EarthMother

I wasn't getting out at all before I got a manual wheelchair. I keep it in the car and it allows me to conserve my energy while being outside. Before, I would be exhausted just being upright in a store. But now I can push myself around and not feel so POTSY. I still fatigue rather quickly -- but 10 minutes in a neighborhood store now and then is more than I could ever manage if I had to do it upright on my own orthostatically-challenged legs! Hang in there. This too shall pass.

Hashimoto isn't hypothyroidism ... though it may at times present that way. It is autoimmune thyroid, where your own body is making antibodies to attack your own thyroid tissue. During an acute attack, (i.e. when your microsomal antibodies are high) you can experience periods of hyperthyroid. Taking only small doses of thyroid replacement won't stop the attcks because your body still tries to make its own hormone -- which it can do even in large quantity during a hasi flare. My approach to hashi has been to take MORE hormone artificially to allow my body to stop production. When I am taking synthetic thyroid my own body doesn't recognize the compound in the same way it does my own natural thyroid and thus my body launches fewer antibody attacks. In theory at least. If your Doc will test your antibody level as you feel an increase in symptoms, it may help you gauge the dose of med you need to shut off the over production. (Side note: lots of hashi people do great on armour, but for some it may be 'too close' to their own body's thyroid fingerprint and cause the antibodies to respond as they would to your own body's thyroid hormone.) If your antibodies are high, you may need the double dose your endo recommends to stop your own thyroid from producing. Which means yes, for a while (weeks, I am afraid) you will have some thyroid toxicity as you have too much on board. But if you don't get your replacement high enough, you could be in a long battle with ha hashi flares until slowly your own gland is covered by scar tissue and can not produce on its own. This is the point where hashi becomes 'simple hypothyroidism'. Good luck finding a balance that works for you.

Search for: post pranial hypotension. Many of us have modified our eating habits toward many 'mini-meals' throughout the day, rather than three full meals. For me, I tend to have less ability to digest without post-pranial problems in the early morning through late afternoon. Iin contrast, I can often eat a larger meal at night -- though I always lay down afterwards. Good luck making some tweaks that work better for you.

couple weeks?

That's the puzzling part for me ... I don't tend to have pain all the time, but when I have a POTS flare my shoulders and neck seize in pain. For me what I noticed helps is to have someone push down REALLY hard on the top of my shoulders. But I feel so bad about asking everyone to help me each time this flares up, so I looked on the internet to see if there was some kind of massage that I could do myself. I settled on the bodybackbuddy ... after reading some reviews and looking at a couple of videos on line. (I picked mine up at Amazon with free shipping.) The device arrived yesterday. I was impressed that it was solid, not a flimsy piece of plastic. I looked over the online manual and within a few minutes found a position that I could hit that exact spot on my shoulder to aleviate the pain when it comes up. Have no idea how this will help long term. But I like accupressure in general, and this self-help-tool lets me reach some points that I otherwise would need a helping hand.

My PCP is in network, not what you would call a holistic practitioner. I simply lucked out 10 years ago when I found him. And i've gone through hoops to try and keep health insurance that will cover him. This year Blue Cross cancelled their contract with my entire hospital and all the physicians in my network!! So seeing him is a challenge ... his medical group has offered to charge the Blue Cross patients the in-network fees even though they are currently not being reimbursed fully by the insurance company. As I said, I just lucked out. But I did so with considerable perseverance and walking away from several 'specialists' who refused to accept me as a partner in my health care planning. As I recall, when I interviewed my current pcp, I had Mary Shomon's (thyroid guru) list of questions to ask a propective physician. The important one for me was finding someone who would sat YES when I asked "Would you be willing to titrate my thryoid dose based on how I feel, rather than lab tests alone." Because my PCP is a family practioner, I think he has a better overall sense of the individual as a complex interconnected set of systems and symptoms. My experience with some specialists... is that they see you through the narrow lense of their specific specialty. And even in that, you have to fit the mould of their other patients because what worked for them must work for you too.

