I’m afraid of the dark.
Not for darkness’ sake.
But for what meets me there at night to terrify me.
It’s not just a nightmare, but neither is it real. I don’t know what it is; I just know it wants to attack me.
On May 6th, I wrote about “Things That Go BUMP In The Night” and I was able to laugh off the first time it happened. I had muscle spasms which I thought, in my sleepy haze, were the rummagings of a wild animal sharing my bed with me, possibly a snake. I could feel the mattress lift under me, so I called the police and probably woke half of my neighbors. The police and two friends came, and after a thorough investigation, no animals were found. I then recognized it was wild muscle spasms which I had likely somehow thought was a wild animal. On May 6th, I couldn’t HEAR the presence in the dark bedroom with me; I could only feel it under me, around me. I recognized, after much convincing by my friends, that my mind must have made up the whole scenario.
In the past few weeks, however, these night terrors have become much more vivid and frequent, and I’m now afraid to even try to sleep or get a nap during the day despite the fact that I’m utterly exhausted and I need my sleep more desperately than the average person my age.
Last night, as I began to drift into sleep, I could feel the changes in my body and the involuntary movements overtaking me. I felt disoriented, so I kept fighting to either get to sleep quickly or to wake up more fully so as to make it stop. As I drifted further to sleep, the terrors enveloped me – I saw black dark “shadows” in my room, I felt them move around me and under me, moving my body, and then the noises started. Ugh, the noise! Groaning, breathing, screeching, growling. I tried to move to look around, I even tried to speak, but I couldn’t move at all – I was paralyzed, unable even to move my head. I wanted to grab my phone and call for help. It suddenly rushed up even closer, if that were possible, and grabbed me by the shoulders, thrust its head, which I could not actually see (because I couldn’t turn my head) into my face, and growled LOUDLY into my face so that I felt its breath, which smelled of death, on my face and neck. Whatever it was, I knew it wanted to eat me for its midnight snack, and it was pressing my shoulders into the mattress as it crushed me.
I would have screamed, but I couldn’t even control my own breathing voluntarily much less move my arms to push it back. My mind raced, yelling, You’re Not Real! GET BACK!! Leave me alone! and I shut my eyes as I realized I was probably caught in that terrible place between wake and sleep, a house of horrors I’ve lived through before. I knew I needed to “get out” of there by waking up or falling asleep, and sleep surely didn’t feel possible at that point. Oh Lord, HELP ME! Protect me! I cried silently as I tried to bring my body back to full consciousness though it also seemed to be fighting me.
It took several minutes to come to myself, but when I did, my bedroom was quiet again. I had left the lights on and the bedroom door open because I’m no longer able to sleep full darkness. I could move again, and as I did, I whispered “Thank you, God!” I reached for my phone and texted a friend several times to tell her what was happening and that I was terrified. It was about 2am. I received no response so I got up and drank a glass of water, moved around a little bit. I didn’t want to try to sleep again – each time I did, I could feel those uncomfortable changes in my body and mind before they were full-blown, and I knew what was ahead. Even when I try to take a nap during the daytime I’m experiencing these terrors.
Hypnagogia is the pre-sleep state our minds pass through into sleep. Hypnagogia is the corresponding state of altered consciousness we experience as we pass from the sleep to the wake state of alertness. Some people experience hallucinations, lucid dreams, and sleep paralysis in this state; and I’m an unlucky one who seems to experience all of the above in the most unpleasant ways. While difficult for me to imagine, there are some pretty oddball folks out there who actually try to encourage this state of consciousness for creativity’s sake or I guess just for the “experience” or entertainment value. They can have it, IMO.
