AS Research,  Sleep

The Search for Sleep in Angelman Syndrome – What you need to know about Melatonin

February 12, 2020 / Comments Off on The Search for Sleep in Angelman Syndrome – What you need to know about Melatonin

The Search for Sleep in Angelman Syndrome.

Here are some of the benefits and risks associated with using melatonin to help individuals with Angelman Syndrome sleep.

Sleep disorders are a symptom of having Angelman Syndrome. Do not confuse that for meaning every individual with AS is unable to ever achieve proper sleep. This is a very complex topic, so let’s start where Angelman Syndrome research started. Effects of Low Dose of Melatonin on sleep in children with Angelman Syndrome. In this study, they used 0.3 mg of melatonin. Blood samples were withdrawn to measure individual endogenous serum melatonin levels. They noticed a significant decrease in motor activity during sleep and longer periods of sleep. Therefore, a moderate increase in melatonin promotes sleep in children with Angelman Syndrome. The keyword is Moderate.

Melatonin is just one sleep hormone. There are several other hormones involved in the sleep process. It is clearly understood that we do not just make up our own dose for estrogen or testosterone. We need to seek treatment from our physicians. Lab tests need to be run to understand our individual bodies and then doctors can prescribe the proper dose for treatment. In the US, melatonin is available to purchase over the counter. This is not the case in other countries. A doctor must prescribe melatonin for the patient. Over the counter sales of melatonin are banned in the United Kingdom, European Union, Japan, and Australia.

Certainly, the dosage needs to be properly recommended for each person as an individual and continuously monitored. Melatonin is a hormone and we need to understand the risks that are associated with it. I feel they have been completely overlooked because people tend to believe “over the counter” medications or supplements are generally “safe”. They then just use the recommended dose on the side of the bottle. As a result, it could lead to taking too much. Unfortunately, we are used to this type of “chase the dose” treatment model from doctors. If medications are not working, they advise to increase the dose. This scenario is not ideal when it comes to this hormone.

The most common melatonin side effects include:

  • Headache
  • Dizziness
  • Nausea
  • Drowsiness

Melatonin supplements can interact with various medications, including:

  • Anticoagulants and anti-platelet drugs
  • Anticonvulsants
  • Contraceptive drugs
  • Diabetes medications
  • Medications that suppress the immune system (immunosuppressants)

In the AS study blood samples were withdrawn in order to measure individual endogenous serum melatonin levels and the levels induced by melatonin treatment. Are your doctors doing this? Probably not, so how could any of them recommend increasing the dose when sleep is not achieved? The study does not imply that supplementation is being used to satisfy a deficiency.

Although, in the study from 2012 Melatonin profile and its relation to circadian rhythm sleep disorders in Angelman syndrome patients did measure serum melatonin levels of AS patients and found that they “were significantly lower than those of the controls at the measured time points during the night”. They found that sleep patterns improved (in four of the 15 individuals studied) by giving 1mg of melatonin between 6 PM and 7 PM regularly for three months.

Melatonin is a hormone made in the pineal gland in the brain which helps regulate our sleep cycle. It is also known as the “darkness hormone”. It is secreted in circadian patterns with the highest level at nighttime. Melatonin is also made in the gut (stomach) and may contain at least 400 times more than the pineal gland.

The melatonin supplement is synthetic, so it will depend on the individual as to how well their body will utilize it, if at all. It is believed to be safe and effective for long term use with fewer side effects than other commonly prescribed sleeping pills. There have been consumer studies that were done and found the contents of the supplement were very different from what was listed on the label. The challenge is finding a good quality supplement when we cannot trust the label.

 

How to find a good quality supplement

Look for products that have been certified by Consumer Labs, The U.S. Pharmacopeial Convention, or NSF International. This means that these products have been voluntarily tested and meets the US Pharmacopeia Convention standards, (meaning the product is accurately labeled, and free of harmful substances).

It is important to pay attention to the ingredients list. 

They should be free of Gluten/Wheat, Dairy/Lactose, Sugar, Artificial Flavors, and Synthetic Dyes.

CVS launched an initiative called “Tested to be trusted” to make sure every supplement they sell has been through third-party testing.

