EarthMother

Thank you so much for sharing your adventure. It sounds like you met a very important person who is willing to help you with this jigsaw puzzle. I admire your bravery and perserverence. Good luck on your healing adventure. EM

Dear Ernie, I wish I had sage advice ... I have tried taking my husband to help speak for me, I have tried writing down a list of questions and points I want to emphasize, I have tried bringing "evidence" from my research ...... and in my experience it seems to boil down to a game of chance. A "good" doctor will listen. A "good" doctor will explore all of the options. A "good" doctor will work as your partner in this discovery process. And a "bad" doctor will ignore everything you bring, anything you do, anyone you bring with you for support. This is not to discourage you by any means .... simply realize that if this professional you meet with on Thursday falls into the latter catigory then you don't want them anyway. The right person will come, at the right time. All of my hopes and good thoughts are with you that THIS appointment will yield fruitful results. Good luck and let us know how it goes. EM

Dear Tearose, Thank you SO much for sharing. You are a true pioneer. We are grateful to you for blazing the way. Good luck on your continued adventures. EM

Dear persephone, Sounds like you are running very fast. Sorry dear. Sometimes those very close to us feel our pain in a different way. It makes them feel helpless and so very sad -- so they say "snap out of it" -- because they really want to stop hurting themselves. Remember they love you -- and korny as it sounds -- this too shall pass. During my very down times I become an avid reader. Right now I am reading "Postive Energy" by Judith Orloff. I also am a big fan of Cheri Huber (she has a wonderful book on depression) and Eckhart Tolle who reminds us that illness does not exist in the NOW, it needs a past and a future in order to survive. The NOW may have pain, weakness, etc. but if we can just sit with this tiny little moment in time sometimes it becomes easier than if we jump out too far ahead (I should be looking for work, what am I going to do with my life) or if we go too far back (I've been sick for so long, I've lost all of my friends) -- If you find yourself going to these places, gently try and bring yourself back to this moment. Breath in, breath out and just be right here. Good luck on your healing journey. EM

Dear Nina, You are our rock and inspiration. So sorry about the pain -- when it interrupts our sleep it makes it SO hard to rebound. Good thoughts your way dear. Wouldn't it be cool if our DINET bracelets had these magic sensors that would turn red when we were getting close to overdoing it! :-) We could just put them on everyday and they could have a little flashing light that tells us we have danced enough for the day it's time to go take a rest. Feel better soon. EM

Dear Danelle my heart goes out to you (no pun intended ... ok, maybe a little pun) Don't beat yourself up too much for feeling so frightened. I don't know WHY it happens but as you can see from the posts, it does to so many of us. You are not alone. I am still reeling from my heart skipping about a month ago! I can feel the hyperarousal state still -- just waiting to see if it is going to go off again. And it has -- once in a while still. And it still throws me completly. And the automatic thoughts -- wow, they are like the speed of light. Bump goes the heart and then poof my mind has me calling 911, going to the hospital, getting admitted for either a horrendous heart disease or more likely severe mental illness, and then I would lose my kids etc. etc. etc. Strange it is. As for magnesium -- I really do think this helps me. And I have tried this new product from the little healthfood store I go to called "Natural Calm". http://www.naturalcalm.net/home.shtml It's just pure magnesium -- in a powder form that supposedly gets assimilated by the body rapidly. You can take as little as a half teaspoon to see how it feels and up to 3 teaspoons or more if you need to. (If your bowels get too loose, then you should back down a bit.) Personally I take 1 teaspoon in hot water mixed with a tad of juice -- three times a day. Or about 650 mg a day total. If you like relaxation tapes, I have recently put all of my 10 minute meditations on-line for FREE download. (Just ignore the donation button -- I really do want these to be available and free for all of us here.) http://www.coolkarma.com/download-donations.html Sometimes it just helps to talk to someone as we ride out the wave. I'd be happy to be a voice at the other end of a phone line if that would help. Indeed if anyone wants to be part of a telephone ring, I can put together a list of phone numbers we can use in a pinch. Just send me an email and we can do this off line. What we need to do is reframe these arythmias in our own minds. How about this ... the next time one of us feels a skipped beat intead of going down the familiar rabbit hole let's try this instead ..... remember that ding dong bell and the slogan "Avon Calling!" Well, this will be our own "bell" with a friendly voice of a POTS friend reaching out and touching you to let you know you are not alone. So for the next skipped beat -- smile and think of it as one of us tapping you on the shoulder telling you we are here with you. Standing beside you every step of the way. Good luck on your healing journey. EM

