EarthMother

I'll tell you what *I* do in those circumstances .... Step 1: I end the conversation and walk away. Still bio-chemically charged from the event. Step 2: I tell my husband, my kids, my friends ... heck anyone who I think will have a sympathetic ear. And I re-create the same bio-chemical charge. Step 3: I wake up in the middle of the night and think about what I should have said. And again re-create those same peptides in my body. Step 4: I continue to ponder what my next move will be and how I can avoid the abuse in the future! And yep, you guessed it. I turn on all the cellular reactions all over one more time. From what I can tell this pattern of automatic pilot replay seems to be part of the human wiring. Its like our cells become use to the peptides and conjure up all kinds of thoughts and other nasties just to get more of the same. It does me little good to remember this when the actual incident is taking place. But every now and then I can remember that my nemesis has these same peptide addictions. She is acting on her own cellular patterns and the name calling and insults are just her way of feeding those cellular memories. They have little to do with me in the moment. (Even though she may use my name and point her finger in my face when it is happening.) When I was able to work, I spent far too much of my time thinking and re-thinking many conversations. I still do that now from time to time with my teenager! But more and more I can catch myself just as the cellular feed bag goes on and I begin to get caught in that trap of feeding that same negative emotion. Sometimes I can even giggle when I shine the light on the situation. And in that small breath there is some space to refocus on something that is wonderful right in front of me. But as I said that's just me. Quite frankly my favorite advice given to YOU was from Sophia who recommends you take off your golden slipper and smack her over the head! Sorry you encountered the ever obvious ignorance that seems to follow each of us like a shadow with this invisible illness.

Oh sweetie. So sorry the "specialist" was a bust. I also have facial flushing and often accompanied by bilateral facial pain. Many times I get the intense feelings of a flush with no redness at all. Other times it looks like I have a sunburn on my nose and cheeks. Its been a quagmire. I was tested for Pheo tumor and carcinoid syndrome but the blood test came back negative. So best I can do is try and avoid the triggers, which is a joke since I have NO IDEA what triggers it. By the way ... I am in sunny california and it doesn't do SQUAT for the facial flushing. Firewatcher -- I know what you mean about photos .... good thing I'm a wiz with photoshop! Otherwise everyone would think Mom's a lush! Hope you find some relief. ~EM

I had a recent batch of blood work come back looking dismal ... what I saw thought was a note in there from the lab that said that there were broken red blood cells in the specimen -- which I later found can happen on a difficult draw or when the specimen sits around too long. Here's a blurb fron the web of all the things that can go wrong with a blood test especially those in the hospital where we may already have an IV in our arm ... "For instances, blood specimens may be contaminated with heparin if they're drawn from a line resulting in abnormal tests for blood clotting, similar to what's seen in patients on aspirin therapy. Blood specimens may be also diluted with saline during line draws or inadvertently put into the wrong type of test tube, causing diluted or contaminated test results. Difficult blood draws can cause the red blood cells to rupture, resulting in hemolyzed specimens. Hemolyzed specimens can interfere with liver function tests and potassium levels. Specimens that are improperly handled after blood draw, standing too long before being centrifuged, for instance, can cause falsely decreased blood sugar and high potassium levels. Many test results, for instance triglyceride levels, are falsely elevated when the patient doesn't fast for 8-12 hours. On the other hand, increased fasting, longer than 12 hours for instance, can cause the liver to produce more cholesterol, falsely increasing levels." http://www.suite101.com/blog/daisyelaine/i...ate_lab_results

You can probably have norepinephrine levels tested in the blood ... but I'm thinking that would vary greatly during the day depending on if you are having an episode. Perhaps the 24 hour urine for epinephrine and norephi, but mine actually did not show high levels the day we tested. I should also note I had like under 500ml for the entire day, because I was having a really rough time getting any fluids down that day. So who knows what it might look like tested again. But as for my cardio, his explanation was based on reviewing my symptoms and standard tests including previous TTT and holter. I think Dr. Grub has an article out that says hyperadrenic is a much rarer formm of POTS and often hereditary. But I think the way the term is used more commonly tends to refer to those of us who get adrenaline surges as part of our POTS diagnosis.

