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  1. I wonder about that too ... through the wax and wane of symptoms over the years and what appears to be a slow and steady decline over time, what are the triggers that turn the disorder into such a life limiting condition. I use to warn my kids about drinking and drugs ... could our young and stupid years contribute to a metabolic shift? I read somewhere that having an auto accident can shift the autonomic system especially if you are genetically predisposed. What about long term stress? Auto-immune comorbidity? Lots more questions than answers. And I really don't want either of my daughters walking on eggshells wondering what they should or shouldn't do. Ultimately all of us are walking on thin ice, in one form or another. So for now we give ourselves Grace and put on the ice skates as we glide onward in our healing journey.
  2. Deep bow, warm smile. Thank you all for your good thoughts and wonderful resource links. I am versed in so many things on my own healing journey but I never thought twice about EDS as the cause of my POTS because I don't have the classic markers. So I didn't do a lot of reading in that area until more recently. When we saw that each of my now adult children do score high in the classic ways it helped shed light on the origin of our symptoms. Indeed it was then possible to track it back in our family for the ones who have "fibromyaligia" or vascular heart conditions etc. And yes its very hard to watch my son wake up everyday feeling the aches and pains and "flu like" symptoms that I have known for most of my adult life. My eldest daughter seems to manage her POT symptoms through the "normal" life adjustments and my youngest daughter just started college this year and prefers not to think about it. Really who does? Seeing her Mom and brother so sick ... it has to frighten my girls to some extent. But I've always told them we don't really know why things get worse or better in some people at some times and there isn't any reason to believe either of them will end up like me. Then again, I told my son that too. *sigh* So for now we'll just keep on keeping on, I do hope he opts to join some of the support networks for EDS I think he'll feel a bit more control if he talks with other people his age and hear about their healing journey. Thank you again for the information and kind words ♥
  3. Deep bow, warm embrace to all my old DINET friends. It feels like I have been away for a very long time and something inside me just so needed to check in and hug people who would understand. I'm missing the connection with those who understand what it means to live with a life limiting illness. I don't talk about it much ... other than in graceful poetic ways from my blog. But right now, it just feels so hard ... and so very "alone" in it. That this is the only place I know to come where I know there are people who understand deeply the pain. I make whatever peace I can with being housebound (the dysautnomia is hard and my nerves are shot ... you know how it goes with hyperpots.) And while I think I've "known" that my kids are all orthostatic intolerant ... my son (who dropped out of college last year due to illness) was seen by a specialist last month and scored 8 out of 9 on the beighton test for EDS. Each of my kids are classic EDS bendy .. all of them are also text book POTS (80 pulse at test 120+ standing) .. we've never done any of the formal tilt table stuff with them because they each manage well ... until last year when my son took worse. When the specialist found out I had formal dysautnomia diagnosis he told him some version of .. awe that's too bad, there's nothing we can do for that. Which is true in my case. My own PCP knows that all too well. Nonetheless, we'll try and find an EDS specialist for my son and see if there is anything different he can try .. but we move so slowly .. and you all know what a long road he has ahead. Brings tears to my eyes. Well gosh .. I so like it better when people who are hiatus come back with GOOD NEWS ... LOL. Sorry. I promise to be more perky down the line. Right now, I'm just circling the drain a bit.
  4. I found the site http://msgmyth.com/ a couple years ago and swithced my diet around to avoid loading up on foods with high glutamates (hidden MSG). For me it does make a difference. I try to eat less processed foods and avoid protein powders and bars etc. which all have some version of Soy Protein Isolate or Concentrate. However, I have no problem with tofu or soy milk etc. It's important to remember that even natural foods like tomatoes especially when cooked, contain very high levels of free glutamates. Everyone reacts differently. And it may be the glutamate load in any one meal as opposed to any one particular food.
  5. I only like the tinctures since I can control exactly how much I want to dose at one time .... I also can let it sit under my tongue for a LONG TIME when I want really quick absorption. I only buy online. Amazon.com has one that I've been getting recently. Its a member of the mint family and I hear really easy to grow. Susan Weed's book on menapause was the first time I heard about Motherwort and I think she has some articles on making the tincture at home ... http://www.gaias-garden.co.uk/articles/Sus...erbexpert4.html
  6. I'll second Reen's shout-out for motherwort. It's my drug of choice for the last year or so. I use it during a hyperadrenergic flaire or hot flash. Side effects caution use if you have thyroid disease <which I do> but my PCP is aware that I am taking it and it has not impacted my hashimoto at all ... by way of lab work. It also cautions lowering blood pressure ... but since I take it during a surge, i've not had any issues with that. It's my best perimenapause pal and the most effective antidote for hot flashes or palpitations.
  7. I have issues with reactive hypoglycemia and post pranial hyptension ... I can pretty much count on getting sick after eating anything before 3 in the afternoon. But I DO eat because it is much worse for me if my blood sugar drops on its own. I eat every 2-3 hours ... VERY SMALL AMOUNTS until later in the day (usually dinner) when I can eat a normal size meal. What works best for me to stabilize things is four ounces of whole milk. Low fat milk has milk solids added to it and these tend to cause an MSG like reaction (http://msgmyth.com has lots of info on hidden sources of glutamates.) I also take two ounces of aloe vera papaya ... to settle my stomach and aid in the digestion. Good luck finding what works for you.