Great Minds Think Alike! I heard the same news today about the new guidelines and salt -- So this is what it is like to be invisable. EM

Dr: "I think your pain is all psychological." Patient: "I suspect your medical degree is ficticious too." There. I feel better now. EM

Thank you so much for sharing! What a wonderful gift you gave your neice and a fabulous start for the new little person who joined you in the end. EM

Hugs to you dear sweet POTS sister. It is hard. You are doing an amazing job. Things are still not getting better. It makes you feel hopeless. There are wonderful posts here with wonderful suggestions. I can really only add my good thoughts to the list. And perhaps a tiny voice that reminds you to breath. Take just a moment (or more if you like) and Breath In. Think -- I am breathing in. Then Breath Out. Think -- I am breathing out. Do it again, and again. You don't need to change how deep you are breathing or how fast or slow. Just notice your breath. If your mind starts to wander (why am I sitting here breathing when there is so much to get done and so much going wrong!) just notice it and let it drift by like a cloud in the sky as you return to your breath. Breath In. Breath Out. And just be present with your breath. Sometimes when we really become still with our breathing, we begin to see how everything in our life comes and goes. Our money, our health, our successes and our failures. Everything changes. Just like our breath. It's good to know this in difficult times. It's also good to realize that we don't need to be "in control" of our breath. It just happens -- automagically! Sometimes when we let go -- we notice other aspects of our lives changing right before our eyes. Good luck on your healing journey. EM

Thank you so much for the update. We learn so much from each other, it is a real help to hear about each other's journey. How is the withdrawl from the DDAVP going for you? I know I tried to cut back last month and went into a complete tail spin. My doctor and I consulted and he is addiment about me staying on it. I take 1MG daily. Happy New Year. EM

I am also a big fan of Zicam. If I have a meeting and anyone coughs I go home and use Zicam to try and combat the virus right off the bat. That plus hand sanitizer etc. all because I do think my immune system seems a bit challenged. Not as bad as the first year I "went down" with this though. Back then it seemed like I had a constant infection that just kept moving around ... strep throat, to nasal infection even to eye infections and then back around again. Good luck getting the brass ring so you can get off the merry-go-round. EM

Count me in with the soggy sheet group .... the other night I soaked not only my side of the bed but half way over to my husband's side of the sheets. I also noticed I was much more symptomatic the next day. For me it could be hormonal, but otherwise I guess my system is just detoxing and that is always a good thing. Better out than in you as Shrek said. Start the next morning off with a glass of OJ and a magnesium supplement. Followed by something real salty for breakfast. I find if I push lots of water, I just deplete all of my electrolytes. So I need to bump up the potasium, sodium and magnesium the next day. Good luck on your healing journey. EM

Gentle hugs to you dear. I was once hospitalized in the throws of what I now can look back and know was a bad POTS episode and I had two "experts" attending specialists and one of them was also convinced I had an eating disorder. They just don't get it .... I would love to eat, but I felt SO nauseous all the time and my body just could eat well. The rapid weight loss, nauseous, and weakness are always my first signs of a bad crash. After reading more on this site the pieces of the puzzle fall into place. What a relief to now understand, I am not crazy. I was never crazy. Ok, I may be crazy but it has nothing to do with my illness -- that IS real. And I am not anorexic, I am not depressed, I am SICK. And my body is trying to figure out what to do to get back on its feet. Quiet literally. Things that worked during the bad beddridden spells: Warm salty drinks. Compression stockings. Magnessium. Tiny bites of food throughout the day instead of any large meal. I kept a journal of what I could do -- like sit up in bed unsupported for 1 minute. Then I noted when it was 2 minutes. Then it was ... can walk to the next room etc. It helped to write down the progress because it all seemed so small at the time I may have missed it. Good luck to you on your healing journey. Don't give up. Your body is not giving up on you. Even though it may feel like that right now. EM