{I know I'm not suppose to be stepping into this men's club discussion ;-), so my apologies up front.} The issue of autoimmune and this seemingly revolving door of systems that breakdown in our body is of interest to me. I've spoken to a man recently with the same kind of 'nerve' pain you mentioned and I know other POTS women who have vulvadynia. I suspect the two are related. It seems to me that the autoimmune disease moves from different parts of the body and we see these cycles of symptoms -- NCCP, IBS, Ear-nose-throat, and various muscle or nerve involvement at various times. No answers ... of course. Just interesting that the cluster of symptoms are so similar ... guess no accident though, that vagus nerve touches all of them.

My first step in "treating my thyroid disease right" was to leave the endos and their egos behind and find a knowledgable PCP who would titrate my meds for me based on how I felt rather than rely soley on the lab values. Sometimes, in my case, when my pulse is running high, I'm dropping pounds and I feel like I am jumping out of my skin ... I actually NEED MORE thyroid meds. It sounds contradictory and you can imagine the look on my doctor's face when I asked the first time. But for me with Hashi, more thyroid hormone taken synthetically will shut off my autoimmune response and my own body's transient over production. But finding an endo who would experiment with me was impossible. Thyroid treatment is far from an exact science, as some would like us to believe. And because it takes 4-6 weeks to level up (or down) on a new dose, we need to be patient and persistent to discover what works for us. Moreover with POTS, anything can happen in 4-6 weeks, so its hard to discern all the contributing factors. Finding the right doctors who are willing to step outside the box and into the enigma of our potshole is our Best hope at getting a comprehensive treatment plan that is fluid and flexible to our changing needs. May each of us find the dream team we seek.

The ability to discern between Non Cardiac Chest Pain NCCP and a heart attack is something I had to address for decades. Once I got my gastric system in better shape, I had less "refferred" chest pain and so I don't now often get the sharp or lasting pain that I had previously. (But those skipped heart beats! That's another story!! ) Aside from my cardiologists reassurances, I would do things like note the color of my nail beds, or take my blood pressure. Also did the pain change when I moved positions? Did the pain get worse when I took a deep breath? Pains that are impacted by muscle movement or feel like they are on the surface are often non-cardiac. Collect some information on your own about non-cardiac pain and then take the list to your Doctor and say .... Hey are any of these a good way for me to distinguish on my own if I am having a cardiac or a non-cardiac event? Hopefully they can help you to find some peace of mind for your own unique body and circumstances.

I have this vague memory that basal body temperature can be used to help gauge how your meds are working. My resting pulse doesn't seem to a good indicator of how my thyroid is working (or not working). I'm hashi-thyroid and go up and down all the time. Sometimes my weight is a good indication. If I'm eating the same foods and I keep putting on the pounds, odds are my thyroid is a bit low. Good luck getting your dose tweaked. ~EM

Can't tell you how much I laughed! Oh. So good. thank you. Your SWAG got me thinking about how the scale may be misreading from the nerves in our legs overfiring, and I can now at least come up with a theoretical possibility on how one value can change while the other stays the same. So let's assume the POTS pooling is causing some kind of electrical impedence ... So when it says my % of body fat is 35 and my hydration is 55% -- BOTH numbers are off by 10-15 percentage points. In that case it would mean my "actual" body fat is much lower, and my hydration is the Sahara Dessert! Both likely. So then when I had that really unusual day where I felt more stable on my feet it could have been that my hydration (for some mysterious reason) was higher than normal and this may have contributed to less overfiring in the nerves in my legs. So now when the scale reads: 22% body fat, the number is more accurate and the 55% for the hydration (which seemingly hadn't changed) is actually reading a more accurate level of hydration than the day before. Again ... only a theory. But for the life of me (and my fried brain) I wasn't able to even come up with anything plauseable before. Thanks so much for giving this a noodle with me.

