EarthMother

Dear Jackie, I cried when I read your post. Big hugs dear. This is so difficult and I'm never sure anyone ever really understands. And then we read something like this and go ... wait, look, there is someone out there who "knows". Each of us seem to have to find our own path. But I can share with you some of the things I have learned about myself along the way. I also have trouble taking calcium. I do however take 800 mg of Magnesium each day (200 mg doses 3-4 times throughout the day.) It helps my heart not skip so much and helps me feel a bit more balanced. I didn't do well on beta blockers -- and my current cardio recommended against them. I relapsed this summer also ... lost 15 pounds, the panic attacks were horrendous as was the nausea, shaking and inability to stand. Things are coming back for me now ... little by little. I try not to push too hard and try not to beat myself up. In December, I changed my thyroid dose and began taking salt tablets and something called DDAVP (anti-diuretic) and I have been able to put on about 6 pounds so far. With another 8 or so I'll be back to where I was in August then I can start tapering off the DDAVP. I'm trying some new therapy for the panic attacks -- it's called somatic experiencing and EMDR -- also some Qigong (chi kong) and massage. Each seems to help in it's own way. I am so sorry you are having such a hard time my dear. I know what this is like and I wouldn't want anyone else to go through this. (goodness I'm starting to get misty again.) Good thoughts, Stay in touch. EM

You may want to consider a Doula -- I think it is the best of both worlds. I used a Doula for my 2nd and 3rd births and it was wonderful. Unlike a midwife who are often not welcome in the major hospitals, a Doula is a professional birth coach who comes with you and your husband to the hospital and stays with you both through out the labor. My Doula was able to fight hard for the things that I wanted -- because let's face it I was pretty busy at the time -- and for the most part everyone else left us alone so it really felt like we were having a small quiet at home birth. I drew up birth contracts with my Doctor (and the other OBs who were on call for him) in advance and made sure that we sent these ahead to the hospital so that everyone knew what my plans were and that they were supported by my OB. Good thoughts, EM

My path has been to remove all clocks from my bedstand so I avoid the temptation of looking to see what time it is and I try not to think about how many times I have woken up or how long it has been and I still can't get back to sleep. It may not change what actually happens at night, but somehow in the morning I feel a bit better about it. I put up a free 10 minute guided meditation on sleep on my web site after I read so many posts about sleep issues. Some people have said it helps. If not, it's still somethin' to do while you are wondering around in the middle of the night :-) http://www.coolkarma.com Good thoughts, EM

We need to have the Guinea Pig awards for the week .... For those who are the perfect definition of PATIENT. We try everything, we wait and watch and wonder if any of this will lead to the help we are seeking. We laugh, we cry and we reach out to each other for a gentle embrace at the end of a long day. Congratulations Dan. On our first recipient of this noble honor. Good thoughts, EM

Sending good Qi (chi) Dan's way ~~~~~~~~~ EM

I also use ibuprofin ... but I can only handle half the dose. I take one tablet. It either works or it doesn't ... but two just makes me sick.

Big hugs to you Sarah. A miscarriage is a big loss. My OB told me that it happens close to 50% of all pregnancies. Most of which are undetectable (a couple days late for a period etc.) In addition, our hormones are actually HIGHER during that first tri-mester as things are getting rev'd up then they are at full term. This means that things like postpartum depression can be even worse for us with a miscarriage. So give yourself plenty of time and don't beat yourself up if you are having the "blues." Each of us are so different with our POTS and each of us have had very different pregnancy adventures. I have three children and indeed each pregnancy was very different. So no guarrentees. But I suspect you've learned that already about life with POTS. Best advise shop around for a doctor who is supportive. Or shop around for a new husband! (Hoping from reading your humor post on the boards you will know the latter is intended in jest. He sounds like a loving, caring man who at heart is only thinking about your best interest. Good luck to you both!) Good thoughts your way, EM

