Lyme disease, mental health & insomnia

Sleep is like health. You don’t realise what a luxury it is until you don’t have it.

The last couple of weeks I have, completely out of the blue, started struggling with insomnia. This is a common problem for people with Lyme disease and yet, somehow, I have always managed to escape it.

Well, not always. When I very first got sick as a teenager, one of my most prominent symptoms was severe depression. I now know this is very common in Lyme disease, but at the time my family and I had no idea why I was suddenly so mentally unwell. Seemingly out of nowhere I went from a happy, healthy child to a very distressed and mentally ill adolescent. Sleep problems are one of the 9 symptoms of depression as defined by the Diagnostic and Statistical Manual of Mental Disorders (DSM) and can present as either a) insomnia or b) hypersomnia (i.e. sleeping too much). For those few years when I was very unwell, I experienced terrible insomnia. I remember being prescribed sleeping pills when I was about 14 years old, and getting high the first time I took them.

The first few years of my illness were dominated by mental health symptoms. I had physical symptoms too, but the mental health problems were severe and impairing on a daily basis. I had a myriad of treatments, from antidepressants to family therapy to counselling. Nothing made any difference whatsoever. Presumably, because none of it was really getting to the crux of the issue (the Lyme disease), although I guess I will never know for sure that the depression I experienced was 100% down to Lyme, and it would be naive of me to say otherwise.

Anyway, fast forward a few years, and as my physical health gradually worsened, my mental health actually improved. I won’t say that I was completely mentally healthy all the time. Firstly, because I really don’t believe anyone is mentally healthy all the time. Secondly, because there were lots of challenges associated with being ill. Dealing with feeling like crap so much of the time, managing a job and relationships, not knowing why I was ill, feeling dismissed and misunderstood by doctors, to name but a few. So yes, I had mental ups and downs and some days were a real struggle. But I didn’t feel depressed. Not in that pit-of-the-stomach, deep within your soul, “I am miserable” way. And so with that, the insomnia lifted.

Over the last 5 or 6 years, while my mental health has remained steady but my physical health has declined, my sleep has been good. I may have experienced the odd sleepless night if there was something particular on my mind, but on the whole, if anything, I slept too much. As is common in people with chronic fatigue and various other chronic illnesses, most nights I felt like I could sleep for 10 hours if I allowed myself, and no matter how much I slept, I woke up feeling exhausted, unrefreshed and a little hungover. I can’t say that’s been fun, but jeesh, it’s better than tossing and turning for hours on end.

The last few weeks, my mood has taken a bit of a dip. I don’t know why, but I know that I am not alone. Just as depression is common in people with Lyme disease, it is especially common while people are being treated for Lyme disease. Neuroinflammation, reduced neurotransmitter production, the stress of going through treatment…there are many hypothesised reasons why this might be. Along with the dip in mood, insomnia has reared its ugly head. And the trouble with insomnia, is that it’s a slippery slope. What starts off as one night of an unexplained inability to drift off, soon becomes worry about having “another night like that” as you become increasingly fixated on the clock and worrying about how many hours you’ll be behind if you fall asleep right this second.

And for those of us with chronic illness, there is an added pressure. We are repeatedly reminded of the importance of getting plenty of sleep to allow the body to rest and recover. My doctor lists sleep as one of the crucial “foundations” that need to be in good order before trying to tackle Lyme disease. If sleep is poor, the body cannot effectively heal, he argues. Makes sense to me, but I’m not sure that having your mind scream “YOU NEED TO BE ASLEEP RIGHT NOW OR YOU’LL NEVER GET BETTER!!” is especially conducive to drifting off into a peaceful sleep.

I had a few nights of taking some over-the-counter sleep meds, but they add an extra nice punch to the usual Lyme disease hangover I wake up with each morning, and I’ve yet to decide which is worse: staying awake all night, or spending an entire day feeling drowsy, irritable and like I had 10 cocktails last night (without the fun of having 10 cocktails). So for tonight, I have accepted my fate of not sleeping and am embracing the opportunity for late-night PhD reading (surprisingly productive), selling some shit on ebay (I have a surprising amount of shit), and of course, writing on my blog (unsurprisingly therapeutic).

7 thoughts on “Lyme disease, mental health & insomnia

  1. I’ve had similar issues with sleep, starting when I was 9. I’ve been taking Trazadone at bedtime for several years now because if I don’t get enough sleep, I go completely insane. I’ve also tried natural methods, using herbs such as valerian, hops, etc. Hope you get some rest soon.

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  2. My problems have always been mostly psychiatric and neurological, too. Melatonin and herbals and even Benadryl often haven’t worked for my insomnia. I briefly took the narcolepsy drug Xyrem (aka the pharmaceutical version of the “date rape drug”), and it didn’t even knock me out as easily as it was supposed to! But now I’m finding that low-dose Seroquel (also for my mood symptoms) is one of the few things that works. I hope you can get some good sleep soon, too!

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    • Really interesting to hear your experiences, melatonin is something several patients have suggested to me, along with 5HTP. Others have mentioned that a low dose SSRI has worked wonders for them. I think there are a few things for me to try which is positive.
      Really glad you’ve got some relief from the seroquel.

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  3. I’m on Seroquel for my mental health battles. Usually, I’ll pop one at night and I fall asleep right away. This past week it’s been impossible to fall right asleep. I toss and turn thinking about what Lyme is doing to my body. The other night I was up until 1:00am sitting on the couch in the dark researching Lyme disease. I can’t shut my brain off at night, which again the Seroquel should be helping with. It’s really frustrating to find mental health balance while also dealing with the physical side of Lyme or any chronic illness. Thanks for sharing your story. It’s nice to meet others who go through the same things that I do.

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    • Thanks for your message! That sounds really frustrating, and I can totally relate. It’s so hard not to worry when you know the thing you’re struggling with (e.g. Sleep) is exactly the thing your body needs to recover!
      I limit my time researching Lyme disease now as I find it really difficult to stop. A therapist once suggested to me setting aside a 30min slot in the day to research. Outside of that time if I think of anything, make a note and you can research later. I found that really helpful to avoid getting in a rut.
      Wishing you all the best on your journey x

      Liked by 1 person

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