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Surviving and Thriving with Chronic Illness

Category: "Hydrocephalus"

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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 73 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 34 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 41 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 14 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 12 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 11 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 24 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 15 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 24 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 20 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 59 Comments | View

Video: The Magic of Magnesium

Dr. Collins writes an excellent paper on the importance of magnesium in our diet. This is especially important for those of us with connective tissue disorders such as Ehlers-Danlos syndrome. Dr. Diana summarizes key points in her paper and offers her thoughts. A MUST SEE! http://prettyill.com/downloads/Magnesium_and_EDS_by_Heidi_Collins,_MD.pdf In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Orthopedic Issues, Pain Control, POTS 13 Comments | View

Video: Clinical Trials!! How to Participate

Clinical trial pretesting is STARTING ON OCT 9! No charge to you! Chronic fatigue (or M.E.), Multiple Sclerosis, Rheumatoid Arthritis, chronic endometriosis, Fibromyalgia, Dysautonomia with EDS (or joint hypermobility), Chronic Lyme Disease. Limited number of patients can be accepted; by appt only. Contact us today!!!! In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Pain Control, POTS, Vascular abnormalities 28 Comments | View

Video: Thrombosis anyone? MTHFR results!

MUST SEE if you have an autoimmune or neurodegenerative condition. Our risk of thrombosis. Dr. Diana shares the results of her genetic tests from "23andme". Does she have the MTHFR genetic defect? In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Pain Control, POTS, Vascular abnormalities 15 Comments | View

Video: My POTS is gone—was it angioplasty? Uh, no.

POTS, one aspect of dysautonomia is GONE for me. Working with the root of the problem (as opposed to treating the symptoms via salt-loading, etc) may be the key for many of us with dysautonomia (EDS, chronic fatigue, fibromyalgia, M.S., chronic Lyme, etc). Setting up clinical trials now. If interested, please send your contact information to "volunteers@Prettyill.com". If you'd like to help, please let me know! smile In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, POTS, Vascular abnormalities 10 Comments | View

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Resource Results

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

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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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

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

TheEyeDocBlog.com

Dr. Diana’s hubby’s blog. Dr. Rich Driscoll has numerous entries about Ehlers-Danlos syndrome, and the ocular effects of connective tissue disorders. Just click on areas of interest in his word cloud to the right.

Online Resources In: Ehlers-Danlos, Hydrocephalus, POTS, Vascular abnormalities

Poem to Dr. Diana from a Patient

Sweet poem of thanks to Dr. Diana from a patient and fellow spoonie. Uplifting and thoughtful.

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

External Communicating hydrocephalus. Early findings in congenital communicating hydrocephalus.

External Communicating hydrocephalus. Early findings in congenital communicating hydrocephalus.

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

Article concerning IIH and chronic daily headache

“Utility of CSF pressure monitoring to identify idiopathic intracranial hypertension without papilledema in patients with chronic daily headache.

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

Mast Cell Activation Disease a Concise Practical Guide for Diagnostic Workup and Therapeutic Options

The new protocol for Mast Cell Activation Disease!

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

NOW COMPLETED Head Circumference Growth in Children with Ehlers-Danlos Who Develop…

This trial is NOW COMPLETED.
This trial involves NO TRAVEL and NO COST to you!
It is known that 33-50% of Classic and Hypermobile Ehlers-Danlos Syndrome patients eventually develop dysautonomia, otherwise known as “POTS” (Postural Orthostatic Tachycardia Syndrome). Some of these patients develop dysautonomia as a result of a retroflexed odontoid, Chiari 1 Malformation or cranial settling and the resulting basilar impression. Many Ehlers-Danlos patients suffer with the same symptomology with no evidence of a cause according to MRI imaging.

It is the author’s hypothesis that low-level External Communicating Hydrocephalus appears to be responsible for the constellation of autonomic and cranial nerve symptoms, and if present in the very young, an analysis of head circumference growth in the first 15 months of life should reflect abnormally rapid head growth,
supporting this hypothesis. clinicaltrials.gov NCT 01367977

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

Head Circumference Growth in Children who Develop Multiple Sclerosis later in life

This trial involves NO TRAVEL and NO COST to you!
Multiple sclerosis patients commonly develop generalized ventricular dilation with or without cerebral atrophy over time. Case studies in the literature have noted some multiple sclerosis patients develop the typical “normal pressure hydrocephalus” triad of dementia, gait disturbance and incontinence which were responsive to shunts.

Many patients with connective tissue disorders (Ehlers-Danlos Syndrome) develop Multiple Sclerosis and studies indicate that in the Multiple Sclerosis population, there exists over 10% more Ehlers-Danlos patients than in the normal population.

Because studies are indicating a form of external communicating hydrocephalus in the Ehlers-Danlos population, the author hypothesizes the same type of hydrocephalus may occur in the Multiple Sclerosis population.

To evaluate this hypothesis, investigators will retroactively evaluate the head circumference of Multiple Sclerosis patients between birth and 15 months (before the skull sutures have closed).
clinicaltrials.gov NCT 01377805

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In: Chronic Fatigue, Hydrocephalus, Multiple Sclerosis, Vascular abnormalities

EDS Diagnostic Approach

Differentiating the different types of EDS

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In: Chronic Fatigue, Ehlers-Danlos, Hydrocephalus, Orthopedic Issues, POTS

Echocardiographic Findings in EDS

Cardiac complications discovered with EDS

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

Handout for your eye doctor.

Bring this with you next time you visit your eye doctor.

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In: Hydrocephalus

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