  8. I didn't think twice about EDS because I don't have the "classic" hypermobility joints. That is I don't score very high on the brighton scale. On the other hand, I can put my foot behind my head, all three of my births were under two hours labor, my mother has fibro etc. etc. ... Then a couple months back my youngest came home and said some version of "Hey Mom can you do this?" And then proceeded to do some "strange" twisty thing with her leg. Long story short I asked each of my three children to do the Brighton test and they are all classic hypermobile. I then did the poor man's tilt table and EACH OF THEM would qualify for POTS -- their pulse was up more than 30 BPM from supine to standing. My girls were each over 120. I brought an article (or two) to my last Doctor visit ... plus some photos of the kids performing the brighen postures. I showed him the graphs for heart rate on standing and supine and he said it was pretty clear that for me the POTS looks to be genetic and that I did pass it along to each of my kids. At this time each of them are very healthy and have no "issues" with the POTS or EDS. So we are doing the normal "preventative" measures (salt, hydration ... and my eldest is considering compression for her teaching career) and we are taking a wait and see approach. Good luck on your healing journey.
  9. I got my wheelchair a year ago last January and I should have gotten one many years before that! I had no idea how helpful it would be on so many levels. At my worst I was able to use it from the bedroom to the bathroom -- which was the only two places I was going at the time. I use my chair now only when I leave the house, which admittedly I am still too sick to do very often. But I absolutely love doing for a stroll around the cul d'sac on my own power. My arms are strong and it feels so good to work my upper body in the chair. I found that I did far more exercise with my chair than I did before I got it. Subsequently I have been able to do more floor exercises as well so that my legs and abs are also in good tone. For me, the chair allows me to be more active and enjoy the time when I am out. It is such a blessing at the doctor's office, where there are long corridors and often long waits. My manual lightweight chair has elevating leg rests -- perfect for my POTS. When I asked about the wheelchair, my doctor was very supportive. He helped with the insurance paperwork and I was approved within a couple of months time. Someday as I may consider a power chair or scooter. But for now and given where we live, the manual lightweight chair works fine. One thing I did before bringing up the idea with my Doctor was to rent a chair from a local drug store for one month. That way I could see for myself if it would be of any value. Good luck on your healing journey.
  10. Thank you Ernie for posting and telling us about the amazing parts of your healing journey. It is so good to know that even after a LONG period of being down and out ... that the body can find its way back. As you said, it may not be a cure but you are so far from where you were and I know you are deeply grateful for all that you can do today. thank you for sharing. ~EM
  11. Yay you for the Paraguard. I've wanted one but I'm just not up to getting myself up and out to go and get one these days ... plus I'm only a few years away from wrapping up menapause I figure ... so why bother? As for Advil ... there were a few years when I stopped taking it after a bad reaction. But then I just started taking Junior Advil or Children's Motrin and worked my way back up to a full single dose of Adult Advil. Thank goodness because it's the only thing that helps with the menstrual cramps. I still notice that I don't need much, as I am med sensitive. So I'll take one 200 mg tablet and not need another for 8 hours. You may want to try a smaller dose and just see how it goes. I once did cryo at the GYN and only took a single advil. And I don't recall taking anything at all when I had the mirina IUD put in some 8 years ago. Good luck! Hope the paraguard works well for you.
  12. My experience is the similar to MomtoGuiliana, I was diagnosed Hashi in my 20's and I've had thyroid nodules come and go over the years. I understand these to be quite common with Hashi and in fact the only treatment seems to be taking thyroid hormone .. which most of us are doing anyway. The challenge with Hashi of course is that sometimes we go high (hyper) and sometimes we crash (hypo). Despite ardent attempts to modulate my synthroid or levoxyl over the years, I've never been able to get a good handle on "controlling" this autoimmune disease. Good luck on your healing journey. ~EM
  13. I was having a problem with flushing last summer and came across http://www.msgmyth.com/ which also lists all of the foods that have high levels of free glutamates which can be a problem for people who are sensative to MSG. I now steer clear of most of these foods and I do think it has made a difference.
  14. I hear this is quite common. For me I suspect my blood volume is low so when I stand the machines have a more difficult time taking the reading. I do have a biofeedback device I have used that will show each heart beat and I know my beat-2-beat variability is MUCH higher when I am standing. So for instance, when I am laying down my pulse may be between 70-75 (70 on the exhale and 75 as I take a breath in). But when I am standing the variance is much greater ... say 100-120+ (100 on the exhale and 120 or more as I inhale.) I think machines can tend to have a rough time finding an "average" when there is so much fluctuation. But for POTS folks this could be "our" norm.
  15. So sorry to hear the update. Keeping a good thought for you. I hope the insurance companies stay on top of this and treat you well. ~EM
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