EarthMother

{{{gentle hugs}}}} Deep breath. In ..... and out ...... That was for ME! LOL I have to remind myself to BREATHE otherwise the positional panic symptoms get way out of hand. :-) Did you know there are actually some really strange studies on Orthostatically induced panic attacks http://www.sciencedirect.com/science?_ob=A...9773ef1ac046941 I also have POTS and for me panic is part of the total package. My therapists have all said that my anxiety symptoms were "organic" -- meaning that they stem from the physical sensations of the illness. But as you well know ... KNOWING this on a cognitive doesn't make them magically go away. The work I do now to try and "manage" my body sensations better from a mental standpoint is a type of therapy called Somatic Experiencing. It has helped, but like everything else it is not a magic bullet fix. For me I have to remind myself all day long ... what I am doing and that -- I HAVE POTS! I know you'd think we could never forget but sometimes when my brain is deprived of blood from standing too long, I begin to react to the body sensations (light headed, intense pain in my shoulders or back, contractions in my abs and the hot flushes) and my mind will go to a deeply rutted pattern of panic instead of simply solutiions like LIE DOWN YOU IDIOT!! :-) Even tonight, I had made a wonderful meal for my family and as I began to eat I started to have trouble swallowing, my concentration was difficult and I felt off balance for lack of a more accurate description. I took a cup of tea up to my bedroom and was in tears with how sick I was feeling before I remembered that I had been standing up too long with dinner preparations and that the swallowing issues and waves of heat etc. would all pass if I put my feet up for a while. And of course they did, because this is how my body works. I was fortunate that my friend came upstairs, who knows I have POTS and understands how it works. She saw that I was tearful and she was able to remind me ... "You know, you probably have a whole bunch of thoughts running around in your head right now. But remember its just a bio-chemical reaction and they don't mean anything. When the reaction is finished they will go away too. None of it is real." And she was right, I knew she was right of course, but it was still nice to hear it validated from someone on the outside. So feel validated that you are not alone and you are not crazy. Deep breath ... (just reminding myself again!) ~EM

And it is within the simple act of knowing I am not alone that lifts my spirit and eases my pain Mack's Mom perhaps expressed what is most in my heart in this moment ... It is like being re-united with long lost family members ... In reading the lovely words of my dear Dinet friends there is no lack or longing that lingers in my being. I am blessed and as always surrounded by love and light. May we each hold the candle for each other. Deep bow of thanks to everyone for lighting the way to such a wonderful place of acceptance and peace. ~EM

Nursing was easy for me and though I initially thought I would wean my first born at a year old, we decided to let her lead the way on when to wean. Nursing a toddler is actually different than nursing a very young baby. They don't nurse as often, your milk actually changes to a lower fat percentage to meet the growing needs of an older baby but they still get all the antibodies and immunities as before. I worried ofcourse with my first child if I was doing the "right thing" ... but seeing how all three of my kids benifitted from a longer nursing period and are now really independent and confident teenagers and young adults, I am glad I did. The world health organization use to list a stat that said babies will self-wean anywhere between 9 months of age to 2 and a half years old. When my kids were toddlers, I simply adopted the practice of 'never offer and never refuse.' The reduction was so gradual that I never noticed any hormonal changes or a decline in my POTS symptoms. For us, it worked well and our pediatrician was totally supportive. Good luck finding things that work best for both you and your nursling.

When I had pityriasis rosea last spring, I read that one of the ways to reduce the duration and intensity of the rash (which takes over your entire core bit by bit!) was to get sun on your body. So I began taking little "sun baths" in the nude -- because the rash was in places the sun doesn't normally shine --LOL. Even after the pityriasis rosea was gone, I realized that I felt better with as little as 10 minutes of early morning sun on my body. I am fortunate to live in a sunny climate .... and have a very private backyard. ;-) I do believe it helps a wide range things.

