Sleep issues are one of the most common complaints among EDS patients. Chronic pain and discomfort leads to the inability to relax and makes it difficult to reach a state to fall asleep. Another factor that can make sleep difficult to achieve is POTS. It is not uncommon for EDS patients to also have POTS, also known as Postural Orthostatic Tachycardia Syndrome. This disorder causes the body to have the inability to control the autonomic system. The autonomic system is the system in the body that controls the involuntary actions such as your heartbeat, breathing, temperature control and so forth.
Autonomic Dysfunction plays a major role in why EDS patients have insomnia. When a person is experiencing a lower amount of sympathetic activity in their nervous system, they experience a higher variable in the heart. This variation causes the body to use energy less efficient and that causes the person to use up their energy reserves more quickly and leads to making it more difficult to replenish those reserves when they do to sleep. This over-exhaustion makes a person feel restless, in some cases they can't settle down, and put their mind at ease enough to drift off to sleep.
There is no magic number for how much fluid you need to consume each day. Each person is different. The average intake is 8 glasses of water a day, but as many people know, in some cases, trying to consume that much water will cause your back teeth to float (figuratively). I personally drink 5 liters of water and electrolyte-infused fluid a day. I supplement this with the occasional saline I.V. if my blood pressure plummets and I need to boost it. Decreasing your caffeine intake, avoiding energy drinks, and limiting your alcohol intake, can help manage your POTS and in turn, make it easier to fall asleep and minimize your insomnia.
There is hope out there. Education and awareness about EDS is becoming more mainstream and patient advocacy is the best that it has ever been. That is one of our aims here at Wetzel's EDS Life, to help patients become their own advocates and to educate them and their physicians about EDS and the related illnesses that go with it. Getting back to the subject at hand, pain management is very important for chronic pain sufferers. There are different approaches to pain management. There are the more commonly known approaches, such as NSAIDS, like Ibuprofen, Acetaminophen, and Aleve; there are Opioids, such as Vicoden, Oxy-Contin, Percocet, Morphine and Demerol; Electrical Stim Pain Management like TENS Therapy and Spinal Stimulation Implants; Cannabis, CBD, and Hemp Products; and Muscle Relaxers.
POTS patients have a hard time controlling their body temperature, which makes it difficult to get comfortable enough to fall asleep. Other things that can make getting comfortable hard include Restless Leg Syndrome, Abdominal Pain, Nausea, Bloating, Constipation, Incomplete emptying or Gastroparesis, Hypertension, Hypo-tension, Cold hands and feet, Lightheadedness, Dyspnea, Joint Pain, Muscle Pain, Headaches, Migraines, CranioCervical Instability, Back pain, Muscle Spasms, and Over-exhaustion. Long term difficulties with not being able to sleep is called Insomnia. Insomnia can have negative effects on a person's health over time. It can cause daytime fatigue.
Also the more fluctuations there are in the heart rate and the autonomic system during the day, the more tired one becomes. Some of the ways to combat these problems are with salt and hydration. POTS patients and by extension, EDS patients who have POTS need to consume an elevated amount of salt, more salt than is recommended for the average healthy individual. Intake depends on the individual. In my specific case, I need to consume 8 grams of salt a day to retain enough fluid to maintain a blood volume high enough to minimize the effects of the POTS. EDS patients with POTS also need to consume elevated amounts of fluid.
Pain management is also an important part in managing insomnia. Another major complaint in EDS patient is PAIN and understandably so. EDS patients frequently subluxate and dislocate their joint, have muscle pain, muscle spasms, and joint inflammation secondary to the dislocations and subluxations. Pain management can be a difficult subject to bring up with your doctor if you are a new patient with them, or if they are unfamiliar with EDS and all the “fun” things that come with it. Now with the Opioid Epidemic being called a national emergency, more and more chronic pain patients are being looked at as drugs addicts and this is not the case.
