EarthMother

Giggles Miriam. I DO remember that show! Best I can recall ... POTS is defined as an increase in standing pulse of 30 BPM or more (or over 120 bpm) within ten minutes of being upright. Not all orthostatic hypotension people have POTS. Sometimes the BP drops without any heart rate increase ... typically followed by a faint. POTS can have a BP increase or decrease on tilt -- or stay roughly the same. BP is not part of the criteria per se for POTS. fire_lupine, make sure you get COPIES OF THE TTT!!! You'll need the medical chart notes with the actual values and times on supine and tilt for BP and pulse rate ... and any other bodily fluid or function they collected! Don't settle for the Doctor's notes and his subjective assessment. You want the objective data for your own records. You will be able to take the positive TTT records with you as you interview NEW physicians who either know something about dysautonomia ... or who are willing to listen and help you through referals or other appropriate steps. Goodnews is you had a positive TTT, you now know why you feel like you do! Now its time to find the RIGHT Doctor to help you. Good luck!

Things that have worked for me .... Wheat bran (not wheat germ) 2-3 TBL in yogurt or cereal every day Aloevera Papaya Juice 2 ounces EVERY MEAL 2 TBL Vegetable Glycerin in water ... helps empty the stomach faster Good luck finding something that works for you. ~EM

I hadn't ever seen those examples as hypermobility before. I've always been able to touch my foot to my head with ease ... however with legs straight I'd be hard pressed to touch my fingertips to my toes! Like my hip socket is very mobile (easy for me to sit full lotus) but my hamstrings are outragiously tight. What does it mean for "knees to bend forward" ... I can't picture that in my mind. The images I saw on the web for hypermobility had fingers bending WAY back, not just a bit more than normal. Did your Doc suggest anything new by way of treatment, if he suspected hypermobility?

I agree entirely with your premise as I consider myself an expert in Hashi ... having been treating this for 15 years . I'll also add that if your antibodies are high, you may want to ignore your TSH altogether and boost synthroid or armour until the autoimmune attack is over. I've long since given up on endos who get this. But my PCP does and we've been treating it by how I feel for 10 years. BTW, I saw 2 endos last year for complete workups and they still write off my Hashi as a non-issue and affirmed its fine for me to continue treating this with my PCP. Now for the rain on everyone's parade segment of my soap box speech .... Despite doing everything 'right', checking antibodies, always looking at the full compliment of thyroid blood panels AND titering doses by how I FEEL. I can't say it has made a dent in the unpredictable and devastating POTS crashes. And yes in my case, I do believe the two are related. When I began surging in April, I could feel a node on the right side of my thyroid gland become tender. I knew I was in another Hashi blowout. But other than tweaking doses (which my doc and I do) there isn't any quick fix -- it takes 6 weeks to adjust to a new thyroid dose -- a HASHI surge. And despite years of suppressing my own production via taking levoxyl or synthroid at the 1-2 TSH range ... I've not been able to stabalize my antibodies for the long haul. So! I test every 3-4 months during these hard times, tweak and take advil for inflamation associated with the antibody attack ... and just wait it out. Not fun. Oh and if you want to get real fringe on the topic look up Hashimoto Encephilitis! That's a good controversy. But think about it .... if we know we have antibodies that our body is producing to attack our thyroid ... how far fetche is it to believe its possible for these same antibodies to attack our ANS. Ok, rant over. Yes, its important to get this stuff screened. To find a Doctor to treat on how you feel .... But that even then, there's no easy fix from what I see for the underlying autoimmune disorder. ~EM

I've done Kava off and on for years. Again, I have never mixed it with other meds tho I do know some people who do. Its a tricky one because its not standardized. I like the brand I use (liquid, easy to titrate my dose) and others swear by their brand. Tea never had enough in it for me to notice the effect. I tried Kava a few times in this most recent crash in early April. And it was fair in reducing sympo-overexcitation, but I was also getting a kicker of a parasympathetic rebound the next day. So I've tucked this away in my cabinet ... for now. Tell you what I am doing that seems to help (but who knows, long term) is Motherwort. Again, I have a liquid that I can easily dose by the eyedropper. Its good for "earthquake hot flashes" the book by Susan Weed said. So I picked some up. I read a bit more about it and it is also a natural relaxant. I've not noticed any decrease in BP. But so far (fingers crossed) its been good to use when my body starts to surge. (ie my blood pressure tends to drop out after I use the bathroom, and this is often a trigger for a POTS flaire for me. The motherwort has helped reduce the duration and intensity.) But it could well just be my body is rebalancing on its own. There's no telling from an N=1. I also started taking Vitamin C a couple weeks ago on Ramakentesh's thoughts that this should be a precursor to the NO. I have increased natural food sources -- small doses throught the day. As well as breaking up a chewable tablet into tiny pieces and taking that 3-4 times in one day. My thought being to keep a steady dose IN my body at all times rather than high spikes that I will simply pee away. As Firewatcher said herbals are meds. And kava much more so than say chamomile tea! Anyone considering must discuss with their health care team. ~EM