You are not venting, what happened to today was simply horrid. Some people find themselves in the wrong line of work, and it seems that this centre is adept at finding folks who would be better suited for our penile system instead of our pre-schools. If you can change your daughter to another school, I would encourage you to do so rather than continue to beat your head against the wall with this group. My kids are all in the teens and older now, but when they were little I was fortunate to have found a place that honored my values. I was their first nursing mother back in 1988 who insisted on no bottles or cribs for my youngest. I gave them a sling and explained how I wanted my little one to be nurtured. My first born was "high need" ... not "overly sensitive" ... and I knew enough even as a young mother that providing her with a safe and supportive environment would serve to provide her with a foundation that would allow her to grow up confident strong and self-sufficient. (Did I mention she studied in Italy last year for college -- Its good to know in hindsight that I made the right choices!) A lady friend of mine told me just this week that her 6th grader was not ready to handle the week long 6th grade camp and though she made arrangements to accompany him (through the dissapproving eyes of the staff) he still was not enjoying the experience and they opted to return home after two days. "It was the best decision he made. I am so glad I didn't force him to go through with that. When he's ready he will know." She said to me .... and she's right. She's raised two other amazing and autonomous kids who have each gone away to college and are strong self-confident young adults. Too often we look at the "one size all" parenting paradigm and try to push our child into a model that simply doesn't work for his or her developing needs. I applaud parents who are willing to stand up and say enough is enough and not be afraid to blaze a new trail that works for their unique circumstances. If you are unable to find a new centre for your little one, don't worry. You will still be able to provide the time and attention she needs afterschool to undue any of the insensitive gestures or experiences she may have during her pre-school session. It is not an easy lesson to learn at that age, but one that your own intuitive parenting will be able to help her through. Big hug to the both of you. You did well.

My heart always goes out for my POTS-peeps who live on a day-2-day basis with family members who don't understand. I am so fortunate that my nuclear family is amazing and supportive and that the people that I do choose to cultivate friendships with are kind and compassionate. So much so that in some respects I was caught off guard a bit yesterday when I spoke with some relatives that I seldom chat much with. It has been almost a year since my mother has spoken to me .... right around the time I got my wheelchair (coincidence? not much) ... I had kind of assumed she was just being distant with everyone in her life, then when I spoke with her sister and brother it turns out I was delusional ... it was just me. It would seem that the "family" pretty much thinks I just "play invalid" and that these issues are all in my head. Ahhh we all know that story far too well. One family member actually said some version of she'd rather be dead than be in a wheelchair. (Deep breath.) There was nothing to say ... we all know when we come up against people who just aren't going to understand. So even as my mind continues to role play all of things I wish I had said yesterday (citing research, reading doctor reports, faxing my SSDI approval over the phone! lol) I realize the most constructive use of my time and efforts was to just put out a simple OUCH to my POTS family who have been there done that and feel the comfort in knowing that I do not walk (or ROLL!) alone. Gentle hugs to all. ~EM

The one thing I remember 'liking' about the hospital was the oxygen! I feel soooo much better when there is blowing air near my nose. I can't ever recall an O2 test during any of my TTT or cardiac stress tests. Would be interesting. But like Rama said, I've not seen any options for that here in the states either unless you have a pulmanary disorder. Funny, my first 'diagnosis' back when I was in college <1980's> was asthma ... which turns out I never had as well.

And a deep bow to YOU Ms. Mouse as all of us here are so appreciative of your efforts. Amazing to think ... that by moderating a 'social forum' you have actually directly impacted the ability for people to get a diagnosis, open new possiblitites for treatments, raised hope and endless support within an otherwise lonely and isolated illness. Our unending thanks go out to you. I enjoy facebook as a way to connect 'live' with folks. Admittedly, I play some of the 'game applications' like YoVille. But it is so cute to see other POTS PEEPS in there 'walking around', 'going to the beach' and having fun. It would be so cute to have a YoVille POTS party were all of us could meet up and play one night. lol

Hashi is hideous about having little bouts of thyroid toxicity, it happens when the anti-bodies are surging and little parts of our thyroid gland are dying off and otherwise battling the scar tissue caused by this auto-immune disease. It usually resolves itself on its own ... to I've never met an Endo who was willing to address the rollercoaster ride it can sometimes cause. My PCP is pretty good about letting me tweak my dose with him based on a combination of how I feel and my blood work. It makes theoretical sense that your thyroid would be acting up during a virus because your body is under attack by a REAL outside invader (as opposed to imagining that your own thyroid gland is the enemy) so one might assume that it is directing energy and efforts to fight off the real virus instead of attacking the poor thyroid gland. While the thyroid gland has a respite from the internal war it may produce more thyroxine as a byproduct. Usually not enough to be in any big danger, but enough to make our sensitive bodies notice the change. No worries, once your body has wipped the H1N1 your immune system will go on the hunt for something else to attack and no doubt resume killing off your thyroid one anti-body at a time.

