EarthMother

Big hugs to you dear. Those dreadful mornings during really rough spells are the worst. It's so hard to bathe, to get up to use the bathroom, to brush our teeth. The nausea is so bad, we can't rest. And for me I become so hypersensitive to all stimulus that watching TV is out of the question. Sometimes putting on those support stockings can help ... but struggling with them when you can barely lift your head is a comedic tragedy. Advice? All I can promise is that it passes. We can count on only that single supreme truth ... everything changes. I forget this mind you each time I go through those unbelievable mornings. My mind races and I rush off into my mind-made future of what-if. What if I stay like this for a week, a month .... I'll loose my job, my family ... my mind. Deep breath. All we have is this one tiny moment. I am working very hard now to catch myself and just watch my thoughts instead of being so invested in them. Oh, I'm worried about my job again ... ok. Then I try and let go of the mental noise and focus inside of my body. My stomach is whirling, my head feels like it is spinning. Ok. What does that energy feel like. And I look at the powerful vibration it has in my abdomin and head. Then I see if I can titrate to another part of my body, someplace I feel grounded. Maybe a foot or little toe. I take a moment to sense what that feeling is like. On a few occasions, I have been able to find a spacious peace in my body even when other parts are still vibrating and thick. I wonder if all those sitting yoga sages have POTS and they are also too dizzy to stand up ;-) Sometimes these 'downtimes' can be our most inspirational. I hope you find something to help you pass the time. Good thoughts your way. EM

Mary Shomon has a good website on thyroid disease ... if I recall it is something like http://thyroid.about.com I know it has lots on IBS, perhaps some other stuff on low mot. I have thyroid disease ... .25mg is a very low dose, keep close tabs with your endo until you get your TSH up or rather down to a level that 'feels good' for you. As for hair loss .... I go through a significant 'shedding' about 3-6 months after a major illness or significant crash. This fall I lost a lot of hair. But fortunately as is the case with most women, mines coming back just fine. Good luck in your journey as you find out what works for you. EM

I carry a tiny mister (spray) bottle in my purse. I don't think twice about pulling it out in the middle of a meeting if need be. My sense is it has something to do with that hypothalamus-pituitary-adrenal axis ... but I'm trying hard to just let whatever it is just BE. Hoping my body is working its way hrough something, and I just try and make myself comfortable as best I can. Good luck -- EM

What an amazing trip. Many of us, myself included could not make that kind of road trip. Congratulations on surviving the whole ordeal, you are very brave indeed. One of my 'best' POTS appointments was with a cardiologst. He knew very little about POTS and didn't think twice about getting on the phone and calling a colleage. There were no miracle answers, lets face it this website has more information than a team of mayo residets. But what he did give me was a clear understanding of my arrythmias and other cardiac issues that really worried me. He also gave me confidence that I would improve. Somehow. I had pretty much given up on getting better. And it's that verbal affitmation attitude that helps me the most. Manifest your future. Say to yourself .... I have a great doctor in my neighborhood who supports my healing vision. It may be hard to say at first because your mind may be use to playing other tapes. But keep saying it, every day and watch what happens. I'll keep a good thought for you. EM

Dear EthansMom, Thank you for sharing your story, we each learn so much from each other's victory and challenges. You have every right to feel betrayed and abandoned, they should have told you about the office closing. However, I believe in synchronicity and I feel a wonderful opportunity is in store for you. Keep in mind how successful you were on the job. It was difficult most days but you did it anyway. You proved to youself that you are going to determine your own limits and not let POTS limit your life. Give your little one a big hug and give yourself a pat on the back. You are a pioneer on the frontline of this POTS adventure. Good thoughts your way, EM

Hugs to you Migraine, It's so hard when we have little ones (my youngest is 7 and has no memory of what I use to be like when I was on my feet running at full speed.) But I find we raise thoughtful, caring children when we are faced with these health adventures. Perhaps someday they will be the ones to transform the world. Sorry your husband didn't have the right things to say. Mine told me just this week that he doesn't think a day goes by that he doesn't hear me complain about SOMETHING. It took me off guard, because I thought I'd been doing so much better. But I guess even on our "better days" we still don't measure up. Ok, I had better go before I well all up and cry again. Good thoughts your way. And hugs to everyone who keeps on keeping on. I wouldn't be able to do so much of this without each of you. EM