I tend to loose a lot of hair THREE MONTHS AFTER a stressor. Like a viral infection (I got chickenpox at 27 and I remember loosing a third of my hair three months after I had recovered), childbirth, divorce, or a bad POTS crash. I do have Hashi thyroid, but I can't seem to corelate the hair loss to any particular thyroid cycle. As suggested, Bioton is great. I take it anytime my hair is falling out in droves. In my case, it always grows back. As for the suggestion about frequency of 'shampooing' your hair -- there is a 'movement' of sorts of people who give up shampoo altogether. You can google "no poo movement" or no shampoo -- and you'll find a lot of articles and blogs on how and why people do this. And if it interests you, you can PM me. I've been no-poo now for over a month!! My decision wasn't linked to hair loss or scalp issues ... just when I read about the chemicals in shampoo, I thought why do I want to add this to the stuff my body is already fighting?

When I use the term "flare" I am usually referring to what is described as a hyperadrenergic flare up of the POTS. I have POTS and debilitating fatigue 24/7 -- but I don't always get those adrenaline storms. Or maybe they are thyroid storms, I have Hashimoto too. I actually don't know what they are, but they are acute and intense and when I can go a whole day without one then yes ... I call that a good day. But last Thursday and Friday were particularly "good days" in that I can't recall in more than two years now having a time when I felt I could stand for even 5 minutes and on those days I could. Seems very odd to me. That's what I was thinking too. But the "hydration" number didn't change on the scale, on the number that was suppose to represent % of body fat -- which yes I agree can be effected by hydration levels as well. But then why wouldn't the % of Water value be off on the same reading (the scale registers three values, weight, %bodyfat, %water.) Thanks for thinking with me! This may well be just another mystery or an anomaly that I will never know the answer to. Day in the life ....

So I've had this body fat scale for about a year now ... I bought it actually because it also features "hydration" level, or water percentage and I thought it would be a good idea to help keep tabs on dehydration. Anyway I noticed right off that my "body fat percentage" was always rather high -- 28-35% on a consistent basis. Everyone else in my family is around 18-20% but for whatever reason the Bioelectrical Impedance Analysis for me always seems on the high end. However, last Thursday I noticed that I could stand for a bit without problems. Strange, since I usually get symptomatic quite quickly. But all day I noticed that something had shifted. I could cook a little dinner at the stove without being perched on my stool and I even swept the back patio standing up instead of with my dust broom on my knees. I happened to glance at the scale that night and saw that my body fat was reading at 20%. Down from like 32% the day before. My hydration and weight were roughly the same as the day before. Only the body fat value had changed. I didn't think much of it, but noticed on Friday that my winning streak continued. I could stand up and walk around the house for short period of time without getting dizzy or dazed. All around it was a good day. Then again, that night i noticed that the scale once again read really low for body fat. Whatever it was that was causing me to feel better seemed to be correlated with whatever the Bioelectrical Impedance Analysis was for body fat on this scale. But again, hydration percent and weight didn't seem to change at all. Strange. As luck would have it I woke up at 6:30 a.m. on Saturday morning in a full on body flare. My system was shaking, I was back and forth to the bathroom, the heat waves where overwhelming ... all typical for me and my ANS on a really bad day. The flare lasted for a couple of hours, then I slept for a bit and woke up feeling like I had been hit by a truck. I am sure you can relate. By 3:00 p.m. I could get out of bed and leave my room for a bit ... and you guessed it, my body fat was back up to 29% on that silly scale. So strange since my weight is not moving around more than a pound or two and the hydration level seems consistent by this scales reading. But whatever is triggering these POTS flares and keeping me ostensibly off my feet, seems to have something to do with however the Bioelectrical Impedance Analysis is being measured on this device. Anyone want to put on their science cap and give this one a guess?

At times like this you have to read between the lines ... to what is in their heart and not coming out of their mouths!!!! For instance: "I am tired of hearing me you say that you are not feeling well." In the teenage mouth to heart translation dictionary means: "Oh Mom. You are such an amazing role model. I owe you so much for all that you are doing for me with all that you have going on in your own life. I realize you are so selfless, I only hope that I can be half the Mom that you are when I grow up. I love you soooo much. What can I do to help? Make dinner for you? Vaccum the living room? Polish the floors?" I have a 15 year old too ... and frankly if it wasn't for humor I'd have lost my mind years ago!! Hang in there hun. Lovely weather we are having. Who's playing tonight on ESPN? Did you see what the stock market closed at today? (Those are for your boyfriend ... he has a mouth to heart translation dictionary too.)

