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Missy M

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About Missy M

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  1. I have chronic problems with edema from my Dysautonomia. My doctor prescribes a diuretic which helps (it does not add to my blood pressure instability, which they always worry about with POTS). In addition, water exercise helps my edema. This makes sense. I've read that water exercise is good for the limbic system. We figure (without knowing) that the edema may just be part of my chronic issue with electrolyte imbalances. We also figure the chronic electrolyte imbalances are most likely caused by the autonomic nervous system not regulating my electrolytes properly. Hope that helps.
  2. I agree. Sometimes simple is best.
  3. I’ve had dysautonomia for 18 years. Although in my case it has very gradually progressed over the years, and at this point does quite seriously impact my mobility, I have to say that I have no immediate plans to die. 😉
  4. Does his heart rate typically go up when his bp drops? I ask because my daughter recently got an Apple watch. She was able to set it to notify her when her heart rate drops too low or goes too high. So if your husband’s heart rate typically goes up when his bp drops down, he might consider an Apple Watch and set it to alert him when his heart rate hits a certain point. That might clue him in to take his bp. It’s just a thought.
  5. My bp often drops too low or soars too high after eating. I get resultant changes in my heart rate, etc. I’ve found it very helpful to eat smaller quantities of food. (I eat more often as a result.) Hope that helps.
  6. Mine has been soaring lately to very high ranges. The worst so far was 226/190. My only symptoms are typically a sudden headache and dizziness. In fact, the sudden headache is what clues me in to take my bp.
  7. DINET member name: Nadèche Hanique Nadèche's hometown: Brabant Province, Holland, Southern Netherlands Diagnosis: EDS, POTS Facebook: https://www.facebook.com/happymailforfighters/Instagram: https://www.instagram.com/happymailforfighters/ Click here to read this profile in Nadeche's native language, Dutch What inspires Nadèche's work, in her own words... I have eds, so I’ve been showing symptoms my whole life and was diagnosed when I was 11 years old. I got diagnosed with POTS when I was 19 years old, I am 21 now. For years I wanted to start my own card project, but I didn’t know how to start etc. Last year I made an Instagram account and I found out that there were other people with chronic illnesses having their own projects to support others and that ’s when I realized I should at least try it. So I posted a message on Instagram asking if anyone was interested in receiving a personalized card. I got so many requests in such a short amount of time, so I made a different account just for my project and it has been growing ever since! I’ve always wanted to help and support others. And I can do this work from my own bed, so it works very well for me personally too. Making others smile, makes me smile! I know from my own experience that it is not always easy to live with chronic illnesses, so I wanted to make the fight for others a little bit easier by supporting them and send them some happy mail to encourage them to keep fighting. I also want to make them feel less alone. I started Happy Mail for Fighters on the 29th of June 2017. So I’ve been doing this for almost a year now and I hope to continue this project for many years to come! Nadèche on family and life..... I’m the only one in my family who has these illnesses. I’m very close with my family and they always support me and help me and I’m very thankful for that! I’m also really thankful that my parents and sister help me with my project. Writing is very difficult for me so my sister writes the addresses on the envelopes and my mom brings the cards to the post office because my chronic fatigue makes it difficult to go to the post office etc. I got diagnosed when I was 11 and I got help from a medical psychologist. She helped me so much and I was so thankful! That’s when I realized that that’s what I want to do in life: helping others. It has been my dream ever since to become a medical psychologist and I study psychology now. Hopefully, I can help others cope with their illnesses and show them that life is still beautiful and you can still achieve things and follow your dreams.
  8. When I wore a Holter monitor it picked up enough bradycardia and tachycardia that it led my GP to refer me to an electrophysiology cardiologist. He was the one who recognized my symptoms and diagnosed me properly. He then ran additional tests to confirm my diagnosis. So the holter monitoring was very beneficial for me in that respect. Now that I am diagnosed they do not hook me up to holter monitors anymore. They DO hook me up to do ekgs when they run occasional tests such as treadmill testing.
  9. My docs wrote off my livedo reticularis to either being the result of my inherited autoimmune disease (autoimmunes can be a commonly known cause) or my Ehlers Danlos Syndrome (another commonly known cause). One in three people with dysautonomia also have EDS (Ehlers Danlos Syndrome), so I see EDS and livedo reticularis mentioned fairly often in various dysautonomia forums.
  10. One suggestion could be to keep a blood pressure cuff on your nightstand and take your blood pressure upon awakening (before you sit up or stand up). It’ll show you (and your doctor) what your heart rate and bp are doing. Then after you’ve stood up and walked around a few minutes, take it again (while still standing). Later on, when everything feels “calm” and you don’t feel dizzy or weird or anything take a reading with the blood pressure cuff again. The “before and after” various readings might help you and your doctor figure out whether the tachycardia is in response to your blood pressure dropping. I know my own doctor found my wrist blood pressure cuff readings very useful. They led him to order specific medical tests, and helped him more specifically advise me what I should do when certain bp cuff readings occur.
  11. EDS and Dysautonomia (POTS) run in our family. We do not have an expectation of being “cured”, although every time we master a new assistive tool or strategy to help us adapt to being more fully functional it is a cause for celebration. We also refuse to let it dampen our wacky spirits. 😊😜
  12. I specifically asked my doctor who monitors my dysautonomia for guidelines on when I should go to the ER versus just rest at home. He knows all of MY medical peculiarities and gave me some good rules of thumb to go by on when I should go to the ER. My recommendation is for you to have that same frank conversation with your doctor. Because what might be no big deal for me might be an urgent situation for you.
  13. It looks like my left leg. I was diagnosed with it being livido reticularis (which someone else mentioned above). Livedo reticularis is a symptom, not the name of a disease. It can be caused by many things. Since two of the known causes can be autoimmune disorders or EDS (Ehlers Danlos Syndrome), and since I have both an inherited autoimmune and suspected EDS, my doctors and I saw no need to worry about it further. That was two years ago. My livedo reiticularis is still present in that leg but faded quite a bit after I did water exercises for several months. I think the exercises benefitted my circulation.
  14. I find frequent but small meals helps me avoid a lot of the digestive issues, as well as the blood pressure drops I can get after a large “heavy” meal. I find it helps to lift my spirits to do interesting hobbies with my hands during those times I have to lie down or stay seated.
  15. Vanderbilt sometimes has research programs where they’ll run some autonomic medical testing for free (to get your data for their research).
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