EarthMother

Here's my explanation on what happens in these situations (and of course, I'm not a medical expert ... your mileage may vary ... etc.) When the body experiences something "unusual" as it does in POTS ... it can cause a sort of incongruity for the mind and body. The body signals to the brain that "something must be wrong" -- which makes sense because standing up shouldn't be this hard! So then in order to "match" these strange body signals, the mind begins to generate thoughts to comply with these strange body sensations. Some people (who have no clue about dysautonomia) may want to argue that it is the THOUGHT that comes first which in turn makes the body respond badly (i.e. we get a nervous thought in our head and then we faint.) Balderdash. Any of us with POTS knows that we feel it FIRST and foremost in the physical body ... and then for some of us (not everyone carries a mental story) the thoughts begin to form around this difficult body sensation in order to match the same intensity of the struggle. So yeah, there can be irrational thoughts -- you know the flair is going to pass, you understand this is a POTS reaction ... but because the adrenaline response is disproportional in your system, so is the thought process that it organically produces. Ok, then so what do we DO, if anything? For me, because I have a long history with body sensations and fused thoughts ... it becomes a matter of untangling the signals at each opportunity. So for instance, I'll eat a large meal (which I know is hard on my system) and then within 15 minutes or so I may get a postpranial POTS flair -- my BP drops out, my heart is tachy, my head is dizzy and I feel totally disoriented. At the same time these auto-pilot thoughts will come to try and match the physical symptoms. "Oh no, this is bad one. This one is going to be really long, I can tell. You probably can't handle this one on your own." At that point, there may be two options available (and sometimes there are no options in a flair, you just have to float your way through it) if you are able to remember this fused body-mind phenomena, then you may be able to associate the new thought of breaking this link ... "Ok, these are just thoughts out of habit that came from my body sensations with POTS. Its ok, I don't have to change them, or make myself wrong for having them but I can recognize these are fused thoughts and I can watch them instead of believing that they are true." Sometimes though, its too hard in the moment to access our "thinking brain" when our body is in reptilian or primitive brain trauma. In this case, instead of trying to "reason" with the thoughts we may be able to redirect our attention back to the physical sensations in our body. So for instance in my post pranial example above, I may choose to focus on the spinning sensation in my head, or the pounding of my heart that I feel in my throat. I can also choose to direct my attention to my feet, or my ear lobe or small of my back, where I may feel more solid and less distressed in the moment. By watching the physical symptoms without getting caught up in the story, we may be able to weaken that mind-body coupling that can happen for some of us with POTS. Of course, that's just my own observation ...

There are a whole slew of different types of reactive hypoglycemia -- some will show in 2 hours some in 3 or 4 or even 5. I went up to 195 at hour one and because it was scheduled for only 3 we never did see the big drop, but had we continued to hour 4 there is little doubt it would have gone below my starting numbers (low 70's) because it was crazy low all the time back then. Perhaps you can discuss with your Doc to schedule the 5 with the caveat that when you drop below baseline that you will stop there. ??? Make sure you get insulin levels checked every hour and not just once at the beginning. Good luck getting the answers you want and the tests you need!

Speaking can often be a trigger for me as well. And as Thankful said even on the phone. I suspect I don't breathe as well when I am talking or worse yet having to stand and talk at the same time. And I use to be amazing at giving stand up lectures. I am funny and love to engage my audience. But there is simply no way I could do that now. Towards the end of my career I would frequently flair at committee meetings. Folks came to see that as just part of my style. My hands would shake, my heart would be pounding and I would be peeling off layers of my "business attire" just to manage the internal inferno. What's even more strange is that sometimes it wouldn't happen at all. I mean there could be a really "heated discussion" at a board meeting and my body would be perfectly calm. There just wasn't any rhyme or reason. Still isn't for me. I can have a huge flair now in the middle of a Zazen sit. And I can say with confidence it isn't a panic attack. I have had panic attacks since I was in my early 20's and they feel much different than whatever this ANS imbalance seems to be. Good luck on your healing journey. ~EM

Wow. You did so amazing. To have grace in the midst of a crisis with another person is admirable, to have grace during your own personal struggle ... well that's just such a rare thing. Your story is an inspiration to all of us. Thank you so much for sharing.

