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Posts posted by SarahA33

  1. Welcome to the Dysautonomia Information Network's (DINET) Forum!

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  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.


  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!


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