This is the first of a couple entries about my ongoing struggle with insomnia. Part II is here.
Bootsy Collins by day on the nightly battleground. (The irony of it is, my childhood bedrooms were all in primary colors.)
The insomnia is what’s going to eventually kill me.
I know you’ve probably heard someone say, “Nobody ever died of insomnia,” but I’m here to tell you that’s not true. Now, I don’t have that mutation, but I do have some serious problems with sleep. It’s nearly done me in twice already, at the end of 2007 and at the end of 2008. Every major crash I’ve had since the end of 2007 has been because of not sleeping.
Before I fell ill, I was a champion sleeper. While I never could sleep sitting up or take naps during the day, at night, I’d get in bed and be asleep in eight minutes. (I know this because Chimp, being a night owl, would come in and hang out until I fell asleep, then get up and work for another few hours.) As soon as I developed ME/CFS, I started having unrefreshing sleep, which is one of the hallmarks of the illness. I’d get in bed, sleep a whole night, and feel worse when I woke up than when I went to bed. But at least I was sleeping.
One day in November 2007, I got in bed, closed my eyes, and didn’t fall asleep, for no apparent reason. The next night, I thought for sure I’d sleep like a log, having not slept the night before, but again, I lay awake the entire night. The third night, I lay awake most of the night, but toward dawn, slept for a couple hours. And then the next three days went just like those three days. No sleep, no sleep, two hours.
It was as if my body had just completely forgotten how to sleep; like my body had forgotten even where sleep was. It was just wandering around the corridors, opening doors at random: “Is it in here? No. Is it in here?”
I was still working at this point – from home, lying down on the couch, with my computer on my lap – but the insomnia was seriously impacting my functioning. My short-term memory was absolutely shot within a week after it started, making writing challenging and working with spreadsheets extraordinarily difficult. We started trying over-the-counter things. Melatonin: nothing. Theanine: nothing. Benadryl/Unisom/Tylenol PM (which are the same thing): tachycardia. By Christmas, having suffered six weeks of lack of sleep, I had gone from housebound to bedridden, was unable to sit up and was in terrible pain, the worst pain of my life. I called my job and told them I needed a couple weeks off to try to recover from the crash. I had always bounced back from them before – but this time was different. Two weeks later, feeling no better, I told them I was leaving.
At Christmas, it was obvious I needed to move on to prescription medication, but I had no doctor I could call on. My previous GP had skipped town (quite literally – she disappeared, taking all her patient files with her, and when I contacted the owner of the complex where she’d had her office, he told me that if I found her, he would appreciate me putting her in contact with him, because she owed him a sizable chunk of back rent), so I had to find a new one.
My new GP tried out several drugs on me, without much success. She decided that the best thing to do at that point would be to give me Klonopin. I may have suggested it because I know I’d read that Dr. Cheney used it in ME/CFS patients to great success. What I didn’t realize then is that he doesn’t use it as monotherapy, and I was forgetting something else important as well, which I’ll get to in a moment.
I started taking Klonopin in January 2008. It worked immediately to get me to sleep, but I had trouble staying asleep, so I took more Klonopin halfway through the night. I was quickly up to about 2 mg. A friend who is a psychologist told me I shouldn’t be taking it every day, and I ignored her warning. She wasn’t living with ME/CFS, I told myself. And Cheney, who was as expert as you get, recommended it.
But by February, it wasn’t working to get me to sleep any more. We added some trazodone, which helped. So we had a successful cocktail at that point. Then, at the beginning of March, I suddenly found myself gripped with terrible anxiety, and quickly recognized what was happening. Several years before, a doctor had given me a Xanax prescription to help me manage my needle phobia, and when I took it, I found myself terrified to leave the house. Once the Xanax was out of my system, the terror went away. The Klonopin, also being a benzodiazepine, was doing the same thing. At this point, though, I’d been on the Klonopin for six weeks, and I couldn’t just stop taking it as I had the Xanax. I started reading about benzodiazepine withdrawal, and realized I was in way over my head. I just wanted to be off the stuff – but at 2 mg, you can’t just stop taking the pills.
Two milligrams of Klonopin doesn’t sound like much, I know. It doesn’t look like much – just two tiny yellow tablets. But, I learned as I read about withdrawal, it’s the equivalent of 40 mg of Valium. I started an aggressive taper, and by the end of March, was down to 1 mg. Going that fast, though, meant that the lower I went, the worse the terror got. I was in panic mode almost continuously, every day, and the stress of that threw me into a minor crash at the end of March. Trying to stabilize, I held at 1 mg for sixteen days, and in the process, realized I was going to have to go much more slowly if I was going to survive getting off the drug.
