
Insomnia is defined as “The inability to obtain sufficient sleep, especially when chronic; difficulty in falling or staying asleep; sleeplessness. – Dictionary.com
What this definition doesn’t explain is the length and breadth of the insomnia. It doesn’t define what physical affects it has on your body and mind. When someone says to me they had a bad nights sleep and they only slept six hours instead of their normal eight, I explain that is not insomnia. Going months or years either not sleeping at all or only a couple hours a night, that’s insomnia.
I take six different sleeping meds every night to sleep and I am writing this at 1:00 in the morning. So I got a good two hours of sleep this morning. You can only do this for a couple of days before it begins to affect you physically. My tremors get worse, my cognition is worse, I have no desire or energy to do anything during the day. It causes depression, it takes away your desire for the things in life you used to enjoy.
Now imagine dealing with this for years. If you let it, it can literally suck the joy out of every aspect of life. I have yet to find a doctor that can provide any productive treatment. I’ve tried every medication out there, acupuncture and even hypnosis. You name it, I’ve tried it. I don’t know what causes it. It could be a symptom of Parkinson’s or a myriad of other things. I don’t know. My brother suffers from the exact same thing. He has found a medication that works for him but is so expensive (over $1,200 per month) he has to ration it so he sleeps maybe one or two days per week. He doesn’t have good prescription coverage because he is self employed (a topic for another day).
With chronic insomnia being a medical condition, it amazes me that it is so hard to find a medical professional that treats this condition. There are plenty of sleep clinics but they primarily deal with things like sleep apnea. At one point I found a physiatrist who specialized in sleep disorders but he left his practice and I have never been able to find a replacement. At this point I would go anywhere in the country to get treated if I could find someone who could give me an effective treatment
So here I sit at 4:00 in the morning. I’m exhausted and I know I will be for the rest of the day but I know that each day brings a certain joy that I cannot explain. I have hope. I have hope for those one or two days a month where I somehow get a full nights sleep. I don’t know when they will come but I have hope that they will. If you are dealing with the same thing, I would love to hear from you.
My natural sleep without medications in my system is about 4hr-6hr/week. That is the total average for 7 days. So most nights no sleep to 30mins. Sometimes 2hrs.
Started in the second week in Nov 1988. Eventually (after 19 years) got some effective medications that work. My causation is physiological in nature and rare, as far as I know. I could have died from it. I know my lifespan is shortened considerably with such a long term sleep deficit.
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Going on 15 years like you described. What meds have worked? Knowing the long term effects of sleep deprivation I am worried. Every doc just sends me to check CPAP problems. Now maybe 15 years. Any meds that work, I can’t function in the day. Convinced many of my PD issues are from no sleep.
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I have tried just about everything out there. Currently I take Trazadone, Seroquil, Zaleplon, Zanaflex, Gabapentin and Melatonin. I was taking Saphris which was the most effective med I have ever tried but I had to come off of it because it has serious interactions if you have Parkinson’s. I’m going to see a Somnologist later this week in hopes of getting a better solution than what I have now.
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