The card that came with the DINET bracelets reads: It is fairly easy to print up your own card. It sounds like you need a new primary physician. When you find one it would be wonderful if you could print up a card and have him/her sign it with a contact number the hospital can use to call should you ever get dragged kicking and screaming again to the ER against your will Good luck. ~EM

Oh sweetie, I am so sorry you had to go through this. DINET use to sell a bracelet and some small cards that said what Dysautonomia was ... I carry those and give one to the paramedics if need be. No one has ever treated me like a nut case after they read the pre-printed card. I guess they figured I couldn't make that one up! Do you have a primary physician? If you do, they can call her or him when you get to the ER -- it can really help turn people's opinions around. When they call my Doctor he explains to them what I have and what to do. Speaking from someone who has been housebound for the last year and a half since I lost my job ... don't ever let anyone's opinion stop you from going OUT and living your life. Its very hard to begin again. Good luck on your own healing journey. ~EM

I'm glad to hear something positive about the copper one. I wouldn't consider hormones again at my age, and I am a bit concerned about even HEAVIER periods. But from other things I've read that doesn't seem to last with the Paragard. I may mention this as well to my GYN. When I had my Mirena put in years back it was the first one my GYN had inserted and he actually had to stop in the middle (while I had a heavy clamp attached to my insides and walk across the room to go and RE-READ the manual! I said, EXCUSE me but this really hurts! He said, "I know". And I corrected him and said "NO YOU DON'T KNOW because you don't have a clamp attached to ...." Well you get the picture. If I wasn't making a joke I would have been crying out in pain. Ahh, laughter ... best medicine yet. ~EM

Maybe we all need a new game plan! Its true so many of our friends simply can't handle the truth (I can hear Jack Nicholas in a Few Good Men -- You want the Truth? You CAN'T HANDLE THE TRUTH!) Alright then, let's make up another story. Instead of telling friends (and family) that we are too sick to go out,or we have to cancel at the last minute, or explain why we are suddenly on the floor in the mega-mart ... let's tell them we have joined a secret branch of the secret service. Heck, we can even call it DINET -- and tell them it is like Die Hard with a twist. Much of what we do happens behind closed door, so we'll be spending alot of time at home. Because my new job takes me away unexpectedly I may have to cancel plans at the last minute. Oh, and if you see me drop to the ground, you had better do the same because there may be snipers in the area! I bet in this status conscious society we'd have a lot more "friends" hanging around, willing to put up with our odd hours and strange schedule because they thought it was cool to be friends with an international spy! As for finding the strength to go on .... sometimes its just one giggle at a time. May you smile just once today. ~EM

Not estrogen per say, Mirena contains levonorgestrel, a hormone commonly used in birth control pills.

I did the Mirena for five years. The last four with no period. At the time I had it implanted it was very new and I did not realize it was still systemic (i.e. you are still getting daily hormones at a dose close to the pill). At the end of the five years I started having more thyroid problems and other health issues ... I didn't know what to attrib it to so I had the IUD removed (it was almost time anyway.) Looking back, I can't say the Mirena was the problem. One of my co-workers who had the Mirena about the same time as I did, ended up having to have it surgically removed after her five years was up, because it had implanted itself in the uterine wall. At this point, my cardio has insisted I be off hormones (I am 46) ... Good luck finding the right solution for you.

Don't know what browser you use ... but in Firefox I hold the CTRL key down and press the + key to increase font size on a web page. HTH ~EM

{{{{{{whispering lullabies in your ear}}}}}}}}} I am so sorry you have had an ANS backlash. This week my own system is having trouble shifting gently from sympathetic to parasympathetic as I try to lay down to sleep. But in my case the bedtime flair is passing (in an hour os so) and the rest of the night I have been able to rest. I know you know all of the things I would suggest in my not-so-sage advice ... like suggesting you augment the sleepless hours with sitting zazen, or asking about naps during the day, or heeding the wisdom of your body in the moment and doing what IT wants to do instead of our often over reaching mind. For me, I tend to over due when I have a little break in the pain and flaires. It is that 'missing life' quality that makes me want to do SOMETHING ... anything ... EVERYTHING I possibly can, because I realize that the window of opportunity may be small. I make the mistake that my life is only of any value during the glimpses of 'good moments' that come between the crashes. But I am beginning to learn that some doors are only open to me when my feet are on the Welcome Mat of that particular experience. With Grace may you walk through this door too. ~EM

