Information on Recurrent Viral Meningitis (Mollaret’s)

Our Focus
We are currently focused on support, research, and advocacy for those with recurrent viral meningitis (Mollaret’s).

Focus

Recurrent Viral Meningitis (RVM)

(AKA Mollaret’s meningitis)

Our organization was originally started around the term Mollaret’s meningitis.  As time has passed the medical community has been moving away from eponyms to more descriptive names for conditions.  I.E. Viral meningitis is now herpes simplex meningitis or zoster meningitis, etc.  To better serve those out there with recurrent viral meningitis, and allow for the opportunity to grow in the future to help those with other recurrent meningitis types, we have renamed the association.  We will continue to focus on recurrent viral meningitis (Mollaret’s), but have placed other resources on our site for those that have other types of recurrent meningitis.  So the information you will see in the information section will focus on recurrent viral meningitis and can be used interchangeably with Mollaret’s meningitis.

What is recurrent viral meningitis (Mollaret’s)?

Recurrent viral meningitis (Mollaret’s) is meningitis that occurs more than once due to a viral infection.  The current known causes of recurrent viral meningitis (Mollaret’s) are herpes simplex virus type 1 (HSV-1), herpes simplex virus type 2 (HSV-2) and epstein-barr virus (HHV-4).

Definition according to the US Genetic and Rare Diseases Information Center for recurrent viral meningitis (Mollaret’s): “Mollaret meningitis (recurrent viral 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 (recurrent viral 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.”

Symptoms

Symptoms of a full-blown recurrent viral meningitis (Mollaret’s) infection include:

  • severe headaches
  • fever (only seen in about half of cases)
  • nausea
  • vomiting
  • sensitivity to light and/or sound
  • malaise
  • neck rigidity

Rarer symptoms include:

  • tachycardia
  • double vision
  • hallucinations

Because of the similarity in symptoms to benign migraine headache, sufferers of recurrent viral meningitis (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
  • changes in sight

Diagnosis

Recurrent viral meningitis (Mollaret’s) 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 recurrent viral meningitis (Mollaret’s), it can be extremely difficult to find medical professionals who have treated more than one or two cases.

Treatment

Currently, Acyclovir is the treatment of choice for recurrent viral 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 viral 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
  • hydromorphone (Dilaudid).

Anti-seizure medications:

  • Gabapentin (Neurontin)
  • Pregabalin (Lyrica)
  • Lamotrigine (Lamictal)

With recurrent viral 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 recurrent viral meningitis, those include:

  • phenylbutazonum
  • steroids
  • antihistamines
  • colchicine
  • estrogen.

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