Insomnia

Before I got M.E. I’d always been a great sleeper.  I’d read a book for 10 minutes, settle down, let my thoughts drift away……..and wake up 7 hours later, 9 on a weekend.  Nothing kept me awake – the more stressed or miserable I was, the more I slept.  It was my coping mechanism and I liked it!

The first symptom I had that something was wrong with my body was insomnia.  I’d drop off as normal, but wake at around 1am and be totally unable to get back to sleep.  I’d finally settle into a fitful doze at around 4am only to be woken by the alarm at 6.30am telling me to get up for work.  Six months of that and I was like a zombie.

As my M.E. progressed my insomnia worsened.  When I contracted meningitis in 1996 and my M.E. became very severe all hell broke loose.  I had the worst case of insomnia I’ve ever read or heard about.  I once went 3 entire weeks without sleep, which is supposed to be impossible but isn’t!   Most nights I’d manage about 4 hours, in 1 hour blocks.  I wouldn’t have cared if I’d managed to sleep during the day instead but that didn’t happen either.

I tried everything:

  • warm baths
  • essential oils
  • herbal teas
  • milky drinks
  • foods which contain tryptophan
  • hypnotherapy
  • relaxation tapes and techniques
  • acupressure
  • acupuncture
  • reflexology
  • Nytol
  • GABA
  • Melatonin………..and when things got much worse out came the big guns:
  • antidepressants of every variety
  • opiate painkillers
  • hypnotics, eg. Welldorm, Zimovane, Zopiclone
  • benzodiazepenes, eg. valium, temazepam, nitrazepam
  • …..and often a combination of all of the above.

One by one I became allergic to every single drug and could no longer take anything.  You have no idea my anguish…….no idea.

We rejuvenate in our sleep and because I wasn’t getting any my body simply crumbled.  My skin became dry and cracked, peeling off like it does when you get sunburn.  I completely lost my mental faculties and my speech.  My emotions were all over the place.  I was so dizzy I couldn’t move without the room spinning.  For 4 months I couldn’t even open my eyelids.  My hair fell out, obviously.  My muscles twitched and jerked literally inches off the bed.  I felt so nauseous I could barely even drink water, let alone eat.  My weight plummeted to under 6 stones (80lbs).

No-one knew what to do with me – I’m sure doctors didn’t believe how bad my insomnia was.  I remember a locum doctor coming to the house when I was really really ill and telling me “if you were tired, you’d sleep”.  If I’d had a knife I swear I’d’ve stabbed him through the heart.  I also had doctors tell me “stop worrying, you can’t die from not sleeping” which isn’t even true.  You absolutely can die from not sleeping – there’s a disease called Fatal Familial Insomnia where you just stop sleeping one day and within 3 years you’re dead.  I read about it and I’d actually developed many of the symptoms.  In desperation I contacted a sleep clinic to see if they would test me overnight to see what was going on but was told they only dealt with sleep apnea.  No-one really gave a crap.

I discovered, through my insomnia, that our brains absolutely have to dream.  So I’d dream while still being awake.  I’d lie there with my eyes closed and have the most amazing dreams, all the while being semi-conscious and able to hear the normal world around me (cars in the street, my clock ticking, someone moving around in the kitchen).  Bizarre doesn’t even cover it.

Of everything I’ve suffered in the past 22 years, nothing comes close to not being able to sleep.  It was the thing which brought me closest to suicide on dozens of occasions.  I’ve taken overdoses of potent drugs and didn’t give a damn if I died – I just wanted to sleep.  It didn’t work.  There were many ‘overdose’ nights, but one I remember clearly was taking antidepressants (maximum dose), plus 2 opiate painkillers plus 10 (yes, you read that right) sleeping tablets……..and I still didn’t sleep a wink.  I’m amazed my liver didn’t pack up though :-/

I suffered the tortures of insomnia hell for 15 years and then slowly, slowly my sleep began to improve.  I thought that if my sleep ever improved then my ME would also improve, but it actually turned out the other way round.  My M.E. gradually improved and eventually my sleep started to improve too.