{{{{{{{{{{{{{{{Gentle Hugs}}}}}}}}}}}}}}}}}}}} What makes it so hard for me is that I continue to have expectations when it comes to my parents. It must be in our DNA or culture, or in our Hallmark cards. But there is that assumption that parents should love their children, unconditionally. They should trust us, support our goals and comfort us when we are feeling down. Even the dysfunctional family TV shows seem to have each other's back and even though we may not have grown up in the Ozzie and Harriet homestead, a part of us may still cling to that image of how things "should be". For me the "suffering" comes when how I think things should be is wide of the mark of how things actually are. My mother won't even pick up the phone when I call. Now, my story could be that Mom can't handle my illness. And this could be true, she has certainly told me on several occasions that I am just making everyone's life around me miserable and I should just grow up and take care of myself and leave everyone else alone. Or it could be that Mom can't talk with me anymore, because there's something just wrong with Mom. And I don't have to fix Mom. She's the way she is. Am I sad? Sure. Do I still call and listen to the voice mail recording say "I'm sorry but the caller you have reached does not have a voice mail box set up. Goodbye." Yep, more times than I know why. Its a habit I suppose. Sometimes I think it is just too painful for a parent to hear about a child's illness. Even when we don't talk about it. To see us or interact with us on any level may just be too hard for them to handle. Maybe it activates their own cellular memories, perhaps they feel guilt or worry that maybe "they did something wrong." After all the story is really always about THEM, not about us even when we seem to be the target of their opinions. I wish your Dad understood the organic nature of your illness. I wish he hugged you gently and said he was so proud of the way you are fighting so hard to do as much as you can to improve the quality of your life. But then again, I still wish my Mom would pick up the phone. But for now, this is how it is. Its not pretty. We wish it was different. But this is how they appear to be in this moment. So given that, I wish you some peace and space around the issue, and the ability to love without conditions all that is, in this moment. Deep bow. ~EM

My husband's pulse is often in the 50's. We are techie's, hardly your 'athletic' type. He does power walk nightly, eats well, takes vitamins etc. But I have to believe some of this is genetic. As for how long you should shovel horse -*-%, I would think you should gauge more on how you feel. One of the drawbacks of a new heart monitor is that we see before our eyes what our body has been handling all along. It took me weeks not to be frightened by the readings I was seeing. I use it now more like bio-feedback. When I am feeling symptomatic (which for me is anytime I'm standing for more than 2 minutes), I crouch down and wait until I am feeling better before I get back up again. I try to remind myself its ok for my heart to be running a mile a minute and little by little allow it to do so for longer periods of time. My problem is if I get too tacky for too long I get a hidious surge and physical backlash. Trying to find my own threshold is a moving target. Good luck on your healing journey. ~EM

My goodness girlfriend! If you can groom the horses and go on a half hour powerwalk, I'd think you fall into the "normal" range for aerobic workouts (Take 220 and subtract your age, and then take 80% of that value as the high end for your target.) As for me ... I reach aerobic capacity walking downstairs to the kitchen and back! There are some interesting new technologies out now by way of the HR monitors. I really like the "Prevention HR-180PV/MF-180PV Chest Belt-Free Heart Rate Monitor" -- I picked it up at Amazon for just over $40 when I bought mine. It works on some kind of light sensor. Eventually I'm sure they will also have the technology worked out for this little guy: LifeSpan Fitness Heart Rate Monitor Ring (also at Amazon) which sells for $20. But I wouldn't recommend this for any "serious" readings. I tend to loose signal much of the time and it shuts off. But I'm guessing in a years time there will be many more of these types of beltless devices at affordable prices. Good luck finding something that works for you. ~EM

When I have active Epstien Barr titers, which I get from time to time, I tend to get those strange passing flu like symptoms. Low grade fevers, aches, sore throat and then it's gone again. Sometimes I think it can still happen when my thyroid antibodies are high. Lately now I just get hot flashes!

Oooh now that's an interesting thought .... there are oodles of acupuncture points all over the chest. I use to see an MD who was a trained Chinese acupuncturist and I routinely had 50-75 needles poked all over me in a single session. Never a problem. But one day she put one in this particular point in my chest and I had such a strong reaction. Within seconds she noticed that the site had a large red ring and it felt like an elephant was sitting on my chest. She pulled it out quickly, I think we were both frightened! The pain and reaction (hyperadrengic) stayed with me for the next day or so afterward. Interesting thought.

While it may be the case for your specific situation .... I was told countless things by any number of "specialists" in my day. Sometimes people can only see what is in front of them. I did finally find an OB/GYN who was willing and able to take "high risk" pregnancies. He was knowledgeable and supportive and my advocate every step of the way.

So when the acupuncturist said this did you tell her ... And as I am looking into my crystal ball I see that you were once a thief, that's why my check is going to bounce!

I know at the Dentist I have to ask for the drug without the Epinephrine. Brain fog today and I can't recall names of either product. You might want to check if the Lidocaine was cut with Epinephrine.

