Hi heapsreal,
Wow. Except for the going to work part (i can't do that any more), your letter could have almost word for word applied to me. Oh, I don't like the taste of beer either, but in my dancing days, just substitute shots of tequila.
So, let me share some about me and you can see if any of it resonates with you. I too, have an arsenal of meds on hand. (I was a practicing MD, a shrink till 12 years ago) I was always a "night owl", which would have been called insomnia in one era, delayed sleep phase now and with CFS, well, it's just a mess.
I no longer have to watch the clock and be thinkin' oh, I have to be up in 5, no 4, no 3 hours. I too have back problems (and neck disks, had surgery on my neck in 2001) and I am actually having a PT come to my house (that won't last long...I opened the door and she said, OH! I expected to see a sick person.) I did end up in the hospital last week a not so long but not really relevant story of high BP cuz my back hurt, my arm hurt from my neck, a migraine, higher BP...blah blah) So, I had a cardiac workup which was ok and an MRI, no surprise, arthritis, bulging discs, stenosis (narrowing of spinal canal)...all stuff considered moderate. I'm not interested in any surgeries, certainly not on my back any time soon. I had both my hips replaced in 2007, i was only 50. But i digress, not unusual event.
Through lots of trial and error, with various docs, shrinks (i have mood problems as well) and I see Charles Lapp, MD once a year in consultation and he is a real pro...I am finally on a regimen that is pretty sure-fire. If there is a new pharmacist, she may look at me sideways, but I don't care. I take Ambien, 20 mgs (it got to that dose over probably 12 years), it helps me GET to sleep, 2 mgs Klonopin, that KEEPS me asleep. Under most circumstances, if no one wakes me and I have nothing to get up FOR, I can sleep 10 plus hours. If I sleep much less than 8, I am much more achey.
BUT, I go through (or did) what you called insomnia whinges, where I would sleep just a few hours a night for 3,4,5 hours a night. As a shrink, you'd think bells and whistles would be going off in my head. Before I was sick or VERY sick, those periods were great because I could be very productive, creative, was usually in a good mood. Eventually, I would "crash", but it had a different meaning than now. I would sleep for 12 or 14 hours and sort of normalize. (whatever that was!)
But I have had a couple bona fide clinical depressions. Which I distinguish from the "feeling depressed" that seems to be part and parcel of M.E. When, five years ago, I was having such a depression, I had just had both hip surgeries, the doctor that had been negligent and misdiagnosed me had put me on HUGE doses of narcotics then lost his license because of a bunch of wrongful death suits, as in he killed a dozen or so ladies with fibro. And left our whole town of patients on narcotics and nobody really wanted to see any of his patients.
Anyway, I go see the then new shrink, who was smiley and warm and I really had good feelings about at the time (I'm still feeling kind of stung by this more recent 'firing' event).
She's doing her taking her history thing, then family history, yes there are some people with manic depression in my family. Then she asks if there has ever been a period when I have had a decreased need for sleep, talked a lot, was real active and my husband and I (he's a psychiatrist AND neuro) look at each other and go, nah, nothing that comes to mind. And she prods, not even a night where you stayed up all night? Aaaah, then it all starts coming back to us, oh yeah, remember that vacation at that place in Virginia the Heatcliff or Homecliff or whatever and Joey, our son, was about 10 and the room turned out to be really small and there was only one bed and I actually slept a couple hours a night the first two nights, maybe even was up all night the second two nights, oh YEAH...and I got sick with a UTI and we had to find a drug store out there in the mountains and I was taking Effexor, but I left it at home so i REALLY felt sick by the time I got home?
And before that? Remember the time when we had a timeshare in the Virgin Islands (what a ripoff, now we can't even give it away!) and i didn't sleep much at all either and was all gung ho and dragged the guys on a sunset cruise and a sunrise (MOI? sunrise? the only way would be if i stayed up all night!) snorkeling trip and the water was really beautiful??
Well, she gives me a little sample bottle of Seroquel 25 mgs and says that if that ever starts to happen again, to call her, but that I should have these on hand. And I whine, I don't want to take a neuroLEPTIC and she says, just put them in your medicine cabinet. And we continue to see each other every 3 weeks, when I am able to show up. She does also start me on an antidepressant, but says given the fact that I have had these "hypomanic" episodes and my brother is bipolar, she also wants to start me on a low dose of Lamictal a mood stabilizer. And my hacks go up...I say I do NOT want to take something that is going to make me even fatter, or make it harder to lose weight and she says, well, lamictal is pretty "weight-neutral" as opposed to what I was probably more used to prescribing 10 years ago, lithium (water retention) or Depakoate (weight gain), Tegretol (used it more in teens)
So, I, a bit reluctantly agree to the Lamictal, because now I have not only a sleep arsenal, but a mood one, I take a med to prevent migraines, one for my BP, Naprosyn for my achiness...but ok, yeah.
Well, I will cut to the chase here, cuz I am getting tired because, surprise! I have only gotten about 3 hours of sleep each of the last three nights. The Lamictal worked well in conjunction with the TWO antideprssants she put me on. She started me on Zoloft, then either she, or Dr Lapp suggested Wellbutrin, this is qite a ways back, because it was "activating" and might help with CFS symptoms as well. And I got a diagnosis of bipolar ll disorder slapped on me which means someone with depression who has also had at least ONE HYPOmanic episode. if you don't know, the hypomanic thing means, not full blown mania. Like "under" mania. Hypodermic needles got under the dermis, the skin.
So, I am cool with this for a while, till my husband, the town migraine expert recommends to my internist that Topamax would be a great drug to prevent my migraines, instead of chasing them with pain meds, which doesn't work too well any way. So, I'm a good patient and I take everything at its prescribed doses till I get neuropsych tested (for my horrendous disability case) and the doc and my husband are talking like I am the developmentally disabled child or demented adult that is not there. And they are discussing how very poorly my cognitive skills have become my ability to think clearly and they are going over my meds and talking about what the possible main offenders could be and they are talking about Lamictal and Topamax.
So, when the shrink boots me, or even before, during the time i was missing my appointments, i was first, very gradually cutting back my Topamax, the migraine one, cuz they laughingly called it Dopamax. And my fog, lo and behold is better. But i don't want to eliminate it cuz i am starting to get more migraines so i just keep it at a decreased dose.
Then, I do the same thing with the Lamictal. I think I very gradually reduced it, I guess by too much. or with the combo of antidepressants i was on. I don't recommend, even for MD's that this was very smart, for me to futz with my own doses, but i was running it by my husband and a doc friend. Still it was stupid, because