 

When to use it

Melatonin plays a very important role in regulating our biological clock, or circadian rhythm. The timing of the dose is important. It is naturally released during the period of darkness from sunset to sunrise. It can be taken one hour before bed. I give 3mg to Nathan 30 minutes before bed.

 

How to boost melatonin naturally

Get some sunshine. Getting a healthy dose of vitamin D from the sun will help shut down melatonin production during the day, creating an appropriate circadian rhythm. This then supports the natural melatonin production at night. 

Sleep is very complex. What is going on inside the body is just as important as the environment for each person. 

Also, avoid “Blue light” exposure. The penetrating artificial blue light confuses your body. It is emitted from smart-phones, TVs, computers, laptops and tablets. Reducing blue light exposure 2 -3 hours before bed will make a difference.

Install light-blocking curtains in their room.

“Red light therapy” can be used to block out blue light exposure. Does this sound crazy? NASA spent $11.2 million to outfit the ISS’ U.S. section with LED lights. The lights were installed to simulate nature: blue in the morning, white during the day, and red in the evening. They completely understand that sleep deprivation can cause lower performance, decreased memory, and even sickness.

Here are some red light plug-ins, or a color-changing bedside lamp. These can be used in the room, or around the house.

 

Sleep and the gut-brain connection

“A significant, fast-growing body of research illustrates the far-reaching effects of the microbiome over brain function and brain health—as well as the influence of the brain over gut health and the microbiome. This “gut-brain axis” appears likely to have a profound influence over nearly every aspect of human health and physiological function, including sleep”.

– Michael J. Breus, PhD

The Sleep Doctor™

 

Foods that contain melatonin

Eating certain foods that are rich in melatonin can also help naturally boost your levels. Goji berries, walnuts, almonds, pineapple, bananas and oranges all contain substantial amounts of melatonin.

 

Best Melatonin Supplements

Best Melatonin Lowest Dose – Sundown Melatonin 300 mcg (also sold at CVS)

Best Low Dose Melatonin 1mg – NOW Melatonin 1 mg, with Co-Factor Nutrients (Niacin, B6 & Magnesium)

Best Melatonin – Quality and Price – 3mg Nature Made (also sold at CVS)

Best Low Dose Plus L-theanine –  Nature’s Trove

*Caution – Chewables and Gummies were listed in the consumer report as the most variable products. The worst contained six times as much melatonin as advertised. As a parent to a child with Angelman Syndrome I have to tell you that I do not give my son these types of supplements. I know that they generally have added sugars, artificial flavors, and colors. I cannot in good faith recommend them to you. We know sugar makes kids go crazy. This combo just doesn’t work.

 

The research that I have done to help my son achieve sleep and the doctors that I follow have advised me that melatonin is just one tool that can be used to aid in sleep. The risks that I needed to be aware of for Nathan were seizures and the possibility of high dosage interfering in the natural production of his own melatonin. As melatonin is a hormone that regulates your body clock, flooding it with one hormone can create an imbalance that may knock his entire body clock out of sync.

Melatonin has been shown to have many protective effects against certain neurodegenerative disorders such as Alzheimer’s disease, Parkinson’s disease,  including anti-inflammatory, and antioxidant properties.

 Lastly, it may not be the ultimate answer for many of us. It was not the ultimate solution for Nathan. His first dose of melatonin did not make him magically start sleeping all night. Although I know it has been the solution for other families. I did not stop using it. Instead, I continue to use it as support much like one brick in a brick house. He has a healthy diet that does not include sugar, this is another brick. We practice sleep hygiene and have a consistent nightly routine, add another brick and so forth. One by one, I have built a brick house for him of sleep and stopped his seizures. Seizures and sleep are closely connected but that is a topic for another day.

Overall, I hope you find this information helpful on your journey with a loved one with Angelman Syndrome. I will continue to deliver to you articles on sleep to help your daily life. Sleep is a very complex topic. According to the CDC, they estimate 50–70 million Americans suffer from sleep disorders or deprivation. This is not unique to AS. There are other solutions. I will also share with you the stories of other families that have achieved sleep. This is not medical advice, please consult your physician.