I had three children with orthostatic intollerance (that's what they called it back then.) I was on a ton of meds for the first one and short term disability for a few months in the middle because I couldn't stand up at all. I swore after a horrid labor and nightmare hospital stay that I'd never do it again. But I'm pretty sure giving birth kills brain cells ... because five years later I decided to give it another go! My second and third pregnancies were uneventful (which is a good thing!) I was heavier for both, which helped in my case. My personal belief is that when we follow our heart we are led to the place we were intended to be. Which doesn't always mean a picked fence and rug rats. Indeed separating what the greeting card company says we should want out of life and what is truly in our deepest soulful desires can be tricky to decipher. Ultimately I guess we are left to savor all that is in this tiny moment of now. Good thoughts your way. ~EM

Here's a fun exercise if you want to explore this a bit deeper ... Take a pen and paper out. Make a line down the middle. On one side write down all of the things you have CONTROL over. On the other side write down all of the things you have NO CONTROL over. Now take a good look at the lists. Examine in particular the things that you believe that you have CONTROL over. For intstance you might have listed "The clothes I put on in the morning." Just for this one activity there are thousands of factors that influence the act of our "choosing". For instance, what clothes are clean, whether it is sunny or cold outside, what someone else might think if we wore X, how much water we are retaining, what activity we have planned for the day, whether your roommate (or daughter) took your favorite sweater. If you think about it you'll see that there are an infinite number of factors that go into the "choice" of what to wear in the morning. Maybe you put down on your list that you can control how you treat people. Have you ever met people who seem to have a short fuse, while other people are as patient as Mother Teresa? Ever wonder what makes people respond different in the same situation? A biologist might tell us that part of our emotional makeup comes from our DNA, while a psychologist could demonstrate how conditioning plays an important role in how we interact with our environment. Either way, DNA or social conditioning ... how much CHOICE do we really have when it comes to how we are going to respond in a given circumstance. Maybe we have a low grade infection that day, perhaps we are overdrawn on our checking account, it could be any number of circumstances and influences that shape how we behave or react in the moment. See for yourself with your own list, just how many (if any) things you have control over in your life. Or if things seem to "just happen" as part of a complex interaction of contributing influences. I'll warn you, it can be a really scary thing for a mind to grapple with at first. Things like The Secret give us a sense of solid ground and at least the perception of control. But for some ... when the illusion of control falls away what takes its place is an even greater ability to relax and enjoy the present moment, without blame or guilt or burden.

I just checked and mebeam.com will work if you only have a mic and no webcam, but it will not let you enter the room if you do not have either. So ok, let's give this a group think! ... What days of the week work best? Sunday -- Monday -- Tuesday -- Wednesday -- Thursday -- Friday -- Saturday Preference for time of day? Mornings, Afternoon, Evening What timezone do you live in? ~EM

Interesting point of view Cath, thanks for adding it. In my case I do not experience syncope, the eeg at the hospital was administered because of my shaking and "strange jerks and twitches) I was having. The attending neuro had recommended anti-seizure meds which I tried for three days (even 1/4 dose) and they left me completely zoned out and still just as messed up. My PCP had approved me stopping them (as the neuro who gave them to me did so at the ER and was not familiar with my entire medical history). Turns out then when I was in the hospital that next week and saw this SAME neuro, she was not pleased I had stopped the anti-seizure meds. (I was still shaking and twitching lots last spring). So when the EEG showed two spikes and the lab tech saw me twitch once (when I saw a friend enter the room) she used that data to support her theory on seizure and recommended keeping me for further admitted eval. I also learned I was having blood sugar spikes and drops at this time (reactive hypoglycia) and chose to focus on one problem at a time. My cardiologist who I saw in the next couple of months helped me to understand the symptoms of hyperadrenic POTS and it put my own mind at ease about the surges and subsequent shaking storms. My blood sugar is now stable with a hypoglycimic diet and I don't seem to have nearly as many adrenaline flares, and even tho my POTS is still the pits, I haven't had the shakes or twitching since early fall. Hmmmmm. Maybe I'll ask my PCP if it is even worth following up on the EEG at this time given my present circumstances.

I am the Queen of Panic, and have extreme reactions to meds. I take very small (pediatric doses) when starting anything new. That said I had NO PROBLEM (no side effects, and actually little improvement if I recall) when I took Florinef years ago. I'd take it again, but my cardiologist doesn't feel its warrented for me at this time. I have no problems with blood draws and don't mind being a human pin cushion for newbie techs. But if it pain that is the issue for you ... ask for one of the "butterfly" needles they use in pediatrics. Many labs use them exclusively anyway these days. If you are feeling POTSY on the day of the draw ... ask to lie down. And stay laying down for a couple minutes after as your system settles a bit. (And feel free to close your eyes and visualize something tranquil or outragiosly funny!) If I try and load the washer my HR is 120+. Needless to say my husband has to hang them on the line. I could no more stand and raise my arms above my head than I could fly. What I DO do is keep a high barstool around and use it to cook (tho all my prep work -- cutting boards, food processor -- is done on the floor) or wash dishes. I also use a dust pan and hand held brush for "sweeping" the floor and a bowl of water and sponge to "mop". I find that for the most part my muscles are strong (tho I still fatigue more easily than most) and I can do more physical activity if I am sitting or squatting on the floor. Good luck finding things that work for YOU! ~EM