Tuesday, 12 March 2013

Sleep and time travel

I have been having an exciting time of it recently, traveling the globe (well, a week in Spain) and indulging in a spot of time travel whilst I was there (temporarily inhabiting the body of a frail 80 yr old woman, which was nice). All rather exhausting, so I've been thinking a lot about the land of nod and it's importance for health.

So, Spain. We had family 'do' on the Costa Blanca - My Grandma-in-Law had her 80th birthday, so we flew out to see her and had a wee break. Due to a hermetically sealed, sauna-like travelodge room and a restless toddler, we had no sleep the night before we flew.  So we get to Edinburgh airport in a state of advanced Zombie-ness. Industrial quantities of tea kept me going until we got to Alicante, when my legs decided they'd had enough and turned to silly putty. Cue using the buggy as a walking frame, feeling tired and ratty whilst trying to appease a tired, ratty two year old. By the time we'd got to the apartment, all I wanted was to pass out in a darkened room - but no sooner had I achieved unconsciousness when I was awakened by the arrival of a new temperature controlled chorizo and beer storage unit (a fridge). Marvellous. Whooosh, Da-da! I had been transported into the body of an octagenarian ex-pat, complete with achingly slow, shuffling walk, inability to tackle stairs without risking a coronary, and need to sit down every few minutes and gasp. Add in a bit of dizziness/tippyness, headache (like a dehydration headache but without the dehydration), weakness, tendency to swoon on standing up, shooting pains in muscles and joints and an encyclopaedic knowledge of the price of every grocery item in every shop in the entire town. It took 4 days before I could re-inhabit my own 39 year old body, blumin 'eck.

Mind you, if there is ever a place where you want to be 39 going on 80, this town is it. It's like a scene from 'Cocoon' - an endless sea of leatherette pensioners of various European origins. A finer array of tartan shopping trolleys and huge beige knickers cannot be found outside of Bournemouth. At every turn there are benches and mobility scooter hire shops (my vanity, tight fistedness and ego were the only things stopping me from hiring one). Rather than feel embarrassed at my dawdling, erratic gait, I fit right in - my relative lack of wrinkles surely just a result of recent radical facelift? It all goes a step too far when Grandma (80, arthritic, bad hip, very slimline) offers me her arm for support. I about died.
Basking like a lizard on the one good weather day we had.
It was  mostly a no-drug week, so with just my 'neutraceuticals' for medicine, I needed to sleep - 14 hours a day, toddler style. It worked, and 4 days later I was feeling relatively ok, and up to the punishing schedule of sitting about in armchairs chatting about clogs and cheese pies. The weather was mostly appalling and dodgy Spanish electrics meant the flat was cold, so I didn't get much opportunity for vitamin D replenishment, but we had a nice time anyway.  The night before we came back I had ran out of my sleepy supplement (GABA) so had a rubbish night and thus had to play the 'excuse me I'm a cripple with a whingeing toddler' card when it came to boarding the plane and jumping queues.

A night in my own bed, GABA'd to the eyeballs, and I was ok again, only to come down with my scheduled 4 weekly flare a day later- grrrr.... I still had three days to go before I could take my scheduled antibiotics, so decided to be a bit nawty. I didn't want to miss the opportunity of blasting the feck out of some spiros, so I took two days of Metronidazole (flagyl) at 400mg twice daily- cue super-herx within 10 hrs of taking the first dose. Woo - hadn't had that on Tinidazole (an antibiotic from the same class). Bleargh, felt rotten, legs and other symptoms got worse, tinnitus came back, but only for two days, which was  a relief and nothing compared to the herxes some people get. (The Metronidazole was purloined from my partner- a prescription for a dental abscess that never happened - another example of dishing Abx out like smarties for everything except Lyme)

So what had I learned? Flagyl is good shit, respect for the dawdling grannies out there (now I understand why it takes a whole day to go the supermarket), and the importance of sleep.

So, I thought I'd whitter on about sleep and how to achieve it. Insomnia has to be one of the worst, most bloody annoying symptoms of tick-borne disease. For me at least, both my Babesia and my Lyme seem to be responsible for that 'wired but tired' feeling. I get insomnia when I have my 4 weekly Lyme flare and also inbetween for bouts of 3-4 nights when I also have night sweats and tumultuous dreams (Babesia I suspect). I have always prioritised sleep and have been known to go to bed at 7.30 pm. I often nap during the day when my daughter naps (absolutely dreading it when she drops her nap!). My partner is fantastic and gets up with the wee one when she wakes, often at 5.30 am, and lets me get a bit more sleep.

