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Surviving and Thriving with Chronic Illness

Category: "POTS"

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Video: Free MCAS wallet card!

Dr. Diana offers a wallet card for MCAS (Mast Cell Activation) sufferers. She discusses what happened to her and why she carries this card with her. Important for most EDS/POTS and MS patients. In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Mast Cell Disease, POTS 52 Comments | View

Video: POTS - What Have We Been Missing? Part 3

Dr. Diana Driscoll discusses missing pieces of the puzzle for POTS and Chronic Fatigue Syndrome. Correct the underlying problem, don't just treat the symptoms! In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, POTS, Vascular abnormalities 115 Comments | View

Video: POTS—what have we been missing? Part 2

Dr. Diana Driscoll reveals missing aspects of POTS and Chronic Fatigue Syndrome that have been missed in the past. Part 2 concerning fatigue and gastroparesis is groundbreaking! Thank you to The University of Houston College of Optometry In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, POTS, Vascular abnormalities 52 Comments | View

Video: POTS - What Have We Been Missing - Part 1

The University of Houston College of Optometry welcomes Dr. Diana Driscoll as she discusses "POTS -- What Have We Been Missing?". Dr. Driscoll presents the role of abnormal intracranial pressure in many patients as the first clue that we are missing too much in this condition. Dr. Driscoll speaks as a patient and a mom of patients who were able to recover from disabling POTS. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Mast Cell Disease, POTS, Vascular abnormalities 71 Comments | View

Video: POTS Care Opens!

The day has arrived! We are happy to announce the opening of POTS Care -- geared to help patients with Idiopathic POTS (often found with EDS, Chronic Fatigue Syndrome or Chronic Lyme disease). Dr. Diana, a former patient with POTS, is now part of a team helping those with this form of POTS that doesn't usually respond well to symptomatic treatment. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, POTS 58 Comments | View

Video: Mast cell disorders—New Protocol (updated)

Dr. Diana discusses the new protocol for diagnosing mast cell activation syndrome (MCAS), and asks us to consider -- could other histamine producers be to blame? In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Mast Cell Disease, POTS 18 Comments | View

Video: Diamox and Alkalinity (updated)

Have IIH or hydrocephalus and need help with Diamox? Staying alkaline helps -- here's how. In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Multiple Sclerosis, POTS 22 Comments | View

Video: Gastrocrom costs HOW MUCH?! (updated)

Need help with mast cells (MCAS) and POTS? Can't afford Gastrocrom? Help is here! In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, POTS 22 Comments | View

Video: Let’s talk about Diamox! updated

Diamox can be used to lower intracranial pressure in folks with IIH and hydrocephalus allowing many to avoid brain shunts (and many patients with EDS can avoid neck fusions and Chiari surgery! The use of Diamox can be tricky -- let's chat about that! In: Ehlers-Danlos, Hydrocephalus, Multiple Sclerosis, POTS 14 Comments | View

Video: The Driscoll Theory Validated!

Join Dr. Diana as she discusses how the experts in EDS, Joint Hypermobility Syndrome, and autonomic function ("POTS", dysautonomia, etc) speak about how treatment based on The Driscoll Theory results in definite improvement of patient symptoms! Have you been waiting to hear about validation of The Driscoll Theory? This will get you started in understanding the experiences of some of the top experts in the field. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Pain Control, POTS, Vascular abnormalities 34 Comments | View

Video: Your eyes and EDS - What is truth, what is myth?

Dr. Diana focuses on the ocular truths and myths related to collagen disorders, such as EDS (Ehlers-Danlos syndrome). Are we more prone to glaucoma or macular degeneration? What is up with this Dry Eye Syndrome? Are we candidates for LASIK? These questions and more are discussed, along with announcements about current and upcoming research and medication. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, POTS 23 Comments | View

Video: Hyperadrenergic POTS - Why so much suffering?

Dr. Diana, as patient, explains a few reasons why hyperadrenergic POTS patients suffer so much. POTS/dysautonomia involves many "invisible" systems that can be difficult to explain to doctors and loved ones. This video will help explain what is happening and what can be done to help the patient and those who care for them. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Mast Cell Disease, Pain Control, POTS 18 Comments | View

Video: RAW DaM Data!

Dr. Diana discusses the importance of getting a copy of your RAW data! Essential for rare disease and invisible illnesses. Thanks to my friends at www.ACMImimi.org for their great work with music and medicine! Direct link to their video on DaM Data is here: http://youtu.be/0gpk-fbfg4Y In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Orthopedic Issues, Pain Control, POTS, Vascular abnormalities 39 Comments | View

Video: Urine in our Invisible Illnesses! Eww…

Dr. Diana's research into invisible illnesses continues with your help! Do you have M.E./CFS (Chronic Fatigue Syndrome), dysautonomia, POTS with or without Ehlers-Danlos syndrome or Joint Hypermobility, rheumatoid arthritis, Chronic Lyme Disease, Multiple Sclerosis or Lupus? Let's look at your urine! In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, POTS 22 Comments | View

Video: Spoonie Relationships and Dr. Sharon

Dr. Diana and Dr. Sharon, psychiatrist and spoonie with EDS and POTS discuss relationships and Valentine's Day ideas. Relationships can be difficult for the healthy! Listen in for their discussion of our special challenges and hear some thoughts as to why traditions are still important in a relationship. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Pain Control, POTS 94 Comments | View

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NOW COMPLETED: Gastroparesis and IBS Treatment Trial Sign Up Begins - Instructions here!

