Information for Patients
All information contained in this page is provided as information only and is not a substitute for medical advice from a medical professional.
We understand that recurrent meningitis is a poorly researched rare disease, and therefore we believe that patient experiences are our best source of information. Please understand that you are not alone: we are all in this together and together we can find answers. However, it is important to remember that although we share a common illness, our bodies react differently to medications, supplements, foods etc. Please consult with your doctor before taking any medications or supplements.
We have noticed that it is common for patients to report the condition getting worse with age. Because pain lacks visible evidence, some doctors have difficulty understanding a patient’s pain. Patients can be told that their symptoms are all in their heads, which is another reason we need more research to substantiate these experiences. Pain management is important with this disease. Being in pain causes an increase in blood pressure and intracranial pressure as well as stress to the body. Anecdotal evidence seems to support that stress alone can bring on an episode for many patients.
Lumbar punctures can be an important diagnostic tool. The lumbar puncture will reveal what disease-causing agents may be in the spinal fluid, and it is the only way to definitively tell what is causing your active meningitis episode. It is believed by some patients that multiple lumbar punctures can cause serious problems, this is why many patients only consider additional lumbar punctures after diagnosis if the symptom profile is different than usual. Lumbar punctures may continue to be recommended by some medical professionals to rule out other causes of a meningitis episode, however a new cause may be unlikely. These are concerns you need to address with your healthcare professional.
Due to its rare nature and lack of research on the topic, some doctors have never heard of recurrent viral meningitis (Mollaret’s). There is also a common misconception in the medical community that one cannot be diagnosed with meningitis twice. Initial research found that most recovered from this illness. Unfortunately, we do not have any evidence of this and most patients have suffered for years, and some have experienced episodes after long periods of relative calm.
It is recommended before seeing your healthcare professional to write down all your symptoms and allergies to medications. It is also important to take your current supplements and medications, including over the counter medications, with you to each appointment. This is because, in rare instances, some medications are found to be responsible for a patient’s recurrent meningitis, referred to as “drug-induced” meningitis.
Patient Reported Information
Most commonly reported patient symptoms (top 10)
Sensitivity to sound
Nerve pain in extremities
Most commonly reported treatments
(WARNING! DO NOT TAKE ANY OF THESE MEDICATIONS WITHOUT DOCTOR CONSULTATION)
Resources and Support Organizations
Meningitis Research Foundation (Global)
Meningitis Research Foundation is a leading UK and international charity that brings together people and expertise to defeat meningitis and septicaemia wherever it exists.
Meningitis Research Foundation of Canada (CAN)
The Meningitis Research Foundation of Canada has become an advocate for research and vaccination, a source of information, a focus for donation and funding, and a support for people who have experienced meningitis in their own lives.
NIH Genetic and Rare Diseases
GARD is a program of the National Center for Advancing Translational Sciences (NCATS) to provide access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.
University of Miami Brain Endowment Bank (USA)
The University of Miami’s Brain Endowment Bank™ is a National Institutes of Health (NIH) NeuroBioBank, one of six designated brain and tissue biorepositories in the nation.
The Brain Endowment Bank encourages brain donation to support medical and scientific researchers, who study the human brain in search of better medications and treatments, and ultimately, a cure for brain diseases and disorders.
Canadian Organization for Rare Disorders (CAN)
CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.
Caregiver Action Network (USA)
Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.
Center for Chronic Illness (Seattle, USA)
The Center for Chronic Illness is a nonprofit organization based in Seattle, Washington. CCI focuses on three main pillars in providing support and education to the chronic illness community: Emotional Well-being, Health Education, and Community.
Chive Charities (USA)
Chive Charities has changed the giving paradigm. As opposed to using the cause to raise awareness on behalf of the recipient, we encourage the recipient to let their story raise awareness for their cause. Donors are connected to the entire story from beginning to end – we watch our recipients go out into the world to do incredible things, and we are right beside them.
Confederation of Meningitis Organisations (Global)
The Confederation of Meningitis Organisations Inc. (CoMO) is an international member organisation working to reduce the incidence and impact of meningitis worldwide.
Rare Diseases Europe is a unique, non-profit alliance of over 700 rare disease patient organisations from more than 60 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.
Global Genes (Global)
Global Genes® is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®.
Meningitis Now (GBR)
We were the first meningitis patient group in the world, founders of the meningitis movement and the only charity dedicated to fighting meningitis in the UK.
National Alliance for Caregiving (USA)
Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focused on improving the lives of family caregivers. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, government agencies, and corporations.
National Organization for Rare Disorders (USA)
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Rare Disease Day (Global)
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.