Narcolepsy: Diagnosis, Treatment And More

If you suspect that you have Narcolepsy and see your doctor, you may be diagnosed initially based on being incredibly sleepy during the day, and experiencing cataplexy which is where you lose muscle tone all of a sudden. After this first diagnosis, they may then refer you to a sleep specialist for more tests. 

Proper diagnosis means that you have to stay throughout the night at a special place where they study sleep. The experts there can then do the relevant tests and give you a diagnosis, as well as measuring how severe your condition is. There are different ways that they will gain this information, including: 

• Checking your sleep history - Your doctor will want to know all about your sleep history. This will involve filling in something called the Epworth Sleepiness Scale, which involves various questions that help to understand how sleepy you are. For example; you may fall asleep after you have had your breakfast. 

• Sleep records - It may be that you have to take a diary of your sleep pattern for a few weeks so that your doctor can understand the pattern, and how your sleepiness could relate to issues with alertness. It may be that this diary is done along with you wearing a special device that works to track your activity and rest, giving a physical indication of your sleeping patterns, and what your sleep quality is like. 

• Polysomnography - This helps to check different physical symptoms you experience during sleep. It does this with some special scalp electrodes that are attached to your head overnight. Your brain, heart, muscle, and eye activity will be monitored, as well as your breathing. 

• Multiple Sleep Latency - This test checks how long it takes you to get to sleep during the day. You will have several naps over a certain period of time, and your sleep patterns will be observed. Those with narcolepsy get to sleep easily and enter REM soon after they fall asleep. 

The above helps medical practitioners rule out other problems that could be causing the symptoms you are experiencing. Other sleep issues, such as deprivation, sedation drugs, and sleep apnea can also cause narcoleptic symptoms. 

Treatment For Narcolepsy

Narcolepsy cannot be cured. However, medication and changes to how you live can help you to manage your symptoms. 

Medications For Narcolepsy

Stimulants are commonly prescribed for Narcolepsy and some examples of those are:

• Armodafinil (Nuvigil)

• Modafinil (Provigil)

• Amphetamine 

• Amphetamine and dextroamphetamine mix (Adderall)

• Dextroamphetamine (Dexedrine)

• Methylphenidate (Ritalin, Concerta, Aptensio XR)

Stimulants are drugs that work by stimulating the central nervous system. They are the main treatment used to help those with Narcolepsy remain awake during the day. Doctors may try Provigil or Nuvigil as a primary option. These types of drugs are not as addictive as some other stimulants and tend to provide more balanced effects compared to other drug types. Side effects tend to be in common, but if they do occur, they tend to be headaches, anxiety, and nausea. Some side effects can be reduced using other medications or all natural solutions by adding vitamins to your stimulant dose.

Sunosi and Pitolisant are other stimulant types used to treat narcolepsy, headaches, and anxiety disorders. Cataplexy can also be helped with Pitolisant. 

Some patients require treatment with a type of methylphenidate or amphetamine. These medications can work well, but they come with a risk of dependency. They can also cause heart palpitations and nervousness. 

SSRIs (Selective Serotonin Reuptake Inhibitors) or SNRIs (Serotonin and Norepinephrine Reuptake Inhibitors are sometimes used to help suppress REM sleep. They can also help reduce or remove symptoms such as:

• Sleep paralysis

• Cataplexy

• Hypnagogic hallucinations 

Fluoxetine and venlafaxine may be used, and their side effects can include putting on weight, insomnia, and digestive issues. 

Tricyclic antidepressants may be used to help with cataplexy, but many patients struggle with some of the side effects, like dry mouth and feeling lightheaded.

Sodium oxybate (Xylem) can be used for cataplexy, and it can help with nighttime sleep. In high doses, it can help reduce daytime sleepiness, often by taking two doses at specific times in the day. 

Xylem can be an issue when it comes to side effects as they can be quite extreme. Nausea, bedwetting, and worse sleepwalking at night can be just some side effects. Taking it alongside alcohol, other sleeping drugs, and pain relief drugs can lead to problems breathing and in extreme cases can lead to a coma or death. 

If you are currently suffering from health issues like diabetes or raised blood pressure, it is important to speak to your doctor about the potential interaction between those problems, drugs you take for those problems, and the potential interaction between those and Narcolepsy drugs. 

Some drugs that are not prescribed, such as those for common colds, can cause you to feel drowsy. In many instances, doctors ask that patients with diagnosed Narcolepsy avoid those medications. 

Some new medications available for Narcolepsy are being looked into. They work with the histamine system, hypocretin, and immune system. These investigations are in the early stages though, so they won’t be available any time soon. 

Helping Narcolepsy At Home

There are things that you can do yourself to help with Narcolepsy symptoms. Here are some handy tips:

• Make a schedule and stick to it, including going to bed and waking up at the same time each and every day

• Have regular naps at strategic times of the day 

• Remove nicotine and alcohol from your life as they can make symptoms worse

• Exercise regularly to help improve sleep quality and routine 

• Tell your employer, teacher, or mentors about your condition so they can work with you to work around your condition 

• Stay safe and ensure that you are safe to perform activities like driving. Your doctor can help advise you on ensuring you are safe to do this. 

• Utilize support groups and therapy to talk about your condition. 

Preparing To See Your Doctor

When you are preparing to see your doctor or a sleep expert about potential Narcolepsy, it is a great idea to do the following to prepare:

• Check with the facility providing the appointment if there is anything you need to do in advance. 

• Write down any symptoms you experience, even if they seem unrelated. 

• Write down personal information, such as major stresses or traumatic life events. You may wish to turn these into a timeline. 

• Make a list of any medication and supplements you are taking. 

• Ask a trusted friend or family member to attend your appointment with you so that they can write down what happens, in case you forget. 

• Write down questions you have for the doctor. 

• Be prepared for your doctor to ask you a lot of questions.