In the past five or so years I’ve battled intensely with hypnagogic and hypnopompic hallucinations. “People” with ill intent would try to break into my apartment, chanting my name outside, and if I even dared look out the window (I often wouldn’t go near the windows at night and would hide from any areas of the apartment I felt someone might be able to see into through a crack in the blinds) I would often see a man suddenly slam himself against my window and looking directly into my face. I sat in my hallway on the floor, a crumpled mass of paranoia, dizzy with delirium. I could neither sleep nor fully wake to find relief. I was living a horror movie though I’d never read or watched horror shows on TV as a kid; I didn’t know how my mind was creating these terrifying scenes. As the sleep deprivation caused by intense chronic pain overwhelmed my brain and body during the daytime hours too, I often slipped into a hypnagogic state, causing the hallucinations and terrors to then follow me not just at night but during the day as well. Sadly, all day and night my constant question was “Is this real?” It was a terrible way to “live” if you could really call that living. Over the course of several years, I learned to hide most of my symptoms so that people who didn’t know me very well wouldn’t suspect I was hallucinating, but the effect of being constantly on-guard and questioning every detail and sensory experience was mentally taxing and itself exhausting. I don’t know how I would have survived without God’s comfort in the Bible and the support of my church friends.
Throughout the course of several years I was able to identify things that would cause the hallucinations to become worse or to somewhat resolve. Unfortunately, my doctors had few answers and even fewer solutions. My triggers were antidepressant medications, some pain meds, not getting enough sleep (impossible TO sleep!), not eating enough, high pain levels, and times when my GI tract was just acting up due to Small Intestine Bacterial Overgrowth. Unluckily, it seemed impossible to control many of these factors until I started the Specific Carbohydrate Diet on November 20, 2011. Within two months of starting the diet, my sleep was improving and the hallucinations as well as the depression were lifting. Within five months, I was able to think and problem solve more clearly; I was getting lost less frequently while driving (I used to sometimes drive 10+ miles on roads I didn’t know while going somewhere I always went, before I even realized I was lost) and generally more alert during the day. My friends noticed the change, as I was able to attend to conversations for longer periods of time and interact more fully. I’ve been very blessed to be almost totally free from such hallucinations now, though I’ll admit that the years of fighting with mental illness have left their emotional scars.
Perhaps one of the most painful parts of it all is that friends who know about my challenges will still sometimes be “on the lookout” for changes in me that could signal I’m about to have a crisis. In some ways I think that’s good to have an “alert” support system. In other ways, I just want people to expect that I’m kinda normal, right? (Even though I’m not?) I have no plans of any breakdowns any time soon, you know? But because I do have some odd behaviors (don’t you dare even think about touching my legs or coming near me with gluten…sometimes I get panicky when it’s going to rain because I’m afraid of the rain on my legs which hurts…and I shave my head because it itches from dermatitis and that reminds me of the years of hallucinating bugs in my head (I don’t tell friends the later part of that; they can do without that detail, after all)) it can be difficult for my friends to differentiate what’s “ok odd” from “not okay odd”. My family? They seem to feel entirely uncomfortable with my health issues and even moreso with my mental health issues, so it’s a lonely fight. Like I said, however, I’ve done very well in approximately the last year and a half, and I’m doing much better with anxiety too. I’m happy and proud of the progress I’ve made by God’s grace. I want to celebrate because I know I’m more mentally sound nowadays than I’ve probably been all my life, amazingly. I wish others could be inside my mind, body, brain, for even a few moments to understand how far I’ve come, but it’s likely to remain a one person party because nobody ever really could understand until they had lived the horrors themselves…and I wouldn’t wish that on anyone.
So, what do I do now? Good question.
Well, I need to figure out why I’m having these night terrors and hallucinations again. I’ve stayed 100% strict on my diet and I’ve made only positive lifestyle changes recently. The one major change has been that I started Lyrica a few weeks ago. In the last two weeks I’ve been slowly increasing my dose, and it’s within this timeframe that the terrors have become significantly worse. On the 6th, when I had my first really bad one and I was taking only 150 MG of Lyrica per day, I wasn’t HEARING the hallucinations; I was just FEELING them. Now I’m Hearing them, Feeling them, and seeing the moving dark shadows which, gratefully, haven’t yet become more fully formed beings. The progression is very alarming.
