Valerian Root - sweet dreams & cool for cats?

When I was younger, I used to sleep so well.
In fact, I could drift off to sleep and wake up quite refreshed at whatever time I'd decided I needed to rise. I've never liked to lie-in. I love the early mornings and hearing the dawn chorus was nothing but joy to start my day.

Then came M.E.

Painful, endless nights, like lying on a burning mat, limbs shivering, muscles twitching no matter which way I lie. Hot. Cold. Stiff. Nauseous. Sometimes I can get to sleep, but the sleep is fitful, and I jerk back into consciousness every hour or so. By morning, I'm so exhausted I drop off for longer than I like to, and suddenly it's late (mid-morning is late to me!).

I try to maintain a good sleeping pattern so my body clock isn't thrown, but my body has a mind of its own. When I've overdone things, or pick up a virus, like at the start of my latest big M.E. meltdown, I can sleep the clock round and never feel refreshed or even half human in the waking hours.

I've tried lots of things over the years. I asked my GP about MELATONIN some years back, but she wasn't allowed by her own professional guidelines to prescribe it. If she had, the cost would have been covered by my medical exemption certificate for Type 1 diabetes and similar lifetime conditions. I bought some online from a reputable chemist. Quite expensive to keep that up and I didn't see any huge improvement, though for a while seemed to help with actually getting off to sleep. It's what our bodies produce naturally when we are well and functioning normally. No side effects. Widely used to counteract jetlag etc.

Likewise, in the early days of diagnosis I was prescribed low dose AMITRIPTYLINE to help painkillers to work more effectively and aid relaxation and sleep. But these had many unwanted side effects like weight gain and tachycardia and were eventually stopped. They didn't really do anything for sleep, in any case. Not sleep that felt healthy.

I was never just "stressed", in any case, apart from feeling despair at not being able to function reliably. Plus the emotional struggle any human has with coming to terms with a disability that's an invisible illness, to boot. One that gives the world and their grandma a license to tell you how you could miraculously cure yourself if only you take the quack advice they heard from their next door neighbour but one! (Cures which invariably turn out to be for CFS, or because the patient went into remission which may or may not prove permanent!)

I've tried HEAT PADS, HOT WATER BOTTLES, RELAXATION TECHNIQUES, WHITE NOISE, NATURE SOUNDS, SEA SOUNDS, TREE SOUNDS, LAVENDER, HOPS (the plant, not the exercise!), TENS MACHINES, PERRIN TECHNIQUE, DIET MODIFICATION (more than all usual modification for diabetic health), TAI CHI (when able to balance for the less demanding moves!), COUNTING SHEEP. You name it. Most of these are comforting and relaxing. My favourite of them is LAVENDER, on balance. Heavenly scent, like summer fields and open spaces. A few drops on your pillow or combined with a heat pad can sometimes be just what you need to feel good. Sweet sleep may well follow. Though sometimes it doesn't, for long!

But till some lovely spoonie friends mentioned it on Twitter recently, I had never tried
VALERIAN ROOT (Valeriana officinalis).

I discovered I could buy 90 tablets of VALERIAN (3 bottles of 30 vegetarian 500mg tablets) from Amazon.co.uk marketplace for £2.50 + £2.03 shipping. They arrived two days later.

Only down side- they pong rather like a cross between Tom cat wee and something slightly unsettling you can't quite place! They are sometimes likened to catnip for sending cats wild! The smell is quite unmistakable from the moment you break the seal on the pill bottle. Apparently Valerian teabags and liquid forms have a similar effect. So I lock the doors before taking the lid off now. Don't want to be pulled up by the RSPCA for driving the neighbourhood kitties insane with desire!

I have taken 1,2 and some days 3 per night, staggered through the evening (this is the recommended dose on the label). On the days I have taken them I certainly feel drowsier (nauseous, exhausted drowsy) before bed. That can happen with M.E. too, so a bit tricky to quantify. I have got off to sleep quite quickly too, which is a good thing. I still wake occasionally through night but get back to sleep. Again, certainly not worse than before, though would have to try it when sleep problems are at their worst.

I have certainly slept longer. Last night, with some interruptions, almost 10 hours (10.30pm - 9am) which is excellent. The trouble is still, with M.E., I don't feel much refreshed by that good long sleep. Though an outing on Saturday had all but wiped me out. Still pain, nausea, brain fog (terribly much yesterday in particular), unsteadiness and very little appetite at the moment.