Normal? No probably not. But it happens to me as well. I actually feel pretty good when my heart rate drops from 120+ to 70 when I lay down. It feels like a relief. But yes, I also get those tachy sensations when I roll on to my side, especially when I first lay down to sleep. Oh and waking up tachy ... yep that happens often, especially if I have been in REM sleep (i.e. intense dream.) I sometimes wonder if it is the content of the dream, or more likely that our body is being POTSY and THAT interjects subject matter on to our dreaming brains. i.e. Find something scary to dream about to match the body response we seem to be having. When my cardiologist saw me this fall, he said I was going through a hyperadregic phase of POTS and that my body was having an over exagerated response to normal amounts of adrenaline. Made sense to me. I suspect that's why the sudden noises or hot flashes can cause me so much physical distress. ~EM

I agree ... it's the mentality we see too often that if we just "tried harder" we'd be all better. On the other hand, even if the contestants are successful in keeping the weight off after the show (or not) the question I have is does this make them suffer any less? I find that most people have something that they think is the root of their suffering. "If only I could loose weight ...", "If only I had more money ...", "If only I could find the perfect partner ..." The belief is of course that once they obtain this thing that all of their problems would be solved. What I see more often than not, is that people find a new problem that becomes the focus of their suffering. I'm not saying by any means that life without POTS would not be infinitely easier than it is for us now ... just that solving one thing (any one thing) doesn't tend to make you a happier, more joy filled human being. The joy and happy part we can still have now (albeit in tinier moments with much lower expectations.) But we don't need a reality show or professional trainers to get us there.

It is strange how different "specialists" can see the same patient and read the same test findings and come up with two (or more) entirely different and opposed diagnosis. I DO have tachycardia. But my cardiologist is dead set against me taking beta blockers. He wrote a summary note to my PCP where he reiterated that I had POTS and that I should not be taking beta blockers. (There was an endo who had insisted I be on beta blockers.) I recently bought a pair of the higher compression thigh highs ... it was too hot when they arrived. But now that cooler weather has arrived I should dig them out and try them out! Thanks for the reminder. Oh, and as for the notion that we need a correct diagnosis in order to have effective treatment .... I agree in an ideal world, yes. And we should certainly still keep trying to refine and discover that which continues to allude the medical world. However in the meantime, for some of us, we have to admit we are lab rats and sometimes that involves trying things to determine our own experience with each modality until we discover what works for our unique body system -- or indeed until our own body's wisdom finds a solution all on its own. Good luck finding something that works for you, for now. ~EM

You know I've been thinking about this issue of recovery for some time now as I see more and more YouTube videos with young women documenting their onset of POTS and how they are facing life with a "chronic illness". When I was 20 years old one of my Docs told me I had "tachycardia on mild "exertion" ... I never had a label of POTS until about half dozen years ago. So in the near 20 years prior I simply had times when I was very ill and could not function, sprinkled with times when I was very functional. I never believed I had a chronic illness, I thought I just had "frequent" illnesses. I didn't even relate one episode to another since they each had some subtle differences (though always the orthostatic intolerance ... but heck sick people lie around alot right? ... or so I thought.) I wonder, what life would have been like if I had a "diagnosis" at age 20. If someone looked into a crystal ball and said "You have a permanent and life long dysfunction of your autonomic system. You will have years, sometimes only months of feeling relatively normal followed by months (occasionally years -- yikes!) of times when you can barely walk at all." How would I have changed my life's plans? Well I would have made sure I had better disability insurance for one thing! But what about my decision to have three children? Take on a challenging and stress filled career? Marry a man whose own life would be forever changed because of the burden living with a chronically ill wife? And what decision would HE have made if he knew then what he knows now? Ultimately there is no crystal ball. We can believe what we want to believe. But in the end we must face THIS MOMENT just as it is .... and if we are brave enough ... we face that there is NO KNOWING of what the next moment may bring. Salubrious. ~EM