Sue, I find for me that different things work for me at different times. I tend to go through periods when I take some meds and then as I improve I am able to stay off for long periods of time. In general I don't do so well on meds so I take them only when I have to. I've been taking ddavp since December and it's helping me keep my fluid level high. I suspect I'll be able to taper off sometime over the summer. My doctors work closely with me with any changes and we agree in advance on any new plans. Good luck on your journey. EM

Family .... doesn't the word mean sour milk in latin? (I jest.) But it is often the case that those closest to us, who love us with all their heart, really can't accept the fact that we are ill. They don't want us to be ill. It makes them face their own mortality, the fragile balance of life and illness. They don't want to believe this could happen to them .... so ofcourse then it must be something wrong we are doing. Bless you for being so strong and succeeding to go out on your outing. Try not to judge the event by what happened at the end. You did really well. And when you feel a bit better, you'll go out again. But maybe take cab fare with you. Good thoughts, EM

I feel like giving up often ... but I can't quiet figure out HOW? ;-) I think there is a lot to be said however to surrendering to the moment. Doesn't mean we stop trying .... but if it's a "bad day" we quickly **lower our expectations**. Success may mean walking downstairs and sitting on the couch while we watch our active toddler run around pulling books safely off the shelf. I know it's hard to remember that this often comes in cycles ... worse yet we don't know how long the cycle is going to last. But instead of thinking about what might be ... or what has been .... or worse yet what we use to be! ... come back to the present. Big deep breath ..... ahhhhhh. Good. Listen. There might be birds outside, perhaps kids playing on the street, maybe the hum of a computer in the background :-) Shrink your attention down to the smallest moment. Just right now. Right now, I'm breathing. I may be in pain, or dizzy, or very sleepy. Try to make yourself comfortable where you are. It will pass. And I know this is much easier to say (type) than to do. I completely fell apart last night when my husband told me he had a 3 day conference to attend that was an hour from home. An hour from home .... he'll be back every night, but I couldn't handle the "change" from the normal routine. Terrified that the stress would "cause" another crash, frightened that I would get sick and have no one here .... more and more mental noise. I was lost in it. And I'll probably loose it 100 times again before the trip takes place in a few weeks. So no .... it's not easy when we are not feeling up to it all. But I suppose it's all part of the journey. Good luck in your own healing adventures.

As a rule of thumb <because I am so sensitive to meds> I always ask my doc for the pediatric dosing. Or I try half or a quarter of the pill and work myself up to the full dose -- if appropriate and safe based on the type of med. The drug I am talking is DDAVP, and it s typically used by children for bed wetting. It 'tells' the kidney to concentrate the urine so I don't have to get up all night to use the bathroom. Good luck, EM

Dear Lou, I know the horrible feeling, the loss of what we have held on to as our sense of self. I cry when I am having one of those days, and it is hard to get perspective on anything when we can't focus and make sense of anything. Last week I decided to try something new <I've been doing a lot of reading, so this isn't 'new' by any means> I decided I wanted to find some peace in it. If I was trapped in brain fog, I tried to just let it be. Just float with it, instead of fighting against it or being so angry and sad about what I was going through. On a few occasions I noticed there was a spaciousness around what I was feeling. Like the picture you described about looking down on youself and observing what was happening. But instead of trying to struggle to get 'back' into my mind made reality, I was content for just that small moment to just watch, without judgment and without any pressure to change anything. So do I now walk around all of the time in a serene state of non-body-mind bliss? Far from it. I still tend to go to my familliar patterns of struggle and frustration against what 'is'. But I'm working on it, and I really like those little moments when I catch myself observing instead of reacting to what is going on. I think for me ... the more I can find that stillness around whatever is happening, the more resources my body will have to reballance and find it's way back or not ... it's all an adventure. Keep the faith, EM

I can speak to #3 ... for me I've stopped trying. If its a doctor who doesn't get it, then I know this quack is not for me. If its a co-worker, I learn to avoid that topic and know that karma does exist and they will eventually 'get it' if not in this lifetime then the next... and if it is a friend who doesn't understand I try my best to educate her, then in the end know that some friendships change and new ones are possible. For what its worth ... I believe you 100%. Keep the faith, EM

Does it happen regardless of what you eat? Or rather if you eat at all? I noticed for quiet some time that I had to lie down for an hour after eating lunch simply because I didn't have the blood volume (or whatever this strange thing is) to both digest + stand or sit up. It's been better, lately, but I still can't plan anything right after meals. If I have a meeting, or business to attend to, I skip having a formal meal altogether. Instead I nibble on cheese, soy deli meats, walnuts, almonds, raisons and keep drinking water or hot tea. Then when deadlines have passed I can eat a larger meal, as I know I'll be able to crash for a while. Good luck, EM