So we started a titration taper. This is a process in which you dissolve the pills in a fixed quantity of liquid and cut a minute fraction of your dosage each day. That way your dosage goes down much more smoothly, and you don’t have the stress that accompanies larger cuts. Getting from 1 mg down to nothing took from the middle of April until the end of August. In the middle of that, I was moved by charity air ambulance from California to my mother’s house in Indiana. The stress of that and the taper took me from bedridden to almost entirely unable to function at all. I hadn’t been able to hold a book; by August I couldn’t even really use the computer. I couldn’t speak above a whisper when I could talk at all. All I could do was lie in my bed in my darkened room and wait for the days and nights to pass.
On the day Obama was elected, the trazodone failed. Once again, I had no GP, as I’d been unable to leave the house since being moved. A doctor with some familiarity with ME/CFS, who was an hour away in Indianapolis, wrote me some prescriptions, but we couldn’t seem to come up with anything that would work. We went all the way up to Xyrem, which is the legal form of GHB, and is an absolute last-ditch sort of thing. And even that didn’t work. After not sleeping a full night for six weeks, I couldn’t roll over in bed, I couldn’t feel my legs, and I was having irregular heartbeat and attacks where my heart rate would suddenly zoom up to 120 bpm without warning. At this point, because of the heart problems, I landed in the hospital right around Christmas 2008. The Xyrem was not only not working to get me to sleep, but it, in combination with the lack of sleep, was causing paranoia and delusions. I heard nurses talking in the hallway outside my room, and I thought the things they were saying were veiled messages that were actually about me.
This was the darkest period in my life. There is a very good reason that sleep deprivation is used as a means of torture. It truly is. And no matter how little I slept, I couldn’t fall asleep. I was in indescribable agony. When I could speak, I begged Chimp to help me end my life, because there was no way I could do it myself, not being able to even walk across the room. I asked my mother to move the belts out of the closet by my bed, so as not to be continually tempted.
At some point in the weeks after I got out of the hospital, I picked up the old bottle of Soma that the doctor who’d put me on Klonopin had written for me back in California. Looking for pain relief, I took some, and found that it made me drowsy. So that night I took some – and I slept. That became my new solution, and it worked great – until I ran out after a month. Nobody would prescribe me more of it, even though I’d determined that it worked really well for me. (It apparently has enormous black-market value.) So we were back to square one.
At this point, having gotten a month or so of solid sleep under my belt from the Soma, I was doing a little bit better. I felt strong enough to leave the house briefly. We got me in to see a psychiatrist in town. She suggested Seroquel, which is an antipsychotic. I was a little bit apprehensive about it, because I knew it had a bit of a bad reputation, but I had no other options. Seroquel turned out to be a game-changer, and absolutely saved my life. After another good month of sleep I was able to walk, with some difficulty, from my bed at night to a sofa in the next room during the day.
In May 2009, we took me to see Cheney, and he added some additional medications to the cocktail to make it more robust and to hopefully keep it from breaking. And it worked for a good long time. I didn’t have a crash for all of 2009. At my 2010 appointment, I asked him what we would do if the combination of drugs stopped working for me. He said that that wouldn’t happen. I knew he was wrong, just because it’d happened before, but I wasn’t going to argue with him.
Then, toward the end of 2010, the drugs stopped working, I stopped sleeping, and had a crash on Christmas Eve 2010 and another at the end of January 2011. Those cost me the hard-fought ability to walk to the bathroom. I lost it in December 2007 and got it back in March 2010. But I’m hopeful I’ll be able to fight my way back to it again soon. And the thing that got me back to sleeping after those crashes? Soma is saving my life once more. Again this time, my local GP is not allowed to write it, but Dr. Cheney will. I’m really not sure what jollies people get out of it – it just sends me right off to sleep, blessed sleep.
I hope that the course of GcMAF I’m hoping to do this summer will end this problem. If it doesn’t, like I said, I’m pretty sure that insomnia will eventually end me. Eventually we’ll just run out of drugs that will work. I try not to think about it, honestly. I’ve been down this road varying distances several times, and I never want to go down it again.
I have more to tell you next time about what Cheney told me last month when I asked him why my insomnia is so bad, the supplements that have unexpectedly helped, and maybe, if I can manage to flip through all the records, a list of everything I’ve tried for insomnia.
