Introduction

Welcome to my feature on Sleep and ME: tablets and herbal supplements. Here I talk about:

  • Sleep dysfunction in ME/CFS and my own difficulties
  • Why I needed prescription sleeping tablets to help me sleep
  • How in time I was able to switch to alternatives
  • How long I trial new supplements
  • Herbal Supplements: my long term solution for better sleep
  • The ME spiral of insomnia
  • Resources and further reading

It took a lot of research, hard work, persistence, patience, habit-breaking and habit forming to see an improvement in my sleeping quality. I’m sharing my story in case anyone finds aspects of it useful, it is not intended as medical advice. Everyone is different and has to do what they think is best for them.

Sleep Dysfunction in ME/CFS

Non-restorative sleep despite sufficient or extended total sleep time is one of the major clinical diagnostic criteria of ME and the cause of this is not known. Many people with ME experience one or more types of sleep dysfunction, there are different types and not everyone will experience the same ones.

I found everything about sleeping difficult. At night I suffered from insomnia where I could get off to sleep and once I did (usually after 3am) I’d wake often. I would lie awake with pain, crushing fatigue and restless legs waiting until my physiological need for sleep would outweigh the level of pain and fatigue I felt. I would often only get around 4 hours and would have difficulty waking up, I’d feel half asleep until well into the afternoon or evening.

Sleep is absolutely critical to health and prolonged sleep deprivation will have a negative effect on various organs and body systems (including brain and immunity). Dr Myhill cites sleep as one of the key areas to address to help manage ME.

sleep and ME summary text box

Sleep and ME: Prescription Sleeping Tablets

As my ME became more severe I found it very difficult to sleep, partly from the ‘tired but wired’ feeling and partly due to pain. I’d drop off well after 3am and sleep fitfully. I woke feeling worse and even more tired than when I’d gone to bed. How that’s possible is a mystery, but many people with ME report feeling like this. I was completely incapable of sleeping in the day, I couldn’t even manage a short nap. Severe ME means being too fatigued or weak to eat large meals, but still eating regularly and fairly well. So I didn’t know why when I was waking in the small hours, I was feeling hugely hungry. I’d have to eat a few oatcakes before I could even hope of going back to sleep.

I’d never tried prescription sleeping tablets before as I knew that they could be addictive. I already felt every organ was struggling so didn’t want to further tax my liver and kidneys. But I was desperate and so my GP prescribed zopiclone. It helped me drop off much faster but I struggled to wake up in the morning; I’d still have a ‘sleep hangover’ at lunchtime. They leave a horrible metallic taste in my mouth and I don’t actually feel rested following their ‘induced’ sleep. Also, the list of potential side effects (from psychosis to hallucinations) is terrifying!

Prescription sleeping tablets are a short-term solution whereas ME is a long-term condition. So, I needed to try something else. I want something with long term benefits which has a positive and healthy impact upon my body and wellbeing. I decided therefore to do a deep dive into my sleep hygiene and make as many improvements as I possibly could. One of those improvements is what I take to help me sleep, another was my diet, finally I made a lot of changes to my sleeping environment based upon my sleep hygiene research. I’ve written this research up in the blog post on What is Sleep Hygiene?

Sleep and ME: Diphenhydramine (Nytol Original)

I managed to wean myself off Zopiclone, by titrating down (reducing) the dose and alternating with diphenhydramine. Diphenhydramine is an antihistamine which is sedating (causes drowsiness) so it’s used to help people fall asleep. It’s available over the counter but you may need to discuss your needs with a pharmacist. I started by taking the Nytol tablets and found they helped me to fall asleep sooner. I’d sleep for a few hours after taking the one-a-night but still often woke far too early. The sleep feels slightly more restful than after zopiclone. I was pleased to see this in my Fitbit results. The Fitbit indicated I was sleeping a bit longer and having around 30-40 minutes in the ‘deep’ sleep stage. Deep sleep is an essential stage supporting memory, hormones, cellular repair and energy production.

At the same time I tried the paleo-keto (PK) diet which kept my energy and blood sugar much more stable. I found it stopped me from feeling hungry if I woke in the night. You can read a chapter from Dr Myhill’s book about the benefits of the PK diet here. It took many months to be able to fully stop using zopiclone and reply on Nytol liquid instead.