This is a twisted path indeed that we tread. It is so good to hear you are ambulatory and in less pain than before. And no you are not being overly cautious. Have everyone take lots of photos of the graduation ... send them to me, and I'll photoshop you into them! In a few years time no one will remember that you weren't there. Yes, I'm THAT GOOD with photoshop ;-) Giggles your way, ~EM

The "heart breath" -- which is the ideal respiration rate for relaxation that is in harmony with your hearts natural rhythm is FIVE breaths per minute. If I EVER tried to breath 12-24 breaths in a minute I'd pass out from hyperventilation!! For me, even 5 breaths a minute tends to feel fast (that's an inhale to six seconds and an exhale to six seconds.) But I tend to breath hold a bit anyway. In my deep states of meditation I breathe only about 3. I think the folks who breathe in the fatster 12+ range tend to be upper chest breathers. While those of us who breath less per minute tend to take fuller breaths through our abdomens. But that's just my two cents. Which doesn't buy much in today's economic downturn. ~EM

busy + social + life Wow. How wonderful. I'd take any two and be happy. Oh who am I kidding, I'd take any ONE and be tickled pink!! Congratulations. It gives us all something to aspire to. ~EM

Dear one, I have no idea why the most amazing breakthroughs can lead us into breakdown. But they often do. However it is also true that an even bigger breakthrough is what takes us out once again. It is coming, we both have seen that. Know that I am touching your hand, gently, lightly ... and whispering in your ear. Until we talk again. ~EM

I am actually looking for something with a sedating effect to help ride out the storm when I am in a bad flare. I don't mean the day to day flares of POTS but the really bad surges that can seem to come out of no where and stay for hours on end before abating. It doesn't happen often -- giving thanks -- but when I entered this recent crash in early April, it was happening every couple of days. The surges would last from 30 minutes (I can tolerate) to 5 hours which gets exhausting very quickly. Basically, in a pinch, I want to know I have something on hand that may be able to help soften the blow of these really bad attacks. Not sure I'll ever take it, or even be able to tolerate it. But having tried the benzos and beta-blockers to no avail ... I'm moving on to Plan B (or is that C? M? Q? Y? ... gosh I've lost count!) Thanks all for the input. ~EM

I recall seeing some people have this anti-histimine in their signature, but can't recall who at the moment. Last year when I was in a really bad POTS crash and was having the LONG hyperadrenic episodes I tried various benzos but they didn't work well with my system. However the placebo effect of at least having them on hand gave me the illussion there w s something I could take if it was going into multiple hours of high agitation POTS. Atarax is a sedating antihistime and since some of what is flaring now for me includes ear pressure, I thought it might provide some relief by way of slowing down things a bit. Any thoughts? Anyone else have experience with it? Thx, ~EM

Is this as good as it gets? No, in my experience what you describe is like intermission between Act I and Act II of a mystery play. We never know what might happen in Act II. There could be a spontaneous healing, a miracle cure or a sudden relapse into the pit of POTS. But while we are in the 'holding pattern' its as if the action stops for a while. We may go to the lobby and poke around a bit, but until the lights blink and the show starts again there may be little else to do in the moment. However it is also my experience that everything does and will change once again. We don't spend our lives loitering in the lobby. So hold on tight ... the theater lights will blink any time now. ~EM

I had kept the collection jug and paperwork for months waiting for a true flushing incident -- which I had in abundance last year but that have diminished again over time. On April 7th, I swiftly shifted into for lack of a better description a hyperadrenic stage I watched to see if there was any facial flushing along with the long flaires. There did not seem to be. But the intense pressure in my ears during the flair along with the other high agitation symptoms that seem to go hand in hand with my bad POTS episodes seemed to warrant at least a peak at the mast cell levels. So following one bad morning flair that had come on the heels of a facial burning episode I did the collection. I don't do any H1 or H2, however despite my negative urine test I did ask my Doctor if I could try some atarax (hydroxyzine) to see if it might dampen the over stimulated nervous system when it goes into one of the long flairs. I had tried various benzos last year and they only seemed to compound the problem. You are right though, a single negative test is just that. If the full on flushing comes back I may pursue further.

Hey Blue, I have a hairless dog (actually 2) -- Xolo is the name of the breed; Mexican Hairless. Also a hairless cat. They don't work for everyone but they work great for my husband and I who both have problem with pets otherwise. Just a thought. My dog are both rescue animals -- I joke that they RESCUE ME every day. But there's a pretty big Xolo rescue here in the US and Canada. Good luck finding something to curl up beside. ;-)

I tend to have high acute titers for EBV and then always the chronic titers as well. I spoke with my Dr. today about this in fact, but the problem is ... we really don't know what to do any differently. So yeah, sometimes I go through a chronic episode of EBV or my Hashimoto gets really active. Still nothing to do, except wait it out.

