Sleep. One word. One action that seems so simple, and yet, when you suddenly face a world with no sleep, you realize just how special, no, just how valuable sleep is and was before Lyme. I could write a novel about sleep deprivation and its effects on the mind and body. Solving the sleep problem is like putting together an intricate puzzle, full of tiny pieces. Each piece is important to solving the puzzle––miss one piece and “no sleep for you!” (Said in my best impersonation of “The Soup Nazi” from Seinfeld).
An early Symptom
As with most of the Lyme symptoms, the “no sleep” symptom was my crash that signaled that there was definitely something going on that was way worse than a lingering flu. I did not suffer from insomnia, but rather, my mind just decided that it was not going to go to sleep anymore. This may make you chuckle because you know all too well what I am talking about, but when it happens to you, it is terrifying! Before I knew it was Lyme, during my frantic “Googling” days, I found an article about a guy in Italy who stopped sleeping. He discovered that he had a rare genetic disorder that was irreversible. After his death (from not sleeping), several family members came down with the same disorder. "Oh my gosh!," I thought. "Maybe I had this disorder?" I mean, I wasn’t sleeping – at all! I now know that my logic was completely unreasonable, but in my non-sleeping world at the time, this made perfect sense. I was going to die––from not sleeping! When I shared this news with my husband, he found articles about people who had gone 10 years without sleeping and lived. In his attempt to reassure me, he was making me even more anxious at the prospect of living like this for 10 years! My family kept saying, “you will sleep again.” Really? I thought to myself. Because in that private hell of no sleep, it felt like it would last forever.
Insomnia can be caused my infection and inflammation in the brain
No one in my family and friends circle could understand my predicament. I would hear things like, “Just lay down and go to sleep.” Or, “You are probably just overly tired.” And non-helpful advice like, “Go to the psychiatrist right now and get help!“ Or worse yet, “You have to relax so your mind stops racing.” While this may sound like perfectly fine advice, none of those statements described me. I was exhausted. My mind was not thinking about anything except how badly I wanted to fall asleep! So what exactly was happening to me? Well, for starters, I was having seizures. Myoclonic seizures that would occur all night long. On top of this, I had swelling in my brain (which I did not know at the time). This swelling was causing intense head pain and pressure. The pain was so intense, that even in my drug-induced sleep, I would wake up to the feeling of my own hand gripping the hair on the top of my head and pulling it out. Yes, I was in so much pain, that I was pulling my hair out in my sleep in an effort to relieve the pressure.
What not sleeping feels like
I was actually quite sick. If you are reading this and don’t have Lyme, imagine Lyme as the equivalent of suffering through a really bad flu or malaria with fever. You are so sick that all you want to do is sleep, but your sleep is light and restless, completely uncomfortable, full of nightmares, as your heart is racing from the feverish bug that your body is trying to fight. You are stuck between asleep and awake and the pain that occurs in this place is indescribable to anyone who has not experienced it them self. This was my “every night.” This was my life for months and months on end. I thought it would never end. I would spend my days just waiting for the night and then dreading the experience of not sleeping. My mom would say, “Just lay down and take a nap.” Sounds sweet, right? I couldn’t nap. My body was in such a “fight or flight” mode that it was painful to lay down to rest. I would begin falling asleep, and my body and brain would go into seizures. It was as if bombs were going off in my brain. Forget water boarding…sleep deprivation is a much more effective form of torture.
Getting back to sleep
So how did my sleep return? Treatment is key. Once diagnosed with a super CDC positive test, and discovering that I indeed had neurological Lyme, I knew that I had to be aggressive. As much as I hated the idea of an intense IV antibiotic protocol, I knew that if I wanted to get well–– that I had to go this route. This was not an easy decision. When you are really sick, it’s hard to think of getting even sicker, which is what happens when you treat Lyme disease. Fast forward 9 months post-IV treatment and I sleep most nights. I have maybe 2-4 nights a month of sleep issues. Only a few months ago, I took my first real nap during the daytime. It was heavenly! I am slowly weaning off the prescription medication that I have been taking to reduce seizures and help me sleep. See my post about seizures and Lyme for more detailed info on ways to prevent seizures. In addition to medication, I also take the following supplemental aides specifically for sleep. I use these brands and trust them. I do know that certain brands or formulas don't work for me, but these are the ones that I have personally tested and use daily.
I take these supplements to aide Sleep and rest
NAC – This helps reduce seizure activity in the brain and detox the body by producing glutathione. I use 600mg in the morning and 600mg after lunch.
Magnesium – I take a high dose of magnesium malate about 2 hours before bedtime.
Omega 3 – In addition to taking Omega 3 in the morning, I also take another dose about 2 hours before bedtime. Carlson's is tested for mercury and is a great brand.
L-theanine – I take 150mg of l-theanine about 30 minutes to an hour before sleep. I take this brand because I found it to work the best for me. I have tried other formulations, but this one has been perfect for me and makes me sleepy.
Atenolol – (prescription only) 7.5 mg -I used to take this beta-blocker for tachycardia during the day beginning at age 17. This was 20+ years before my diagnosis. Who knew that my heart condition was from Lyme? Anyway, it helps me because sometimes my heart will do funny things while trying to sleep.
Melatonin – 1-3 mg when I lay down to sleep. I use an organic version from my local grocery store, but I have heard good things about herbatonin - a natural form of melatonin.
Cedarwood essential oil - 1 drop on the bottom of my feet at bedtime
Balance essential oil – 1-2 drops on wrist at bedtime
Lavender oil – 1 drop rubbed on my ears at bedtime
Salt/Sugar mix – This mix is something I came across during research. When blood sugar levels drop at night, your body will wake you up. If you put a pinch of this mixture under your tongue, you will fall right back asleep. It works! 1 part sugar to 5 parts salt. Put this in a baggie and place it next to your bed. 1 or 2 pinches under your tongue works wonders.
Vitamin C 1,000 mg– I love C-Salts. They have a nice blend of electrolytes. I have found this works great for bringing a calm to the body at night.
I hope my sleep story was helpful for you. I would love to hear your stories below. What types of remedies have you tried that help you sleep at night?
Becca Brinkmann, PhD, writes about her experiences with Lyme disease and how she found hope through the storm of illness. She created hopetohealth.com to provide resources and information on Lyme treatment and support. She recently published a book for her son with congenital Lyme, called My Wish. She lives with her family in Western Pennsylvania. Visit hopetohealth for more information. Subscribe to the blog below!