What a beutiful summary, it is so clear that you understand what your wife if going through. Deep bow of gratitude. ~~~~. As for the likelyhood of doctors actually "reading" these posts ... . My sense of the medical community is that they really like the birds of a feather approach. It would however be a great idea. I would like to encourage our medical teams to talk to each other. My doc sent an email to one of the researchers at Mayo last month and the researcher sent an email back! I'd like to see more of this kind of professional networking. You are so right about the misperceptions out there ... because some of us do still work (with an incredible amount of sick leave, and working from home as necessary in my case -- and I know this is very rare.) Or we work between relapses etc. My cariologist actually referred to POTS as a nuissance disease. Bless him though, I think he was really just trying to put me at ease. He was also equally stubborn about insisting that I continue to work. That said, POTS is beginning to be recognized by social security disability criteria. But we have a long way to go. Here's one link I came across that mentions neurally mediated hypotension (tilt table test) is one of the criteria that is considered by SSN. http://www.cfids-me.org/disinissues/ssa0499.html Good luck to you both. It's very good to have you here. EM

Yes I'd like to know about the salt spray too! I take these buffered salt tablets now http://www.immunesupport.com/shop/product....duct__Code=MJ01 Seems cheaper to just add table salt, but I really hate the taste and these don't seem to cause any stomach upset. It DOES feel so much better knowing you all are out there. EM

Must be subliminal suggestion .... but sure enough that tick I had in my finger that was gone for the last week came back last night. How odd. I better watch my thoughts more carefully. Good luck with your surgery Tim. EM

Oh the twitches! I had a twitch in my left index finger that lasted 2 weeks and before that it was some strange twitch in my abdomen. I chaulk it up to not having the proper balance of electrolytes in my system. But I can't say for sure what finally makes them go away. I use the shotgun approach and try extra magnesium, calcium and potasium (lots of bannanas and orange juice.) Good luck! EM

Hugs from across the oceans to you dear. It is heart breaking when we are in a downward spiral. I know that sense of unpredictability as we search for what will help and nothing seems to work. We try things that "use" to work in the past and they don't seem to help now. It is very frustrating, terribly sad and quite frightening all rolled into one. Aside from all the good advise about checking with your doctor I would add that these are the quiet times when we have to listen to our own bodies wisdom. Eat when you can and don't beat yourself up when you just feel like you can't, lie down if your body calls for this -- even though you have 100 things to do and you feel so disfunctional on your back. Give yourself time, it does get better again. It is the groundlessness of this moment, not knowing when we will feel like ourselves again, that makes it so hard. So break the moment down into a tiny little piece ... find a comfy pillow, take a slow deep breath and just try to be with what is ... instead of what we want it to be. Oh, and most important ... PLEASE remind ME of this same thing the next time I can't rise to the occasion. I forget it myself all the time. Good thoughts your way, EM

Things like organic produce and speciality items can stretch the bankbook, but making things from scratch may help. I bake breads or more often flatcakes on the weekends and use them as sandwich bread during the week. I am fortunate that where I live many stores are beginning to carry the wheat alternative flours like oat flour and almond meal. But if need by you can make them yourself with a good food mill. There are also sites on the web that you can buy in bulk the ones that I have ordered from include: http://www.edenfoods.com/flash/index_flash.html http://authenticfoods.com/ http://www.purityfoods.com/ Instead of some of the prepared frozen food (like the boca riblets, MorningStar sausages which we love) you can begin to make some of these from scratch using textured vegetable protien, or bean patties like I have on my site. It takes quiet a bit of testing (and patience from everyone elese in the house!) but after trial and lots of error I came up with foods that are quick, easy and won't brake the bank. The food testing lab my doctor used was immunolabs.com and my insurance reimbursed me for all the work I had done. But I think many standard labs are beginning to these tests as well. Good luck to you on your new food adventure. EM

I think I read something about omega 3's improving memory. I introduced flax seed oil into my diet recently and I must say, I feel much better. But you can use fish oil or other forms of omega 3 as well. Dr. Weil's web site has a cool page on memory loss: http://www.drweil.com/app/cda/drw_cda.html...ns-articleId=14 Good thoughts (no pun intended:-) EM

Low carbs and no animal protien? No problem. I was a happy vegetarian for years, but when I had my food sensitivity test I become a relluctant wheat-free vegan. I consultant a nutritionist who told me it was no problem. For instance Lentils have more protien that steak (ahh, I still miss steak:-). And lentils are quick to cook and need no pre-soaking. Other beans/legumes we rotate in the house include split peas, garbonzo beans, pinto beans, and of course there are zillions of soy products on the market now. There are also some veggies that are relatively high in protein such as broccoli and avacado. And there is a whole new world (or actually old world) of grains like amaranth that is high in protien and is a complete amino acid. When I do baking I use things like garbanzo bean flour or almond meal in place of wheat flour. I have lots of free recipes on my web site: http://www.coolkarma.com/Foods/index.html Bon appetite. EM

