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SarahA33

Past Admin/Moderator
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About SarahA33

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    Admin
  • Birthday February 20

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    Female
  • Location
    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 ensure the DINET forums remain a valuable resource for members. By providing a moderated forum we work offer our members a safe & secure environment for open communication and support. Please take a few minutes to familiarize yourself with our guidelines before joining in discussions. Thank you! Terms of Service Please take a few minutes to familiarize yourself with our guidelines before joining in discussions. DINET may revise and update these Terms of Services at any time. If you choose not to follow the rules agreed upon at registration and before posting, the result is a disabling of your account. Your continued usage of DINET's forums indicates you accept all changes and agree to the following: Purpose & Content DINET's forums are supportive and informational resources for dysautonomia patients and caregivers. Please be advised that posts on the DINET forums are visible to the public. We encourage our members to be cautious in posting personal information, including first and last names, e-mail addresses, etc. Please keep all discussions PG-rated. Account Information You agree to have no more than one username on the forum. Members may not use the term "Dr.", "RN" or other medical professional title or designation in their user name. Members may not manually sign posts with a professional title, such as "Dr." or "RN", that informs or implies that they are a medical professional. 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We care about your safety and urge you to seek professional help if you or someone you know is experiencing thoughts of harm or serious depression. International Hotlines (including the United States) can be found here: http://www.suicide.org/international-suicide-hotlines.html Moving, Editing and Deleting Posts You agree that DINET's moderating team may move, edit and delete posts, without notice, that do not comply with the forum guidelines, or for any reason deemed appropriate by the administration for the good of our community and its safety. Doctors and Hospitals You agree to refrain from making disparaging or defamatory remarks about hospitals or medical professionals on this forum. It is fine to make a statement describing your personal experience, such as "I had a negative experience with Dr. ____ ," however, you may not elaborate. If you choose to elaborate on a negative encounter, You may do so as long you don’t specifically name a particular doctor or hospital. Medical Advice The content of DINET's forums is in no way a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with a physician. Please keep in mind that treatments that help one patient may be detrimental to another. Members should never try any new treatment without first obtaining a physician's approval. Participation on DINET's forums signifies that you agree to abstain from giving medical advice to other members. It is not okay to offer a medical diagnosis or discredit a physician’s diagnosis, including advising on medications and treatment plan. It’s okay to share personal experiences and/or opinions on what has or has not helped you throughout your medical journey. Participation on DINET's forums signifies that to abstain from asking for medical advice. While the DINET forum does provide a medium for mutual support, it is not meant to be a substitute for professional counseling. We care about you and your safety. If you need support beyond what the forum can provide, please seek help from a qualified professional. Respect For Others A tone of kindness is appreciated in all discussions and in any message sent using DINET's personal messaging system. You agree, through the use of DINET's services, not to post any content that infringes upon or violates any members rights. Please do not post information regarding anyone else's health without first obtaining that person's permission. DINET encourages you to use good judgment, but please do not be judgmental in posts. You agree to refrain from flame wars, debates and the discussion of "hot topics," which are likely to provoke debates. Common hot topics include, but are not limited to, politics, abortion and religion. Asking for prayer and general religious comments are allowed, but please do not use this forum to promote your religious beliefs or comment on someone else’s. DINET's forum has a built in censor that removes profanity and replaces it with " **** " . Disagreements on the Forum: Other Members: You agree that if you have a disagreement with another forum member you shall not post about it publicly. You agree to handle it maturely within the Private Message feature. Administrators, Moderators or Rules: You agree that if you disagree with DINET's forum rules or the actions of an administrator/moderator you will not publicly post about arguments or disagreements on this or any other forum. We encourage disagreements to be brought to an administrator/moderator through the Private Messaging Feature. You agree to abide by the final decision made by DINET for continued participation. Advertisement, promotion and solicitation DINET does not allow advertisement. Any and all attempts to solicit members to use a particular product, participate in a specific event, visit a business or organization or participate in a specific medical study. Links