Isn't that funny ... I do the same thing, have for all the years I can remember. And he always answer ... "Of course." So here's a big OF COURSE to help you through today. ~EM

Aw sweetie any ONE of those things would be enough to warrant a rant and a bad day ... all of them at once? Well consider yourself a true sage. Its not always peaceful up on the mountain top, but you are truly amazing for all that you have to go through. Hang in there.

I understand your concern ... and you should certainly follow your heart on these matters. However, facebook doesn't require you to put in any information about yourself. There is no privacy issue if you don't put up any "private" information about yourself. Its actually quite an interesting social experiment to see what "face" people put on within facebook. I worked in high tech for two more than two decades -- and gave up the notion of privacy a long time ago. But Facebook certainly isn't for everyone -- there are ads, gimicks and gotchas. It appeals t the geek in me I suppose. ;-) Ideally though, I should think something INSIDE of DINET is preferable. I am most interested in connecting with my POTS family here when I am feeling the frustrations of this illness. There are dozens of free chat-apps that can be installed and integrated within the website without charge. Endless possibilities.

mebeam.com has live free video chat rooms -- no account or special software needed -- but they are created on demand and not a good way for seeing who is up and around at any given moment. Another thought would be something like FaceBook -- MightyMouse recently put up a POTS group for DINET on facebook and lots of us have joined. By added some POTS peeps to your facebook friend list, you get to see who is on line each time you sign on to facebook. Since facebook has so many addictive applications (YoVille, FarmTown -- lots of free toys to play with) many of us are on at all hours in various time zones around the world. There is a little chat box at the bottom of the screen that tells you how many of your facebook friends are live and on line in that moment. Easy to connect up with one of them, and then if you like open up something like mebeam, or google video, or IM etc. I'm always looking to add new facebook POTS friends drop me a PM and we can exchange info! ~EM

I get very very small. As best I can, I bring myself back to the tiny space that is this moment. Even though the symptoms feel familiar and last time they last 'this long' or meant I was headed for 'such-n-such' ... I remind myself that these are my mental stories and I try to just let them be, without believing in them. (Truth is anything can happen with this illness, and at anytime everything can turn on a dime.) As I bring myself back to this next breath, I 'tune in' to what sounds are around me. The song of a bird from outside my bedroom window, the hum of the air conditioner, the car alarm in the distance. One by one I recognize and become aware of my environment ... the world at large ... of which I am part of this amazing web of interconnectedness. Even with the pain, I try and focus on just one small part of my body. A tiny spot perhaps the size of a dime and just watch that one area and notice the size, temperature, 'texture' or movement. Cool thing about watching ANYTHING for a while is that we get to experience first hand and for ourselves that EVERTHING CHANGES. The pain (this one tiny spot) eventually shifts, the car alarm stops, the particular bird we heard before has flown away. Even what at first appeared to be a constant drone of the air conditioner when focused on for awhile becomes rich with lots of different 'mechanical melodies' and even silence embedded in the song. In a nutshell (only small pun intended) .... I wait it out!!! Hugs and giggles. ~EM

I did the Mirena IUD and had basically no periods for five years (scant at best). Then tried some of the new extended dose BPs like Seasonique. I think I was already in a POTS spiral by then so hard to say if they helped at all. My cardio this year decided I'm "old enough" and must stop all of the BPs. So I've been flying solo (at age 46) in perimenapause since last Oct. As for the frequent (constant) urination ... this was one of my hardest symptoms. My Doctor prescribed DDAVP (its an anti-diuretic used often for little kids with bed wetting problems). I took a tiny dose once or twice a day off and on as needed for years. My weight is pretty stable these days, so I haven't found the need to use it right now. If I start to rapidly loose weight again (my first sign of a POTShole up ahead) then I'd use the DDAVP again in a minute. Good luck with all of your adventures.

Nope. They give you a "pee jug" to take come. In most cases it is refrigerated between collections -- (insert joke about kids rummaging in fridge looking for something to eat). If you picked up the jug today, you may be able to hold it until Sunday for the collection and then return on Monday. If you call the lab they should be able to tell you how it works for them.

