Be Aware Serious POTS Imposter – CSF Leaks

The symptoms of CSF Leaks (cerebrospinal fluid leaks) mimic those symptoms of POTS. However, a CSF leak is a more serious medical condition requiring prompt diagnosis and treatment. CSF Leaks can occur anywhere along the length of the brain-spinal cord pathway. CSF (cerebrospinal fluid) constantly produced in the brain circulates around and bathes the brain and spinal cord serving to cushion and protect these critical nervous organs. A continuous thick sac-like membrane called dura covers the brain and spinal cord and tightly encloses the cerebrospinal fluid space.

When there is a tear or hole in the protective dura sac, CSF leaks or escapes from the dura sac. Leakage of the CSF via a defect results in decreased volume of cerebrospinal fluid that bathes and sustains the brain and spinal cord. In individuals with low CSF volume and loss of brain buoyancy due to the leak, standing results in the brain descending within the skull. Sinking of the brain to a smaller region of the skull causes compression on the lower brain and pressure-related symptoms that can mimic POTS.

The most common symptoms shared by patients with both POTS and CSF Leak include headaches, nausea, dizziness, visual disturbances, fatigue and “brain fog.” Both patients generally have worsening of symptoms when sitting or standing upright, but the severity of the disability may vary from mild to incapacitating. Characteristically, CSF Leak headaches and associated symptoms come on more quickly upon assuming an upright posture, but that is not always true. Additional symptoms more unique to CSF Leaks include pain face, neck, arms and shoulder regions, facial and arm numbness, changes in smell, taste and hearing and difficulty with balance during walking. Recognition and diagnosis of patients with CSF Leaks, similar to recognition and diagnosis of those with POTS, is difficult and often delayed. Low awareness of both illnesses contributes to the lack of their recognition for months or years.

Most commonly, CSF Leaks occur following head, neck or spinal surgery, falls, sports injuries or motor vehicle accidents. Those leaks related to trauma at the base of the skull are often associated with leakage of clear CSF from the nose or ear. These patients report drainage from the nose, salty or metallic taste in mouth, or sense of drainage down back of throat or ear. Leakage of CSF from other locations along the brain-spinal cord pathway occur “silently,” and require extensive imaging procedures to localize. Those leaks associated with lumbar punctures (spinal taps) and spinal anesthesia may be associated with a temporary headache, but usually close spontaneously.

More recently, spontaneous cases of CSF Leak occurring without an apparent precipitating event or following an insignificant activity like straining, bending or lifting have been recognized among patients with connective tissue disorders. Patients with inherited Ehlers-Danlos syndrome and Marfan syndrome manifest defective and weakened connective tissues generally, and are prone to have co-existing POTS. Thus, in addition to increased repetitive stress injuries, joint pains, dislocations and arthritis, a spontaneous tear of the spinal dura sac with a leak can occasionally occur. In fact, patients with POTS or POTS-like symptoms and weakened connective tissues are those most frequently discovered to have spontaneous tears of the dura and CSF leakage. Those with a CSF dura defect are at greater risk to acquire a life-threatening infection of the brain, meningitis.

If you have POTS symptoms and additionally have symptoms suggestive of a CSF Leak, it would be best to schedule an appointment with a neurologist as early as feasible for an evaluation.

Dr. Scheldon Kress is a specialist in Internal Medicine with over 30 years of clinical experience caring for patients and pioneering behavioral management strategies to help patients make healthy lifestyle changes with respect to weight loss, stress management, diabetes management and smoking cessation. Passionate about helping patients manage difficult to diagnose medical conditions, he became interested in POTS when several family members and friends struggled with the symptoms, proper diagnosis and effective management of POTS.

Observing the challenges of POTS first-hand, he began to provide POTS patients and their families with a better understanding of causes and potential treatments, while at the same time teaching them how to utilize an effective behavioral change program to manage their POTS symptoms. This self-directed program is a must-read for patients and families dealing with POTS to empower them to take back their lives and achieve POWER over POTS.

Five Star Reviews

Extremely helpful and informative

My daughter has been suffering these symptoms for months. She, like many others, has been misdiagnosed with neurological diseases and mental illness. Even with her heart rate being 30 beats different and multitude of symptoms, doctor was still skeptical because of her blood pressure not changing. Doctors are not educated on this syndrome and it’s extremely hard to find one that is. This has brought a lot of stress to our family, however, as her mom, I persevered, held my own and kept on researching. I came across POTS, educated myself and now we know what’s wrong and how to fix it. This book was one of the books to help us get there. Thank you for publishing this extremely helpful information!

- Praha2014, Amazon

I would like to thank Dr. Kress for writing this book and bringing much needed attention to this illness. POTS is something I have struggled with for many years and I appreciate how thorough and descriptive the book is. The first part of the book expertly describes the ins and outs of finding a diagnosis and how to recognize POTS in a patient. The second section of the book is perfect for families trying to navigate the lifestyle changes that a patient and the rest of the family go through in order to make recovery easier. The book covers all the bases for someone who is looking for more information about POTS. I will most definitely be sharing this book with friends and family and continue spreading the word of this most amazing book.

- Mary Beth, Amazon

The Best POTS Book Available!

This book was extremely helpful in helping my family understand and navigate POTS. The medical information is outstanding and the explanations for the behavioral changes necessary to improve POTS symptoms are easy to understand. I would recommend this book to anyone who is interested in learning more about POTS or wants to lessen their POTS symptoms to feel better. It really is a fantastic book and I like that it is written by a medical doctor who really understands how POTS affects every aspect of a patient's life.

- Angelina, Amazon

This book was incredibly helpful in educating me and helping me manage my child's difficult medical condition.

- Karen, Goodreads

Additional Information

I hope you find my book to provide helpful information on the subjects discussed. The book is not meant to be used, nor should it be used, to diagnose or treat any medical condition. For diagnosis or treatment of any medical problem, consult your own physician. The publisher and author are not responsible for any specific health needs that may require medical supervision and are not liable for any damages or negative consequences from any treatment, action, application or preparation, to any person reading or following the information in this book. References are provided for informational purposes only and do not constitute endorsement of any websites or other sources. Readers should be aware that the websites listed in this book may change. The author is no longer in private practice and not in a position to respond to any medical inquiries.