Friday Tidbits: Severe Insomnia

I've stayed away from writing much about my severe insomnia, which one neurologist labeled "malignant insomnia" - a mistake, I know.  It's not quite malignant in the sense that it's not been fatal yet.  However, it's such a huge topic to cover and when it comes to my case, it's absolutely the bane of my existence.  I've long lost count of the doctors I've seen and the treatments I've undergone: the neurologists, rheumatologists, sleep specialists, fibromyalgia specialists, CFIDS/ME/CFS specialists, not to mention going the alternative medicine route with applied kinesiology, rolfing, acupuncture, acupressure, nutritional IV's, chelation and so forth.  The chelation part: I was found to have heavy metal toxicity off the chart and hubs in his cute (!) way exclaimed, "you're a walking toxic waste dump!"  Cute, hubby, cute!  (Not!)

I relatively recently went to a sleep study where I did not fall asleep at all.  Consequently, the studies told us absolutely zilch because one needs to fall asleep for at least 10 minutes in order to get any sort of reading. 

Normally, I can get a few hours sleep a few times a week but I can and often do go 42-76 hours with no sleep whatsoever: perhaps once or twice a week. Then, a curious thing happens: I crash and have what we in the family call a "marathon sleep."  It'll last about 12-24 hours but doesn't come even close to the sleep I've missed and worse yet, no one knows when it will happen.  Exclamations of "she's due for a 'marathon sleep'" rings throughout the house after too long a period has gone by without a long sleep.  I simply want for someone to hit me over the head with a mallet and let me be out for a few days.  

And to make everything truly exciting, really bizarre things occur: one Christmas I had overdone it so much that I fell asleep, finally, after presents were opened in the morning, and stayed asleep until New Year's Eve. Hubs and the kids would take turns checking to see if I was alright, but I would yell out "would y'all cut it out, for heaven's sake?"  You see, there's a squeaky board right outside my bedroom and it gets a rhythm going as each person shifts from one foot to the other in order to get a good look at me.  Now mind you, I remember none of this....  These are the facts presented to me to prove how impossible I am when anyone dares to interrupt my sleep. (Gee, really?)

There are so many aspects which I hate about my incredible insomnia.  Here's a good start:

• No one understands how really bad it is, an understatement.  My last neuro has finally thrown in the towel and recommended that I go to one of the five top sleep centers in the world, my choices as to which.  He's seen me for decades, off and on, and has finally admitted that he's never seen anything like it.  I, in turn, refuse to go back to see him again because he seems to think rohypnol, the "date rape" drug, would help.  Is he nuts?
• How can one make doctor's appointments, indeed, any sort of plans, when one never knows if and when one will fall asleep?  I try my hardest to get some sort of schedule going, but nothing helps.
• The longer I go without sleep, the harder it gets to fall asleep.  Furthermore, the more tired I am, the harder it is to fall sleep.  (Talk about double curses!)
• My insomnia is not caused by obsessive thoughts when I need to sleep.   For some odd reason, I can turn off the day gone by or the day to come.  Instead it is the limbic system being screwed up.  I liken it to a defective light switch.  Sometimes it can be turned on with a bit of a jiggle, but for the most part it just doesn't respond to any cues.
• By taking so many meds, I know I have a great possibility of shortening my life span.I never have my days right any longer because I don't have a division of night and day. It started with Christmas years ago - misjudging when Christmas is.  (Me to hubs and daughter: "You're just messing with my head. What do you mean it's tomorrow?  I thought it was in four more days!")
• Each and every moment and movement that I'm awake is geared towards how it will affect my sleep, whenever it chooses to happen, that is.  I digest nothing that may hinder my sleep - in fact I'm afraid to be found in the same room as any food that may keep me from sleeping.  You never know what may be contagious! (Joke!!)
• My bedroom is and has always been the perfect room for sleeping.  Light bulbs are chosen with care, as are lamps, bed linens and so forth.  A word should be added here regards to hygiene. You're told to use use your bed only for sleeping.  But what is one to do if one is afflicted with CFIDS/ME/CFS and fibro and needs to be in bed a large part of the day due to the extreme fatigue characteristic of those illnesses?  The medical profession needs to come up with better advice for such patients.
• Until recently I read every book on sleep that I thought would not be a total rehash of what's been written about it a million times already.
• I do think that having gone to uni as a literature major - thus great sleep deprivation - didn't help matters.  However, I remember sleeping a LOT in the early CFIDS/ME/CFS fibromyalgia years before I had my three little ones, all within three years.  This couldn't help but damage something within me as far as sleep is concerned.
• And do not be fooled into thinking insomnia is just an inconvenience. For example, it's due to my severe insomnia that my pituitary gland pretty much stopped making any adult growth hormone.

Do you have trouble sleeping as well (understatement time once more!)?  Have you been able to work around it or deal with it successfully?  I loved the "holistic clinic" I drove to for a few days every week for an entire year, until the clinic pretty much imploded. Before going there, I was so sick that I could barely get myself into the car, much less endure a 2-3 hour ride - but eventually I was well enough that I was able to drive myself. If I could find those services, such as the applied kinesiology and gentle rolfing, I'd be back in a heart beat.

In the meanwhile, I hope everyone is doing their best, only better. Ciao and paka.