Archive for the ‘Medication’ category

My experience with Restless Leg Syndrome

July 22, 2015

Believe it or not, the cat is the one who made me realise that I have Restless Leg Syndrome.  It had built up gradually over the years, I suspect, and I was used to the fact that I would have an irresistible urge to move my legs around while I was in bed at night.  It wasn’t until we were curled up watching TV one evening, with my legs up on the sofa and the cat sitting on them, that I realised that I really, really wanted to move my legs, but I couldn’t without disturbing the cat.  (It is amazing how much humans will do in order to avoid disturbing the cat.)  Then I thought, it’s the evening, I’ve got my legs up, I have that horrible urge to move them, hang on a minute, I know what this is!

RLS is a tricky disorder to treat.  All of the medication options are the sort of drugs that are not to be taken lightly, with a high rate of side-effects and/or tolerance/withdrawal problems.  The doctor tried me on ropinirole, which affects dopamine levels, but oddly enough it just made it worse.  Anti-epileptics such as gabapentin (Neurontin) or pregabalin (Lyrica) are popular, but I hadn’t done well when I was tried on gabapentin for nerve pain, and the horrendous withdrawal I experienced from it is actually when the RLS started.  Opiates and opioids are also commonly used.  I haven’t been able to tolerate opiates such as codeine since I had my gallbladder out in 2012, and while I do take the synthetic opioid tramadol for pain, I can’t use it at night.  Benzodiazepines are another option.  Those work for me, and I often use diazepam as a muscle relaxant in combination with tramadol for pain as well as very occasionally using temazepam for insomnia.  However, I wouldn’t want to take them every night due to the very high risk of tolerance, which is where they stop working unless you keep raising the dose, so that eventually you end up on a sky-high dose of a drug that’s no longer working and have a hellish withdrawal to go through.

Thankfully I was in a good RLS group on Facebook where people discussed iron.  (Well, mostly a good group.  It was prone to people barging in trying to sell quack products such as copper bracelets, but they were eventually dealt with.)  It turns out that RLS can be a symptom of anaemia, and iron supplementation will relieve symptoms for a substantial number of people.  One of the irritating things about having ME/CFS is that so many of its symptoms overlap with those of other conditions, such as anaemia, and another irritating problem is that this makes doctors far less likely to go through the diagnostic procedures for other conditions.  They just wave you away with “it’ll probably be the ME”.  I had the symptoms of anaemia written all over me, but fatigue hardly looks unusual when you have ME, and I was getting doctors telling me that it was perfectly normal that my lips kept turning blue!  Interestingly, my new dentist has been spotting various signs that I’ve had anaemia, so I’m glad someone can notice it.

The next problem is that doctors are willing to run blood tests, but the NHS reference ranges for anaemia are on the wimpish side.  In most countries, they will take action if your ferritin (iron stores) is below 25 or 50mcg/L, even 75 in some countries.  In the UK it’s a mere 12.  Mine was 21.  We were stalled until a kind person from the RLS Facebook group sent me an article about how your ferritin should be over 75 if you have RLS.  I printed it off, sent it to the GP, and she prescribed iron tablets at last.  For some reason she initially put me on one 65mg tablet of ferrous sulphate a day, and when I checked with the pharmacist, she said that this was the maintenance dose, the therapeutic dose was three tablets a day.  I raised this with a GP, who muttered something about how they hadn’t wanted me to get constipated. I assured him that I was capable of working with that particular side effect (which never happened anyway) and really did need to have this treated, and he put me on the correct dose.

Finally, I had something that worked.  Looking back, it’s not surprising that I was anaemic.  I am on two medications, ranitidine and omeprazole, that wipe out my stomach acid, so I don’t absorb nutrients as well.  I had no idea this was the case until I had tried a low dose iron supplement, experienced absolutely epic farting on it, posted on a health forum to see if anyone had ideas, and someone there who’s a nurse explained to me about the low stomach acid problem.  Once I started taking digestive enzymes, which also have a bit of betaine hydrochloride in them, that sorted out the farting issue, and I am extremely glad I had that under control before I started on the prescription level of iron, which is nine times as much!

This, by the way, is why you shouldn’t attempt DIY iron supplementation.  The amount you can buy in multivitamins and such is too low to have any effect on a serious problem, and the prescription level is not something you’d want to be taking unless you really need it, as too much iron is bad for you as well.  So go and get your ferritin tested if you think you may have low iron stores, make sure they tell you the exact result, and argue you it if you have to.  (I can’t find that article about preferred ferritin levels in RLS just now, but this website discusses it to some extent.)  If you do end up on iron, it’s commonly agreed that you should be supplementing with Vitamin C as well, partly to increase iron absorption and partly because it can help counteract the constipation that iron pills may cause.  The NHS doesn’t supply that part, just as they don’t help out if you have low stomach acid, so you’ll have to find it yourself, but Vitamin C is cheap and easy to sort out.

