people who do and they swear by this stuff. For me, I take one teaspoon in the a.m., noon, and night and my heart irregularities are MUCH improved. Hope you find something that helps. Good thoughts your way. EM

Anyone else really in need of a GROUP HUG? {{{{{{{{{{{{{{{gentle hugs}}}}}}}}}}}}}}}}}} I like the point opus makes about "Our minds are merely reflecting the imbalances in our bodies ..." And in my case I learned the MY MIND LIED! While I firmly believe that panic attacks did not cause my POTS I do feel just as strong that years POTS led to what many people (myself included at times) labled panic attacks. It's really very simple mechanics ... my pulse shoots WAY up when I stand and my mind would say "gee...there must be something REALLY REALLY WRONG" standard fight/flight response. I interpretted the fast pulse and dizziness as panic. However even then I began to question if that label really fit the situation. For instance, I might get really "panicky" on a trip to the mall. And then turn around and go home. But later that day, I could make the trip without a problem. No panic. No anticipatory anxiety. The difference was -- in 20/20 hindsight -- that I was really POTSY in the morning and by late afternoon I stood (no pun intended) a better chance of being able to walk around for a bit. We've all been through our own private battlefield and it does seem that our scars are still very painful. My deepest gratitude for this board and a safe place to be among people who understand and care. EM

A good friend told me the other day .... when we feel we are "right" then we have to make the other person "wrong". I sincerely hope I didn't make anyone feel wrong about their opinion. I really don't see a fence on this issue to be on one side or the other. We are exploring possibilities. I don't believe there is a one-size-fits-all-truth to be found. In chronic fatigue syndrome many people believe that there are a host of different "causes" that may lead to a similar expression of what we call CFS. Perhaps this is true for POTS -- some of us come down path X, some of us down path Y and we find ourselves together in this meadow of shared experiences with orthostatic intollerance. Which is unquestionably REAL -- we don't make up the drop in BP and the heart rate rising. When we stand it isn't a panic attack. (Otherwise it wouldn't go right back down again when we lie down.) I also did the "go see this psychiatrist" request on behalf of one of my "specialists" back when I was in a really deep and yet undiagnosed POTS-HOLE. And I crept in there in my slippers and sweats (because it was really a challange for me to be upright at the time.) And I had the same experience as Nina. The doctor told me (and I firmly agreed) that I was mentally fine and in no need of psychiatric care. I have no signs of depression and my anxiety stemmed from the fact that I had an undiagnosed illness that no one was able to identify and treat. His recommendation -- FIND ANOTHER DOCTOR! Which I did and eventually came upon POTS. Now that doesn't mean that I still don't have panic issues to address -- I think in large part because I didn't process these body sensations 20 years ago. I know this struggle. I would often have tears in my eyes in the parking lot with my husband if I was having a bad POTS episode and had to meet a new doctor. I'd confess to my husband ... I don't want the doctor to see this as anxiety ... it isn't. I can handle the anxiety part ... but I know deep down that this isn't anxiety there is something WRONG. And ofcourse we all now know there was. There is. I have POTS. I didn't make it up. And I can't meditate my way out of it. However. I do believe -- ok I still hope -- that someday my body will find a way to work through this and correct itself. The body is an amazing thing. It can make it's own powerful drugs like morphene to stop pain, it can develop it's own killer cells to destroy invadors (or unfortunately to attack itself at times.) So I hold out that my body can find a way to remap the neural networks and begin to produce on it's own the "right" combination of chemical responses to heal whatever it is that has gone terribly wrong. Meanwhile, I'll continue to work with my doctor, my zen master and my therapist to achieve the most I can. My deep thanks to everyone. If we were all identical, we would become bored rather quickly. Salubrious! EM

