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Chronic Insomnia... at the end of my tether. WTF can I do?

(32 Posts)
Grockle Mon 12-Aug-13 05:05:44

I haven't slept properly for years. I'm exhausted. I go to bed tired & yawning but toss & turn. In a good phase, I can sleep for 5-6 hours but will wake 2-6 times each night, sometimes just for a few seconds and other times for minutes or hours.

In a bad phase, I'll sleep for 2 hours a night.

I also have chronic illness that can cause extreme fatigue & severe pain. At the moment, I'm quite well, apart from the sleep thing but I can't carry on like this.

Sleeping tablets send me to sleep but they are strictly rationed & I am therefore unable to have them more than a couple of times a week.

I have tried:
ADs (all sorts)
Strong painkillers (Gabapentin, Tramadol, Amitriptyline)
Rescue remedies
lavender oil
hot baths
warm drinks
Good sleep hygiene
hypnotherapy

WTF else can I do? I can't live like this.

Grockle Mon 12-Aug-13 08:15:47

Anyone? sad

prettyanddainty Mon 12-Aug-13 08:35:05

I am going through insomnia myself, it's horrible sad

kitsilano Mon 12-Aug-13 08:43:50

Have you tried Melatonin? It works for me, non addictive, helps you drop off but doesn't make you groggy the next day. It's available OTC in the US and although not available in shops here, you can easily buy it on line from health food shops.

swallowedAfly Mon 12-Aug-13 08:50:02

you can be prescribed (and i know this sounds terrifying) a tiny dose of an antipsychotic called quetiapine. non addictive, can be taken as needed and isn't seen as a 'drug seeking', controlled type substance.

at larger doses it's used for psychotic illness, mood stabiliser, etc and at lower doses can be prescribed for anxiety, insomnia and as an adjunct for antidepressants for people with treatment resistant depression.

because it's non habit forming they won't be saying you can only have a few days worth and you could have an ongoing repeat prescription.

it's just a case of getting them prescribed in the first place as usually it's a psychiatrist who prescribes those kind of drugs rather than a gp. if your gp refuses/says they can't prescribe then ask for a referral to a psychiatrist who can as chronic, severe insomnia is bloody awful!

normally i'd be recommending all sorts of things prior to this but it really sounds like you've tried loads already and just need something that will make you sleep and reset the whole sleep/wake rhythm.

also benzos like sleeping tablets tend to just make you fall asleep but not keep you asleep whereas these drugs can be more effective at getting you to sleep and keeping you there. hope this helps but be prepared for a push with the doc. best thing is to agree that no you don't want to get hooked on tablets and totally understand their inability to keep prescribing habit forming medicines SO you need to come up with something that will help you sleep without that risk.

orangeandemons Mon 12-Aug-13 09:00:39

Which ads have you tried? The ones that should make you sleep, are mirtazapine, amitriptyline or trazadone. Perhaps you haven't tried high enough doses. I had chronic unremitting insomnia for years, including 2 visits to a sleep clinic. But ads work for me

swallowedAfly Mon 12-Aug-13 09:05:55

mirtazapine will make you put on weight at a rate of knots though sadly so it depends if you can face that, though yes it is a really, really good one for sleeping.

magso Mon 12-Aug-13 09:21:12

Hi Grockle, I am also a poor sleeper (all night exhausted but tossing and turning)- more so since my health deteriorated. I have had some limited success taking the measures suggested in a book called from fatigued to fantastic (by Teitelbaum and is aimed at people with ME/FMS rather than other autoimmune conditions but it might be worth a look). This suggests a multipronged approach - sort of using almost all the above. In other words good sleep hygiene + natural sleep remedies(several in low dose) + if needed prescription meds. I take (natural remedies) a magnesium tablet, 5HTP (must not use if on SSRI), sometimes melatonin in very low dose and for pain, low dose amitriptyline and if needed paracetamol and codeine. I might add a sleep herb mix if going through a bad patch. You can read up on the suggestions at his website which I cannot find at present but is something like www.vitality with some end bits - will post when I remember/find it!!

insomniarules Mon 12-Aug-13 09:29:35

I do two chloramphamine ( drowsy anti histamines) about an hour before bed. It helps.
I also do no tv in bed, clean bed sheets as often as possible so it's comfy, I listen to self hypnosis apps and sleep apps too.
If there is something bothering you try writing it down then letting it go until the morning.
I'm not a good sleeper- posted about it last week- but sometimes this helps get a few hours.

Grockle Mon 12-Aug-13 18:17:46

I take melatonin every night, pretty. Maybe I should ask about quetiapine (I have been on it before but overseas)

ADs I've tried: recently: Mirtazipine, Duloxetine, & in the past fluoxetine, sertraline, citalopram & various others

Magso, that's helpful, thank you. Will look for 5HTP.