I'm still trying to find my immune system! I have chronic epstein barr and it also seems to make me very fragile when it comes to building myself back up. Sometimes I try echinacia, though I can't say for sure that helps or not. What I do like is ZICAM (over the counter zinc based gel.) It goes in the base of the nostril (you don't inhale it) and studies show that it kills the cold virus. So if I am around lots of sneezing, wheezing, coughing people I use some at night before I go to bed. I figure if my immune system isn't up to snuff, I'll try and tackle the germs before they set up shop. Wonderful to hear about you being able to walk again. I also noticed a dramatic improvement a few years back with diet modifications. I don't do a low carb diet but I am pretty much wheat free. (I have spelt about once a week.) I also cut out sugar and most sweets altogether. As long as I rotate my carbs (had millet and garbonzo bean flour pancakes this morning!) then I seem to do much better. Takes a lot of creativity, plus terrific kids and husband to tolerate all the new foods. But they say having Mom feel better is priceless. Good thoughts, EM

I was diagnosed with POTS last month. But like many this is probably something I have had for many years. When I was in my early 20's the doctors noticed that I had "tachycardia on mild excertion." They probably didn't realize how mild -- like standing period. They also diagnosed Hashimoto at that time (autoimmune thyroid disease.) So they chalked my heart rate up to thyroid disorder. Over the next 20 years I had periods of time (2-4 months) when I couldn't stand at all. Hospital test after hospital test. No one knew what to do. They all said probably viral. Each time I "recovered" and I have remained at work full time (with probably 3 or 4 periods of short term disability when I could not work at all.) About 6 years ago I had another "episode" and become very ill -- again, couldn't stand up etc. This time (new doctors) they decided I had Epstein Barr Virus. I did have a tilt table test done back then and they said I had "orthostatic hypotension". But no one said anything more about it. I just figured I was wiped out all the time because of Chronic Fatigue Syndrome. This past August I had my most recent replapse. My doctor had tried everything he knew and we both chaulked it up to Chronic Fatigue Syndrome and figured I'd either get better again ... or not. Who knew. It wasn't until finding this board last month from an article I had read about CFS and POTS that I began looking closely at my symptoms and my history. A few specialists later and yet another tilt table test the doctors decided I have POTS. Looking back I wonder if there were things I could have done ... coulda, woulda shoulda. No point in looking back. Just thankful to have found this site. Good thoughts, EM

Happy Birthday and Welcome!! I don't know why it still amazes me at the manners and disinformation presented by some doctors. Sometimes the higher you go up the "specialist" scale the more you run into Father-knows-best one-size-fits-all mentalities. I had a doctor tell me once that if I didn't take Drug X that I would have an attack behind the wheel and crash my car in a huge ball of flames. (OK, he left out the huge ball of flames, but I was terrified .... until I got a second opinion.) There are certainly those of us who drive ... and times when some of us can't drive. But most of the time ... we know when those times are. Being diagnosed at 21 can be a blessing ... you don't need to spend the next 20 years questioning your sanity. And you don't need to spend all your life/time painting shells for your hermit crabs. Though that can be fun. You'll find that you have good times (days, weeks or hours) and more challenging periods every now and then. You'll begin to write some of these down and learn to pace yourself and find out what works for you and what doesn't seem to help at this time. Good luck finding a team of health care professionals who you can talk with. Ones that will let you bring in a stack of pages you printed off from the Internet and who actually listen to you as you work with them to develop a plan that is personalized to your unique needs. Know what you want and don't stop until you find something that works for you. Good thoughts, EM

Hi Debbie! I looked at your site the other day after Michelle's link. It is wonderful. So colorful with good stories to share with kids. One quick suggestion....when I read the section on "Why is it I haven't heard of POTS...." I was a bit concerned about the Cancer example. While it is perfectly true and valid ... I think my daughter might be frightened to read about POTS and Cancer in the same sentence. Maybe caveties, or chickpox, or cold sores! Thank you very much for spreading the word especially with these very young pioneers. Good thoughts, EM

