EarthMother

Thanks MKoven, I'll have to read the label on the cough meds my kids where taking. And thanks for the reminder about Zinc Diz. I use to have those around ... I'll have to check. I got hungry just looking at that list all4fam! I actually made some spinach broth last night. I'll have to heat that up and give it a try. Then maybe an apple ... Some warm milk with turmeric .... To heck with the cough -- bring on the food!

I love my chair. I love my chair! I love my chair!! That's my wheelchair happy dance song My insurance granted me a chair just a few weeks back (maybe two months? I forget) and while it has not instantly opened my world back up (i.e. I'm not going grocery shopping yet) I have been able to get to the park with my husband a few times as well as around the block in my neighborhood which I hadn't done in probably a years time. For me it is wonderful to be able to separate what symptoms stem from direct OI and which are just mental noise. It does seem a little strange to have my husband set up the chair and I get out of the car and WALK OVER TO IT and then sit down again. But I really don't care at all about what anyone thinks. It just feels so darn GOOD to be outside in the sun and not feel like my heart is going a mile a minute! When the chair first arrived, my little dog jumped into my lap instantly as if she had done it a thousand times. Now when I go out she is my mascot. On my facebook album where I have this picture posted it reads: "Learning how to push myself. I am testing the edge of my physical ability and leaning over the ledge as I watch my mental stories. I am learning how to roll along toward new landscapes and coast until I find myself on the other side of my limitations." Its all a matter of how you look at it, eh? Enjoy all that which is in this moment all that is. ~EM

I finally succumbed and picked up the bug that my kids brought home last month. Its been years since I have taken any kind of cough medicine, usually a Ricola lozen works just fine. And it still does during the day somewhat but less well if I am lying down. Are there any cough meds that don't interfere with POTS or ones that you've tried with success -- or I guess ones that are on your "not taking that again" list? Thanks for thinking about this with me. ~EM

Interesting about the recumbant bike ... my experience is the same. If I go at a SNAILS pace I can go about 10 minutes. It is so frustrating that I tend not to do it at all ... however I need to remind myself that ANY upright (ok, reclined) movement is better than nothing. ~EM

My heart goes out to you. It has to be so hard to watch your child suffer so. You will no doubt get a lot of helpful suggestions from the POTS experts here ... to this I would only add something incidental that I have learned on my own healing journey.... Sometimes we try everything and on those rare occasions we find something that works. However, as many of us here know ... sometimes nothing works. And more surprising still! Is that our bodies STILL find a way back to a better place. "Loosing the will to fight" ... can sometimes free up the energy we need to let go and let the divine wisdom of our body heal itself as it was designed to do. Last night I heard a song by Steven Walters ... The lyrics moved me to tears. Sometimes all we can do is embrace someone who is in pain. ONE MORE TIME I won?t try to take your pain away I know that?s your ticket home But the question still remains What to do with this heart of stone Might not be today Might not be tomorrow But you know that sun is gonna shine And this heart?s gonna open One more time I?ll just hold you for a while And you can let yourself feel it all If you just keep letting go There?ll be no one left to fall I guess you can?t see it right now ?Cause the pain is just making you blind But this heart?s gonna open One more time Oh, this sweetness when you tremble It?s not really something words can say But I know that feeling That?s just what happens When all that is not love When all that is not love When all that is not love Is getting burned away Cry, cry my baby These tears are the very first sign That this heart?s gonna open One more time

Wow! That is an amazing adventure. Thank you so much for sharing the details. I could not imagine being able to go through all of that back to back ... heck, I couldn't imagine going through any of it and making it out in once piece. Way to go for you! You are a true POTS Pioneer. Keep us posted on what the findings reveal! ~EM