We use very few chemicals in our home for a variety of reasons. My teens have the have the hardest time with our fragrance free policy since they all like the perfume lotions, spritzes, hair stuff and scented deodorants. In some cases they put it in their backpacks and use them at school or whenever they are out of the house. So what do we do? Fleas? We took out all of the carpet in our house and replaced it with laminate over the course of several years as we could afford it. We also have hairless dogs and a hairless cat. No place for the fleas to hang on! And we've not had a problem since. Ants? These are always a challenge when it rains or the weather is hot. I'm pretty sure our house is built ontop of an ant metropolitan city! We try and use natural deterants like peppermint mint oil or corn starch. Sometimes ant baits if we must and only as a last resort would we we spray an over the counter chemical. Spiders and Snakes? As for other creepy crawlies, we tend to pick them up (paper and inverted cup) and place them in the out-of-door-relocation-program. Accept once we did call the rescue squad to remove a rattle snake from our back patio! Weeds? We don't use pesticides or chemical based herbicides in our back yard. For weeds we spray vinegar, it will kill the plant in a matter of days. If you pour vinegar between cracks in cement or pavers it can keep weeds at bay for quite some time. I hear Muphy's Oil soap is a good spray for outdoor plants. Frankly we don't have very green thumbs and tend to plant for the bunnies and bugs to enjoy! http://www.coolkarma.com/dharma/?p=239 In general I am less senitive to what exterminators spray outside than inside my home. If I had to use professional help I would probably start there. Good luck finding something that works for you.

"I was down to 12.5mg (from 150mg) and stopped it entirely this past Tuesday." I might wonder why you stopped entirely last Tuesday? A slow crawl of a taper sometimes feels best for our dysfunctional autonomic systems (as well as symptoms). Perhaps you could discuss with your Doctor about taking 12.5 every other day for a couple of weeks, then shaving pills if need be to 6 etc. Its not uncommon for folks coming off benzos to do just that, effexor is a whole different class of meds I know, but it might be worth a querry to your PCP. Good luck getting the answers you need to feel better.

Best I can remember, I am 46. :-) I was formally diagnosed a half dozen years back, though my medical records show things like "tachycardia on mild exersion" as early as my early 20's. Around that same time I was diagnosed with autoimmune thyroid (Hashimoto) and told by one young doctor that I could expect a lot of ups and downs ... but that menapause would be the most challenging. I do believe in my case this most recent crash in 2007 which was the proverbial straw to my camel's back (i.e. the end of my career due to illness) has a lot to do with how autoimmune disease and autonomic imbalance play havvoc with hormone changes in perimenapause.

I am in awe of your courage. My thoughts are with you that this latest adventure be wrapped up as soon as possible. ~EM

I finally got around to collect a four hour concentrated urine sample for the methylhistamine test. Folks may recall that researchers prefer the four hour concentrated collection (you collect for four hours following a flushing epidose). Reference the "Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders" by Dr. Raj for more information on the study about POTS and MCAD. Anyway, long story short my methyhistamine levels were not elevated. So its unlikely I have Mast Cell issues at play in my case of POTS. Good to know in any event. Thanks to all for the excellent information. ~EM

One of my Doctors recommended the Adrenocortex Stress Profile at Genova Diagnostics. They can ship you the vials to collect at home and FedEx back to Genova. The results are mailed to your physician.

Whoo hoo Shell! Deep bow of thanks for the best answer I've read on why this might be the case for so many of us. I for one find it very validating. I'm having the saliva test done next week that will test my cortasol levels at roughly 8am, Noon, 4pm and 10pm. Not sure it will matter much by way of what I can do ... but I did the same test 2-3 years ago and I'll be interested in comparing the two. Like your wife, my body often feels peaceful at night/evenings. Good thing too, because I can eat better at that time and make up for the calorie loss during the mornings. Please give a hug to the misses and let her know we are here for her too. ~EM

Let me preface by saying I have practiced Zen for more than a dozen years. As a serious student of loving compassion, I have worked very hard to cultivate an open heart. My meditation practice is strong and I have even authored dozens of guided meditations over the years. And still when spring comes around and I see some young thing in a cute running suit I want to slap her upside the head!! Resentful? Angry? You bet!! What I have come to understand in my insight practice is that my thoughts and emotions don't mean anything. This body-mind with all of its experiences and years of conditioned behavior simply has a lot of anger and resentful responses. No getting away from it. For me they arise naturally in the moment. The problem occurs when they develop a 'sticky' quality and I become involved in the thoughts. Sounds like to me you are able to recognize these features of your mental habits and still let your husband go out and enjoy his game. THAT is transendance at its best. For me Having It All means that I can allow all the negative crap, thoughts and emotions to arise and fall away just as I accept the wonderful feelings (short lived as they may seem at times) to also arise sponaniously and fall away. The Good, The Bad and the Agry and Resentful as it were. But hey that's just me ;-) It could well be I'm just a miserable student of Zen! LOL ~EM

I also get high titers for EBV periodically I didn't realize you could treat that. Putting HHV-6 down on my list for my next work up. ~EM

I'll chalk it up to the weather as well. We went from the 100's to the 50's and now back to the 90's today. That just wrecks havoc with even a good ANS. I've decided not to fight it and try to give in to the fatigue as best I can. I am doing less (unimaginable but true) going to bed earlier, asking for more help to fix meals and drinking extra water. I also started taking in more vitamin C. Strange thing is (not unusual for me) I feel half way normal be evening time. Which I hear is also common for a histamine cycle. Hang in there, it's bound to turn again! ~EM