"I was diagnosed with ALS in November 2016. I had already noticed that something was wrong back in March of that same year. I stumbled because my left foot didn’t work as it should have when I tried to run. When my speech started to slur, I decided to see a doctor. After taking a variety of tests, I was finally diagnosed with ALS.
The Finnish health care clinic has a team of experts that includes a neurologist, speech-, physio- and occupational therapists, dietician, etc. They provide me with the officially accepted treatments and rehabilitation for ALS. I was prescribed Riluzole, but it was no good for me because of the side-effects (muscle weakness).
In addition to my speech problems, what was annoying me most was my inability to stop laughing at inappropriate times. The Finnish ALS Association (ALStuttu) suggested I contact ALS Worldwide. I sent them an email and later was able to set up a Skype session for my husband and me to meet with Barbara Byer, Co-Executive Director of ALS Worldwide.
She was very warm and supportive. Barbara encouraged us to live life as fully as possible and explained how ALS Worldwide could help me. After hearing about my issues with uncontrollable laughter and speech, she told me about the medication Nuedexta, hoping it may relieve my symptoms. I ordered it and have now taken it for three weeks. Now I only laugh when I want to and my speech is much improved."
Sudden, unpredictable episodes of crying or laughing can be a side effect of ALS. These episodes are uncontrollable and caused by a condition called PseudoBulbar Affect (PBA), also known as PsuedoBulbar Lability or Emotional Lability.
PBA can occur when areas of the brain that normally control expressions of emotion are disturbed. Brain signaling is interrupted, causing a “short circuit." Although PBA symptoms can feel like depression, PBA is a separate, neurological condition and should not be treated with traditional anti-depressants.
Nuedexta is the first and only prescription medication to receive FDA approval to treat PBA in ALS patients. Developed by Dr. Richard A. Smith, a neurologist with the Center for Neurologic Study in San Diego, CA. Nuedexta is manufactured by Avanir Pharmaceuticals. A compounded form, dextromethorphan, can also be available through a compounding pharmacy such as Hopewell Pharmacy in Hopewell New Jersey. It has been shown to improve PBA in those with ALS and may also improve other bulbar symptoms.
More recently, scientific studies have shown that Nuedexta has a beneficial effect on all bulbar symptoms in addition to pseudobulbar affect, something we have seen firsthand through our work with people with ALS for many years. Results from the NEALS (Northeast ALS Association) trial, begun in 2013 and concluded in 2015, verify these anecdotal observations.
Nuedexta contains two components: dextromethorphan hybromide (20 mg), the ingredient active in the central nervous system, and quinidine sulfate (10 mg), a metabolic inhibitor that enables therapeutic dextromethorphan concentrations.
Nuedexta acts on sigma-1 and NMDA receptors in the brain. While Nuedexta is thought to act on areas of the brain responsible for emotional responses, the mechanism by which it is effective in patients with PBA is unknown. Nuedexta’s potential side effects include diarrhea, dizziness, and weakness.
Discuss Nuedexta, or its generic equivalent, with a neurologist, pulmonologist or primary care physician to obtain a prescription. In more than eight years of usage we have observed these additional benefits; easier, more effective chewing and swallowing; better control of saliva and expectoration; increased use of facial, tongue and lip muscles; improved speech; and respiratory benefit (particularly when used in combination with Pharmanac).As with all of the medication options recommended, it is important that every patient considering Nuedexta have a thorough discussion with their primary physician or neurologist to assess its applicability as a course of treatment. Results will likely be individualized due the complexity of ALS and the variations in the disease.
If you or your physician have any questions or would like to discuss our viewpoints regarding this medication, please email [email protected]