Once my ferritin levels were testing as being above 75, the GP suggested that I go down to one tablet a day as a maintenance dose.  The RLS promptly returned, but it went away again when I changed to two tablets.  Presumably I need a higher maintenance dose because of the low stomach acid issue.

As for the cat, she was eventually persuaded that someone who changes position at night as much as I do will never be a good nighttime cat mattress, whereas my partner sleeps like a log and is thrilled to have her roosting on his ankles.  I get plenty of kitty snuggles in the daytime, never fear.

How to shift your bedtime/waking time to earlier

February 12, 2010

When I was using light therapy alone, I found that my 25 hour pattern shifted to 24 hours beautifully but that sooner or later, I would stay up too late and would end up stuck on falling asleep at 4 am or so again.  DSPS is a tough nut to crack.  This was in the days before I found darkness therapy, which has made my sleep/wake pattern rock solid, so here’s how I treated it at the time.

My preferred sleeping tablet when I need one is 20mg temazepam; many people find that 10mg is enough, but I need a higher dose.  While my GP advised me that I should be able to take it for up to a week, I found that taking it for a week straight caused rebound insomnia when I stopped, presumably because the ME/CFIDS makes me over-sensitive to medication.  I find that taking it for three consecutive nights is fine, so I work with that.  It’s entirely possible that I’d be fine with five nights, but I’ve never needed to try.

I would always recommend strongly that you discuss this with your GP.  They should be made aware of your sleeping problems anyway, even if you’re trying to solve them yourself, and sleeping tablets are fairly serious things, even the over-the-counter ones.  Discuss which sleeping tablets will best meet your needs, and if you’ve had a sleep problem for a while you’ve most likely tried several by now anyway.  Do tell them that you will only be using the tablets for a few nights in order to shift your sleep pattern, as otherwise they will be a lot more reluctant to let you have any meds.  I’ve managed to convinced a GP who’d never met me before to let me have four sleeping tablets for this purpose when it was an emergency (missed flight, unexpected night flight), and I doubt that he’d have let me have anything at all if I’d just wandered in to say that I was a bad sleeper and wanted some drugs please.

I’ve always been able to move my sleep back enough over three days using this method, but if I had needed to control a larger shift I would probably have done three days, waited a week, and then repeated the process.  My general lightbox treatment time is 45 minutes, but for this I would sometimes use a longer treatment time to help reinforce the circadian shift.  As far as I can recall, I used an ordinary alarm clock to make sure I got my light therapy at the right time the next morning, but dawn simulation would probably be even better.

Let’s assume that my bedtime is usually 1 am but has shifted to 4 am.

Day 0 – bed at 4 am, wake the next day at 12 pm.
Day 1 – sleeping tablet at 2.30 am for 3 am bedtime, bright lightbox at 11 am.
Day 2 – sleeping tablet at 1.30 am, lightbox at 10 am.
Day 3 – sleeping tablet at 12.30 am, lightbox at 9 am.
Day 4 – no sleeping tablet, lightbox at 9 am.

After that I would relax and use the lightbox whenever I woke up, instead of setting an alarm clock.  This method worked for me every time, including when I had to go on a night flight and deal with a 3 hour time difference to boot.

If you are using darkness therapy, you may not need the sleeping tablets at all.  Just put on the tinted glasses/switch over to orange lighting an hour earlier every evening.  The usual recommendation is to commence darkness therapy three hours before your desired bedtime, though some people find that they get sleepy too early if they do this.  Obviously getting sleepy too early is not a deterrent for DSPS sufferers!

For the above problem, I’d suggest starting the darkness therapy three or four hours before your current bedtime to begin with, and seeing what happened.  It may take a few nights to kick in fully.  Use the bright lightbox when you wake up.  You can wait until you wake up naturally, depending on how effective the darkness therapy is for you, or you can set an alarm so that you make yourself use the lightbox an hour earlier every day.  Since you’re not using sleeping tablets and therefore don’t need to worry about getting the process completed in a hurry, you can try shifting your sleep more slowly, even by 15 min a night.  Keep a diary of what you’re doing so that you don’t lose track.

If you have Non-24 Sleep-Wake Disorder, I’d suggest waiting until your circadian clock has shifted around to your ideal bedtime and waking time before trying anything, then hitting it with light therapy, darkness therapy and/or sleeping tablets to stabilise it there.  The sleeping tablets are a short-term measure, but the light and darkness therapies can be continued full-time and indeed should if you have a circadian rhythm disorder.

