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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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  3. SarahA33

    Forum & Website Experiencing IT Issues

    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. SarahA33

    Hyper POTS, AI and exercise

    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. SarahA33

    Searching for physician

    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. SarahA33

    Pituitary Tumour and Apoplexy

    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. SarahA33

    Trouble breathing?

    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. SarahA33

    24hr urine collection colour

    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. SarahA33

    Please don't judge need advice

    This may be the book Kim was referring to above. Scroll down for the text
  11. SarahA33

    Please don't judge need advice

    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. SarahA33

    Medical Q & A July 2017

    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 have to crawl or I will pass out. During this time I am so hot and sweaty. I feel no anxiety, usually sit in the shower and try to distract myself until it passes. The ER hasn’t been helpful and my cardiologist acts like it's nothing, but I'd really like to know what's happening when my heart is doing this to me and then stops in like 15 minutes. - Cassie A: Sometimes POTS patients can have accelerations of heart rate at night. This could be a part of nonrestorative sleep disorder. Alternatively, primary arrhythmias can also do that. You may want to consider a sleep study or Holter to look at heart rate at night. Dr. Amer Suleman, MD The Heartbeat Clinic Q: How do you decide which type of compression stockings are best for each of your POTS patients (knee/thigh high, abdomen compression and the stocking strength). Does open or closed toe or material matter? - Thanks, Kerry A: You can do venous Doppler of legs to see the level of venous insufficiency. Most patients require thigh high or waist high 20-30 Hg mm, Open or closed toe should not matter Dr. Amer Suleman, MD The Heartbeat Clinic Q: When I drink water, I feel more dizzy. I fell (hard!) and fainted once. My blood pressure was 20 mmHg higher than usual and rose when standing, so definitely not OH. I was eating salty snacks all day. Why would I be more dizzy and fall from drinking water? - Forum Member A: You may have orthostatic "hypertension" consider consulting with a physician about this Dr. Amer Suleman, MD The Heartbeat Clinic Q: I was diagnosed with POTS about six years ago at Mayo. I am a member of the POTS Forum and have been for years. I have severe osteoporosis and reacted poorly to one dose of a bisphosphonate. My doctor is pressing me to take a shot of prolia, my bone density is low so I must take something. I am very concerned because I have read about POTS & Autoimmunity, and prolia works through the immune system, I’m worried about increased POTS symptoms. Thanks so much. -Lynn A: You should be checked for EDS phenotype. We have presented a paper on this in American college of Rheumatology. Also vitamin D levels should be checked I am not qualified to opine on treatment of osteoporosis but have not seen much problems with prolia Dr. Amer Suleman, MD The Heartbeat Clinic Q: I am newly diagnosed with POTS (unknown cause). I become SOB very easy especially in the heat. Is there anything that can help with this? Before it's onset I exercised 4-6 days/week and now can barely tolerate doing simple exercises. Thank you, - Tabatha A: Shortness of breath can be related with several things including but not limited to tachycardia, deconditioning, poor cellular oxygen uptake, pulmonary causes, rare disorders like platypnea orthodeoxia. You should see a doctor. A cardiopulmonary stress test may be a good starting point. Dr. Amer Suleman, MD The Heartbeat Clinic Q: I was recently diagnosed with dysautonomia. In addition, I have type 2 diabetes, Parkinson's disease, and kidney disease. I am flying to Denver this summer, and was curious as to whether or not flying could cause any issues with my dysautonomia. It manifests as an increased heartbeat, inability to regulate my body temperature, and I also have neurogenic orthostatic hypotension. Also, could the higher altitude in Colorado be an issue? – Tammy A: I have not found flying as a major issue. Drink lots of water, preferably wear Ted hose stockings. As regards going to Colorado, I have seen it both ways mostly cold weather helps orthostatic hypotension. Dr. Amer Suleman, MD The Heartbeat Clinic Q: I have high BP, rapid heartbeat and POTS.. I don't faint when I stand from sitting. I faint after exercise, after grocery shopping while waiting in line, while cooking, blow drying my hair, having a bowel movement, while showering. I'm super confused as to what I'm to do to help myself. I'm 63. All I've been told is wear compression socks. Any better suggestions? I have several autoimmune issues, the biggest one is lupus. - Donna A: In any postmenopausal woman, ruling out heart disease is very important if you have high blood pressure and fainting after exercise or with any other exertion. If your cardiologist has already done a thorough workup to rule out congestive heart failure, coronary arterial disease, cardiac arrhythmia and other heart problems, then a tilt table test may confirm whether you have neurocardiogenic syncope, POTS or orthostatic hypotension. Autoimmune disorders, such as lupus, can be associated with these autonomic disorders as well as small fiber neuropathy. Treatment that helps rapid heart rate and prevents syncope includes medications, such as beta blockers, Florinef, Mestinon and others, but should be started after your diagnostic workup is completed and preferably by a doctor specializing in autonomic disorders. If you can't find a specialist in your area, you can contact our