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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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    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. 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!
  4. 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
  5. TCP -- yes, this does sound scary. I'm so sorry to hear this happened to you -- do you have any updates on how you are doing? I hope you've noticed improvements with your migraines, I know how awful they were for you. Please know your in our thoughts and we're wishing you the best! Sarah
  6. I'm almost certain hyper pots patients can have hypotension also. I experience both high and low bp, and I've got high adrenaline levels. This may be a good question for our medical advisors... DINET publishes a quarterly newsletter with a medical q&a section, answered by some of the top dysautonomia/pots specialists, you can view the advisors page through the about us tab above. Our members submit questions, so If anyone would like to submit please send them to DINETandForumInfo@dinet.org Does anyone remember their dopamine levels? I ask because mine have been all over the place..
  7. S@HM & Finnn- do you or your husband get migraines? That is a very common characteristic of hyper pots as well, as is anxiety like Buffrockchick mentioned, more so while upright. and flushing. Often both supine and standing NE levels are obtained, 15-45 minutes after the patient is left in quiet room, and then 15-45m minutes after standing upright, depending on the lab. Some doctors also additionally measure levels during a tilt table. Here is an older thread:
  8. Here is a recent Paper by Dr. Raj: https://link.springer.com/article/10.1007/s11910-015-0583-8#Sec3
  9. Hi Stay@HM -- I'm looking for the more recent paper that Dr. Grubb has written on this sub-category but I cannot find it atm. I will keep looking. This is taken from a paper he wrote some years back, the info is still relevant. Hope this helps! Sarah A second (and less frequent) form of POTS is termed the “hyperadrenergic” form.9 These patients often describe a more gradual and progressive emergence of symptoms over time rather then an abrupt onset. Patients with hyperadrenergic POTS often complain of significant tremor, anxiety, and cold sweaty extremities while upright. Over half o
  10. Hi, Sean - Many of us here on the forum have had to go through trial and error with medications to control symptoms until finding a combo that helps us become more functional. It's entirely possible that you'd benefit from another type of beta-blocker, there are quite a few out there, or perhaps Lebetalol, which is an alpha-beta. Or, Like Haugr mentioned, hyper POTS is often treated with clonidine (which also comes in a patch form that you may find easier to tolerate as its a continuous, leveled out dose. Another BP medication that is rx'ed for this type is Methyldopa. Take care! Sarah
  11. Oh that's such great news. Hopefully they can fit her in soon. DYNA kids has excellent information and resources on their site. Wishing you all the best
  12. Oops, sorry about that, I saw tx referred to above. Are you far from columbus? Dr. Jeffrey heyer runs a pots/dysautonomia clinic at nationwide children's hospital. http://www.nationwidechildrens.org/postural-orthostatic-tachycardia-syndrome-clinic
  13. Hi there, have you seen Dr Ian butler or Dr. Nuemen at the dysautonomia clinic at memorial Hermann?
  14. Hi -- here is new research from Dr. Grubb on Treating Refractory POTS with IV Saline https://www.researchgate.net/publication/313506555_Effects_of_intermittent_intravenous_saline_infusions_in_patients_with_medication-refractory_postural_tachycardia_syndrome Welcome to the forum!
  15. I'm sorry BuffRockchick that you experienced this. As much as my POTS symptoms have improved over the last few years I still cannot stand. It triggers an adrenaline rush for me, probably due to the blood pooling. I wear compression socks 30-40 rather than 20-30. I also started using an abdominal binder which helps. Like Haugr mentioned I also have episodes triggered by anxiety. My doctor is pretty sure that I have generalized anxiety, but it's not for sure since my adrenaline (norepinephrine) levels come back so high. He did say it could be a secondary anxiety caused by primary symptoms also.
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