Severe Insomnia - looking for advice

Sorry In Advance. This is long.

  I’m 45.  I have struggled with insomnia since I was a teen.  It wasn’t so bad until I was in my 30’s and didn’t last as long.  As a teen I could function with little to no sleep.  Up for 2-3 days and the sleep hard and not want to get up the next day.  In my mid 30’s I began not sleeping for longer periods. 4-5 days at a time.  This freaked me out, mainly because I was desperate to sleep.  I would lay in bed with my eyes closed, popping open every once in a while, so I had to consciously try to keep them closed.  I began researching ways to sleep... allll night long.  I took the TV my husband put in the room out.  Got rid of any sources of light. I filled put hot water in the tub before bed and soaked just my hands and feet for 5-10 minutes because it was suggested if you get them warmer than the rest of your body it will help you sleep.  I drank warm milk, stopped eating after 6 pm, tried melatonin, tried zquil.  Began “resting”  by 8 pm and read or just relaxed.  Soft music and hot bath.  Meditation, yoga, exercise, you name it and I did it. Y’all.. nothin worked.  I was awake until my body just couldn’t any more. After almost a year I gave up.  The Dr. gave me sleeping meds, they were like sugar pills. I don’t remember what kind.  It was around 2003.  I just threw up my hands and gave up.  If I slept great and if not, well.. whatever. Around 36’ish I began sleeping but only intermittently. Not til 1 am or so and then I’d wake up through the night. 4 years ago, it came back full blown!  No sleep.  For days. I’d lay in bed in the dark and quiet, clear my brain, breath to relax, meditate before sleeping.  Nothing.  A year of these went by until one day I couldn’t take it.  I hadn’t slept in about 7 days.  I was so tired I felt as though I could sleep for a year.  So exhausted I could barely function. My teen daughter drove me to Dr where I sat there like a zombie, ashen in color, no energy and pleaded for help.  Just one night was all I asked.  So, at 42 I began taking Ambien.  BEST sleep ever! But I woke up every single morning around 3 am. Some sleep was better than none, right?  So almost a year passed and I wasn’t feeling rested.  Getting frustrated with waking up still tired at 3 am. Back to the Dr. she switched me to the highest dose of Ambien for women. 12 mg extended release.  This was AMAZING!! I slept within 5 minutes of taking it and I slept until about 6-7 am!  I felt so rested.  I only took it on work nights and just didn’t sleep on weekends.

In September 2016, I had surgery on my mouth, a SARPE.  I was out of work for 3 months and on low dose pain killers... I can’t take narcotics, so they weren’t the good ones.  I didn’t want to mix, so I didn’t take Ambien.  On my 6th night of no sleep, laying in the dark, turning, getting comfortable, sighing, getting up to just walk away from the bed for a minute and laying back down, my husband turns to me at about 4 am and says “please just take your Ambien”.  So, the pain meds went away and the Ambien came back.  About 6 months ago, the extended release Ambien stopped being extended release! I thought the pharmacy or drug manufacturer made a mistake and called Walgreens.  I was asleep within 5 minutes, but awake by 3, usually, right at 3. Yesterday I took my Ambien a little late at around 11 am and was awake at 3:39 (that’s when I checked the clock). The day before, I took it at almost 10 and was awake at 3:22 am.  

I’ve asked my Dr. if there is another sleep aid other than Ambien and she said none that would work for my level of sleeplessness. It would be as if I took nothing.  We tried muscle relaxers but they didn’t work.  Soma, Valium, and a few others.

I do not suffer from depression or night anxiety (with the exception of the year in my 30’s spent researching insomnia all night every night).  I do have severe vitamin deficiencies which I have to take supplants for.  D and B injections.  I began taking these about 8 months ago. I also have chronic fatigue (probably from not sleeping!). Lupus, Fibromyalgia, reynauds and sjogrens.  These don’t affect me daily and I didn’t like the medications or how I felt on them, so I don’t take them. I do fine without them most of the time. Otherwise I’m pretty physically and mentally healthy.  Love my life, my job, my husband and great things are happening to be very excited about.  I don’t let myself get stressed out, what’s the point of that? It won’t change anything so you have to let those things roll off and move forward.  I’m pretty good about that. 

I’m conviced I just have no off switch. I’m looking for others with similar experiences.  Maybe there is something out there I haven’t tried or don’t know about.

FYI... my son (21) and daughter (18) also struggle with falling asleep and staying asleep.  My daughter has always put herself to bed at 9pm no matter what. She declined outings with her friends because it would be past 9! Crazy girl. But she would text me at 1 A.M. -3 AM asking if I was awake.  “MOM!  I can’t sleep!”  “ I just want SLEEP).  I’m guessing this is something hereditary.  There HAS to be a cause.

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