to commercial websites or any other forms of promotional material is not allowed and will be removed. However, you are free to share your experiences with products, websites, organization and events without trying to influence other members or linking to sites that encourage sales. Links to manufacturers or product pages are allowed for informational purposes. Links to informational articles are allowed. If you are a researcher who would like to list your medical study, please contact DINET at webmaster@dinet.org It is okay to say you are a member of another organization, website or forum. It is okay to say you use a certain business or product. It is okay to say that you participated in a particular fundraiser. However, it is not okay to use DINET's forum to recruit members for other organizations, websites or forums. It is not okay to use DINET's forum to promote businesses, products, or fundraisers. Contact If you have any questions, DINET's administration can always be reached at dinetandforuminfo@dinet.org If you have a question for a specific DINET moderator or administrator, please send your question to that individual instead of posting it on the forum. Username’s for the forum staff: (Administrators/Moderators: MomtoGiuliana & SarahA33) (Forum Ambassadors: Clb75 ) The use of the forum is a privilege DINET provides to members. We strive to keep our forum a safe and enjoyable environment for all.
  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 improved with exercise except for fatigue, which I suppose could be more related to my autoimmune issues, too. Hi, recumbent biker, Welcome to the forum! So sorry to hear about the obstacles and challenges your facing. I understand the ER merry go round also, many of us here do. Have you seen a Dysautonomia specialist? Maybe you'd benefit from a center like those at Cleveland clinic, mayo or Vanderbilt. They have all types of specialists under one roof and offer in depth full autonomic testing. Hope things improve for you. Sarah
  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. The new edition of DINET'S quarterly published newsletter, Dysautonomia News, is now available. Articles like "beat the heat", "meet the member", "welcome new friends, saying goodbye to old friends", "challenges of working with Dysautonomia", "So, what do you do?", "drowning in the wake", "diagnosed at 59", and a message from our new president, Ellen Driscoll. When your inished reading, please remember to sign up for DINET email alerts. Thank you! http://myemail.constantcontact.com/Great-reading-and-important-info-for-you.html?soid=1127052693011&aid=AMqhmS4k2Xo
  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 recumbence • Chronic symptoms that have lasted for >6 months • In the absence of other disorders or medications that are known to predispose to orthostatic tachycardia Central Hyperadrenergic POTS Although the elevated sympathetic tone in POTS is often secondary to another pathophysiological mechanism, such as neuropathy or hypovolemia, it can also be the primary underlying problem [19]. Furlan et al. reported increased sympathetic tone in patients with POTS [52]. Resting sympathetic nerve activity, measured by microneurography, is elevated. A spectral analysis index of sympathetic function and plasma norepinephrine are sometimes higher at supine rest and increase more with HUT in POTS [52, 53]. Plasma norepinephrine levels should be determined in patients with POTS while in steady state in the supine and upright positions (at least 10 min in each position). When measured during upright posture, norepinephrine is elevated in many patients with POTS (>3.55 nmol/L (600 pg/mL) and sometimes >5.91 nmol/L (1000 pg/mL)), consistent with the sympathetic neuronal activation elicited by standing in these patients [19]. This is sometimes used as a criterion for the “hyperadrenergic subtype” of POTS. An exaggerated sympathetic vasoconstrictor response during the recovery and overshoot phases of the Valsalva maneuver may also reflect a hyperadrenergic state in patients with POTS [2, 19]. These patients may have orthostatic hypertension (increase in systolic blood pressure >10 mmHg on standing) and complain of tremor, anxiety, and cold, sweaty extremities
  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 0.3. , Propranolol 120mg LA and 40mg tabs. So, depending on my symptoms I take the most appropriate dose. Even when I'm hypotensive I still take the 0.1 of Clonidine because it manages my POTS symptoms so well. It helps with night sweats, insomnia, tremor and flushing -- those were some of my worst symptoms before starting this med, if I don't have it my adrenaline just starts pumping away again. My doctors have given me permission to do this with my medications, if not I'd be calling them on a daily basis asking if I could take a different dose lol. I wear both my abdominal binder and compression socks, take in increased fluids and sodium on the hypotensive days. I can see how your cardiologist was apprehensive about rx'ing the clonidine -- my local POTS specialist is a hypertension specialist and brought a resident with him one day -- he said," In 39 years of practicing I've never prescribed clonidine for this purpose but it's her game changer" I'm glad you've had some nice moments this summer thus far. It sounds so peaceful and serene where you are! I have been doing rather well until recently. I went to a few concerts, been playing softball, and spending time with my family and friends. I've recently had a setback but I'm optimistic it will pass with rest and time
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