Most certainly. The elevated microsomal antibodies are just telling you that your body has decided to lauch an attack on your own thyroid gland. They don't tell you if how successful the attack is. In fact, Hashimoto patients can show high antibodies in their 20's but will not show any signs of sluggish thyroid until into their 40's and 50's. Actually sometimes your antibodies can be really high -- but you feel great. And other times your blood work can show NO SIGN of antibodies and you feel miserable. In my experience the antibody test was never very helpful. Every now and then I ask my doctor to run it but the results never seemed to correlate with how I felt or my other thyroid lab values. Good luck on your healing journey. EM

Hi Gena, More frequently I get chest pains when my heart is "normal" than when it is skipping. Either case, they seem to be chest-wall-muscle type pains. Another tip I learned along the way is to see if my fingernails still look "good". If they aren't blue then I figure I am good to go. (Easy to say NOW ofcourse.) Tearose, You are so right -- and so wonderful. I like the idea of a spiral. Perhaps a wonderful labryth. Thank you so much for reminding me. Good luck to all on our healing adventure. EM

With my POTS I never actually faint ... but I become very symptomatic with both questions 1 and 2. As for food, I've been doing a rotation diet for the last few years. I had blood tests years back that showed sensitivity to wheat, eggs, dairy and also separate tests that showed very high candida. So now I watch carefully what I eat and have reduced my sugar intact dramatically. I still eat most foods, but only once or twice a week with several days in between. For me, big meals are the real killer. Or high sugar, or high fat. I notice that some days I can go for long periods of time (like from breakfast to lunch) without snacking and other days I really need to eat something every couple of hours. When I am in a bad spell, I need to plan on 1-2 hours of down time after a meal. As for chairs ... I can not sit totally upright. I actually bought a computer chair for work that reclines and has a little footrest. It has been a real lifesaver. And when I have meetings, I let people know that I need a "comfy" chair at the board table -- one that is big enough for me to take off my shoes and cross my legs up into it. Otherwise, I have a real hard time sitting through discussions. Folks have been wonderful and very mindful of my needs. Sometimes they even arrange for a speaker phone on the conference table so I can "call-it-in" on those days my body just can't get up to speed. Good luck on your healing journey. EM

I am SO glad there is a SEARCH command on the forum so that we can look up threads and topics we have seen before. This time it was my turn to go into the trauma vortex again with heart palps last week. All the zen in the world didn't get me past the "I can't go through this again ... I am going to die this time" saga. I'd been fortunate not to have any "odd" skipping for months -- maybe years now. And then "out-of-the-blue" my heart skipped a few times the shower, then as I was getting dressed, then again as I tried to go to work then etc. etc. And I was lost in full blown survival mode. I kept thinking of going to the ER but I've been there done that and my cariologist says IT'S FINE. So instead I went to my chiropractor -- sat down and said "Doc, I just don't want to loose it everytime this happens." He looked at me and said "Your heart beats 100,000 times a day .... you know what I mean. One hundred thousand times a day it beats just fine. It serves you really well and has for all of these years ..... so if it wants to dance, once in a while ... LET IT DANCE." It brought a smile to my face. (Did I remember this and instantly calm down when it skipped at lunch ... NO --- but it is my goal and I am not giving up.) In retrospect I think my electrolytes were off that day -- I had tried to go off of my DDAVP (bad move) several days prior and I had been peeing lots of fluid for a few days prior. Once I realized this ... I pumped up my magnesium, added salt and potasium to the brew and eventually it went away as mysteriously as it came. Ofcourse I spent the next two days in a cave -- worrying it would happen again. But I am gradually gaining my confidence back. My new favorite product is something called Natural Calm -- it is a magnesium supplement that has better absorbtion than the vitamins I had been taking. Any other tips on how we handle this would be greatly appreciated. Good thoughts. EM

I am so glad I "lurked" tonight and found these posts. I am also one of the Hashimoto-POTS people who traveled a very similar road to ultimately find a doctor I can work with on all counts. In fact, just last week I sat down with him and said that I felt my .5 TSH was really a bit too low for me ... that I felt shakey on my 100mcg synthroid and maybe it was too high. I asked to re-test and to include all of the free t3s and 4s and look to see if there were any other signs. He agreed and wrote up a blood test slip for me -- but as he handed it to me said "You know even if the lab results don't come back supporting too high of a dose ... if you still 'feel' off we may want to try lowering the synthroid regardless." Can't beat that in an MD. Good luck to all on your healing journey. EM

