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  • SPECIAL EVENT:  If you missed the premiere of Dr. Suleman's presentation, "Get in the Know:  An Overview of POTS Today", you can still watch the video on our  YouTube Channel   Next week's session:  "COVID-19 and Dysautonomia: What is Known and What is not" with Dr. Svetlana Blitshteyn.  Click below to read about the rest of the sessions happening throughout the month.  


SPECIAL EVENT: Leading POTS Doctors to join DINET for a Speaker Series in October and you're invited!


DINET will bring the experts to you with 4 speaker sessions about POTS throughout the month of October. Learn more about the disorder, the latest research and treatments, the connection to COVID and a roundtable discussion with professionals about healthcare and the patient doctor connection. Have questions for the doctors? Send your questions now to webmaster@dinet.org  Select questions will be answered live during the sessions.   Don't miss a chance to get your questions answered by the leading experts in the field.

Sessions will premiere live on our YouTube Channel.  Subscribe now to the channel so you won't miss a thing.   



A special thank you to our sponsor Banana Bag Oral Solutions for helping us bring you this speaker series. Banana Bag Oral Solution offers the benefits of IV hydration therapy without the IV.  and provides high dose, water soluble, B-Complex Vitamins helping replenish nutrients lost to chronic illness such as POTS. Please visit their site today to learn more about their products. https://www.bananabagdrink.com

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Thanks for putting this series on Ellen, Lauren and others. I'm interested in what others thought of the 1st session with Dr Suleman. Hearing the average POTS patient has 32 symptoms which they have to deal with daily was reassuring, particularly when in light of the comment that if a Dr has a patient talking about more than 3 symptoms they think they may need to see a psychiatrist! All my daily symptoms are not in my head!

I also have Thoracic Outlet Syndrome, which I'm currently getting physio for. My symptoms have improved a bit since Sept, when I started physio for my TOS, started walking and doing slow strength training exercises most days, and figuring out what diet seems to work best for me - 95% meat and eggs, some lemon juice, garlic, lots of salt, pepper and a bit of onion. This diet is obviously extreme, but on this video Dr Dawn Leighton, MD said that an animal based diet & strength training dramatically helped her Ehlers-Danlos Syndrome and POTS. Many people have told success stories of how an animal based diet have helped their autoimmune disease

Interestingly, one of my sons has Ulcerative Colitis, which is caused by autoimmune disease. He is always low on energy, has trouble remembering things and has hypermobility. I have double-jointed elbows and hypermobile shoulders. 

I've noticed that my skin on my arms and legs is loose, and I suffer from severe brain fog and constant headaches. It actually feels like my head is not getting enough blood to it. In 2013 an MRI found I had mild Cerebrovascular Disease found (reduces the flow of blood through the brain). 



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@David Smith  Thank you so much David for the kind words about the series so far.  The research about 34 symptoms per day blew my mind as well.  We just go through our days adjusted to our symptoms without realizing how much they permeate our time and our health.  

It is very interesting and coincidental that you mention the diet restrictions.  Dr. Blitshteyn, who will be presenting the 2nd session in our series, spoke about COVID and Dysautonomia.  However, she mentioned that she has been working on a study that suggests that a gluten-free diet improves symptoms.  There is an article by a nutritionist on Dr. Blitshteyn's site for the Dysautonomia Clinic that refers to the study - 

https://www.dysautonomiaclinic.com/why-glutens-gotta-go/   You may find it interesting.  While you don't mention the exclusion of gluten specifically in your diet, it clearly is gluten-free and centered on increased protein, which Dr. Blitshteyn has also suggested.   Her session will be live next Tuesday, 10/19 at 1 pm on our YouTube channel. 

Dr. Blitshteyn's session on COVID-19 and Dysautonomia is fascinating.  The research springing from COVID long-haulers syndrome is sparking much research and benefits to all of us who have been struggling for years with autonomic dysfunction and autoimmune disorders.  It may be the only positive thing to come out of the nightmare of COVID.  

Dr. Raj will be speaking about research and treatment, diagnosis of POTS on Tuesday, 10/26 at 1 on YouTube   His research centers on POTS but I find so much of the information also relates to most forms of autonomic disorders.  That may be beneficial to you as well. 

Again, thank you for writing and I am so glad you found the first session as interesting as we did.  I hope you get as much out of the remaining sessions.

Take care and best wishes for improved health for you and your son.


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