Patients/Supporters

Information about Mollaret’s meningitis.

Information for Patients/Supporters

What is Mollaret’s meningitis?

“Mollaret meningitis is a rare type of viral meningitis that is characterized by repeated episodes of fever, stiff neck (meningismus), muscle aches, and severe headaches separated by weeks or months of no symptoms. About half of affected individuals may also experience long-term abnormalities of the nervous system that come and go, such as seizures, double vision, abnormal reflexes, some paralysis of a cranial nerve(paresis), hallucinations, or coma. Mollaret meningitis is poorly understood and the exact cause remains unknown. However, recent data suggests that herpes simplex virus (HSV-2 and, less frequently, HSV-1) may cause some, if not most cases. Other causes may include trauma and viral infections other than herpes simplex. There is no specific treatment, so management involves supportive measures such as rest, fluids, and medicine to relieve the fever or headache.” – Genetic and Rare Diseases Information Center

Diagnosis

Mollaret’s Meningitis can be diagnosed through lumbar puncture (spinal tap) in order to examine the cerebrospinal fluid (the clear, colorless liquid that fills and surrounds the brain and the spinal cord and provides a mechanical barrier against shock). Diagnosis is made by detecting Herpes simplex virus DNA in the cerebrospinal fluid. Early diagnosis may prevent prolonged hospital admissions, unnecessary investigations, and exposure to unnecessary medications, along with their associated costs. If a patient has had a recent head injury or a problem with their immune system, they may not qualify for a lumbar puncture because of a possible fatal brain herniation; therefore, a CT or MRI scan may be performed prior to any lumbar puncture. All of the different types of meningitis (viral, bacterial, fungal and parasitic) are diagnosed by the growing presence of bacteria in the spinal fluid, a sample of which is collected with the help of a lumbar puncture. The fluid will reveal if the CSF (cerebral spinal fluid) has raised or lowered white blood cell production.

There are no vaccines currently available to prevent the development of viral meningitis. Many people who have a rare disease understandably want to find healthcare professionals or researchers with knowledge of their condition. However, with a condition as rare as Mollaret’s Meningitis, it can be extremely difficult to find medical professionals who have treated more than one or two cases.

Symptoms

Symptoms of a full-blown Mollaret’s infection include severe headaches, fever, nausea, vomiting, sensitivity to light and/or sound, malaise, and neck rigidity. Rarer symptoms include tachycardia, double vision and hallucinations. Because of the similarity in symptoms to benign migraine headache, sufferers of Mollaret’s have often been misdiagnosed by medical personnel. Without proper care, symptoms can escalate to seizures and even coma. Thus, a greater understanding and knowledge of this disease will facilitate better patient care in emergency situations.

Periods of severe illness usually last 3-4 days, separated by weeks or months between recurrences. However, many sufferers experience milder relapses, which although debilitating, do not necessitate hospitalization.

Unfortunately, along with each recurrence, whether mild or severe, comes the risk of further disability. Nearly half of those with the disease experience long-term negative effects of the nervous system. Permanent disabilities that can develop over time include memory loss, difficulty retaining information, lack of concentration, abnormal reflexes, clumsiness, coordination problems, loss of balance, residual headaches, hearing problems, tinnitus, speech problems, dizziness, learning difficulties (ranging from temporary learning deficiencies all the way to long term mental impairment), tachycardia, epilepsy, seizures, paralysis, muscle spasms, cerebral palsy, loss of sight, and changes in sight.

Treatment

Currently, Acyclovir is the treatment of choice for Mollaret’s meningitis. Acyclovir has proven helpful in many cases, particularly when administered intravenously, where it can cross the blood/brain barrier. It is often the immediate treatment of choice for recurrences that require hospitalization. Some have also seen a reduction in recurrences from daily oral administration of Acyclovir, but it hasn’t been shown to definitively alter the recurrence of the Mollaret’s Meningitis.

Valcyclovir is another medication similar to Acyclovir that has also been found helpful. Other common medications also administered for the subsequent pain during recurrences include NSAIDS (Motrin, Advil), Hydrocodone (Norco, Vicodin Lortab), morphine, and hydromorphone (Dilaudid). Anti-seizure medications such as Gabapentin (Neurontin), Pregabalin (Lyrica), Lamotrigine (Lamictal) have also been used.

With Mollaret’s meningitis, it is difficult to measure the effectiveness of any drug therapy because the very nature of the disease is spontaneous and recurrent. The rarity of the disease also makes it difficult to create solid documentation of clinical trials studying the effectiveness of different antiviral drugs. However, there are some medications known to be contraindicated for the treatment of Mollaret’s meningitis, those being phenylbutazonum, steroids, antihistamines, colchicine, and estrogen.

For those that have obtained an allergy to Acyclovir, and other antivirals, Lysine seems to be effective at helping to minimize symptoms.

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AWaRDS Study: Adults with Rare Disorders Support Study

  What is the study about? In partnership with the National Organization for Rare Disorders, this is the first large-scale study about the information and psychosocial support needs of people living with rare disorders. The purpose of this research study is to assess...

Resources

Since Mollaret’s meningitis is a very rare disease, with few clinical trials and cases documented, much of the information we now know comes from the sufferers themselves. Mollaret's Meningitis Association has been created by and for sufferers of Mollaret’s. It is our goal to create a repository of all related information currently available, including not only current research and studies, but also the wealth of information acquired from personal experiences of those who suffer from this debilitating disease.

 

The following links have information regarding Mollaret's Meningitis, rare disease, or meningitis.

Support Organizations

Canadian Organization for Rare Disorders

Who is CORD? 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...

Rare Diseases International

What is RDI RDI is the global alliance of people living with a rare disease of all nationalities across all rare diseases. RDI brings together national and regional rare disease patient organisations from around the world as well as international rare disease-specific...

Center for Chronic Illness

Center for Chronic Illness ​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...

Confederation of Meningitis Organisations

The Confederation of Meningitis Organisations Inc. (CoMO) is an international member organisation working to reduce the incidence and impact of meningitis worldwide. CoMO brings together patient groups, health professionals and organisations, meningitis survivors and...

Global Genes

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®. What began as a grassroots...

Eurordis

EURORDIS 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. By connecting patients,...

Rare Disease Day

WHAT 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.The campaign targets primarily...

Patients Like Me

We've partnered with 500,000+ people living with 2700+ conditions on 1 mission: to put patients first Imagine this: a world where people with chronic health conditions get together and share their experiences living with disease. Where newly diagnosed patients can...

Caregiver Action Network

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. CAN...

Chive Charities

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...

Information Resources

National Patient Travel Center (US)

The Patient Travel Referral program a program of Mercy Medical Angels has many resources at its disposal to assist patients. Patient Travel Referral a program of Mercy Medical Angels More than 14,000 calls were received last year. After an initial screening of patient...

Meningitis Research Foundation

Meningitis Research Foundation is a leading UK and international charity that brings together people and expertise to defeat meningitis and septicaemia wherever it exists. Our vision is of a world free from meningitis and septicaemia. A world where effective...

UofM Brain Endowment Bank

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...

Meningitis Research Foundation of Canada

The MRFC began with a mother’s grief over the loss of her son to meningitis. Michael Longo wasn’t feeling well on Friday. Four days later, he died. When Kathryn Blain walked away from the hospital in Toronto after his death she wanted to know why… why Michael had...

Rare Disease Report

Rare Disease Report is a website and weekly e-newsletter that offers an independent voice for the Rare Disease Community. It strives to bring together medical, scientific, investment, regulatory, and advocate professionals interested in rare diseases and orphan...

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.

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