Instructions and information about signing up for the treatment trial for gastroparesis, chronic constipation, IBS, delayed gastric emptying (etc) as found in dysautonomia in Ehlers-Danlos syndrome, Joint Hypermobility syndrome, POTS, Chronic Fatigue Syndrome (or M.E.) and fibromyalgia. This is a PDF and you will need Adobe Acrobat to see it (free download).

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View | Studies

In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, POTS

Should dysautonomia patients get the flu vaccine?

It’s a tough call for many of us—should dysautonomia patients get the flu vaccine? We often times will flare with symptoms after the vaccine, but is the flare worse than the flare we’d experience with the flu? It’s a decision each one of us grapples with every year! Here’s an abstract concerning this tendency to flare.

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View | Articles & Hand-outs

In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Mast Cell Disease, Multiple Sclerosis, POTS

New gene found for EDS!

Yet another new gene found for EDS! It’s name? B3GALT6 (kinda’ catchy!)

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View | Articles & Hand-outs

In: Ehlers-Danlos, Fibromyalgia, POTS

EDS Hypermobility type may be the same as TNX deficiency?

MUST READ article explaining how TNX deficiency may account for most of the Hypermobility forms of EDS! Better yet? This deficiency can actually be beneficial to the heart!

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View | Articles & Hand-outs

In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, POTS, Vascular abnormalities

A case of EDS and recurrent venous thrombosis—ONE CASE?

A case of venous thrombosis in EDS. ONE CASE, Dr. Diana asks. Her research is showing a high prevalence of venous thromboses in EDS patients, even without genetic abnormalities of clotting.

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In: Ehlers-Danlos, Fibromyalgia, Multiple Sclerosis, POTS, Vascular abnormalities

Diet Sodas Heighten Risk for Vascular Disorders

Important information for those of us with vascular disorders. Watch those diet sodas!

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In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, POTS, Vascular abnormalities

Patient Develops Dysautonomia When Struck by Lightning

A patient develops dysautonomia when struck by lightening. No one knows why he develops Post Traumatic Stress Syndrome! wink

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In: Chronic Fatigue, Coping, POTS

Salt linked to autoimmune diseases

One reason Dr. Diana is trying to find and treat the SOURCE of POTS / Dysautonomia . EDS/POTS patients are prone to developing a vast array of autoimmune disorders, including M.S., Rheumatoid Arthritis, psoriasis, etc. This article explains why the typical recommendation of salt loading may harm us (and our endothelium) in the long run. A MUST READ!

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View | Articles & Hand-outs

In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Multiple Sclerosis, Pain Control, POTS, Vascular abnormalities

Our Life with Ehlers-Danlos Syndrome

Hear of one mother’s journey to help her teenage child, and their experience with The Driscoll Theory. Incredible, heart-warming and honest.

Online Resources In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, POTS

The Driscoll Theory® Newly Revised is now Available for Purchase

After much delay The Driscoll Theory® Newly Revised is now Available for Purchase as a downloadable PDF. We decided a PDF was the quickest way to get this information to you. The PDF is not printable; however if there is enough demand we’ll see about producing The Driscoll Theory® as a book.  Click on the icon or link or icon to buy it now. Buy Now

Online Resources In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Orthopedic Issues, Pain Control, POTS, Vascular abnormalities

EDS Today

A strong advocacy group bringing awareness, education and hope to the entire EDS community!

Online Resources In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Orthopedic Issues, Pain Control, POTS, Vascular abnormalities

Potsie Mama

Great blog about POTS, EDS and family…making it all work!

Online Resources In: Coping, Ehlers-Danlos, Fibromyalgia, Pain Control, POTS

Low iron storage and anemia in adolescents with POTS

Another clue and something to watch for in our kids. Anemia and low iron storage is common in POTS / dysautonomia. It’s important to have the source of the anemia evaluated.

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In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, POTS

NOW COMPLETED: Symptoms Checklist for EDS

A checklist for your symptoms. If you have ever had a symptom, please check “yes”. You can return this form to me by emailing it back to Clinical_Trials@Prettyill.com. Thank you so much for helping us all!

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View | Studies

In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, POTS

Illness Sucks but I find the Funny!

Dealing with a chronic (especially invisible) illness can be more than trying! Need a chuckle? I love this site to share some of our outrageous and silly moments. Enjoy!

Online Resources In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Multiple Sclerosis, Pain Control, POTS

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