As usual, we'll see how it goes. So far, so good. Apart from the stomach-churning pong! At least your cats will love you!
.................................................................................................................................

Update Tuesday 24th Jan 2012: Took 2 tabs last night around 11pm. Slept with a few minor interrruptions until 11.30am. At which point mum texting to make sure I was ok and not hypo. Managed to struggle down by just after noon. BG 12.0 (high, but not that unusual if I ever sleep late). Headache, muscles weak & "rubbery", heart pounding on and off, chest sore and fibro tender in shoulders, wrists, knees. But on that evidence, the Valerian seems to be working as a natural sleep-promoter! Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Miracle - a GP who understands M.E.!

Haven't posted for a couple of weeks as on May 8th I started to feel "extra" symptoms I guessed were above and beyond M.E.'s daily challenges. Mum had had a streaming cold for about three weeks at that point. I thought I might have escaped. Wrong!

By Tuesday my throat was getting a little sore (see entry about Strepsils on the 9th, when I was still well enough to joke about it!) and my chest tight. Blood sugars were climbing into double figures without a lick of food. I was sweaty hot (too much information!), dithering cold and everything in between in the space of an hour.

Just a cold. Just a throat infection. Just a chest infection. Just a virus.

Greedy as ever, though, my immune system turned up its toes and hunkered down for a sit in!

I struggled on, getting weaker, more feverish and chilled, sicker, in pain, less appetite. I was so determined, as ever, to push through and take part in speaking at a local service, as planned.

By the weekend I could hardly swallow for the pain. A bit like swallowing razor blades wrapped in barbed wire. Not that I've tried it! A dry, itchy cough was developing too. 


Frustratingly, I had no option but to cancel taking part in the Junior Church's celebration that second weekend. I had promised to lead a full service plus communion the following weekend (yesterday), and a circuit service address this Thursday. I've had to pull out of them all.

My voice comes and goes at the moment. That often happens just with the M.E. on its own. With a virus I had no chance. I was getting almost delirious through the night and last Monday my Mum decided on going to ask advice at my local surgery. I was so sick I actually let her, for a change! 

A young GP in the practice (not mine) said she would come to check me out, as it was on her way home.

She confirmed what I knew well already. Severe throat/chest virus. There's a lot of it around. She checked all the usual Diabetes stuff - was I continuing to inject even though I could hardly eat? Yes - 26 years of experience there. D.A.F.N.E. sick day rules and all that. Yes - check. I told her I was upping my insulin etc to bring down my sugars (fasting sugar regularly in the 20s at that point, just through the fever/virus doing its bit) and doing so as successfully as possible.

Then came that miracle! (Better miracle than the recent latest "Rapture" nonsense, too!) The GP understood all about how M.E. would be affecting me at all times, not least when a virus gets a hold. She didn't question whether or not it was "all in the mind". She didn't need a crash course in what medical science is gradually uncovering. She's in her 20s and actually on the ball!

She left, saying that considering the concurrent conditions of Type 1 Diabetes plus M.E., I could be looking at at least three weeks before seeing much improvement. So I can do what my body so needs me to do and rest to let it regenerate itself slowly as only it can do.

This virus has already made my throat as impossbly sore as I remember it 11 years ago after my first bout of shingles should have warned me my body was struggling. Back then I had no idea that my many problems were part of M.E. (not just diabetes). Back then, the severity of the throat pain was inexplicable by my then-GP in Southampton. It would be another 6 years before M.E. was fully confirmed through the local M.E. clinic and first through many tests and a session at the Immunology and Tropical Diseases Unit.

The sensation of lying on a burning mat has returned to haunt me on a regular basis as my muscles twitch with enervation, the worst it's been for quite a while. Disconcerting, as you can imagine. I don't want to slip back this time, into al major relapse.

We all know, with M.E., the next crash is always potentially just round the corner. Overworking muscles. Overworking the brain. Doing two things at once. That random virus from a cold or flu or anything at all. Ostrich head in sand and eyes on the clouds or not.

The young GP was up to speed and so reliable. With a virus, she knew antibiotics are ineffective. That's more than several people with (supposed) nursing training had advised before her visit. Thank goodness at least some younger folks in the N.H.S. have some quality basic training! That's so often NOT been my honest experience in the past, particularly with well-meaning overworked souls trained years ago. She did say that with the underlying conditions, if I wasn't improved at all after a month, I might need some blood tests (my diabetic yearly bloods are due anyway) to make sure I'm rallying.