Going on a low histamine diet helped enormously and I’m now back to sleeping more or less normally.  I can drop off to sleep within about 15 minutes, though still need the distraction of listening to a talking book, and usually sleep for between 6-7 hours.  I sometimes still wake around 1 or 2am for a wee, though after going low histamine that only happens now and again rather than every single night like it used to.

My gratitude at finally being able to sleep is overwhelming.  When you’re ill and in pain you need a break from the suffering and sleep offers you respite.  Ironically once my ME, and my sleep, had started to improve I finally got admitted to a sleep clinic for an overnight study which showed that my sleep, indeed, was rubbish………..but that was when my sleep was the best it had been in over a decade!  I soooo wish they’d tested me when I was at my worst and I could have proved how bad my sleep really was.  They still couldn’t tell me why was sleep was rubbish and just said “it’s common in people with ME and chronic pain disorders” – what a fucking waste of time that was!

To any of my readers suffering insomnia hell you have my deepest empathy.  Sleep deprivation is actually used as a form of torture when soldiers are captured and now I know why – it strips you of every emotional reserve you’ve ever had until you’d sell your own Granny down the river just for 30 minutes of shut eye.   But it can get better.  I thought I’d never sleep again but here I am, typing this after sleeping for 7 wonderful, unconscious hours last night 🙂  Hang in there.

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17 thoughts on “Insomnia

  1. Ripley

    Excellent! I just recovered from an issue with not enough sun and have been doing the light box protocol. The how histamine diet was the most critical part for me on piecing back together a good nights rest. You are right. Sleep deprivation is a tortuous hell and leaves others perceiving us as malingerers and gad about.

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  2. Fiona B

    In my late 20’s I had a spell of extreme work stress. I was unable to sleep for 2 whole weeks. Then crashed and slept night and day for 3 weeks. It was total hell. I packed in the job and slowly over 12 to 18 months managed to get well again. Still get insomnia but thankfully nowhere near as bad as the initial episode. I would not wish that on my worst enemy. Total respect to anyone who is going through it…for me it was an all time low. Thanks for sharing your experience Jak.

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  3. Elizabeth Milo

    Such an incredibly vivid description of a hell that most people can’t comprehend. Did you ever read Jocelyn’s (from No Poster Girl blog) posts about her sleep. She thought she was going to die. I know so many ME sufferers have the opposite happen where they can’t stop sleeping and I’ve often wished that I was on that end of the spectrum. I’ve had three sleep studies and my doctor can’t fathom the layers of problems or what is causing them. I’m going to try some medications again soon and cross my fingers that something helps. I have no doubt that if my sleep improved, I’d improve… But maybe it’ll be like you and it’ll happen once my ME improves. X

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        1. Jak Post author

          I had a look EM and that’s the only account I’ve ever read which has been as bad as my own 😦

          No posts on the blog for 18 months though, I do hope the author is still with us? :-/

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          1. Elizabeth Milo

            Jak, she is, I’m Facebook friends with her. Isn’t that description harrowing, though? She’s ok, but the same: Housebound, mostly bedbound, I think, dealing with encroaching insomnia, always.

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  4. Sarinda

    I have most all of the symptoms you listed on the other page. I had no sleep for 4 months, I would dose of for 5 to 10 minutes and then be awake night after night. I got to the point that I could feel all of my organs detoxing at night, I was so in tune with my body because I never slept. They were going to admit me to the hospital. Then I decided to take some DMSA, because I thought this must be part of my mercury poisoning. Within 30 minutes, I was back sleeping and I kept taking it until I was sleeping normally. That was years ago.

    Flash forward to today, I started having sleeping issues again, but this time it wasn’t heavy metals. I would go to sleep and wake up at 2-3 wide awake – cortisol rush- then get tired around 4:30 cortisol dropped, but then have to get up at 5:30. I was diagnosed with SIBO (small intestinal bowel overgrowth) very common in EDS, dyautonomia/POTs, MCAD (Mast Cell Activation Disorder). I also have Sjogrens, Hashimotos, etc…….. Many people with SIBO have the same insomnia pattern. Autonomic Nervous System dysfunction makes it very hard to get rid of SIBO, because of the gastro motility issue.

