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SarahA33

Past Admin/Moderator
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About SarahA33

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  • Birthday February 20

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    Female
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    New York

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  1. Sarah, I am in Philadelphia and am also looking for a doctor. Could you advise me for finding a doctor? Thank you. Claire

  2. Welcome to the Dysautonomia Information Network's (DINET) Forum! **If you are experiencing a true medical emergency, please call 911 or go to your nearest Emergency Room** DINET was created in 2003 because of a lack of available resources and awareness. We are the oldest dysautonomia non-profit and patient forum & support network in the world. Today, DINET is still dedicated to providing international support and offering resources to thousands of patients and caregivers living with dysautonomia. The forum guidelines are not arbitrary and are in place to e
  3. UPDATE: We are pleased to inform you that the IT issues we previously reported are resolved.The DINET (www.dinet.org/forums) and website, (www.dinet.org) are back up and running smoothly. Thank you for your patience!
  4. Dear DINET Members: We are currently experiencing temporary technical issues within our forum & website, www.dinet.org We appreciate your patience as we work to resolve this as quickly as possible and are sorry for the inconvenience. We will update you accordingly here on the forum, however should you be unable to access the forum, please visit the Dysautonomia Information Network Facebook Page for more information. Thank you!
  5. Hi, p8d, Balancing an exercise regimen is hard for me also. I used to have a schedule that I tried to follow, and I ditched that because I couldn't keep up with it on my very bad days. My doctor said to exercise 3-4 days a week, so I just do as much as I can on the days I feel my best. Some weeks I only get 2 days in but it's better than nothing. There is a definition for this that's used in the CFS community, post exceptional malaise which is the inability to repeat previous exertion due to worsening of symptoms both physical and cognitive. Some of My POTS symptoms have most definitely
  6. Hi, thank you for sharing these updates. If you'd like to suggest a physician to add to the list, please use this form: https://www.dinet.org/physicians/?do=form&d=3
  7. Your in our thoughts tcp, wishing you all the best. Hope your upcoming Mri shows good results. So sorry you've had to go through so much. Hang in there!
  8. Hi, runfoerester..Welcome to DINET. Sorry this is happening, it sounds scary. Have you looked into sleep apnea or considered seeing a pulmonologist? If the pillows help, then maybe you could try elevating the head of your bed.
  9. Yes I'd also expect it to be lighter in color, esp since your taking in increased fluids. here in the states the lab will usually include the color and clarity of the sample, is this done where you are? Might be helpful for your Dr. To know.
  10. This may be the book Kim was referring to above. Scroll down for the text
  11. No judgements here, chem. We're here to offer support and exchange resources and experiences. Here is a past thread that might help you. Glad your planning on talking to your Dr., Welcome to the forum
  12. Below are questions sent in by DINET members and answered by our team of medical advisors. If you have a question for DINET's advisors, please send to dinetandforuminfo@dinet.org The Medical Q & A is managed by Sarah Abraham Q: My doctors and I highly suspect I have POTS, though they aren’t experts, they feel it is plausible. That aside, my real question is...POTS...is it one of those things that can happen at night, too? I find myself sleeping and then out of nowhere my heart will pound up to 200 BPM and I will get nausea/diarrhea and have to go to the bathroom. Usually, though, I
  13. Hi Kelly - Welcome to the forum! Maybe a second opinion is needed? Here is the diagnostic criteria from a recent paper by Dr. Raj, a POTS specialist - Table 1 Diagnostic criteria for postural tachycardia syndrome • Increase in heart rate ≥30 bpm within 10 min of upright posture (tilt test or stand) from a supine position  ◦ Heart rate increase must be >40 bpm in patients <20 years • Associated with a constellation of symptoms that are worse with upright posture and that improve with recum
  14. Hey Plaster -- nice to hear from you -- though sorry it's under these circumstances! I thought Sjögren's syndrome also.. dry eyes, low grade fevers. There is a study we recently posted on our facebook page just completed by Dr. Brent Goodman from Mayo Clinic -- Spectrum of Autonomic Nervous System Impairment in Sjögren Syndrome" and we include a list of Sjögren symptoms. You might want to take a look there. Have you had a lip biopsy?
  15. Hi, Ancy! I was just thinking -- northera is much longer acting than midodrine, so you'd have "less control" over your hypertensive episodes, as midodrine is shorter acting. Mine wears off in about 4 hours. I'm also a rapid metabolizer so it could linger longer for you and others. Something to definitely talk to your dr about though! I have to listen to my body when taking meds for the day, and like the midodrine, the clonidine wears off quickly as well. I'm still on as directed doses of Ivabradine & Florinef, but I have two doses of 3 meds, Midodrine in 2.5 and 5mg, Clonidine in 0.1 and
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