No blame. No judgement. I firmly agree we do not "bring on pots". I also have history of panic disorder -- but I have long history of what they called 20 years ago "tachycardia on mild excersion" -- I get it now that this was POTS. Is it a chicken and an egg thing? Does the body control the mind? Does the mind control the body? Is there really a separation of mind and body at all? I am likely to believe there is not. After returning from work from one of my long POTS spells and being out on disability for a number of weeks (or months) one of my staff came to me and said that "people were talking". They wondered if I was "mentally sick" or "physically sick". I didn't miss a beat and turned to him and asked "Is there a difference?" And then I smiled warmly. Nothing more ever needed to be said. However I have really been thinking alot about a the origin of POTS and while I know it is different for each of us, I wonder if many of us share a common thread of Trauma. I've been doing some work on trauma and the biological nature of what animals do and how they "shake it off" in many ways better than we do as humans. The work of Peter Levine talks about the autonomic nervous system getting stuck in a freeze response and then charging with bound up energy. For Levine it is all about "uncompleted movements" that we didn't make when expossed to some initial (or repeated stressor) and then what happens after a lifetime of re-traumatization. We all have faced so many years of trauma going through the medical system and being told time and time again -- we are crazy. Does this impact our current state now? I think it does. I mean even though I have a great doctor now, I have to think that somewhere in my body, I still have physical memories of the storms that I didn't understand and that maybe there is a way I can let my body explore ways to "complete" the trauma response. And in the end, if I can't reduce the POTS symptoms, maybe learn to live a bit more at peace with them. Thanks for bringing up the thread. It gives me more to think about. Good luck to all on your healing journey. EM

Brava! Thank you SO MUCH for sharing. It warmed my heart to read about your courage and resliance. Ahhhhh to bottle that and sell it on ebay! :-) EM

Big thanks to Ernie for being our famous celebrity white rat in the article! Did anyone else venture to pay for the second article in this month's journal of hypotension. The one that references this study. It looks to be an ed op piece and while it is filled with techno-jargon I can not hope to understand, it may be that the authors disagree with the findings. Snippit from: Editorial Commentaries The Causes of Postural Cardiovascular Disorders Michael G. Ziegler; Demetri P. Rizos "Mast cell disorders did not cause OH in most of Shibao?s subjects because reflex sympathetic nervous activation enhanced cardiac output enough to maintain blood pressure.9 However, a patient with a disease that alters cardiovascular physiology will eventually experience other cardiovascular stresses, such as fever, dehydration, or drugs. At that point, the mild cardiovascular disease may manifest itself as OH, often reported to a physician as "feeling too weak to get up." The most important postural cardiovascular tests described by Shibao et al1 are widely available and can often point toward cause and treatment. " I've printed out both and will review with my doctor at my next appointment. No easy answers. Many thanks to all of you for shedding light on this moving target. EM

Great thread! Thanks for the top 10 list. I was thinking about this the other day -synchronisticly -- and I thought a checker at a supermarket. All day on your feet in one spot. "Clean up on aisle 2... correction paramedic please on checkout lane 2!" EM

Welcome Dawn. Congratulations on finding the forumn. For me this place is where I get my motivation, my inspiration, my empathy and my conviction that I will continue to improve. It may not be a straight line (two steps forward, one step back ... and even sometimes one step forward and two steps back.) But I've come to look at this as a long healing journey .... and in the long run it matters not which road you chose just as long as you continue to go down the path. I was having a problem with guided meditations tape as well -- which is really ironic because I am also write them! However back last summer I began some zen meditation -- just breathing like the link below... http://mipham.com/audio/Shamatha-Sakyong_Mipham.mp3 And it was different. It doesn't happen overnight ... some people say it take 6 months or a year to notice the difference. But I do believe that if we can quiet our minds (body) that it will eventually find a way to reprogram the neural networks and heal. I started "sitting" with just five minutes at a time, leaning up against the bed if I needed to. I can now do 20 minutes at a time and I try to do at least two sessions a day. Sometimes the time on the cushion for me is the only time of day that my mind isn't running or telling a story. Good luck on your own healing adventure. I look forward to hearing what you discover and what works for you. EM