I just finished reading this guys' book from the web site Jackie posted below http://www.mind-body-health.net/ It's really cool. First, I love the concept ... 'download my book in pdf format for FREE ... then if you like it you can make a donation.' If Doctors followed that business rule, we'd all be in better shape!!! ;-) The book reads like a master's dissertation on the psycho-physiology of stress. Which is a cool thing for me because my college thesis was in the same field <many moons ago.> The HPA axis theory is strong and for those of us with CFIDS, POTS, panic or depression ... it is likely an important piece of the puzzle. The author spends a lot of time talking about the plasebo effect. But don't let this put you off ... what I think the deeper message is here is the power and wisdom of our body-mind. Indeed I'll go a step further and say it is the idea of 'perceived control' that is the key element in our recovery. If we believe there is a means for our body to rebuild, then we have a better chance at success. Look at the implication here for our medical professionals ... we all know how much better we feel when someone finally believes us and we know they are on our side. Equally as important then are those encouters with the uninformed 'doctors' who tell us we are crazy and attempt to diminish our confidence and remove our perception of control. The antidote for the latter is ofcourse this wonderful website, where we can come and validate our experience, our wisdom and drink in the confidence that we are not alone, but rather in very good company as we travel down this healing road. Warm embraces of gratitude. EM

Dawn, Thank you for sharing your follow-up EMG and findings ... it sounds like you have found an important piece in your healing puzzle. I know the maternal concern we feel for family members, I suspect it is hardwired in our DNA for good reason. My challenge is to try and not let myself wander into that 'mind-made' future of endless possiblities, but rather to bring myself back to the present moment. The now, is always easier to handle, and always enough. Sounds like your NOW is worth a warm embrace. Congratulations on finding a lead, & good thoughts to you and those you hold dear to you. EM

Jackie, Thanks for the link, I also like the HPA material I've read. It's a strange circle of symptoms many of us have in common. I also like meditation & stress relaxation tools. BTW I put up another free 10 minute meditation, this one on relaxation, on my web site. One by one I'll post them all as free downloads for fellow POTS friends. Enjoy! EM http://www.coolkarma.com

Wow Lou we always learn so much from you. Thank you for helping to demystify so many procedures. It helps. I'm nominating you for the guinea pig award for the week! Please let us know what you learn and how it will help guide your treatment plan. With light & love, EM

You need to replace electrolights not only salt when you are lossing all you are putting in. I lost a lot of weight last summer and had a hard time keeping my water weight back on. In December I talked to my doctor about trying DDAVP there is information about it on this web site. I take only a very small amount but it makes a world of difference. I can sit through a 2hour meeting or sleep well without getting up to pee all night. Eventually, I plan to back off the drug, and use it only when I 'crash'. But for now my PCP and cardio think it's helping, so no changes until I recover more of my strength. Good luck on you journey. EM

My PCP did a food sesitivity blood test about 2 years ago and it came back showing that my body was making antibodies against wheat (and a sleu of other common foods I was eating at the time.) It was a complete shock. I had no IBS signs, and wheat was part of my daily diet. Did you know it is in soysauce and even cheerios? For me, the tests indicated I was not gluten sensitive, so I was able to use a wide variety of non-wheat flours including rye and other products that contain gluten. I now use a rotation diet, having wheat one day a week and a wide variety of grains on other days. I have met lots of wheat sensitive people on my journey, some have been able to return to wheat after several months, others have decided to stay away for the long haul. Whatever works for you. I hope you find some help on your adventure. Bon appetite, EM

Looking back, I'd say I was "cured" several times. When I was in my early 20's and "fell ill" the doctors were puzzled and said they could not explain why my blood pressure would drop when I stood up, or why I was having high heart rate on "mild excertion". But in a few months ... I was fine. I went on with all of my normal activities and then during the first trimester of my first pregnancy I was again "inconvenienced" by a bout of orthostatic intollerance. But again it went away on it's own. I attributed any odd symptoms I would have over the next few years to my Thyroid disease. It wasn't until my mid 30's that the crash was so severe and the recovery so slow and incomplete that a new diagnosis began to emerge. Then for me, with this latest "crash" last summer, I came to the diagnosis of POTS. New name, same symptoms and yes, they have improved since the fall, but I can't say they've gone away. So I probably could believe that 60-80% of the people "diagnosed" are "cured" at any one time. However, if we did a longitudinal analysis and followed these people over 20 years, I suspect we'd find more shades of gray than any black or white answer to this complex disorder. Good luck in your journey, EM