But there are other medications that are not as well know that also work for pain that work well for certain people and for certain types of pain. Recently an article was published By Practical Pain Management, an online forum dedicated to the subject of pain relief. In this article, it stated, “The medical field is now recognizing that Oxytocin is a strong pain relieving medication as an alternative to opioids.” Oxytocin is sometimes referred to as the “love hormone.” It is a naturally occurring hormone within the human body and it is released at various times and under differing circumstances. For more information, please refer to My Pain Medication Digest.
Some pain medications, such as opioids, can have an unexpected effect of being a stimulant, which is not suitable to take around bedtime. They can also cause an itchy side effect, which is irritating, distracting, and makes it difficult to calm the mind well enough to fall asleep. Some medications that are available that physicians may consider are Gabapentin, Lyrica, certain classes of anti-depressants, and antihistamines. Maintaining proper sleep hygiene is also important in combating insomnia in any case, but this can especially be the case when you suffer from a chronic illness and you need all the energy restoration you can muster.
A lesser thought of reason for insomnia in EDS patients is Restless Leg Syndrome, or rather what presents as Restless Leg Syndrome. It is not common knowledge that certain conditions can mimic the signs and symptomology of RLS. Some of these conditions involve the Muscular System, Skeletal System, Nervous System, and Circulatory System, since EDS involves all of these systems, directly or indirectly. Other conditions which can be found in EDS patients that display symptoms that mimic RLS, include Fibromyalgia, certain muscle disorders, nerve disorders, and diabetes. If you suspect this may be the case with you, you should discuss it with your practitioner. They are the best qualified to make a decision.
In this section, I, John Wetzel, will be giving my personal point of view on sleep hygiene and what works for me for as long as I can remember. Or at least since I enlisted in the army. Since 2005, I have always needed to have some kind of noise in the room. Silent rooms make me nervous and edgy. I have a seizure disorder and anxiety plus; they do not go well together as one triggers the other. My main source of noise tends to be either my sound system from my PC or my television. These are great because I can set timers on both of them to shut off after I am asleep to conserve power and not wake me later on in the night.
So the next thing I tried was a pillow over my head, just covering my eyes, and that worked pretty well. I met my wife and we were together for a good while. It took her a while to get used to the fact that I couldn't sleep without noise, but she eventually got used to it. She started to wear an eye mask. Eventually, my Insomnia got so bad that I would be awake for 2 or 3 days at a time and there wasn't a medication would work adequately over a long period of time. We would have to constantly rotate them and some of the side effects were severe, with night terrors being the worst.
This may not work for everyone, each person is different and what works for me is not a suggestion for what you should do. It takes time, experimentation, and sometimes an idea comes from the least likely places. Discuss these kinds of things with your doctor. They may recommend sending you to a specialist who can provide you with more pointed care when it comes to sleep. EDS, POTS, and Sleep issues go hand-in-hand. You need sleep to deal with the symptoms and complications from both, but the EDS and POTS make it difficult to recharge. Finding what works for you takes time and work, but don't lose hope. You are an EDS Warrior!
However, all these devices throw off screen light, LED light, ambient light, and so on. I am the type of person who needs the room to be pitch black. I have blackout curtains on my windows so that I don't wake up as soon as the sun comes up. Lately, meaning the last decade, getting to sleep really hasn't always been the issue. As of late, it is staying asleep, but we will discuss that at another time. Well for years and years, I would just lay facing the opposite way that the devices were on, and that worked most of the time, or I would sleep with my arm laying across my eyes. But when I started exhibiting EDS and POTS symptoms, this started to become painful.
So I tried an eye mask for myself and it has made a huge difference. I have worn an eye mask ever since then. So a balance of noise and blacking out the light works for me. I am currently combating the symptoms of POTS which seem to be the worst at night with Excessive sweating, can't get comfortable, and so forth. Sometimes I sleep in the living room because it’s the only room cool enough to manage my body temperature. My Cardio doc and medical team are working together to come up with a plan to help alleviate my symptoms and provide me with a better quality of life.