No Poster Girl 
I can certainly relate as I have been down the same road with inability to sleep that inevitably leads to worsening of symptoms and eventually one long perpetual crash.
I have been on all the same medications and found only Soma to work consistently. With no doctor willing to prescribe it I found my quality of life unraveling. I decided that I had to make a decision between living in a constant crash or buying Soma on the black market.
The decision for me was to buy the Soma and regain somewhat of a normal life. I know most would disagree but for me it works.
I’m sorry to hear you’ve had to do that. What a shame that a useful drug is kept from people who need it by a few bad actors.
Thank you for sharing. My problem with insomnia is trivial by comparison. I look forward to your next blog to see how you’re doing and for your insights into the problem. Take care. Interesting article on sleep linked at the Dr. Speedy site: http://networkedblogs.com/hDlap
And thank you for the link, Maureen. A couple of my friends posted links to that article elsewhere today. Brains are fascinating things.
Reading this was… hard. It was the first time I started to understand how bad things were in 2008. I remember your taper and how hard you worked to get off the Klonopin. You sounded so resolute and strong, but wow… I just really had no idea what you were struggling with.
Thanks, Meredith. Writing it was hard, too. I’ve sort of put these episodes away in a box on the top shelf of the closet of my mind, and it wasn’t much fun opening the box. But I felt like I had to tell this story, and that I could manage to now. For a long time I couldn’t even talk about it – the PTSD around it was just too bad.
You poor girl, I know exactly what you mean. Me too I had 3 major crashes during the last 10 years due to not sleeping at all for some 3 to 6 days – exquisite torture!
My research over these years lead me to a complicated regime I posted here: http://www.mecfsforums.com/index.php/topic,5450.0.html
I know you have difficulties with forums, so I post this here too:
Remedies to help us sleep :
As mentioned in my introduction my main problem for the last 10 years is to get a decent nights sleep.
This has scrambled my brain – so instead of a ‘thesis’ I just list all the remedies I found helpful. The rational of most you probably know and if not a quick Google will furnish the explanation and if you are interested in what the effects for me were – or still are – please ask and I will go into details.
3 hrs before sleep, usually 20:00
10 to 25 mg Trimipramine
350 to 700 mg Valerian root
2 hrs before sleep, usually 21:00
B3 100 mg
Inositol 500 mg
GABA 750 mg
Tryptophan 500 mg
Ornitine 500 mg
Magnesium Taurine 500mg each in a combination formula
Glycine 500mg
Fish protein 200mg (peptidea, smart city)
Melatonin 2 mg or 3 mg time release
Trazodone 50 mg
Pregabaline 100mg
And a 4 day rotation of benzodiazepines:
Clonazepam 0.5 mg or lorazepam 1 mg or nitrazepam 5 mg or diazepam 7.5 mg
The rotation started to be necessary because my system got used to each one of the benzos after about 7 days and I had to go higher and higher with the doses to fall asleep.
When I wake up during the night and it is hopeless to get back to sleep I use various herbal formulas, also in rotation because I get used to them too after several night in a row ( could go into detail about the formulas if there is interest).
When I am still awake after 1 ½ hours my last resort is 10 mg of Zopiclone ( 10 years ago 7.5 mg zopiclone ALONE got me to sleep, now I need all the above and 10 mg of Zopiclone only gives me 2 to 3 additional hours if I don’t want to tough it out the next day with too little sleep. Even then, I can take it maximally twice a week. More than that and it stops working altogether.
An alternative for last resort is 200mg of Flupirtine (used in fibromyalgia for pain) It also gives me some additional 2 to 3 hours, but I can only take it occasionally because it is too much a muscle relaxant and makes my legs even weaker the next day.
Occasionally a hypnosis CD and or an acupuncture gadget helps….
You can see, this is a pretty desperate arsenal and I fear the time when it breaks down with no alternative then to up the doses….
Recently I found Almorexant (orexin receptor antagonist) at Phase III clinical trials, so not yet available.
THE MOST IMPORTANT THING I FOUND OUT IS ROTATION, ROTATION, ROTATION.
I am here in the UK and it is a miracle to get prescribed what I get and Me too I am afraid that this regime will not work any more ….