Thank you for sharing how hard it has been for you. Your story amazes me. People ask how do we work .... well what you described seems like the equivilant of three full times jobs. What a POTS pioneer! I think able bodied people would be having a difficult time given your circumstances. The fact that you have kept going is an inspiration to all of us. I love the book list we are generating from the responses. I have been enjoying Pema Chodron for my meditation journey. Recently I started reading Eckhard Tolle -- what I liked was the way he could weave so many belief systems into a common present truth. Katherine's book recommendation on Andrew Weil is also terrific. I read it early on in my healing journey and become a big fan of this holistic practitioner. In fact, Dr. Weil has a great web site with lots of free advice. Here's a link to an article on IVF: http://www.drweil.com/app/cda/drw_cda.html...uestionId=89074 With light, love and laughter, EM

How about a perm so you don't have to blow dry it? Something really short and sassy that you can just finger comb into place? The blow dryer tended to be too much stimulus for me, the heat and the noise was too much to handle. I picked up a "quite" hair dryer with a cool setting at Sharper Image that really helped. It is very quite and helps me not jar my system too much in the morning. But I've given up on styles that I have to raise my arms and manuver. I keep it simple and straight. Quick bun, pony tail, or a couple of clips. Hope you find something that works for you. EM

It's one of those mixed blessings ... my wonderful teenage daughter (isn't that an oxymoron?) won the county division for her "history day" project. I am a very proud Mom indeed. The next level competition is in Sacramento ... plane ride away ... and I don't really travel much these days. It was hard telling her that I couldn't go. I would have loved to make that trip with her and watch her compete. It's sad what we give up in our lives with POTS. My saving grace is that I REMEMBER what it was like to be 16 .... and truth be told I would have LOVED to go away for the weekend without my mother! So yes, I'm sure she'll be fine with her other friends who are going .... and the teachers who will accompany ... and the other parents who WILL be traveling with their kids. She'll have a blast. And I'll do my best not to feel guilty. Keeping the faith, EM

After so many years with POTS and various auto-immune diseases, I find myself "questioning" my own body's wisdom. I'll wake up with swollen glands, feel achy all over, very tired, low energy .... then I'll take my temperature find out it's normal and decide then "I'm not sick". First thing I needed to do was accept "I AM sick." It might be a bacterial infectin, it might be viral, it might be the chi is flowing through me and scattering my karmic being. But whatever it is, I'm sick and I need to be kind to my body. Give it what it wants, try and reduce my to-do list. I KNOW this is terribly hard as Mom our ability to downsize is limited. Getting it checked out by a doctor is a wise move. I know people who never had allergies before, but this year seems to have grabbed them by the ragweed collar and shaken the histamines right out of them. But even if the doctors find no probable cause ... it doesn't mean it's not real. Best of all, your body will find a way to heal. How have you been sleeping? How is your diet? In particular your fluids? Oh and the baby! Any recent ear infections? Anytime my first born got an ear infection I came down with swollen glands She and I were like dualing banjos when it came time to downing anti-biotics (which I hear they are no longer giving for ear infections --- ahhhhh doctors .... we'd like to think it's based on science, but it's often closer to voodoo politics.) Good Chi your way, EM

Poor dear. Gentle hugs your way. The down times wouldn't be so bad if we could plan ahead for them. I'd like to have a POTS channel on TV. Why not we have 500 cable stations? Our POTS channel would be able to predict when our down times were going to occur, how severe they would be and most important how long they were going to last. "Welcome to the POTS Television Network, your satalite dish readings indicate that this will be a sunny week for your symptoms. You will be able to make all your meetings and obligations, albeit a bit slower than most. Make sure you take time to nap on Thursday, because you are going to need a little extra energy by the week's end. On Saturday, the forecast calls for pain and dizziness, with a light sprinkling of nausea by late afternoon. You won't be able to get out of bed, do your food shopping, or even take a shower by Sunday. So tuck in bed, or lie on the floor, that's where you will end up anyway if you try to stand, but never fear by Tuesday at 3:00 p.m. you will begin to feel like yourself again. Thank you for visiting the POTS Television Network." Hope you feel better soon. Light, love and laughter your way. EM