A year ago my irregular heart beats were coming on stronger and more frequent and as a result playing havoc with my nerves! When I went to my cardiologist he assured me they were begign and that -- I quote "unless you are having more than 10,000 skipper beats a day, I am not going to do anything." I did the math and that would have been more than 1 'skipper beat' (doesn't it make them sound less hidious when you call them that -- lol) every 10 seconds ALL DAY LONG. Like you I was getting a few a minute. Despite his reassurance they do still set me off balance. He did recommend Slo-Mag brand magnesium supplement (i was taking magnesium but a diferent brand) and I get waaaay fewer skipper beats ;-) now on the supplement. Good luck finding answers that ease your mind.

I use my GP as a gauge anytime I want to explore alternative therapies. He is open minded and helps me a great deal to separate out the snake oil from the cutting edge integrative approaches that are actually showing some promise. Good luck finding something safe that works for you. I got very sick after working with an accupressurist who used firm (painful) pressure. Sometimes our "special" bodies don't behave in the way people without ANS dysfunction behave and it is not always the case that people in the healing professions have come across enough of us to gauge how to tailor the treatment.

Hmmmmm.... Can we meditate our way to health? Well let's see ... I've been a Zen meditator for 10 years. I guess it is theoretically possible that I could be in WORSE shape without my formal practice .... bug GEEZ I really can't imagine. LOL When I first started Zazen, way back when it was because I was desparate to find something to help my body/mind heal. Even when I lost my job due to POTS in 07 I still believed that if I just cranked up my practice I'd be able to "rest and recover" my remembered health. Back then I was mediating at least three times a day, with bio-feedback verified results that I was indeed lowering my ANS arousal. Did it help my POTS or my rapid decline in 08? Nope. I no longer have a formal meditation practice in order to heal ... I meditate now because I am drawn to the emptyness, the vast stillness, the space in which I can truly apperceive that this body/mind is NOT that which I AM. But hey, that's just me ... as always your mileage may vary. LOL

I have Hashi. And some relatives who take replacement synthroid for "hypothyroid" ... most likely I believe they are Hashi as well, but not many people test for the antibodies especially when the TSH starts to show low thyroid funciton.

I can honestly say I have never nursed a rat! ;-) Funny how many of us grew up with rats. I had pet rats in my early 20's and worked in a rat lab during college ... when my symptoms first started. I don't believe there's a connection but it is interesting to note nonetheless.

{{{{{{{{gentle hugs}}}}}}}} I am so sorry for all that you are going through. The pain you have written about recently and sleepless nights seem so hard to bear. Your post tonight reminds me just how human (and fragile) each of us are within our healing journey. The strength that we each seem to find at the end of the day when we were certain there would be nothing left of us is beyond imagination. Indeed if it were not for my dear fellow POTS pioneers, I am certain that my own spirit would be hopelessly lost. Lean on us. Place your head upon our shoulder and hold our hand tight. We are here for you and sending you light and love when you need our support. We walk with you, and whisper in your ear that you are never alone. Deep bow, Ms. Mouse.

There are dozens of different types of magnesium depending on how it is bound and delivered. Some are powders like Natural Calm ( http://www.petergillham.com/product-line/p...atural-calm.php ) I used this for years and felt wonderful on it. What I like is that it was easy to titrate the dose since it was a powder that you mixed with water or juice ... I could have a little more or less depending on how I was feeling. However, when my palpitations got "annoying" again my cardiologist recommended I take Slo-Mag ( http://www.slowmag.com/ ) These are timed release magnesium and they really did the trick. I've been taking slo-mag for a year now and much less heart palpitations. Good luck finding a balance that works well for you.