Mary Shomon is the most published lay person in the area of hashi and other thyroid disorders. She also moderates http://thyroid.about.com/ As far as I am concerned if you EVER have had a blood test that shows thyroid antibodies ... YOU HAVE HASHIMOTO. Once you test positive, it really doesn't matter what any other blood test says. It never "goes away" ... it may become less active or more active over time ... but "normal" people don't have the antibodies EVER. At least that's what I've been told from numerous Endos over the years. I was diagnosed with hashi in my early twenties ... and as I am in my mid forties now and in the throws of perimenapause I am also seeing HUGE swings in my thyroid levels. We have been testing every 2 months it seems for the last two years and it continues to go out of bounds. Both too high at times and too low at others. I am forever changing my meds (be VERY small amounts ... as not to disrupt too much at once.) Good luck I know this can be like nailing jello to the wall. ~EM

Another thought about dealing with "difficult" doctors, especially if you are seeing them for the first time ... in the past, I have called the office and asked to speak with Dr. So-N-So's nurse. I let her know that I am a new patient and wondered if the Dr. wanted to have any of my charts sent in advance (really just an intro question, so I can gage the office climate from her tone), I may also ask some open ended questions about what I can expect. How the Doctor interacts with his nurse/staff is another tell-tale-sign. Good luck in finding some answers to your vision issues and may this doctor be a strong advocate in helping you get the answers you deserve. ~EM

My BP tends to go low also especially at night. Over the summer when I was having terrible issues with hypoglycemia the nights were the worst! I would wake up tachy and drenched in sweat. Walking to the bathroom just made everything worse. I finally decided to use a rolling office chair (and sometime even had my husband push it for me) to get to the commode. You may want to check to see if your blood sugar is dropping, or try a protein/complex carb snack right before bed. Good luck finding something that helps. ~EM

Awww Tearose. Thank you. It was a big accomplishment for me, it's just hard for me to admit that. Thank you for cheering me on. Salubrious. ~EM

This past summer I wasn't able to get in to the shower or bath without significant breakdown, so I use to top and tail at the side of the tub and even lean over to wash my hair with the hand held nozzle attachment. I am now able to take a really quick shower but not without lots of preparation and conditions. My husband assists to turn on the water for me and wait until the hot water is ready, then he adjusts the temperature before I get in. If I had to stand to do all that, I'd be a wreck before I even started. I sit on the floor outside of the shower stall. I remain sitting in that crouched position while I take the shower, all of my soaps and shampoos are on the floor. I leave the shower running as I step outside when I am done and wrap in a towel beside the open door so that I don't get a chill and I can still feel the warm mist from the shower. My inability to maintain or gauge temperate in this body is a real challenge. So from there I get dressed (still on the floor) I can walk over to my bed (I have taken to showering at night because my body tends to be better able to handle it) and rest. Last night was the first time in months that I actually attempted a tub! It was a chilly day and I just really wanted to soak for a bit. After 15+ minutes of so, my body was getting so cold and I could feel myself begin to shiver (never a good sign) so I asked my husband if he'd turn on the shower (separate from our tub) so that I could rinse off, shampoo and warm up. As I was in the shower, my husband reached into the tub to pull the plug and commented how HOT the water was in the bath. It turned his arm red. Mind you I was FREEZING in that water. But once again room (or water) temperature doesn't seem to have much to do with how my body is feeling. I also have autoimmune thyroid disease ... so I tend to blame that part on it. Good luck finding something that works for you. Water can be such a soothing therapy ... its such a pitty we can't partake like we once did. I know your frustration.

