Helpful Sites and Whatnot

When you are diagnosed with some weird-hardly anyone has heard of-much less treated illness; you tend to do a bunch of research on the internet in order to find out as much as you can.

This can be good thing as well as a bad thing. You will find (as I did) that sometimes having too much information can be quite daunting, not to mention depressing and scary. I have looked into Facebook groups, online medical sites, blogs etc. I try to find as much literature as I can that might help explain and also help me to better understand my condition.

Disclaimer: I am not a physician, nor do I have medical training. The following sites are simply sites that I have found to be either helpful, informative and/or entertaining (in the midst of this illness).


Informational sites:

http://dinet.org/
This site is also called, POTS Place: A Guide to Postural Orthostatic Tachycardia Syndrome.
DINET provides information and personal stories on several types of dysautonomia, with a focus on the following: POTS, NCS, PAF, and MSA. 
It has a wealth of information including a forum that you can join to ask questions, receive feedback, get encouragement and know that you are not alone on this crazy rollercoaster ride. Personally, this is my go-to site.

http://www.dysautonomiasos.com/#
Dysautonomia SOS: Searching Out Solutions. They "are a nonprofit organization providing resources, medically accurate information, and raising money for research. We are focused on Postural Tachycardia Syndrome (POTS) and the chronic Orthostatic Intolerance disorders.​"

http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm
This is from the National Institute of Neurological Disorders and Stroke. This particular page on their site is a Dysautonomia Information page.

http://search.cardiosource.org/vivisimo/cgi-bin/query-meta.exe?v:sources=acc-bundle&v:project=acc&query=postural%20orthostatic%20tachycardia%20syndrome&author=0
This is actually a page from http://www.cardiosource.org/. The above page however has a plethora of information and journal articles related to Dysautonomia.

http://prettyill.com/
"Dr. Diana, both a doctor (therapeutic optometrist) and a patient (on professional disability), offers help and hope for Multiple Sclerosis, Ehlers-Danlos Syndrome, Dysautonomia, POTS, vascular abnormalities, Chronic Lyme, Chronic Fatigue and 'Fibromyalgia.'"

http://www.dynainc.org/
Dysautonomia Youth Network of America, Inc. This is a website devoted to children and teens that have dysautonomia as well as their caregivers.

Articles:

http://www.dysautonomiasos.com/#!psychology-and-dysautonomia/c20ox
Article on psychology and dysautonomia written by a former Neuropsychologist and fellow postie

http://download.journals.elsevierhealth.com/pdfs/journals/0025-6196/PIIS0025619612008968.pdf
Article from Mayo about POTS. This is quite a comprehensive article and I found this particular article to be of most help to me in explaining many of the intricacies of this illness.

http://crm.cardiosource.org/Learn-from-the-Experts/2013/02/POTS-Diagnosis-and-Treatment.aspx This is a recent article (2/2013) from American College of Cardiology: CardioSource

http://www.medhelp.org/tags/health_page/36439/HyperAdrenergic-POTS/Further-Reading-on-Dysautonomia?hp_id=696 A collection of information on Dysautonomia from MedHelp

http://circ.ahajournals.org/content/117/21/2814.full.pdf+html This is an article written by one of the foremost Doctor's in the field of POTS, Dr. Blair P. Grubb

http://clinicalposters.com/news/2011/0325-dysautonomia-mitochondria-pots.html Interesting article describing Dysautonomia via Just Mildly Medicated FB page.

Blogs:

http://bobisdysautonomia.blogspot.com/  Living With Bob

http://justmildlymedicated.blogspot.com/

http://hopealways.wordpress.com/

http://www.mirandapowell.blogspot.com/

http://livingwithdysautonomia.blogspot.com/

http://thedysautonomiacs.blogspot.com/

http://lethargicsmiles.wordpress.com/whats-pots/pots-101/

http://letsfeelbetter.com/


Facebook:

https://www.facebook.com/#!/groups/DysautonomiaDivas/

"Dysautonomia Divas is a support & empowerment group for women who have been affected by Dysautonomia. This is a place fo...r open, honest communication. Our FB page is also a place to share information and tips on living like a Diva, despite our limitations."