    Anyway, when my husband complains of only getting 5 hours of sleep; he has no idea, I have been existing on 3 hours of sleep a night for many years.

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    1. Jak Post author

      Sorry to hear about your insomnia Sarinda – I totally empathise. I’m sure you know this, but just for the benefit of my other readers, histamine can play havoc with sleep as it’s a stimulating neuro-transmitter. When I’m having a bad mast cell period and my histamine load is high my sleep always gets worse. Jak x

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  5. Sharon

    This is absolutely the first account of insomnia that I can relate to – thank you so much for sharing your story, horrific as it was for you. In 2010 I gave birth and 6 weeks later I was utterly unable to sleep, I would get perhaps 1 hour, then maybe 15 minutes here and there for the rest of the night. I didn’t know about histamines at the time and had no diagnosis (I’m not sure if it was MCAD, or hormones, or what). But it became so bad that I was hospitalized for a month and was trialed on every sleep medication known. Like you, I was beyond a zombie, I was dreaming while awake exactly like you, exactly that sensation. I would also have daily 30 second microsleeps, where I would just zone out, and I would realize a minute later I had been sleeping with my eyes open. I lost most of my ability to read, reading a paragraph like I just wrote, and comprehend it, could take an hour or more, it was an impossible task. I could barely walk a hall lengths distance. Passage of time had such a strange quality, and nobody really realizes just how looooong a night is,when you are up for the entirety of it. And yes, everyone said, when you are tired you will sleep. Nobody, doctors, family, nobody understood the impossibility of it, couldn’t nap during the day, just lied there stiff, impossible. No sleep studies done, just pumped with drugs that really, shockingly, didn’t even work. Fast forward, I actually stabilized within a year, still on antidepressants and benzos at the time, and I withdrew from them (that was another hell too). And then I developed MCAD and severe histamine intolerance once off the drugs. My diet is very limited low histamine now, as I mostly react to food, scents/chemicals, stress and emotions. I was managing OKish, but now, close to 6 years later, the insomnia is back. Likely due to a mast cell flare now. A different quality, not as severe, at my worst I will still get 2.5 hours sleep – and then other nights I will actually sleep maybe 5 broken up hours, so I am a zombie for sure, but nothing like what you went through, and what I went through. I’m sure most people would say my insomnia is severe now, but the mere fact that I am able to compose this and my hair isn’t falling out in clumps, I have gotten some sleep :). Just wanted to write and say thank you for your posts, I just found your blog. I think if I was not as bad as you insomnia-wise, I was certainly close enough to understand how bad it can truly get.

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    1. Jak Post author

      Hi Sharon

      I come across very few people whose insomnia experience mimics my own, but it sounds like you are one of the unlucky gang 😦 It’s simply torture and you just cannot function. Your experience of getting rampant MCAD when you came off the antidepressants is exactly what happened to me too. I was taking Mirtazipine to try and help with the insomnia and became allergic to it (as I do to any drug I take long term) and it was then I first got hives. I didn’t know that some antidepressants have anti-histamine properties, so while I was on them it was keeping my histamine at bay.

      So sorry to hear you’re going through another really bad patch sleep-wise. No-one understands what it’s like to have insomnia on that scale. Wish there was something I could say that would help, but hopefully it’s some comfort that mine did eventually improve and there’s always hope that yours will too.

      Jak x

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  6. Richard Lin

    Hi,

    I think I got MCAD after a bout of c-diff. Just wondering how you got your insomnia under control? Was it just from a low-histamine diet?

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    1. Jak Post author

      Hi Richard

      My insomnia had started to improve several years before my MCAD became a problem and I started on a low histamine diet. My insomnia was very much related to my M.E. and as that started to improve my insomnia started to improve – see this post https://mastcellblog.wordpress.com/2014/07/05/recovery/

      Low histamine helped my insomnia further but wasn’t the cause of it improving initially.

      Jak

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