It is a hard call ... walking up the stairs wipes me out completely yet taking the elevator makes me feel very off balance like you described. I just had a meeting this morning and noticed that same kind of jello floor feeling as I stepped off. I was so fortunate that it was a small work group and I was able to push up another chair to put my feet up on in the board room. They even had arranged for a teleconference for me if it was going to be one of my "bad days" and I needed to phone-it-in. Thanks for the elevator post. It will be interesting to track what others experience. EM

Chronic Illness 101 There is no control. Getting use to this reality is probably the hardest thing we have to face. If the thought is too hard for you to bear right now ... that's OK. I can't face up to the fact most days myself. Fact is most folks go through their lives with the illusion of ground under their feet. They *feel* in control and most of their experiences help to bolster the fantasy. It's not until we get swept off our feet, like we did in the case of POTS, that we begin to get a real sense of the groundlessness and impermeance that we all are facing. Is there hope ... sure we can have hope. But when we focus on the future we may set ourselves up for more pain and suffering. Instead of looking at the "big" picture, it may help to narrow the scope and just focus on the "now". Right here, right now, at this tiny moment. POTS can be our gateway to really finding out what is important ... and what we can let go. I read a wonderful book recently by Eckhart Tolle (afterall what else can we do while we are lying down waiting:-) it was the Power of NOW. In it he mentioned that "illness" did not exist in the NOW ... that it had to have a past (I've been sick for 5 years) or a future (what am I going to do at the meeting tomorrow) but in can not exist in the NOW. Pain may exist in the NOW, disability ... but not illness. I really liked that and I try to remind myself of it when I start to go into my mind-made worries. Don't worry about sounding like a "downer" here. This is a good place, with a wide range of good people who are living with a wide range of abilities. It is comforting. Welcome. Good thoughts your way, EM

Wow the sweat test sounds intriguing. I really like tearose's explanation and that it actually led to help in her treatment. I don't suspect they do this anywhere else but Mayo. I have had food sensitivity testing done. I think my doctor used immunolabs.com We were able to see that I had developed "allergies" to most everything I was eating. It's been two years+ now since the tests (and further tests for systemic candida) and I now use a "rotation" diet with mostly normal foods. That is to say ... after being wheat free, cheese free, egg freee etc. for over a year I can now have eggs, 1 day a week, cheese on another day, I have wheat (actually Spelt) once a week etc. It takes for more planning (especially since I am also a vegetarian and these are my staples) but it does help and I know when I have over done something. Good luck! Let us know how the swimsuit competition goes. EM

Congratulations on the sucess of your tilt table test. It's good to focus on less symptoms as we continue our healing journey. Two things came to mind as I read you post so I'll pass them along, you can take both with a grain of salt and if something strikes you as interesting you can look into them further: I have been doing quiet a bit of mind/body re-programming and there is something called EMDR Eye Movement Desensitization & Reprocessing and it may be able to help us not go down certain neural paths that we have grown accustomed to traveling. I first read about it on the following site: http://www.traumahealing.com/index.html but there are lots of sites that have therapist links: http://www.emdria.org/ and it may be covered by your insurance. (Always wishful thinking.) And while you didn't mention panic or anxiety in your post, I know that the kind of throat spasm you described is very common among those of us with panic disorder. Perhaps the treatment may be the same as well. One of the web sites and programs I like is healingpanic.com. The web site has lots of free stuff and information about cutting down on Ativan etc. and how it is all connected. As I said, these two things just came to mind -- they might not be relevant at all. Good thoughts, EM

So when the doctor says "Take a deep breath" ... "And again" .... "Once more ..." I'd rather have blood drawn than take that third deep breath. Sometimes even the second one makes me feel off center. I consider myself a "good breather" been doing it all my life .... but I get quiet dizzy and/or uncomfortable if I take very deep breaths ... unless they are REALLY REALLY SLOW. I also notice that I have a tendancy to hold my breath (not a good thing) when my body is uncomfortable. Hard habit to break, but I know it has to make the POTS symptoms worse. Breathing rate and Heart Rate seem to be coorelated ... anyone else notice changes or suggestions? Thanks, EM

Words simply seem insufficient ... ((((((((((((hugs your way)))))))))))))))))) Good luck and good thoughts your way. EM