How is it going today? I know those "skipper beats" as my cardiologist calls them can be really frightening. It is good to get reassured from one of our specialists. I remember when I had a Holter done last October (because I was complaining about them and my Cardiologst wanted to reassure me they were benign) he said "I'll order a Holter test to reassure you these are fine, but I'm telling you now that unless you are having 10,000 skipper beats a day I won't do anything about them." That's about 8 each minute by my math. I was having a few a minute, but no where near eight and not 24 hours a day. For me they seem to come in waves ... I'll be fine for a few weeks and then BAM! (More like B-B-BAM, BAM, BAM, BAM BBBBB-BAM) They get really annoying (more like scared out of my wits) and they stay for a few days or weeks (sometimes months) and then seem to vanish as mysteriously as they came. Good luck getting some comforting answers. ~EM

I've been looking for that velcro ab belt I bought a couple years ago ... and can't seem to find the same one. I tend to by discount items so my sense is I picked it up at Dr. Leonards, but they don't seem to have the same one available now. However they had this cute magnetic ab belt that looked interesting ... I of course have no idea how it would fair. Slimmer Belt with Magnets

Yes, I found the same link ... Resting Heart Rate ... Let me know if you have any trouble and I'll send you the PDF. Here are some notes from professional reviews/comments on the article. I should think this would be good for us ... since we are already in a target group of people who already have had cardio workups (not to mention countless trips to the ER ) You can read other "rapid responses" at this link: Responses to Study ... There's a lot of speculation out there that hormones play a factor in this for post-menapausal women and even thyroid disease is mentioned. However I think POTS presents a unique group of circumstances ... and I'm not sure that our "resting" heart rate really means the same thing as other non-orthostatically-challenged folks. Indeed if everyone is in agreement that pulse is a good "low tech" indicator ... maybe we'll see a drop in heart rate monitors! ~EM

I remember that pattern well and lived in it for years off and on. I still get that way in a very bad crash, but lately I do notice as many morning lows and unfortunately none of the late evenings respites. Getting the reactive hypoglycemia I think was an important factor in the shift for me. I use to wake with low blood sugar (in the 60's and even lower on occasion) so I changed my diet dramatically to include a balance of protein, complex carb and fat at every meal. I also make sure I eat every 2-3 hours. It took a good six months on this modified routine to eliminate my morning blood sugar drops and with it seemed to eliminate the other morning symptoms as well. And while my blood sugar now seems to be stable, my POTS is still through the roof and the resulting fatigue and pain last all day long with little fluctuation. However, who knows, maybe it takes time even after the blood sugar seems stable to get some relief from the rest of the POTS syndrome. One step at a time. And for me getting the blood sugar stable was the first step. Good lucking finding something that works for you .... and welcome to DINET! ~EM

Having some objective criteria could be a plus for disability insurance hurdles. However, unless I missed it ... this new "lab" does not appear to be backed by any MDs. All of the "doctors" listed are PhD.s. It would be good to have something like this picked up by Mayo or Vandy. ~EM

I like my Prevention HR-180PV/MF-180PV Chest Belt-Free Heart Rate Monitor that I picked up at Amazon. No belt. I actually designed a fingerless glove that I attach it to and also one velcro band that I wear on my wrist only for when I am propelling the wheelchair. I think this new technology of using this kind of light sensor will be available on more and more heart monitors in the future. I like this one, and find it fairly accurate regardless of my activity. But others like the "LifeSpan Fitness Heart Rate Monitor Ring" also sold at Amazon, doesn't give good readings at all on my thin fingers. My husband tested it though and it was fine on him ... must be the fit of the ring. Good luck finding something that works for what you want.

I put turmeric in aloe vera juice instead of the tea today. I wouldn't recommend it! I'll try tea again tomorrow and see about the milk to mellow it out as well. That BURNED my mouth today ... and ya would have thought the aloe would have tempered it.

I also need to buy everything online at the moment, let me try and find what I purchased last year. It is a very wide stretchy band with velcro -- no measuring required! ;-) I too can not tolerate anything tight on my waist so I wear only high compression thigh highs. I use the ab compression lately if I want to do a Zazen sit in full lotus. It helps me not blood pool so badly that my pulse goes thru the roof ... less than optimal for meditation. ;-) The velcro wrap is easy for me to put on and off as desired. I wear it on the outside of my clothes ... and since I'm not dressing to impress it works fine for what I need. I'll search around for where I got it and let you know.