From that same site Rama mentions http://www.wpinstitute.org/xmrv/xmrv_qa.html They indicate that "The WPI has developed a blood test for the detection of XMRV and we are currently negotiating an agreement with a clinical laboratory to allow for limited testing. These services will be made available as soon as possible and we will provide information on this site as to how the test can be requested. We cannot offer individual testing and results from our research lab. Please check back here for updates." I'm hoping this is not the same limited testing that vipdx is doing for $400 a pop. While I have certainly paid out of pocket before for "specialized" testing ... my pocket book can no longer afford to do so and in this case I'm willing to watch the early adopters to see how this all pans out. Keeping fingers crossed (and legs too, but that's just a vasovagal counter maneuver ;-)

HIRE SOMEONE! Save your energy for the things that bring you great joy and passion in life.

Since all the flurry around the XMRV "connection" ... I've done a bit more reading on BOTH sides of the research band wagon and some of the "anti-virus activists" have some interesting points to make. Specifically they raise the issue of WHY so many illness are being linked to viruses these days? In their opinion it is because once a virus can be tied to an illness then the pharmaceuticals can get money to create a vaccine. We've all seen a lot more vaccines come rushed to market, some would say the HPV shot came out too soon before it was fully vetted, or before we could actually determine if it DOES help prevent cervical cancer 20 years from now. Is it not interesting that they are only giving this vaccine to young people .... hmmmm, it will be years before we can judge efficacy. I'm not saying all the virus news is smoke and mirrors, but just to take it all with a grain of salt when you follow the money back to see who is funding the research.

I use to get this a lot more before my cardio switched my magnesium supplement. I now take SLO-MAG its timed release and actually must LESS than I was taking before but it worked like a charm to knock out those post-pranial palps. I also tend to take 2 ounces of aloe vera papaya juice after eating to help digestion. Good luck finding something that helps.

I am a BETTER MOM now than I was 10 years ago before my condition started going down hill. I did the "soccer mom" thing for my two younger kids when I could still drive everywhere. We did the family vacations at the beach, disneyland and museam trips. I also worked full time and only saw my kids for a few minutes each day and by the weekend I was exhausted and still working from home catching up on email and reports that my patience was non-existent. But in our society that's what MOM looks like -- we cook, clean, chauffeur, nag about homework, criticize and complain. Since becoming disabled in 2007 I am now home full time with my two teen agers and fully available to my college girl when she calls on the phone or drops by for dinner. I can light a fire in the back yard and we can BBQ some veggie dogs and sit and enjoy each other's company. I can go for a very SLOW and short stroll in my wheelchair with them around our cul d'sac and listen to what they did during their day. Though my body is often in pain, I am more at peace with what is happening around me and my kids are amazing because of it. My youngest -- who is 13 and only barely remembers my former self -- tells me how fortunate she is to have me for a Mom. How her friends don't eat dinner as a family, they don't bake whole grain bread with their mother and they don't roast bananas together in their backyard. We live in a media centered society ... if your kids take their iPod out of their ears for even a moment to smile and say Love You Mom, then you are ahead of the game. I know for me ... that I have done more for my kids in the two years I have been disabled with POTS than in all the years I was driving them to and from sports, clubs, friends and shopping malls. I am HERE for my kids and I would not have been available or open to their needs had I been the "typical Mom" on the block.

Timely to see this post .... as I had another VIOLENT episode of vertigo yesterday. I was getting them off and on last spring/early summer, but it had been months since I had an attack. In this case I was still laying peacefully in bed and then WHAM ... the room started spinning hard counter clockwise. It must have lasted an hour plus, followed by a day of compete exhaustion and my head feeling like it was stuffed with cotton and the tinnitus that I usually have was at least twice as loud. Kitsa what kind of Dr. diagnosed your Endolyphatic Hydrops and what tests did you do? For every season ... turn ... turn ... turn.

I think I took Taurine a few years back I can't recall any side effects at all. I don't have a problem with gluten but I certainly have had to eliminate sugar from my diet. No worries on the weight loss, I find for me I that I can stabalize my weight much better with natural fats (butter) and whole foods (beans, brown rice) than I can with refined products in any event. Good luck, and let us know how it goes.

Sending light her way .... and a facebook invite. Thanks for the update.

I see news blurbs all over today about some new research that suggests a retrovirus <XMRV> is linked to CFS. http://mobile2.wsj.com/device/article.php?...oWhatsNewsThird Best I can tell, there is Not a commercial lab doing the xmrv test at this time. If folks here otherwise, I 'd like to follow up with my PCP about this at next visit.