https://www.facebook.com/#!/groups/potsrecovery/

"For people diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and Orthostatic Intolerance (OI), follow me o...n my blog @ potsrecovery.com as I document my progress towards recovery while on the research treatment program by Dr. B. Levine of Texas. THIS FACEBOOK GROUP is for posting articles and studies of interest to people looking to find out more about thier condition. WELCOME!!"

https://www.facebook.com/#!/groups/75183049224/
"This group was created to raise awareness about Dysautonomia. Its main focus is to spread awareness, provide an open forum for discussions, questions, ideas, helpful suggestions, education, etc. The purpose is to promote positive, accurate and helpful information. In doing so members are asked to not use profanity or criticize other groups, ideas or other members."

https://www.facebook.com/#!/groups/170010793082480/  Christian Group

https://www.facebook.com/#!/groups/sunnycabe/ Christian Group

https://www.facebook.com/#!/groups/dysautofriendfinder/?fref=ts

"This is a group to connect those that have Autonomic Nervous System Disorders (POTS, Dysautonomia, NCS, Orthostatic Into...lerance). I hope this group will make it easier for you to find people near you that know what you are going through.
Please find your location in PHOTOS, if you don't see your location post under the question mark or message me (Nicole Sherman)
This is a very new group, hopefully it will help you.
Also look at the events to see if there is one near you. I will also be adding a note that will show support group meetings.
If you don't want to get emails from the group, click NOTIFICATIONS at top right and click OFF. Thanks!"

https://www.facebook.com/#!/groups/374329345913324/?fref=ts

"This is a group for parents that suffer from POTS or other Dysautonomia conditions. Also for people thinking of having kids or pregnant with POTS/Dysautonomia. ***Not for parents with kids with POTS - sorry!"

https://www.facebook.com/groups/potsyparadise/
"POTSY Paradise is a place where those with a form of Dysautonomia, and related conditions, can come together to talk about their interests, dreams, hopes, lives. While we have Dysautonomia, or take care of someone who does, we rarely talk about it here. In Paradise, we are more than our illness. We are a group of people, who share a unique bond--one founded in illness, but kept together through friendships that form by sharing more about ourselves. All that is said in POTSY Paradise, respectfully stays in POTSY Paradise. This is our GETAWAY from our illness, a place we can talk and be us, not our illness. Welcome, my friends, to POTSY Paradise."

Books:

POTS: Together We Stand Riding The Waves of Dysautonomia: A Survival Guide
Written By: Jodi Epstein Rhum, Edited for Medical Content By: Svetlana Bleishteyn, MD
http://www.amazon.com/POTS-Together-Stand-Riding-Dysautonomia/dp/1466371501
This is a book written by woman who has an "undiagnosed mild case of POTS", as well as "four children, two of whom have POTS and one who has Ehlers-Danlos Syndrome." "She understands the complexities and frustrations of this syndrome, first hand. Jodi, who is a former middle school teacher, has devoted herself to POTS Awareness, since her children's diagnosis [over] three years ago." (pg. 13)

Experience Hope Through His Presence: Jesus Today By: Sarah Young, Author of Jesus Calling
http://www.amazon.com/Jesus-Today-Experience-Through-Presence/dp/1400320097/ref=sr_1_1?ie=UTF8&qid=1356120905&sr=8-1&keywords=jesus+today
This is written by an author that has experienced chronic illness due to Lyme Disease. I use it as a daily devotional of sorts. It is quite inspirational and encouraging. The author writes from the perspective of Jesus speaking to you. Love it!!

Coping With Chronic Illness By: H. Norman Wright and Lynn Ellis
http://www.amazon.com/Coping-Chronic-Illness-Migraines-Fibromyalgia/dp/0736927069/ref=sr_1_1?s=books&ie=UTF8&qid=1356121388&sr=1-1&keywords=coping+with+chronic+illness

Peace in the Storm: Meditations on Chronic Pain and Illness By: Maureen Pratt
http://www.amazon.com/Peace-Storm-Meditations-Chronic-Illness/dp/0385510799/ref=sr_1_1?s=books&ie=UTF8&qid=1356121489&sr=1-1&keywords=peace+in+the+storm