My son had a performance the other night and it took everything out of me just to try and sit in the audience. It was one of those "really potsy" days and my pulse was 110-120 just sitting up. And there was nothing I could do to bring it down. I was breathing slow, sitting on my legs, leaning back. Relax, relax, relax. But as all of you know, if it was all about relaxation we would all be cured. I was thrilled to see my son perform ... but even after I left there was no "gee you did it" feeling in my mind. I simply felt awful. I came to describe it to my husband as ..... It's like you are running up hill ... with the flu ... and you really really want to stop under a shade tree and rest, but you can't. You just keep running, running, running. When I finally got to the car, I drank a bunch of magnesium and in about 10 minutes it kicked in and I was back to "normal". It was great to see the abstract Tearose posted today. It is so good to see that people somewhere are still trying to help. I hope someday we each find some relief. Or at least little moments of Ahhhhhh. Thank you all so much for your support. It's nice to have folks who understand, to lend a hand, or a shoulder to cry on, a hug to celebrate minor victories and in general to but the "fun" into dysfunction. Good luck to everyone on their healing journey. EM

Gena, I am so glad you enjoyed the rice mold. I made it the other night and added carrots to the top layer. It was so pretty. I just placed a bag of organic carrots in the juicer and then added the dry pulp as my first layer before the rice. Then I used the carrot juice for a sweet gravy. It was cool. Hmmmm.... oats in the black bean patties, you can probably add cooked brown rice and it would work just fine. Salubrious. EM

Gena, you are so kind to keep everyone in your thoughts. And good to know Tearose that you are above ground. As for your vegan house guests ... I posted a quick sweet chili recipe on my web site just this morning! http://www.coolkarma.com/Foods/sweet-chili.html Can't beat the simplicity of opening a few cans! I did do my walk around the cul d' sac -- but unfortunately I crashed very hard the next day and was down more or less for a week. I'm coming back though and will try HALF the cul d' sac and perhaps some floor exersizes. Please take some moments to just be still while everything else seems to be buzzy around you. Good thoughts your way. EM

I have a growing list of recipes on my web site: http://www.coolkarma.com/Foods/index.html Most are gluten free (avoid ones with spelt or rye -- I am wheat sensitive not gluten sensitve) so take a look and see if something will help your cravings. For me when I had to do the candida diet and give up all sugar/sweet foods for a year was REALLY hard. But really worth it in the long haul. Hang in there. EM

You are amazing Tearose. Your compassion is unparralled and your memory ... you amaze me. I am also at 11 on the cul d'sac. I think I'll walk counterclockwise. I started today, by first walking for five minutes in my bedroom. In "mindful meditation walking" they take two steps per inhale and two steps on the out breath. Each time our foot touches the ground we think of it as kissing the earth. All of our attention is on just that movement. If our mind wanders, we gently bring it back to our next breath and next step. We are not trying to "get anywhere" (which is good because I am just walking in circles) we are just being mindful of walking. Sounds appealing. I tried four jumping jacks tonight ... just to see what it feels like. The picture you described was wonderful and inspiring. Four was my limit. But who knows maybe I'll jump again tomorrow. I really like the idea of floor excersizes too. Deepak Chopra has some good floor moves in his Chronic Fatigue program. I should pull that out and try those again. When I did them before I really loved it. Thanks for inspiring all of us to explore the perimeter of our POTS. EM

No small feat! Pat yourself on the back ... you did great!!! For me I don't spend enough time feeling good about my accomplishments, but rather begin to "worry" about the next timeline I have in front of me that I may or may not make. Having to be somewhere at a given time is the biggest stressor I face. From meetings at work (that involve lots of people and can not be rescheduled) to school events for my kids. It is simply impossible to know what kind of POTS day it is going to be. We need one of those FIVE DAY POTS FORECASTS. Like the they have on the weather channel -- OK maybe more accurate than the weather channel. A friend of mine wanted to drive down for a special event that was at the house of a mutual friend of our and she said to me on Monday night, will you be able to make the dinner on Friday? I told her I just didn't know and that it depended on how I felt. She said .... if I call you on Wednesday or Thursday will you know if you will be able to come? I tried as politely as I could to tell her that I may not know until I was in the car and getting off the freeway at her exit to "know" if I was going to be able to attend. Thank you so much for sharing with us. It makes me feel not so alone in this journey. EM

