PD + Insomnia + Stress = Disaster

I learned a very valuable lesson on Monday, and I think it is important enough to share. Most of us with Parkinson’s Disease know that stress and not getting enough sleep can have adverse affects on those of us who have Parkinson’s Disease.

Most days I lead a pretty slow, non-eventful life. Many would think that the word “boring” probably best describes my life, especially since we live in a fast-paced, never slow down world. However, I structured my life to be as stress free as possible due to Parkinson’s Disease; a life that people without the disease would probably find boring to the highest degree. In my world, even my restructured, slow paced lifestyle can still hold challenges that are unexpected, so “boring” allows me to plan or cancel activities without having a negative impact on my husband’s life or mine.

As many are aware, people with Parkinson’s Disease can have sleep related disorders as part of their list of symptoms. Once upon a time, long before Parkinson’s Disease entered my life, I could fall asleep as soon as my head hit the pillow each night and sleep straight through until morning. Just like all of the other symptoms of this disease, my ability to get a good night’s sleep to being lucky if I am able to sleep for a few hours at night, came on very gradually. In fact, it was not until I began doing research about Parkinson’s Disease that I began to realize that my increasing insomnia was more than likely linked to the disease.

In addition, when I am able to get into a deep enough sleep and dream, I tend to act out those dreams physically. Therefore, if I am having a dream / nightmare that someone is attacking me, and I am defending myself, it is actually my husband getting kicked and hit, rather than the attacker in my dream. Although I never made it into REM Sleep during a sleep study, based upon my husband’s description of his experiences getting consistently pummeled by me while I am obviously still asleep, my Movement Disorder Specialist thinks it is safe to presume that I have REM Behavior Sleep Disorder. She had prescribed Clonazepam for this and because it does have a sedating effect, she thought that this might also help with the insomnia. It did work for the REM Behavior Sleep Disorder, but the insomnia continued.

During my last visit with my MDS prior to my spinal surgery, we had decided that we would wait until after my surgery to pursue a very small Sinemet increase as well as deal with the insomnia. This would allow me to deal with the symptoms that were related to the herniated disc through having the necessary surgery, and she and I would be able to better decide what changes or decisions needed to be addressed for my Parkinson’s.

As I have previously written, I did have the spinal surgery which was a success. It alleviated all of the symptoms that I believed were attributed to the disc herniation. It left me confident that any changes or decisions that the MDS and I would discuss on September the 1st would be relative to Parkinson’s Disease related symptoms only.

Aside from the surgery, there have been a number of unexpected stressors that have popped up within the last few months. It almost seemed that as soon as my husband and I dealt with one issue, immediately something new and unexpected would come up. I know that sometimes things like that happen, but it just appeared like it was one thing after another, with no end in sight. In addition the things that were falling into our laps were things that you would never expect or be prepared for.

I am certain that the stressful events and the insomnia combined, feeding off of one another, increased the magnitude of their effects within my body and on the disease. Of course I could not see this during the time all of this was occurring. All I saw was that I was becoming an emotional wreck and the insomnia, which was already bad, seemed to be getting worse. I had learned to deal with the insomnia, which almost had a predictable pattern, although I now realize that it was not the most effective way to deal with it. I basically slept when I could, regardless of the time of day. It appeared that I would have three bad nights, in which I would then nap during the day as necessary. By the fourth night my body would be so exhausted from lack of sleep and broken sleep, I would then sleep soundly for about 7 hours. Then the cycle would repeat itself. I thought of this cycle as more than an inconvenience than anything else.

I now firmly believe that the cumulative effects of my problems with sleep combined with the recent additional stressors led to a complete malfunction that could have potentially been dangerous. Sunday evening I was at the end of one of these insomnia cycles, so I presumed I would sleep because of the built up exhaustion. Instead, I only was able to get two hours worth of sleep. In addition, when I went to lie down on Sunday night, I felt as if I was not getting enough air or I was not breathing deeply.

Monday morning I was a wreck. My husband was doing some work from home, so I told him that I was going to try to lie back down. I also told him that I felt like I was breathing more shallow than normal. Since I had always been able to somewhat make up sleep that I would lose at night through daytime naps, I presumed I would be able to sleep. Again, I was wrong. Not only was I unable to sleep or even dose off briefly, I now felt certain that my breathing was not normal. Something told me that if I did not get some sleep soon, I would probably end up in the emergency room.

My husband left for work, and I attempted a few more times to try to get some sleep without any success. Finally, I decided to call my GP and let one of the office gals know what was going on. Since my GP had prior knowledge of the insomnia, I opted to call his office rather than my MDS, because the gals who work in my GP’s office are really good about getting prescriptions called in quickly when necessary. I explained exactly what was going on, and by the end of the day my GP called in a prescription for Ambien.

I called my husband to see if he could pick up the prescription for me on his way home from work, because I knew there was no way that I would be able to drive safely. He was already on his way home, so he stopped in at home first, and then went to pick up the prescription.

Because I was very concerned about my breathing, rather than immediately take the Ambien and go to sleep, I waited until 9:00 P.M. so that my husband and I could go to bed together. I wanted him to watch me for a while after I fell asleep to make sure that everything was okay. I know from the sleep study that I do have mild hypopnea during sleep, which basically means I breathe shallow during sleep which causes nocturnal arousals that I am not aware of. It is similar to sleep apnea in the sense that it does disrupt sleep without the sleeper being aware it is occurring, but I do not stop breathing altogether. Knowing that I have this mild issue, I just wanted to play it safe, since I could actually feel this shallow breathing while awake, I presume as a side effect of sleep deprivation.

Tuesday morning I woke up after sleeping for ten hours without any interruptions that I am aware of. I still felt tired, so I took my morning medications, and I fell back to sleep for an additional two hours.

I have taken the Ambien both Tuesday and Wednesday night before bed, and both nights I have slept between nine and ten hours without any known interruptions. For the first time in many years, I am getting restful sleep. The breathing problems that I felt might lead me to the emergency room on Monday have subsided. It appears that I feel a little better each day following a full night’s sleep.

Leading up to this “crash” on Monday, I was starting to really wonder if I was slowly losing my mind. My emotions were running higher and higher, and I was having more difficulties with concentration than I had become accustomed to. I thought that I was having some strange spurt of progression in my disease. It was not until my “crash” on Monday, and the changes that have occurred since taking the Ambien, that I now realize that symptom control, rather than a spurt in progression, was the nexus of these issues. I think sometimes even a person who has this disease forgets that there are symptoms not associated to movement, that can become just as debilitating as the movement symptoms that most of us tend to focus on. It was a big wake up call and eye opener for me.

We so often talk about the best control of our symptoms through the medications that we are prescribed. More often than not, we are speaking of the symptoms that involve our movement, such as tremors, bradykinesia, speech, etc. I know that if I am having a good movement day, then I have often believed that this was a good indication that I was addressing all of the issues of my disease appropriately. I now know that addressing the motor symptoms of Parkinson’s Disease is essential, but addressing the non-motor symptoms of Parkinson’s Disease is just as essential. I did not quite understand this fully until now. I now realize and fully intend to become more in tune with the non-motor symptoms that I have, make certain that I address them with my MDS, and treat them as equally important as the motor symptoms that we address.