I have also had a UTI and I don’t feel that all the symptoms are gone, so I recognize the possibility that a UTI could be affecting my mental status. I took antibiotics, but the first few nighttime episodes occurred BEFORE I started the antibiotics, though I guess it’s likely I had an active UTI at that time since I was dealing with wetting my bed before the night terrors started up again. Yet even if I do still have a UTI, it doesn’t feel as severe as it was a few weeks ago and I’d think my mind would be chilling out by now.
The Lyrica, I think, may be slowing my motility just a little bit which has added some complexity to managing my SIBO and it seems like I simply cannot overdo it on laxatives these days. Yet my gut still isn’t anywhere near as bad as it has been and I don’t expect this is the direct cause. It could be a factor, however.
It’s been the nights that I am NOT taking the ketamine that seem to be the worst, oddly enough. While I’d like to take the ketamine more often for pain relief, I haven’t really worked it into my daily life yet because of its side effects and the increase in visceral hypersensitivity it brings. I need to try to amitriptaline first to see if I can keep the VH from flaring when I use the Ket, but I’m not willing to start that until I make sure I’m okay mentally since antidepressants can cause me to become psychotic. It’s all a crazy balancing act. I feel like a man on a tight rope who has bad balance…you just hope there’s a good safety net below him!
So right now, besides occasional Ket use, I’m JUST taking the Lyrica. It’s really helping with my burning pain and I love that. The other side effects have been quite tolerable. Obviously, if this is a side effect of Lyrica, it’s not a common one. My doctors all know, however, that my body and mind tend to respond to medications in anything BUT a typical fashion. My other meds are the same and I’ve taken them for the last few years without problems (Baclofen and Claritin for example).
1/2 of me hopes the Lyrica is causing these unsettling mental symptoms because then we have a clear explanation and solution – back down on the Lyrica. Besides, if the Lyrica is NOT the cause, then that leaves a world of possible causes and oh dear…I’d rather not contemplate any of those for too long, you know? Scary stuff. A mind is a terrible thing to lose.
My other 1/2 hopes it’s not the Lyrica since I am getting significant relief by taking it and I don’t want to give that up. I realize achieving health, especially in my case, is a difficult tight rope to walk, but it becomes even more frustrating when the consequences of helping myself in one area of health are negatively impacting another area of my health. For example, if I exercise and push my body to become physically healthier, I may have more pain on the day I exercise, but that pain is relegated to the physical realm. Additionally, I benefit emotionally and mentally from the exercise, so I only gain in regards to the other spheres of my holistic health. When, however, I take a medication that decreases my physical pain but I experience mental health problems from that medication that may negate the positive physical gains, I feel frustrated. I’d prefer my gains and losses to stay neatly compartmentalized, but health doesn’t often work that way when you’ve got so many issues in so many different categories.
Since I’ve been through so much mental horror in the past, I don’t want to go through it again and I’m trying not to be afraid. I know that if I don’t sleep, these things tend to get worse, yet I’m afraid of moving through that hypnagogic state to get to sleep in the first place. I lay down for a nap and I cannot relax. I try to do my biofeedback and relaxation exercises, and I get more stressed rather than less, again afraid of slipping into that hypnagogic state. This is such a slippery slope – I NEED SLEEP! Without sleep, my pain escalates. One doctor and a few of my friends have suspected that it’s the pain primarily that lead me to years of hallucinations. My pain in my intestines used to be so very high and constant that if I was sleeping the pain still followed me into my sleep and I was restless. After so much pain, the mind breaks down to match the state of the body. So perhaps that was my body’s way of letting the pain out? I don’t know for sure. All I do know is that pain does some very mean and scary things to people.
There is the very real possibility that this could also be a spiritual/demonic attack. I asked for prayer at church from my pastors and a few friends, and I’ll continue to cry out to God in prayer for help.
I will talk to my doctors and psychologists about these things first thing on Monday. I really don’t know what to do or even what I WANT to do at the moment, so I’m most grateful that I have a few excellent doctors now, in whose hands I am confident to leave my care management, especially when I’m out of ideas myself. 🙂
Please keep praying for me. Amidst all these challenges, I’m still trying to work my part-time job. I need strength for the fight.