My pharmacist told me that diphenhydramine is not recommended for prolonged use in treating insomnia. Whilst it’s much better than Zopiclone, it’s still not a long term answer. So eventually I started to cut down my reliance on Nytol. I switched to the Nytol liquid as it’s much easier to control the dosage than with tablets. I would take it every second or third night and then gradually reduce the dose. Alongside I started to use herbal sleep supplements instead.

Price and Availability

I still occasionally take Nytol liquid if I’m having a symptom flare and know I’ll severely struggle sleep because of it. For more information about Nytol see their website. Nytol is available in most High Street pharmacies, a pack of 20 one-a-night tablets is around £6.29 and a bottle of Nytol Liquid is about £10.99.

a bottle of nytol liquid, a box of bee rested and a blue silk eye mask is lying on a white blanket

How long I trial new supplements

For a new supplement or long-term medicine I always give around 3-4 weeks trial. For certain prescription medicines it may be longer, but I always discuss with my GP how long before I see an effect and what side effects I can expect. I have several reasons for my 3 week trial:
a) my body needs a little while to get used to a new substance(s)
b) once my body is used to it, it might need a week or two to for the full effect to build up
c) it is difficult to judge the effectiveness whilst controlling for other factors which might influence how well it works. E.g. if I’m having a particularly stressful time or am in a pain flare, I can’t make a fair assessment of how good a new supplement might be.

Sleep and ME: Herbal Supplements

The first herbal alternative I tried was herbal Nytol (green rather than blue packaging). It didn’t seem to do much for me and I could feel the tablets sitting in my stomach for a long time after taking them. I also tried a couple of valerian supplements and 5htp, the latter helped a little but the valerian didn’t do much.

I then decided to try Unbeelievable Health’s Bee Rested because I find the Bee Prepared Max Strength immune support very helpful (see my review here). I’ve been taking Bee Rested for just over 3 months now.

It took a few nights for me to start to feel the benefit of taking two Bee Rested per night. After around 10 nights, I noticed I began to wake up less often in the night. Then, just over 2 weeks after I started taking Bee Rested, I started to feel the full benefit. Not only do I wake less but I feel I get better quality sleep because it feels restorative. In the mornings I feel like I’ve actually slept and I’m awake (no sleep hangover). When I checked my Fitbit sleep stats, it turned out that was indeed sleeping better because I was getting an hour or more of deep sleep each night and falling asleep 30-60 minutes sooner.

If I run out of these I notice that after a few days without them my sleep starts to suffer; it takes me longer to drop off and I wake more often in the night. I now have them on ‘subscribe and save’ from Amazon so I don’t run out and start to spiral (see below).

Active Ingredients, Price and Availability

Bee Rested contains 9 therapeutic ingredients to help you rest and sleep which are formulated by nutritionists. These are: bee propolis, chamomile, lavender, hops, Montmorency cherry, 5htp (the precursor to serotonin and melatonin) and saffron. For best results, it should be taken continuously for 2 – 4 weeks. A box of 20 capsules of Unbeelievable Health Bee Rested costs around £12.99 and is available from a wide range of health shops. These include: Holland and Barrett, Planet Organic, Amazon, Ocado and the Unbeelievable Health shop.

The ME Spiral of Insomnia

I find insomnia to be an ongoing challenge with ME. If I have one night where I don’t sleep well it can cause worse ME symptoms the next day. I try to do everything I can to sleep better the following night. This isn’t always possible though and unfortunately if I have several nights of poor sleep I enter the ‘spiral of insomnia’. Each day after poor sleep leaves me feeling worse than the previous one and when I feel worse (more fatigued and in greater pain) I invariably sleep worse too.

Breaking out of the downwards spiral and restoring my sleep/wake routine becomes very difficult when my symptoms are severe due to lack of sleep. A few things I find that help are being outside in day light and fresh air (not easy when bed bound due to symptom severity). Having a variety of different activity types during the day can also help, but only a little of each to avoid overstimulation. Finally eating and drinking things conducive to sleep (i.e. no late caffeine or rich meals) and following my evening routine and supplements.

Resources and Further Reading

ME Association Page on Sleep Disturbance and ME

Epsom and St Helier NHS Trust Sleep Guide for people with ME/CFS

MEpedia Sleep Disfunction Page

Scientific paper reviewing the research on ME and sleep abnormalities

 

 

 

This Post Has One Comment

  1. Flo

    Haven’t been able to sleep properly for a weeks and found this through internet search. I don’t have me but it’s been really useful reading this.

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