You are not alone.
Could this commonly used supplement used for sleep be hindering your recovery from POTS?
Abnormal sleep is common in many “invisible illnesses” such as Idiopathic POTS, ME/CFS, and presumed Chronic Lyme Disease. It can escalate to the point that many of us have nearly reversed sleep/wake cycles – we are awake most of the night, and asleep most of the day! As a former Hyperadrenergic POTS patient, this certainly happened to me. I even had difficulty with sufficient medication for general anesthesia, needing “as much as a horse”, as my shocked doctors explained to me.
So it is not surprising that most of us need help in getting to sleep, and melatonin is a commonly used supplement to encourage sleep. But if you have POTS, is the use of melatonin hindering your recovery? Evidence from the study of POTS in astronauts suggests it may be a problem.
First, what is melatonin? Melatonin is a hormone produced by the pineal gland. As a hormone, it can have many effects on the body beyond affecting sleep – some good, some bad.
For example, long-term use of melatonin has been associated with an increased risk of fractures (folks taking melatonin were found to be 90% more likely to suffer a fracture than those who did not take melatonin). After adjusting for variables such as sleep disorders, vision problems, and arthritis, melatonin takers were still 44% more likely to suffer a fracture than folks who did not take melatonin.
Additionally, melatonin has been reported to significantly decrease blood pressure in healthy people without hypertension, and can affect both testosterone and estrogen. It has been found to impair sperm function in men, and in women entering menopause, it can cause a resumption of menstrual flow.
On the flip side, melatonin has been linked to enhanced immune response, antioxidant actions, and even inhibition of some tumors. It has been found to decrease some aspects of allergy in the skin, such as IgE (although it is critical to understand that melatonin has been found to often worsen asthma and its role in allergy is not yet fully understood).
When considering melatonin in POTS patients, we can focus on how it can affect orthostatic intolerance -- the defining diagnostic criteria for POTS. To do so, we turn to the study of melatonin by astronauts.
Astronauts can be great subjects for studies on POTS because astronauts generally suffer with POTS after space flight. When they land after extended time in space, they are often taken away in stretchers because the POTS can be so significant!
For years, astronauts took melatonin to help them with sleep in space (can you imagine how WIDE-EYED they must be?!). A study published in 2003, however, indicated that melatonin was worsening POTS in astronauts and needed to be discontinued. How was melatonin worsening POTS?
Melatonin affects baroreceptors – the tiny sensors in blood vessels that help regulate blood pressure and relay the information to the brain. This means that melatonin can hinder the nervous system responses that allow the body to compensate for a drop in blood pressure when a person changes to a vertical position. This results in dizziness and/or fainting (something POTS patients know well).
So, in POTS, melatonin is usually contraindicated, and at POTS Care, we usually have patients discontinue melatonin and instead focus on locating the medical problem causing their POTS. When this is located and properly treated, patient’s sleep cycles can normalize and even more importantly, they must no longer rely on medications focused on treating only the symptoms. Because patients with POTS need to be evaluated and treated differently from patients without POTS, we can never assume that supplements or medications that treat non-POTS patients are also good for them. We must know the science and understand the intricacies of baroreceptors and vascular health, at a minimum, to effectively help these special patients.
In my own journey of recovery, although normal sleep was one of the last things to correct in my own body, it DID happen! One of the first things I discovered about my abnormal sleep was that my high intracranial pressure needed to be treated first. Then, we were able to dig deeper to discover other medical reasons for my insomnia. Doctors often told me that if I focused on sleep hygiene (such as dimming the lights, staying off of electronics before bedtime, using my bed only for sleep, etc), my sleep would normalize. But no, I had medical reasons for my insomnia that had to be addressed, and this was an essential part of my recovery.
While recovering, there are some options that may help, though. And if melatonin is contraindicated in your case, as it was mine, what are some of these options? My top four suggestions include:
Going to bed on an empty stomach: I found that an empty stomach allowed me to drift asleep easier, and I was more likely to fall asleep (eventually)! If I felt hungry, a very light snack (an apple, jello, or a boiled egg were some of my favorites) was usually sufficient.
Listening to audiobooks: I often found that as I got closer to sleep, I would sometimes get a startle response that often brought my alertness right back (and I usually developed tachycardia and felt almost panicked). It was as if my body was unable to “cross-over” to sleep. If I listened to audiobooks (or if someone read to me), my mind focused on that voice, and I was able to slip into sleep. If you like the thought of someone reading to you, but don’t have someone available to do so, there are some apps available that can be great. I often listen to sleep stories on the “Calm” app and continue to enjoy these today. I found a earbud that I could sleep in, and it also doubled as an eye mask. If you’re interested, it is on Amazon here.
Reading before sleep: If you are well enough to read (believe me, I went through many years when that was not an option), it can also be a good way to prepare for sleep. I always liked a small book-light, rather than an overhead light, and usually lit a candle and played some soothing background white noise. It became my bedtime routine that I always looked forward to, and continue today.
Medication: Because sleep is critical for many of us in our recovery journey, if all else fails, medication can help. I was reluctant to take anything to help me sleep for a long time, but when my doctor finally convinced me that lack of sleep was likely worsening my symptoms, I must tell you that she was right! Some medications are not habit-forming (such as Lunesta), and some can also help if you lean towards depression (such as a low-dose Elavil). Until I was able to identify and treat all of my underlying medical problems contributing to my illness, medication was sometimes needed in my case. When my sleep normalized one day, they never came back again. It was sort of surreal to have problems for so many years, yet to sleep normally again one day, and to never again have issues with sleep. Normalized sleep is something I will never take for granted again!
There are many other options available that may help you (herbal teas, antihistamines, tart cherry juice, medication to name a few) but please keep in mind that although these are helpful, they do not treat the underlying medical problem causing insomnia. For patients with POTS, locating the medical condition(s) causing POTS may be an essential factor in recovery.
To hear more about Dr. Driscoll’s journey with POTS, you may be interested in her book, The Driscoll Theory.
Dr. Diana Driscoll is now working full time at POTS Care. A recovered POTS/EDS patient, and mom of children who have now also recovered, she has been instrumental in finding the underlying medical conditions responsible for this potentially disabling condition.
POTS Care is the only POTS clinic devoted to locating and treating the underlying medical causes of POTS. More information can be found at www.POTSCare.com.
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