I am so grateful that you write about this and share what you have learnt and I very much hope that the regime that Cheney has sorted for you will work
all the very best
Inge
I really appreciate seeing your list, Inge. I have tried some of those things – it seemed like GABA helped for a while, but more recently when I’ve taken it occasionally it just gives me that weird feeling in the extremities that seems to be unique to it.
Too bad Flupirtine isn’t available in the U.S. Otherwise I’d put it on the potential “to try” list. I seem to have good success with muscle relaxants…except for Flexeril, which made me agitated. Bad scene there.
Flupirtine is also not available in the UK but can be imported from Germany. May be you could find a pharmacist who imports meds?
I also wondered if my walking got worse when I upped the dose of GABA from 250mg to 750mg. Must try to reduce to see. Although the 250 mg did not help with sleep in my case.
Just wanted to say Ive had troubles with sleeping. I take melatonin some nights, unisom others, and rarely, a half a tablet of magnesium. Magnesium seems to make some of my symptoms worse but allows me sleep better, so I dont take it too often.
Most of my most desperate lack of sleep nights are because of an autoimmune reaction. I was on benicar (blood pressure med, lowers vitamin D levels) for the marshal protocol and after six months on it, it gave me wicked headaches and made me not be able to sleep. Took me awhile to figure out.
After that, I went on glutamine, an amino acid, and after a week on it, had severe back pain and didnt sleep for 3 days straight, went around screaming at people and passed out on the kitchen floor. Stopped taking everything and right away realized it was that.
I still wake up 3-4 times a night but thats still better then not sleeping like sometimes. You might want to think about a reaction to something else you are taking.
Best Wishes,
Charles
Oh my god, Charles, I started glutamine a few weeks ago and I’ve completely stopped sleeping and my back started hurting! Are you kidding?! I’m only at about 9 grams and my doctor wants me at 20g/day. Plus, I’ve bought the BIGGEST tub of the stuff in the world. This disease stops you working, costs an arm and a leg (which I would actually LITERALLY pay to get better) for supplements and drugs not covered by insurance and then we all have reactions to things we try and are left with no symptoms and bottles of unused pills. Gggrrr…..
I meant NEW symptoms at the end there. NO symptoms? Ha.
Elizabeth, I’ve seen some discussion of the idea of a supplement exchange – I think the most recent mention of it was on Patrick’s blog.
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So let me get this straight. Without pharmaceutical intervention you sleep 4 hours a week? If this is the case, you should seriously consider contacting a sleep clinic to have this pattern objectively confirmed. With the exception of cases involving prion disease, the pattern you describe would be clinically unprecedented.
Best Wishes.
Tom, I actually saw a nationally prominent insomnia specialist last summer. Sadly, he was uninterested in trying to help me, besides scolding me for taking what he thought were too many soporifics, despite the fact that I’ve come to this regimen that’s very successful for me with a lot of painful experimentation. After we’d gone through my whole sordid insomnia history and I’d explained Cheney’s theory about how reduced available energy leads to this sort of insomnia, the specialist told me that I should reduce the amount of time I spend in bed so that when I’m in bed I’ll sleep more. This is after telling him that I could go several days completely without sleep if I didn’t use pharmaceutical intervention. I had hoped that this doctor would take an interest in precisely the way you describe, but he was less than useless.
I thought that sleep studies (polysomnography) were relatively easy to obtain- but I might be mistaken. I only assumed because over the years I’ve met people who’ve undertaken them.
I had one done in 2004, in the first six months I was ill, when I was having unrefreshing sleep but my insomnia hadn’t kicked in yet. They didn’t find anything amiss then. Sleep medicine is the province mostly of the type of doctors who do sleep studies and diagnose sleep apnea and narcolepsy and then the occasional psychiatrist. Neither are really very helpful in terms of insomnia, because insomnia is little understood, really. They have a handful of medicines they can throw at the problem, but once you exhaust their half-dozen tricks, they don’t really know what to do with you.
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I’ve read and reread this post so many times. Insomnia most definitely will be the thing that kills me and, this week, i stopped sleeping. I took trazodone for the first time last night. It did nothing. Thank you for putting your story out there in such detail. I think of you all the time and it comforts (and saddens) me. X
Oh, sympathies, E., sympathies. I see you had a couple good weeks and are having some challenges again now. Hope those resolve as soon as possible.
Hiya, been reading your site for a few years now and I recently started having my own troubles with severe insomnia and I was wondering if you would be willing to talk with me about it? I tried to see a doctor but I got less than no help.
You can call me Coco, BTW, as my name can be too much for some.