My faith in humanity restored, I'm on my way to recovery. At least to the state of health (such as it was) I had before this virus!

Yippee-dee! Might still feel like death warmed up, but my Spirit's back to soaring with hope that centimetre by centimetre, M.E. Awareness is slowly, slowly inching forward! :)

Statins? Better out than in ?

Statins? Is there something we should be told?

Reading up yesterday online about CoQ10 brought up lots of people's appalling experiences of the side effects of statins, which deplete CoQ10 in the body.  As I mentioned in my last blog entry, I was put on Simvastatin not long before my total collapse with M.E. that left me housebound and bedbound for much of the time back then and still affected now most days, even five years later.



A friend emailed me after reading yesterday's blog (thanks, friend, you know who you are!) to share his own experience of the devastating effects of taking Simvastatin. From a fit and competent athlete, he went to a life of severe pain to the extent he was considering hip replacements! When my friend had stopped taking them, he was quickly free of the intense muscle pains his own doctor had failed to link to the statin therapy! His doctor still insisted the statins could save life with lowered cholesterol. But what's the point if you are too crippled by their side effects to have any quality of life? Let US decide what's right for us, given all the facts, please!

Another friend of his with Parkinson's disease (another illness that involves the central nervous system) was experiencing his own dire consequences from taking statins that left him unable to drive from pain. Merely stopping taking Simvastatin made those extra crippling symptoms disappear within days!


Another friend of mine, in her seventies now, also had to discontinue taking statins some years back because of the pain caused in her muscles and nerves. Online, the anecdotal evidence that some are made much worse by statin "therapy" is overwhelming. If you're in any doubt, just do a bit of googling on "statins"!


A couple of years ago, after going on the Type 1 Diabetes Carbohydrate Counting course that helped me reduce my high insulin intake by about a sixth and so very rapidly drop the extra few stone I'd piled on after becoming unable to exercise and walk/cycle everywhere as I'd done all my life before M.E., a diabetes nurse was looking at my meds list. She saw the statins there, recommended for all diabetics with a history of heart disease or stroke in the family (my maternal gran died at 52 from atherosclerosis, my dad had a stroke at 45 and died without recovering at 66 plus lots more related circulatory disease on both side of my genes).


Although she had no experience of M.E., she knew some of the symptoms like profound disabling fatique and muscle/nerve pain, and suggested I try coming off the statins for a week or so to see if it made any difference. I did, and maybe because I was going through a "better" period, didn't really notice a dramatic difference and so didn't pursue it further.

I went back on them so (typical me!) the doc wouldn't notice my statin prescription had been reduced without consultation, to spare her feelings! I was also euphoric over the new better diabetic control and being freed to lose the weight the M.E. had so frustratingly slapped on me. (Glad at last to be free of the misguided question: "Ooh! I thought they must've put you on steroids!" on top of everything else!).

Now I read online that one doctor with a particular interest in M.E (Dr Sarah Myhill - who got struck off at one point, I believe, for not toeing the party line of the NHS and drug companies with her insightful advice to desperate patients), says:

"My guess is that statins by reducing the cholesterol that the brain loves, are contributing to our current epidemic of Alzheimer’s Disease. Certainly it is rare for my CFS patients to tolerate statins – nearly always they are made ill by them." (c) Dr Myhill's own website @ www.drmyhill.co.uk


Then a full explanation here on the U.S. www.ncbi.nlm.nih.gov site:

"The results show that lowered levels of CoQ10 play a role in the pathophysiology of ME/CFS and that symptoms, such as fatigue, and autonomic and neurocognitive symptoms may be caused by CoQ10 depletion. Our results suggest that patients with ME/CFS would benefit from CoQ10 supplementation in order to normalize the low CoQ10 syndrome and the IO&NS disorders. The findings that lower CoQ10 is an independent predictor of chronic heart failure (CHF) and mortality due to CHF may explain previous reports that the mean age of ME/CFS patients dying from CHF is 25 years younger than the age of those dying from CHF in the general population. Since statins significantly decrease plasma CoQ10, ME/CFS should be regarded as a relative contraindication for treatment with statins without CoQ10 supplementation."


So now's the moment to try again.

Last night I stopped my statins (40mg per day), to see if they indeed are causing me more grief than I realised. I'm continuing with the CoQ10 (50mg today), which will hopefully redress the balance of the CoQ10 the statins have leeched over the years! Also, continuing with the Enada NADH (15mg) my other friend recommended from her sister's positive experience of it, which is yet another way to supplement the mitrochondrial pathways to ATP energy my body lacks.