Here's where I'd love your input & advice: ? How do i begin to find a PCP that knows what to do w/ POTS? Mine is just clueless & makes me feel like a hypochondriac. Welcome Diz. I hope you find answers as well as support from this amazing group of POTS pioneers! My PCP has never treated a POTS patient, but he is an excellent advocate. Believes me when I explain my symptoms, is willing to hear about what I have learned in my own research, and hooks me up with the best specialists in his medical group as need be. I think finding a PCP who listens and believes in you is the most important piece of the puzzle. I would recommend interviewing several. ??Electrolytes: a nutritionist has recommended I skip all the electrolyte drinks (she thinks they're largely marketing ploys) and take trace minerals. You buy it as a liquid and put into whatever you're drinking throughout the day. Has anyone tried this? The trace mineral drops I have seen are a waste of time with inadequate amounts of non-essentails that do nothing for POTS. Most folks here who do the electrolyte drinks do so for hydration and volume of liquids as well as potassium/salt. But for me after a couple years on Gatorade I became ultra sensative to sugar (the stuff is loaded with it) ... so now I need to get by with water and salt. ? Has anyone tried flower essences - like Bach's? I did a lot of Bach last year as I started to go into my most recent crash. I tried a variety like Rock Rose, Mimulus, Cherry something-or-other and Vervain (oh, wait the Vervain was for my DOG! LOL) And I can't say any of them worked any better or worse than Rescue Remedy. I rather think it is holding the brandy under my tongue that does it more than anything else! ? Does it take you longer to get over being sick (even a little cold) than most? Hard to say ... I feel like crap so much of the time I'd be hard pressed to know when one "bug" stopped and another started. Though in general in my current state, I'd be inclined to say No. I don't think it takes me longer and I certainly don't seem to pick up all the bugs that my kids bring home from school like I did years ago. ? Are digestive issues common? How do you deal w/ them? I've had IBS since age 18 but have horrible side effects from the meds, so try to manage it on my own. DIET. Diet continues to be an important part of my overall wellness strategy. I had IBS for 10 years starting in the mid 80's. Non-sollulable wheat fiber and aloe vera papaya juice for six months did more to curb that than any of the heavy duty meds I had tried back then. During the years I have treated food sensitivites through a rotation diet, systemic candida with strict diet changes, as well as a recent bout of reactive hypoglycemia which again required strict dietary adjustments. Good luck finding the right combination that helps you, and know that what you do find may need to be revisited and adjusted over time. ? Other than over-doing the activities, what are common triggers? Are there foods that are good to avoid w/ this regard? Food is still a trigger for me and I need to be mindful at the moment of things like aged cheese, avacado as well as foods high in free glutamates. I also tend to flair after a full meal (post pranial hypotension I assume, or else my cardio mentioned something about potassium getting pushed out of the cells after eating -- whatever it is I do better on smaller meals throughout the day.) Temperature is another trigger for me. I have a very narrow window of climate control that my body can handle at the moment. ? My sleep is always off kilter, which I read is common. 2 Simply Sleep & hot milk usually works, but are there natural methods that you all find helpful? I do not have the same sleep issues that many here have on the boards. But I do wake frequently in the night. In order to adapt to this wake/sleep interrupted pattern, I make sure to go to sleep by 9 (10 at the latest). That way if I am up at 6 a.m. I have had sufficient down time. For me there is a short window of opportunity when my body can fall asleep...if I stay up too late my sleep is more fitful and I do not feel rested in the morning regardless of how many hours I "slept". Depak Chopra once said that the number of hours one gets before midnight are the most restorative in terms of healing. This seems to be the case for me. Good luck on your own healing journey.