I can't count how many times I've gone into a long POTS hole and have been unable to get around for months at a time. But I seem to be approaching a year and a half on this go and I'm not really sure what I can expect as I move forward. I understand that I have other health issues in addition to POTS. I work with a therapist twice a week who helps me get out of the house, which has been a challenge when I have felt so ill. So as I get stronger and we drive around to more places ... I get to look at what pieces of my illness are because I have POTS and which are peripheral to anxiety. I have enough trouble getting up and downstairs in my home. And I have had to resort to jury-rigging my whole kitchen so that I can prepare foods on the floor because even sitting up at a chair or being at the counter for more than a minute is impossible. I can however clean the entire kitchen floor from a squat position with a sponge and a bowl of soapy water. So I *CAN* do some things ... but standing/walking aren't on the list. So then when I drive to the market with my therapist and she says "Let's go inside!" I think what on earth am I going to DO in that store? Walk through the doors, get exhausted and turn around and sit in the car. Yep! That's what I decided to do yesterday. I hadn't even stepped into a store for probably a year ... but I miss it so and am trying so hard to see what pieces of my life I can reclaim. So I rested in the car for a good while, then got up and walked into the supermarket. It felt SOOO good to be there. I wanted to walk down the aisles and touch everything. But simple fact was I couldn't. My body just couldn't handle being upright ... so I stood there for a bit and enjoyed all of the sights and sounds and then went back to the car. Before I did, I thought about using one of those "electric" carts they have at some stores now-a-days. But the steering is so far from the seat that it is a stretch for me to get and hold my arms up like that. I was thinking maybe I'd rent a manual wheelchair for a bit just to see if it helps me get out and do some of the things my mind thinks it wants to do. Any one else use a chair periodically for their POTS? Anyone have any luck getting insurance (e.g. BlueCross) to pay for it? Is there one kind of chair that works better or worse for autonomic imbalance issues?

My daughter does and it is a real concern for her. She wears tank tops all year round. I use to sweat ... but in recent years I seem to have stopped completely. I rarely even wear deodorant any more. However I do have bed sheet soaking night sweats. Only on my chest/back never legs or arms. But I not only have to change what I am wearing but I drench the blankets as well. Ahhhh the joys of perimenapause.

Holding a good thought in a moment of stillness and peace on her behalf.

Is the NET protein a blood test? I had a 24 HR urine done to rule out pheo-tumors last summer ... all were normal except for the Metanephrines, Frac. QN which had my Normetanephrine LOW. Seemed strange to me ... but it was the opposite of a pheo so they ignored it.

I read an article this week about people who are "skinny obese". That is to say, they are classified as thin/normal weight for their frame and height ... but their percentage of body fat puts them into the obese category. I bought a body fat and hydration scale a few months back and it seems to work perfectly for all of my other family members. We are all fairly small framed (my daughter is 12 and weighs 88 pounds at 5.2 and my husband is almost 6 feet tall and weighs about 145.) Everyone has a fat percentage in the "healthy" range -- 18% or so. But mine is like 30%! At 5'5" I weight just under 120. So I thought the scale just must not be right for me. But then when I read this article ... I got to thinking. What if its true? What if I am one of those "skinny obese" people? I wonder if that has anything to do with blood volume or other POTS triggers. Anyone else seem to have a strange BMI vs body fat % ?

Even when I was 20 the doctors called it "tachycardia on mild exertion" ... that was pretty much all they could think of back then. But they never figured out that "mild exertion" meant standing UP! When I was a teenager I could jog. Heck I walked two miles to school ... in the snow ... up hill ... both WAYS! (Old Bill Cosby joke.) But fact is I COULD walk back then. I took a couple of Dance classes even in College. I noticed my heart went WAY fast, but I could still DO everything. Since my first crash in my early twenties all that went away. I have never been able to get back to being able to do any kind of aerobic exercise. I am pretty good at floor exercises though. I can leg lift, lying down with the best of them! And I can do ab crunches. I use to lift weights, but haven't in a long time now. At this point, even walking around gets me quite symptomatic. This morning I needed to walk downstairs twice (something I can usually do by mid day without a major crash) but by the time I got back up stairs the second time, my system went into adrenaline overload. Lots of heart skipping, as I sat down because the blood pumping was just going so fast during standing that it couldn't adjust quickly enough to the seated posture. It really gets annoying not to be able to DO simple things like that.

Have you checked your blood sugar? I use to shake a whole lot more before I started to track mine and learned I was reactive hypoglycemic. Digestion is still a huge thing for me. I do much better if I eat small meals throughout the day. I think it may simply take too much blood volume to break down a large meal at one sitting. I tend to lie down after eating and it helps with the post pranial pots. Good luck finding something that works for you.

I use to take a magnesium supplement called Natural Calm. It was a powder and one of the "side effects" was it produced soft stools ... even loose stools if you took too much. Maybe something like that would help because the magnesium would have a positive effect on all the soft tissues as well as the heart. Good luck finding something that helps!