Oooh, I just noticed that this was from July. Never mind. EM

Dear Tearose, Thank you so much for sharing. This thread has inspired me. I have been reading about "walking meditation" for many months now and always thought -- that's good but not for me. But if I start VERY SLOW, just around my tiny cul-d'sac, then maybe I can begin to introduce some movement into my healing journey as well. It is SO good to hear you are feeling a bit better. It sounds like you are at least enjoying the adventure. Good thoughts and gentle hugs your way. EM

Dearest Tearose, There is so much good advice here about SSDI next steps, that I could add nothing to the wisdom already shared. I hear your heart's cry for answers ... and I hear your mind trying to blame youself for 'if only I had done things differently...' Remember sweet-rose that all of the 'thinking' takes us further away from just being ... right now ... in this moment. My deep sense is that the answers you are seeking will come from a silent stillness deep inside of you. I see you as the phoenix rising from the pots ashes ... surrounded by and giving out loving kindness and compassion. Trust that you have all that you need to make this journey. Good thoughts your way on this incredible healing journey. EM

Dear Diz, I have POTS/CFS but not Fibro. So sorry dear for the pain you are in. There ARE success stories out there. I knew people with FM/CFS who made complete recoveries (or maybe we just call them long remissions.) Problem is many people when they "recover" they stop using the boards. So we loose track of those who do improve and move on. A quick google search (for what it is worth) produced the following pages that include successes: http://www.cfidsselfhelp.org/archive_success.htm http://www.healingwell.com/pages/Fibromyal...al_Experiences/ Dr. Weil has a wonderful book called "Spontainious Healing" that I would highly recommend ... and there was this other book I read once called Healing Myths, Healing Magic: Breaking the Spell of Old Illusions; Reclaiming Our Power to Heal by Donald M. Epstein -- it was pretty cool as well. Good luck on your healing journey and welcome to the POTS boards. There are really GOOD people here. EM

Dear Tearose, How kind and compassionate you are. My sense is you will never know the depth that you touch each of us. Sometimes when I am having a really bad POTS moment, I imagine the lovely image of the rose and think what would Tearose say about this? You lift my spirits. I am so very grateful. As for music ... funny you mention this. My son (age 11) just asked to record one of my pieces, with a techno-hip beat ofcourse. So I worked on it (slowly as best my body could manage) and last weekend posted his version of my song BELIEVE. It is a really nice inspirational piece. Enjoy. http://www.coolkarma.com/mp3/Believe-2005.MP3 Good luck to all on your healing journey. EM

Chiropractic is a very big field, with so many different techniques with different training. I think it would be very hard to give a blanket answer across all basis. I have an amazing chiropractor and have seen him for over 10 years. But he is really very special. He has lots of devices and techniques that go beyond the traditional -- crack your neck -- approach to problem solving, including ultrasound, massage, hot or cold packs and some accupressure moves -- he even has aromatherapy. Ahhhhh breath deep and enjoy. There is also a "new breed" of chiros coming up through the ranks who call themselves "no force" chiropractors. They insist they can "adjust" you with no more than the gentle press of a single finger. Good luck finding a team of practitioners that can work with you in your healing journey. EM

Cheers! I do believe that when all is said and done, our bodies have an innate wisdom and are trying their best to heal -- in some cases we need only step out of the way and let it happen. Reminds me of that Spontaneous Healling book by Dr. Weil. Hmmmm, maybe I should read it again. Thanks for reminding us that hope is always alive. EM