I also can not tolerate any stimulants but have not found the "tea" I am making using the turmeric as spice to cause any jitters. ~EM

I had severe trigeminal pain last spring. You describe it well, as the most intense nerve pain ever experienced. I am afraid I never found anything that helped except ice. I had ice packs on my face so often I was sure i was going to get frost bite! Eventually as some of my other POTS symptoms began to shift around (and the shaking lessened, which was probably causing teeth chattering as well as bracing against the pain) the facial pain subsided as mysteriously as it came on. Good luck finding some relief. My thoughts are with you. ~EM

I don't like the chest strap ... so I have opted for the Prevention HR-180PV/MF-180PV Chest Belt-Free Heart Rate Monitor from Amazon. The price varies greatly but sometimes you can get this around $40. I probably buy from http://www.brightlifedirect.com and http://www.ameswalker.com depending on who has a deal. I buy the thigh highs and have to always make sure I get them with the grips at top so I don't have to wear a stocking belt. I have tried several of the "cheaper" brands, but unfortunately they all seem scratchy to me except the JOBTS which tend to be pricey. Good luck finding things that help.

With best intentions ... I did a heaping teaspoon. But confess that I only ended up drinking half of the cup. I think I use to add honey to it in the old days (but since I don't do "sugar"any more, I may try a few spashes of whole milk to the brew.) I would have to suspect that the variety and concentration in these spices has to vary greatly. I think Dr. Weil sells a special turmeric tea. I may look into that since I know he's done his homework on turmeric. Though my inclination is to stay cheap for the time being and use the bulk turmeric I have on hand. We shall see!

A quick search at pubmed shows the following abstracts from research in this area: Curcumin and autoimmune disease Potential therapeutic effects of curcumin, the anti-inflammatory agent, against neurodegenerative, cardiovascular, pulmonary, metabolic, autoimmune and neoplastic diseases. Curcumin: the Indian solid gold. I don't remember having any ill (i.e. allergic) effects from the turmeric I use to use years ago. I think I'll have a cup of "tea" in the morning and give it a go again! Thanks for the reminder! ~EM

I use to drink Tumeric tea years ago (that's right poured a heaping spoonful of the stuff into my hot water) it tasted awful but I did feel better doing it. Can't remember why I stopped. Dr. Weil has been touting Tumeric for years as an anti-inflamitory.

Oh sweetheart that sounds simply horrid. I can't imagine anyone would be able to relax sufficiently enough to have a tube shoved down their throat. Please feel proud of yourself that you even tried! I am quite certain, I would have not made it into the procedure room! Rest now. ~EM

That's SO FUNNY! I had pocket rockets in a round of Poker Palace on Facebook last week and it pretty much did me in!! And that's not even real money!!! At times I can't play at all because my ANS is way too hair trigger sensitive. So glad to know I'm not the only one.

Years back I did some food sensitivity testing (IgE? can't recall the blood work) with my primary physician. The blood work came back that I was allergic to everything I was eating. Which was remarkable to me, I couldn't figure out out of the hundreds of foods they tested, how it knew the dozen or so that was in my fridge at that time. A few months later we heard about testing for Systemic Candida and my numbers were off the charts (again, I can't recall the name of the tests we ran back then.) So I began a candida regiment that included some initial drugs to knock out what was present and the a very strict anti-candida diet for the next 9 months or so. When I was retested my levels had completely returned to normal. During the first few months of the diet, I felt considerably WORSE than before, but by the end of the year I had regained some energy and stamina and was convinced at that time it was due to the anti-candida diet. Unfortunately as more time passed and my next bad POTS relapse came around ... we tested for systemic candida once again. This time I had all the same symptoms ... but my blood values were perfectly normal (for candida). So I needed to keep looking for other avenues and alternative healing opportunities. In my case, over the many years since, I still maintain a sugar minimal diet. I do not eat refined or concentrated sugars of any kind. I find for me, that when my diet is whole foods (with a rotation around dairy, soy and wheat) that I do better than if I am eating haphazardly. Good luck finding something that works for you. ~EM

When I have a POTS flaire I will often experience "coat-hanger" pain. An intense pain along my upper-back, shoulders and back of my neck. It amazes me how sudden and severe the pain is. But once the flaire passes it completely goes away.