I'm tempted to go to my GP tomorrow and lie on the floor & cry til they sedate me.

swallowedAfly Mon 12-Aug-13 18:42:24

5htp did nothing for me but some reckon it works.

the quetiapine works. what i've also noticed when taking it (tiny doses for sleep) is that i sleep 'well'. if i dream i very rarely remember which is a good sign with me as i dream most when i'm having shallow keep on waking up type sleeping patterns. i seem to sleep well and deeply and wake up early still (i'm just an early riser) and not groggy at all.

worth a go given everything else you've tried.

swallowedAfly Mon 12-Aug-13 18:44:20

incidentally i have weird sleep stuff too with changes of season and daft as it sounds around the times of equinoxes - it used to totally throw my sleeping patterns out and suddenly i'd feel like the day was the wrong length or something - very hard to explain and sounds loopy i know. with the quetiapine that seems to be avoided.

i really, really think sleep is important.

if my sleep is ok 99% of the time everything else is too. if my sleep screws up other things will follow.

orangeflutie Mon 12-Aug-13 19:37:12

Hi Grockle I remember you I think from an old insomnia thread. Sorry to hear you're suffering so much:-( I go through phases when I sleep really badly but it must be horrendous to constantly get very little sleep.

Have you tried a sleep clinic? I think you definitely need to stress to the doctors that this is a serious situation and you're finding it difficult to cope.

Really hope you can get some help x

cakeL Mon 12-Aug-13 19:43:50

Have you tried taking a couple of piriton?

DevonCiderPunk Mon 12-Aug-13 19:47:40

Insomnia sucks, I have bouts too.

In the spirit of "try anything," you might like to consider one of those sleep-recording apps on a smart phone? I have one; it records any sounds during the night and apart from some amusing farting & sleep-talking I have discovered a few helpful things; I snore a bit after alcohol & it wakes me up, also there's a train running near my house at about 3.30am, which explains why DS is usually at my bedside at 3.40am.

It doesn't necessarily stop the wakefulness, but at least it gives me some more information to work with!

Grockle Mon 12-Aug-13 19:48:00

Thank you.

My GP & consultant have both said that the risks of addiction to sleeping tablets are too high. I say the risk of me becoming unhinged through lack of sleep is a big one too. It is now stopping me doing things - I couldn't go out today because I couldn't safely drive.

Kasterborous Mon 12-Aug-13 20:43:37

Have you tried any antihistamines. I don't have insomnia but have had them at times when my eczema has been really bad, and they put me in a deep sleep. I don't think they are addictive but you can become more tolerant to them so they don't work as well. There are a few different ones.

Sorry you have insomnia, I can't begin to imagine how awful it is.

Grockle Mon 12-Aug-13 20:54:27

Yes, I have. I've tried things like piriton & also travel sickness pills but they don't help! I sometimes feel like my body is inert as it doesn't react to things like that!

swallowedAfly Mon 12-Aug-13 21:48:14

i say you agree with them profusely grockle and point out that the obvious thing is to use a medication known to be sleep inducing but not habit forming and suggest the quetiapine. responsible patient, showing responsible thinking and not 'drug-seeking'. keep asking for benzos and they will mark you down as a drug seeker and that could be a nightmare if other health conditions cause you to need serious pain relief or some such one day.

Aerobreaking Mon 12-Aug-13 21:50:41

Seen someone has beaten me to it, but I would suggest 25/50mg of Quetiapine. Has been a lifesaver for me.

GeraldineAubergine Mon 12-Aug-13 21:53:13

When I had insomnia due to a miscarriage and after my mum died, I took 7.5mg zopiclone for a week on and then a week off to get me back into good habits. It kick started my natural pattern again and if I get out of synch I can see my gp and have another week. This has helped me avoid a habit forming. Im also on 100mg of sertraline and have been for 7 months.

GeraldineAubergine Mon 12-Aug-13 21:55:10

I was being insane through sleep deprivation and this really helped me. I really feel for you xx

Grockle Mon 12-Aug-13 22:54:22

Thanks. I have lots of pain meds & have no problem getting them prescribed... I don't think they think I am drug seeking. I know my GP fairly well & he knows I am trying other things as well. I will ask about quetiapine, I think, especially as I've been on it before.

I'm so bloody desperate.

swallowedAfly Tue 13-Aug-13 07:56:53

try it grockle.

like geraldine it has been a life saver for me. you may also find that it gives whatever ads you're taking a boost and makes them work better and may even help with pain.

the thing is it works and it's not addictive so they can prescribe it ongoingly. that's what you're looking for and it does work better than the drugs they're reluctant to prescribe anyway in my experience as they just make you wake up again a few hours later when they've worn off and noticed or not they're depressants.

pepperquip Tue 13-Aug-13 12:46:15

Insomnia is so awful. I really feel for you.
I went for hypnosis and it worked really well alongside medication (amitriptyline). I paid for 6 sessions and was given a CD to do at home.

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