clinic for help. Dr. Svetlana Blitshteyn, MD Dysautonomia Clinic Q: My name is Cassie and I have recently been diagnosed with POTS. I was cleared by all doctors to get a flu shot this year but after getting the shot my symptoms have been worsening. I was wondering if it was common for the flu shot to aggravate symptoms experienced by POTS? Thank you A: Some patients with POTS experience worsening of symptoms after a flu shot; typically, the worsening may last a few days to a few weeks, but in most cases, the patients return to their pre-vaccination symptom severity. Dr. Svetlana Blitshteyn, MD Dysautonomia Clinic Q: My daughter is 14 and recently diagnosed with POTS. In May 2016, she was diagnosed with h pylori bacterial infection. She was adopted from Russia in 2004 and it was so entrenched that they believe she has had it since before she was adopted from Russia. My question is: Is there any correlation between H Pylori and POTS? Thanks, Lisa C. A: I am not aware of any correlation between POTS and H.Polyri, but I don't believe this question has been studied. Dr. Svetlana Blitshteyn, MD Dysautonomia Clinic Q: My daughter is so tired all the time. The only thing her doctor says to do is eat salt and increase fluids and that is it She can barely do anything, is there anything else we can do? Beth M. A: Fatigue is one of the most common symptoms of POTS and the one that's difficult to treat. While increased salt and fluid intake can be helpful, it's certainly isn't enough to effectively address fatigue in many patients. Before proceeding with medications that improve fatigue, it's important to make sure that other POTS symptoms are well-controlled with medications that are used for POTS. Often patients report improvement in energy level if their heart rate is better controlled with beta blockers or their orthostatic intolerance is improved with Florinef or Midodrine. If these treatment options have been implemented and fatigue is still unrelenting, then medications such as Provigil, Nuvigil, Ritalin, Adderall, Concerta or Wellbutrin may be helpful. Dr. Svetlana Blitshteyn, MD Dysautonomia Clinic Q: Since I contracted POTS and SFN (in 2011) I have had more frequent infections and infections that have needed antibiotics to resolve, in particular frequent respiratory infections. Just in the past 18 months, I've had frequent colds and flu, a couple of UTIs (I'm a male so a bit unusual), recurring prostatitis, recurrent sinusitis, developed asthma and had a bout of labyrinthitis. I've had blood tests for immune function and everything came back normal. Having read the DINET forums I gather other people with POTS have had similar issues with frequent infections and wondered if there was any research or further information available on whether to this part of POTS and why it happens? Many thanks, Glen Brisbane A: It would be important to rule out common variable immune deficiency through specific blood tests of IgG subclasses (IgG1, IgG2, IgG3 and IgG4). In our study of 100 patients with POTS, the prevalence of CVID, generally a rare form of immunodeficiency, was much higher than what is expected in the general population. Additionally, other causes of small fiber neuropathy (and POTS) should be ruled out, including autoimmune disorders and Lyme disease, both of which can result in altered immune system and various infections. In general, POTS isn't considered to cause or be associated with multiple infections; rather, POTS is consequence of the underlying etiology that is causing your multiple infections and other health problems. Dr. Svetlana Blitshteyn, MD Dysautonomia Clinic Q: I have Pure Autonomic Failure (PAF). While I have seen “weakness” listed as a possible symptom, I have found no further information than that description. If weakness is related to PAF, what is the medical understanding of why that occurs. Is there any treatment for it beyond the usual attempts to increase blood pressure? While it would be safer to limit walking when this is a problem, does that risk a loss of muscle mass? Merilee A: The weakness is usually related to the drops in blood pressure when standing or with activity. We would encourage activity below the threshold of feeling like you are going to faint. Cooler environments will help as the heat can make this worse. Dr. Satish R. Raj, MD, MSCI University of Calgary | Vanderbilt University Q: I was put on Concerta and I feel so bad. My bp is normally around 117/70. Since beginning the medication, my BP has increased dramatically to 195/77. Is it possible the medication can cause this? -Tyla A: Yes. Concerta is a stimulant that blocks the norepinephrine transporter. The net effect is that when your sympathetic nerves release norepinephrine, you are not able to clear it as well while on the Concerta. It can create a "hyperadrenergic state". Dr. Satish R. Raj, MD, MSCI University of Calgary | Vanderbilt University Q: I would appreciate any support regarding the following. My dysautonomia has been a big source of anxiety over the years, as I never know when I am going to have symptoms and what they will be and whether my current mix of medications will control the symptoms. Are there certain anti-depressants that may be better for anxiety/depression with dysautonomia? I happen to have a tendency for hypotension with POTS. SSRI's vs. SNRI's? Preferably an antidepressant that does not have extreme withdrawal symptoms like Effexor/venlafaxine? – Karen S., M.D. A: SNRIs can worsen tachycardia in some patients due to its blockade of the norepinephrine transporter. SSRI like sertraline or citalopram should not have this adverse effect and are often well tolerated. Dr. Satish R. Raj, MD, MSCI University of Calgary | Vanderbilt University
  14. SarahA33

    Hyperpots?

    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
  15. SarahA33

    Uncommon(?) POTS symptoms

    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?
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