Jump to content

SarahA33

Past Admin/Moderator
  • Content Count

    1,342
  • Joined

  • Last visited

Posts posted by SarahA33

  1. 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.

    Legal Issues

    You agree that DINET and/or its volunteers will not be held liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this forum.  The content appearing on our website is for general information purposes only. When you submit a question or make a comment on our site or in our dysautonomia discussion forum, you clearly imply that you are interested in receiving answers, opinions and responses from other people

    You agree to respect copyright law and refrain from illegally posting copyrighted material on this forum.  All information on DINET's forums and website is copyrighted.  Any information that you do not wish to be treated as Information should not be submitted to DINET's forum. Please contact DINET if you are interested in reprinting anything from the Dysautonomia Information Network website or forums.

    As a matter of site liability, you agree not to make public statements that express a wish to harm yourself or others. 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.   

  2. 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.. Not detectable and then slightly higher than the reference range. I saw in one of the papers that dopamine can be high in hyper form.  

    Also, welcome to the forum, infoseek!

  3. 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:

     

  4. 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 of these patients experience migraine headaches as well as a significant increase in urinary output after being upright for only a short period of time. A characteristic of this form of POTS is that patients will often display orthostatic hypertension in addition to orthostatic tachycardia. Many will also have an exaggerated response to intravenous isoproterenol, as well as significantly elevated serum norepinephrine levels (>600 ng/mL) on standing. http://circ.ahajournals.org/content/117/21/2814

  5. 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

  6. 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. I didn't have anxiety before I got sick, but I was always rather "jumpy" or easily startled.

    This is a perplexing and difficult condition, especially because symptoms change frequently with no rhyme or reason. I hope you get some answers with a diagnosis. Most of us begin to improve then. I was re-diagnosed with POTS (hyper) at Cleveland Clinic and also Inappropriate Sinus Tachycardia. The symptoms can overlap so it made obtaining a diagnosis challenging. The good news is that after I was diagnosed with IST, I was started on Ivabradine and it regulated my heart rate. Take care, Sarah

  7. I also have hyper pots, and was advised by my pots specialists to take in a certain amount of sodium and fluids every day. I had high BP before this and it's not any higher because of the sodium intake. It has something to do with expansion of blood volume and kidneys.  There are past threads on this. 

  8. Hi Marsha, 

    I'm also so sorry for your loss. 

    I've also relapsed after about a year of feeling very well.  It turns out my electrolytes have a hard time stabilizing now for some reason.. have you had labs checked? Also had some other issues but those were rare. Maybe they could run some thyroid labs. Are you wearing compression socks? Those help me tremendously.  Hope things get better for you soon. Sarah

  9. quote13.png

     

    Medication & Allergies List

    Name:       ______________________________________________   DOB: ____/_____/_____

    Pharmacy: ____________________________________________________________________

    Keep your health safe by sharing this list with your doctors and pharmacist. Bring this list to Medical Appointments and keep it with you in case of an emergency. List all current medications (RX & OTC)                                                                                                                           Medication                            Dose / Frequency              Reason/Additional Information

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

    Allergies   Medical & Food/Environmental                               Reaction

                      

     

                                                               

     

                  

     

     

     


     X:__________________________________________________           Date Updated: ________________________________

    *For information & Resources on Dysautonomia and POTS, please visit www.dinet.org

  10. Hi everyone,

    Our Dysautonomia community has just finished celebrating Awareness Month this past October. We at DINET wanted to mark this occasion with a small token of our appreciation to our members for their support and participation. We've designed a Medication and Allergy List that you can print out and use at your disposal.

     

  11. Our friends at POTS UK have asked our board of directors to share this petition with you all. Please take a moment to sign this petition for urgently-needed research to understand & treat life-altering health condition POTS. This is an opportunity to get research in the UK off the ground through such an incredible consortium of local and international clinicians, leaders and patient groups by
    applying to the MRC (Medical Research Council) for funding.

    https://www.change.org/p/dame-sally-davies-fund-urgently-needed-research-to-understand-treat-life-altering-health-condition-pots?recruiter=76157910&utm_source=share_petition&utm_medium=email&utm_campaign=share_email_responsive

  12. A big thank you to all the DINET members who supported us through Amazon Smile :D

    The number of donations went up a great deal this past month, so we kindly thank you for contributing. We hope you continue to shop through amazon smile all year long and pass the link onto your friends and family. Every donation is appreciated and goes toward our mission to raise awareness of Dysautonomia, Educate Physicians on this difficult to treat condition, and to support our members.  To find other ways you can help support DINET, please visit:  http://dinet.org/index.php/help-us/donate   

    Thank you!

    Team DINET

  13. Help support Dysautonomia Information Network (DINET)! To start shopping and supporting, click on the Smile.Amazon.com link, and a percentage of your regular Amazon purchases will benefit the Dysautonomia Information Network.  If you'd like to log onto Amazon Smile (This is the same amazon you would normally use, but for charities), enter your same Amazon PW & Phone #. At the top left of the screen change the default charity, click "change your charity" and Type in "Dysautonomia Information Network,"

    *Please note this is the same amazon site you typically use, except amazon smile is for supporting charities and non profits.

    As DINET is a 501(c)(3) non profit organization that is completely run by volunteers, we thank you for helping to support DINET during Dysautonomia Awareness Month and all year long. We depend on your contributions and donations in order to provide you with the information and resources that you've relied on for the past 15 years!

    https://smile.amazon.com/

×
×
  • Create New...