My UK LLMD's had never really been bothered by sleep, but my US LLMD is BIG on sleep, they feel that if you don't get good restorative sleep, you will never heal, and I tend to agree. There is a paper on sleep quality and Lyme - Greenberg et al. 1995, which says "Greater sleep latency, decreased sleep efficiency and a greater arousal index were noted in Lyme patients. The median length of uninterrupted occurrences of stage 2 and stage 4 non-rapid eye movement (NREM) sleep was less in Lyme patients". I have yet to meet a chronic Lymie who doesn't have sleep problems, I think it's one of the most common symptoms. Here is a WebMD article on all the ways poor sleep can make you sick.

So, how to get some shut-eye when your brain is fizzier than a diet coke on a galloping horse? I was offered Lorazepam (Ativan) which is a quite hardcore controlled drug, a benzodiazepene. I thought, 'no, I don't fancy looking Like Zammo' and so politely declined. I imagine if you had really really bad insomnia, and didn't have a toddler to run around after first thing in the morning, then it might be an attractive option.  I asked my LLMD for an alternative and she suggested GABA  and/or Melatonin. Specifically, 500mg-1g GABA at bedtime and or 8-10mg melatonin at bedtime. She said the GABA was best for getting you to sleep and the Melatonin was best for keeping you asleep. I have found 600mg GABA at bedtime works fine for me, unless it's a really bad night, when I'll pop another 400mg. It was about £30 for 2 months worth, from a UK company called Biovea, I didn't bother with the melatonin. I haven't found any hangover effect, but then I'm always a bleary-eyed half-human corpse in the mornings anyway. If you wanted to go the herbal route, I've been told Dr Stuarts Tranquility tea is good. I've taken Valerian and herbal Nytol in the past, to no effect, but they may work for you. If you're thinking you might need prescription drugs to help you sleep, why not ask your GP? They might be useless when it comes to actually treating Lyme, but they may be willing to help with some of the symptoms. They can only say no.....

Of course pain may also stop you from sleeping. I am taking 10mg nightly Amitriptyline  which was prescribed by my GP for my Lyme-associated neuropathic pain. It's a very commonly used drug, and I've found it to be very effective.  At higher doses it is used as an anti-depressant, but at low doses, it is used for neuropathic pain. It does take about 2 weeks to start working, so you have to be patient. I was also prescribed two neuropathic pain drugs by my US LLMD- Gabapentin (Neurontin) and Lamotrigine (Lamictal), but I decided not to take them as they are quite heavy duty and my pain wasn't that bad. I understand why they were prescribed - for lots of people (when they herx especially), the pain is awful, so they wanted to make sure I could ride out the herx, hence their suggestion of being on these drugs a couple of weeks prior to starting the new protocol. My herxes have never been that bad and pain has always been a minor feature of my Lyme. If you are a person who has really bad, painful herxes, it may be worth asking your LLMD or even GP for something similar.

As well as the physiological effects of Lyme and co-infections on sleep, there are the anxieties caused by battling with doctors, worrying about your family, worrying about the money, information overload from too much time on forums and blogs, and the general stress of having this illness. It's no wonder Lyme forums are so active at night! Stress busters others have followed are swimming, yoga, Tai Chi, and walking. Personally, I like to get outside whenever I can, and walk if I feel up to it. I find nature a wonderful stress buster. I also try to avoid doing anything Lymey or be on the computer in the late evening and sometimes have an epsom salts bath with lavender before bed. Sweet dreams everyone.


  1. I took two weeks metronidazole recently for a persistent ear infection the lab said anaeronic but they don't bother to check what it is. Interestingly I had what I thought was a herx in my head and neck - interestingly reading the information leaflet it describes similar symptoms as encephalopathy - strange how when Lyme patients describe those exact symptoms to a doctor they are brushed aside as unimportant. Anyway the Met worked wonders on my legs better than they had been for months.
    So true you always know how sick a Lyme patient is by the nocturnal activities on Lyme forums. Thankfully my sleepless nights improved as my health improved on antibiotics but interestingly when not on antibiotics one of the first symptoms to return is the night sweats or to be more precise in my case it seems to happen early in the morning and seems connected with the pressure on the back of my neck when turning over in bed - sounds silly but I am sure there is a link perhaps one day I will figure out what it is.
    My greatest support with antibiotics was aspirin it works as an anti inflammatory thus helped arthritis pain, improved muscle weakness, calmed restless throbbing legs and seemed to help me get better quality sleep. LLMD and GP but were surprised at my claims LLMD said he had patients who were taking very high doses of pain killers and was surprised it helped me so much.I am sure it was the anti inflammatory affect although it could also have been the blood thinning affect who knows. For two years I took 300mg twice daily the last one an hour before bed with lots of water and some food and always dispersible.
    Sweet dreams Lymie wifey

  2. My favourite line: "A finer array of tartan shopping trolleys and huge beige knickers cannot be found outside of Bournemouth."