Doctors sometimes say the first thing that pops into their head. That was total conjecture on part of her physician to say the miscariage was due to her POTS. If there was a correlation between POTS and miscarriage I'm CERTAIN we would have seen it HERE ON THE DINETS BOARDS FIRST! I had MISERABLE POTS with my first pregnancy ... probably because I was much UNDER WEIGHT when I became pregnant. The morning sickness went on for almost five months. I couldn't stand. I had to go out of work for short term disability. It was a scary time for me. But my daughter was healthy -- no problems whatsoever in terms of her development. I think our bodies are designed to take care of the baby first. I know that if we are nursing mothers, our bodies will produce antibodies to any virus in the house to our breastmilk before it even provides antibodies in our own blood system. It's all part of the design! My next two pregnancies were uneventful. I worked up until the day each of my next two children were born without a problem. I still had POTS crashes during those years, but none related to my births. Which leads me to believe that the bad crash I had with my first born may have had NOTHING to do with my pregnancy.

Just a quick note on my personal experience with benzos ... I think each of us react differently and .25 is tiny and I really don't think intermittent use at that dose will result in a problem for everyone. I had a prescription for .25 Xanax for years ... NEVER took it once. But it gave me some piece of mind knowing that I "could" in a pinch. Then last spring when I started to have severe symptoms as I slid into another crash, I took the .25 Xanax a few times. At the ER they gave me Ativan. And I tried that too. I even tried Valium a couple times. (None at the same time or even same day mind you!) But for me ... especially if I took it for two days in a row, what I began to notice was REBOUND effects. In my case even on this small dose, I started to feel REBOUND anxiety that was much worse than before I took the Xanax. I went into the hospital that June to try and figure out what was going wrong with my body and the nursing staff pretty much INSISTED I take XANAX while I was there for three days because I was so nervous. So I did. And on "doctors orders" (from some doctor who knew nothing about me) I kept taking it for the next week or so. My family and my therapist noticed how much WORSE my symptoms were on the Xanax and that it seemed to be going downhill. So I backed off V-E-R-Y slowly. It took probably another 2 months without any of the benzodiazapine in my system before the mental fog and rebound sensations improved. Its not unusual for me to have strange reactions to meds -- I just read a letter from my cardiologist to my PCP reminding him that I can't have beta-blockers because they don't work well with my POTS. While other POTS people do fine on low dose betas. Again, each of us react differently ... and it may be that I would react different another time on the benzos. But for now, they are on my list of drugs my system can't handle.

I use to spend a lot of time and effort trying to figure this one out. But for me over the years I have seen that sometimes I crash for no apparent reason! The same activity one day may have no post effects, but the exact same thing on another day may be followed by a multi-day crash. At this point, I do what I can do, when I can do it. And spend less time trying to analyze cause and effect. Because for me at least the possibilities are endless (what did I eat? how did I sleep? what was the barametic pressure (and yes this makes a difference for me as well!) the temperature, my hydration level etc. etc. etc.)

I've been fortunate to always find really good GYNs and Nurse Practitioners. Keep in mind a Doctor is a Doctor. They are not perfect, they don't know everything and they have bad hair days just like the rest of us. I'd recommend being as up front as you can, let her know you are nervous and what your concerns are. If she's any good at her job she'll put your mind at ease and answer any and all of your questions. My GYN always comes in the room to talk with me BEFORE I get undressed. I appreciate the opportunity to talk with him when I have my own clothes on. After the exam, he leaves again and lets me get dressed before coming back in to speak with me again. My GYNO knows I have POTS and understands that sitting up in the waiting room for long periods of time can be difficult on me. So I have often called the front desk staff before my appointment and let them know (if I am having a potsy day) that I may need a room to lie down and wait in before seeing the doctor if they are running behind schedule. And they have always done their best to accomodate my needs. Write down a list of questions before you see your Doctor, and don't be afraid to read from the list (and even take notes on the answers) right there on the exam table! You may want to include some open ended questions like whether they have any recommendations for patients with ortho-static intolerance. Remember pregnant women often experience orthostatic hypotension so she may be familiar with some of your symptoms even if she has never formally had a POTS patient before. Congratulations on taking the step to find a doctor you are comfortable with. I hope this one meets all of your expectations!