If your problem is jet lag or shift work, rather than a misbehaving body clock, you’ll have to experiment to find out what suits you best, and you may only need to use light/darkness therapies occasionally.  Sleeping tablets are best reserved for occasional use, so if you are going to be moving your sleep pattern every week or so, I wouldn’t advise them, and I would certainly suggest that you discuss this with your doctor.  Some companies give their night shift workers yellow safety goggles to wear when they go home in the daytime, so that the light on their journey won’t keep them awake.

If your problem is instead Advanced Sleep Phase Syndrome, then use bright light therapy in the evenings instead to keep you awake for longer.  I have absolutely no idea how darkness therapy would factor in here, but if you’re using it for other purposes (e.g. sounder sleep), I would imagine you would want to be careful not to start it too early in the evening, and remember that darkness therapy alone is unlikely to shift your body clock in the desired fashion.  Light therapy will be the key here.

For any of these problems, dawn simulation alone is unlikely to be enough to shift your body clock, at least in my experience, but may be very helpful in sticking to a good pattern once you have one in place.  I recently went back to dawn simulation, and while I had already stabilised my body clock using light therapy and darkness therapy by now, I think it may be adding a little extra help, and my partner is certainly finding that the dawn simulation makes it much easier to get up in the mornings.

Medication for sleep

January 26, 2010

Short-term medication

Doctors are reluctant to hand out sleeping tablets for good reason.  They’re most often highly addictive and can cause rebound insomnia, as well as the usual risk of side-effects.  They can be used sensibly, however.  If you’re going through a particularly stressful time such as a bereavement, sleeping tablets may be used for a few weeks.  If your bedtime has crept to far too late, sleeping tablets may be used for a short time (no more than a week; I can only do three days, then I get rebound insomnia), preferably in conjunction with bright light therapy, to move it back to where it should be.  Sleeping tablets can be scary things, so research side effects carefully and the first time you take a new med, make sure you can sleep in the next morning if need be.  I’ve tried Zolpidol and Zolpidem (Ambien), and while Ambien seemed to work OK at first, I tried it again and got hallucinations that night and was groggy for the next week.  I now use Temazepam 20mg for no more than three nights in a row, and probably do this a few times a year.  That said, now that I am nicely settled into darkness therapy, it doesn’t seem to be necessary.

Long-term medication

Most people shouldn’t be taking this, but instead improving their sleep hygiene and so forth.  If you have a sleep disorder that can only be helped by medication, it may be possible, though it should always be discussed with your doctor.  My sleep study showed that I don’t get enough deep sleep, as is common with ME.  I can improve my sleep hygiene until the cows come home, I’m never going to get enough deep sleep, so long-term meds make sense for people like me as long as I can tolerate them, and since I have only recently discovered darkness therapy, this is what my GP spent some time trying me on.  Rarely people will take the stronger hypnotics for long-term use, but it’s far from being a first port of call and I would not be able to do it myself.  Antihistamines and low-dose tricyclic antidepressants are common for long-term use.  I didn’t get on well with either: the antihistamines made me a zombie in the day but not particularly sleepy at night, while the amitriptylene (low-dose tricyclic) did great things for my sleep but caused too many side-effects.

I spent several months taking a herbal sleeping aid, Lifeplan Valerian Formula, before I discovered that I didn’t need it once I had the orange glasses for darkness therapy.  If you’ve tried herbal sleeping tablets before and found them useless, check the dosage you were taking, as most of the ones on the market are so low-dose that I doubt there’s more than a placebo effect going on.  The Lifeplan one has a nice reasonable dose, and some people take two capsules at a time.  Some studies suggest that valerian should be taken off and on to avoid building up a tolerance, so for half my cycle I took the valerian formula, and the other half (when I’m premenstrual and more likely to get anxiety) I took 600mg passiflora and 400mg skullcap at bedtime, both in capsule form by Biohealth herbs.  Now that the darkness therapy has kicked in, I’m just using the passiflora and skullcap, as they are useful to treat the PMS, won’t harm my sleep even when taken on top of darkness therapy, and would make me groggy if I took them during the daytime.  The main herbs for sleep are relatively well-researched by now and often come up as effective as benxodiazepines, so again do your research, make sure it’s a reputable manufacturer, and talk to your doctor about what you’re doing.  This should only be used long-term by people who have pretty much no other way of getting a good night’s sleep, however; if you’re reasonably healthy, just keep it for occasional use.

I’ve tried melatonin tablets but they didn’t do a thing for me.  They’re not used in the UK, which makes me fairly cautious of them to begin with, and it’s uncertain how well melatonin works when given in oral tablet form.  This site discusses the problems that can occur from taking melatonin tablets.  I prefer to use darkness therapy instead, where I’m stimulating my body to produce melatonin itself.  If it’s a long-term sleeping problem, I’d suggest trying darkness therapy before medication, unless you need the medication for other reasons anyway, such as low-dose tricyclic antidepressants for pain.