I get frustrated that I can't do "normal people" things, saddened for moments when I focus on things I can't do (like parties or vacations) for my kids or my husband. But embarrassed? Not since I met so many wonderful, powerful, optimistic "normal POTS people" here on the forum! As for shopping trips and "standing conversations" I can't stress enough how happy I am with my wheelchair! If I had known years ago how much easier this can make my life, I would have avoided so much pain as well as so much avoidance! Manual chairs are cheap, I'd encourage anyone not to let insurance stand in the way -- though my insurance covered the cost of mine. I only use my chair when I go out (which isn't often, but it wasn't at all before my wheels). I have a two story house, so there's no chance of deconditioning for me! I stand and walk as much as possible each day. But when I want to go out!, I don't want to have to plan and measure each step inbetween benches and rest points. My arms are strong and over the last 6 months I've built up good strength and endurance to push myself. I love the speed! I no longer worry how far something is, I can zip down an aisle with grace and style! Did I mention my chair is purple? I can stand and walk -- for me a wheelchair gives me distance and ease that I have NEVER had with POTS. It feels like the freedom we had as kids when we learned to ride a bike! In an instant our world opened up and we could soar like we never could on two feet. My chair gives me that feeling. I know its strange for some people ... because I don't look like I need a wheelchair. If you can stand and have stong legs ... why do you need a chair? But we've been explaining this illness for years anyway ... and THIS way I can actually have a conversation with you from the orthostatic comfort of my wheels.

I love "The Interview". It leaves me feeling empowered as a patient. Deep bow to FW for the lightswitch in an otherwise dark Doctor's office. I wonder though, would the Doctor also be left feeling powerful with a chance to really be an asset to this new patient prospect? Cat's situation sounds to me like a dwindling pool of possible PCP's. Which unfortunately does put the patient on the receiving end of "the interview". Also, is this truly all that we want in a PCP? Someone who won't question our established routine or previous diagnostic procedures? It's ok if that is! But if that is true ... wouldn't a PA be an excellent choice? If we have established prescriptions that we don't want to change ... blood tests we are committed to ... other "specialists" that we want to remain in the driver's seat ... then a "good" PA could be priceless. In theory at least, She/He may have the time to spend listening and reading through our notes. Each of us has educated ourselves on this disorder, we know it doesn't require a medical degree to understand ... just determination. My OB/GYN's office has a handful of RN's that handle all of the annual issues for patients. They are amazingly resourcful, have the full respect of the Doctor they work under and have been able to orchestrate blood tests, prescriptions etc. with ease because they are in locke step with the lead Doctors. If all we need our primary Doctor to do is listen and learn ... a PA may be an excellent alternative. All the resources ... without all the ego. For my situation -- I've never been to Vandy or Mayo -- I need a PCP who will be not only my pivot person and go between with my specialists ... I need him (or her) to take the information that I provide and give back to me any new insights or understandings based on his established medical expertise. I want him to have good working relationships with cardiologists and neurologists so that he can refer me as needed to people that he trusts himself. I want someone who actually reads over my chart history to remind himself of some of my trials and helps ME to remember things that have worked in the past when I have too much brain fog to remember for myself. In my case ... new insights and information are always welcome, even if it DOES look different from my current diagnosis or treatment plan. I've been sick off and on my whole adult life, with different names for the condition each decade. Sure POTS fits, it makes sense. But what if some day someone finds new information that also hits the nail on the head? What if, in my case POTS became a symptom and the cause is completely different than the treatments I was using indicated? Not saying iit will ... just that for me, I have needed to fine tune or jump ship on my healing journey, and my need for a PCP may look a bit different.

I periodically get the sensation of burning on my face. No rash. No discoloration. But like an icy-hot burning sensation. I tend to call it a "chemical burn" sensation -- but that's just to try and describe it to someone who is looking at me and saying "but your face looks fine." I also tend to get effervescing sensations in my head (brain? scalp?) kind of like little pins and needles that come on in waves usually confined to one quadrant at a time. No pain. They tend to come in clusters over a few weeks or months and then disappear as oddly as they started. Good luck on your own healing journey.