Sounds like you did a terrific job today with the chest pain. Pat yourself on the back. No pun intended. Becoming aware of our body sensations without letting them frighten us is a big part of this healing journey. Sometimes for me it helps to ask the doc real specific questions like ... how many skipped beats in a row are OK before I should call for help? (In my case he told me to completely forget about the ectopic beats no matter how many. Easy for him to say ;-) Or if I am in terrible pain, how long should I wait to see if it passes. He gave me two different answers depending on if I had a fever, or not, if the pain was new etc. As for other abnormal/normal things for us POTS people, I really love MightyMouse's four day rule. If I recall correctly she once posted that she waits four days with a new symptom before call up her primary physician. I began a serious sitting practice (breathing meditation) a couple of months ago. I do 20 minutes in the morning, 20 at lunch and another 10 in the evening with my family as a group. What I am coming to notice is that things pass. Sharp pain down my back. Breath, Breath, Breath ... it changes, it passes ... breath, breath, breath ... hot flashes race down my arms, pulse rushes to 122 ... I notice it and let go of any "mind analysis" and return my focus on my breathing. Everything passes ... trusting that is an adventure. Salubrious. EM

For me it wasn't gluten, but wheat in particular. I am OK with gluten, rye flour doesn't bother me at all. But all hypbrid GMO wheat takes a toll. EM

I felt awful asking my doc for one too, but then when he filled out the form and checked the box for perminent I felt worse. Though really it was just to make things easier on me, I don't have to reapply every year. I don't use it on 'good days' and within my family we call it the 'blue' tag or 'blue' parking and avoid the word handicap. As for tearose' initial question ... hugs to you dear, I worry about this happening to me all the time. Here's my thought ... keep in mind that everything people say or do reflects upon them ... not anything real about us. So why not just look them in the eye and say 'why do you ask' stranger: 'you don't seem disabled ..' 'why did you want to know?' stranger: My grandmother can't ever find parking and I hate when people abuse this reserved spots. 'I'm sorry about your grandmother, those things are really hard on me to.' Point is to bring the conversation back to them ... why, what, why ... good bye scenorio. We don't need to be on the defense. Most people live in there own tiny world their thoughtless comments really have nothing to do with us. Course when / if it does happen to me I'll likely forget my zen and reach into my shopping bag to pull out some produce and send it flying in their direction with a sarcastic line about 'and I have a good arm too!' Salubrios! EM

1. Confirm that you have POTS and dilute urine. If you have also been diagnosed with diabetes Insipidius, please include what type it is. *** Count me in. Though I never had a formal "dilute urine" test ... I figure if it is clear like tap water that would be it. I am confirmed Tilt Table Test POTS. Began DDAVP Last Devember. I take .1 tablet once a day. Though I am trying to see if I can cut back ... 2. Do you have multiple chemical sensitivities? ****Again no formal test, but we use only vinager to clean in the house, everything must be unscented etc. etc. etc. 3. Do you take very very small doses of drugs? In other words, do medications affect you at very low doses? ***Yep. Child's dose on everything from advil to antibiotics. Good luck on your healing journey. EM

Dear Tearose, And everyone who is at the moment down under .... I offer a warm hug and a gentle song: http://www.coolkarma.com/mp3/samsara.mp3 My daughter and I recorded this yesterday. Isn't it amazing what you can do slowly sitting at a computer. On the days that is that we can actually sit up! Good thoughts to everyone. I am grateful to be having a few of those days. Salubrious. EarthMother

I have been creating wheat-free recipes for years now growing list below: http://www.coolkarma.com/Foods/index.html We are vegetarians, but when I first was diagnosed with wheat+ sensitivity and candida, I had to also give up dairy, eggs and sugar for the better part of a year. My diet is more flexible now, but I still use a rotation diet -- I do not repeat a food eaten one day for the next 3 or 4 days. And I only eat eggs or cheese once a week. Even so, some days opening a can is the only thing my system can handle. I try my best to put a little pizzaz into the standard fare. For instance, last week I sliced up some veggie hotdogs and placed them into a can of veggie baked beans -- then added two handfuls of fresh cranberries and heated it up until the berries popped. Kids thought it was a cool twist. But then again, my kids will eat amaranth porriage in the morning and think I am Emeril. Bless their hearts. Good luck in your healing journey. EM