Thanks to all friends online and off for your wisdom, kindness, patience, humour and loving support over a lifetime. One day, you'll have the real me back, game for anything, overtaking dawdlers in the street, full of beans... but maybe not statins, any more!

I could open a ruddy pharmacy, me! But maybe statins won't be wasting space there for long...

Enada NADH Progress Report Day 2

Well, quick update on the Enada NADH received yesterday.

The tablets are small and very easy indeed to swallow. Mind you, I'm known for being able to swallow the most revolting and/or huge pills without breaking my stride! Diabetes "metformin" tablets are my least favourites and can even make me shudder and wince!


Took two 5 mg Enada tablets (i.e. 10mg) when I got the package from Amazon through the post just before lunch yesterday.
Nothing dramatic through the day, which isn't surprising. Most courses of medicines will need a period of time before they "kick in".


Today, took another 10mg dose before breakfast which consisted of fruit, rasberries to be exact, plus a slice of toast. That's about half a carb of raspberries (about 35g) plus 2 carbs of toast. My morning ratio for my fast acting insulin (Novorapid) is currently 1 +1/2 times each unit of carb, so I took 4 units of Novorapid, plus my usual 6 units of basal insulin (Levemir), which is half my daily dose which I take split in half at 9am and 9pm to help it last through the entire 24 hours.

Hadn't slept well last night, and so woke with "rubbery" limbs, slight headache, cold hands, spells of dizziness as I move about. Nothing unusual, really, and a relatively "good" day, as I am now up and about. 

My BG before lunch was 3.9. Hypo to some, but quite normal for me before a meal. My BG after fasting this morning was 7.4, bang on normal. I get a lot of the "Dawn Phenomenon" coupled with many episodes of the opposite "Somogyi Effect", so I'm always pleased to see a normal reading first thing! I'm sometimes in double figures then, due to the above mentioned ie high after a night hypo ("Somogyi Effect") or high because of the body's adrenal and hormonal responses to the "fight or flight" of early morning ("Dawn Phenomenon"). So far, so good.


Through this morning I've been borderline hypo twice, at about 10.30am and 11.30am. I get very few hypo warnings these days, apart from a kind of "glowing fog cloud" in my field of vision when my blood sugar drops to 1.9-2.2 ish. Yes, alarming to some, normal for me throughout the 27 years I've been diabetic! 


On those occasions I took 3 jelly babies (fast acting sugar, 10g) and a plain rich tea biscuit (not so fast acting 10g) to bring me back into normal range. Before lunch (soup and a slice of bread with a chunk of cheese) I was 4.5. I took 1 tablet more (5g) of the Enada (15mg in all today) to make sure I'm neither under or overdosing myself. The recommendation on the packet says best to take it in the morning, which makes sense as more energy expended during day than at night.


So far: borderline hypo most of the morning, which can happen anyway at times. Any more hypos and I'll have to start wondering if the Enada is a cure for Type 1 diabetes instead! I do wonder if I'll find that with the extra energy the Enada may be encouraging my body to store, I may need less or more insulin (less would seem the case, if any, from this morning, but of course, this is far too early to make any judgments or changes). There's the wise "Three day rule" in insulin therapy, that adjustments should only be made on the evidence of several days, rather than switching amounts around willy nilly.

Activity levels this morning were things like catching up with email and checking in with friends online, cleaning the downstairs loo, making a Mother's Day card for the weekend (already partially made), feeding the birds, pulling the wheelie bin back in (my kind neighbour drags it from the kerbside to my back gate for me), doing a load of washing. Rested in between each of these to some extent. At this moment (early afternoon) I have the vaguest headache still, tingling in my hands, ringing in my ears from time to time and still sore glands/throat. Have to bear in mind that I led my one service per month at the weekend, which usually takes every last ounce of energy and co-ordination I have and can take a very long time to recover from, even on the best of weeks.


I feel no worse or better than normal. My mind was racing in the night, as often happens with illnesses like M.E. that involve disturbed sleep patterns, so I won't read anything into that. I just take a bit of time for quiet prayer and a little gentle jazz till I drift off again! Or just lie quietly and let the world softly turn! I'm just reporting this for the record, if it might help anyone else on their personal journey.


Stick with me.
I'll report back again soon on this one.