LUPUS UK
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Sleeping is a nightmare

Sleeping is a nightmare

I've always had a tendency to sleep paralysis - that thing where your body switches off before sleep but your consciousness hangs around in the bedroom, imagining all kinds of creepy things are happening around your paralysed body.

I have no difficulties relaxing but unfortunately, my sleep has increasingly become nothing but a string of sleep paralysis episodes, interspersed by wakefulness while I try to calm down from the nightmare and tell myself it's safe to go back to sleep again! During daylight hours I am frequently mistaken for an extra from The Waking Dead. So I would be very grateful for advice.

It was worst over the last Xmas period, and my rheumy (re-) started me on amitriptyline. I went up to 30mg, but came down to 20mg as 30 was making me so sleepy during the day I could not function. Overall, this had some good effect, but not enough (I have been getting maybe 2 hours of proper sleep a night). When I saw him again 6 weeks ago, he suggested adding gabapentine. I haven't tried it yet, as I have no significant pain and don't really want to throw another med into the mix. When I described my problem to my neurologist, he said I should drop the amitriptyline as it might be contributing to the problem and start a SSRI instead. I have similar reservations about that.

For the last week I reduced my amitriptyline to 10mg, but things have deteriorated. Last night I seemed to spend several hours immobilised in bed with some sort of vampire lying beside me (it was a pillow). For light relief, I was chased around the corridors of a mental hospital by nurses with syringes filled with yellow liquid.

Any thoughts about whether I should persist with the reduced amitriptyline or return to 20mg? Could further reducing my prednisolone (from 4mg) be helpful? Any other ideas?

Thank you! x

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Wow, Whisper, how awful for you. I have awful sleep patterns and real bad vivid dreams but I don't think it comes anywhere close to how you describe yours. It must be a nightmare for you. Sorry, just trying to cheer you up a little and make you smile.

I can't really be much help here except to say that I take an SSRI and have done for a few years on and off and have found them to be worth their weight in gold. They do help with the sleep I find and also the relaxing although you said you don't need help here. They just seem to have a calming effect on the body somehow. Great controlling my panic when another new and strange symptom arises too. If it were me I'd be inclined to give them a go as they cant do any harm and may benefit you in some way. They change the chemical balance in the brain which may be playing a part in your dreams and thoughts so in my opinion worth a try. The only thing here though is that they can't be taken with Amitriptyline so you'd have to decide which one to go with. As for the pred reduction, I can't see that such a small reduction would do anything much and make much difference to things but I may be wrong.

I'm sure whatever you decide will be right for you as you know your body and how it reacts better than anyone.

Good luck and keep us posted please X

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Thanks Georgie-girl, those are really useful thoughts. An SSRI may indeed be the way to go. And I do appreciate the joke :) x

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Hi Whisperit

So sorry to read of your dreadful sleep problems. Can't begin to know how you cope with it!. I can back up what your neurologist said that Amitriptyline is making you worse because I take 25 mg nightly and do have more vivid dreams than I used to!. I also have a friend whose mum had to give it up because of these nightmares!. She was taking it like us for pain. It might be worth you trying the SSRI, what have you to lose?. I also take Gabapentin without problems but understand why you don't want to without pain!. You've done so well keeping the steroids at 4 mg that it's cruel to be suffering in this way!. I even wonder about a referral to a sleep clinic?. I wish I could be more helpful. Has your mum had her big op?. Hope she's ok. X

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I used to have sleep paralysis and hynogogic hallucinations. Fortunately, not as often or intensely as you are, They mostly went away as I got older. I never told a doctor about they. A few years ago I was in a hospital for a seizure and the neurologist asked me if I had them. I had one not long before. I said yes. He said people with temporal lobe epilepsy sometimes had them. It doesn't seem I do have epilepsy. But the gabapentin might help you, since it is essentially an anti epileptic. I take a small dose at night for pain, hoping if I can tamp down the pain at night, I'll sleep better. If you have a choice I'd start with a small dose at night. You might be a little groggy the first few mornings, but after that it wears off. You are on a small dose of prednisone. It doesn't seem enough to cause your sleep problems. If gabapentin doesn't help or causes other side effects, then you might want to give the SSRI a try. I don't get along with amityptilline.

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Thanks for that AnnNY. I hadn't thought of any connection between these things and the possible anti-epileptic effects of gabapentine. I think I shall think through all these ideas and present them to my GP next week. He'll enjoy that! :P

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Thanks Misty, I did ask my GP about a sleep clinic referral, as one has recently opened in the local DGH. Unfortunately, he said, "They just deal with sleep apnoea" - so he wasn't the most constructive on that. But that is a helpful comment anyhow. Getting a bunch of trustworthy experiences like yours is so valuable when one is trying to find a way through these confusing things. Oh, and my Mum had her big op 2 weeks ago - surgeon said the tumour was much larger than he had anticipated, so the op was correspondingly more extensive. She's struggling in hospital with the after-effects and is very down. I have managed to visit a few times, but it's nearly an hour's drive away, so in my current state there are few days I can do it - a really bitter pill to swallow (worse than hydroxy). Thank you for asking x

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Hi Whisperit

So sorry things are really tough for you and your mum. I hope she can be home soon!. Your GP doesn't sound very supportive. Have you thought about changing or is it better the devil you know?. Fingers crossed for you both. X

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Thanks. Yes, I don't much like my GP but have persevered as he is familiar with my normal presentation. After seeing a different one a few weeks ago, I am going to switch. x

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That's great Whisperit, sometimes a fresh mind can be very helpful!. I hope it goes well for you and you improve. Look forward to your updates. x

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You have my greatest sympathy Whisperit as your description of your sleep paralysis sounds absolutely terrifying. I also used to have sleep paralysis when I was younger but never knew what it was or what was triggering it - it wasn't accompanied by nightmares though: I was just actually awake and would have my eyes open but absolutely unable to move any other part of my body. I've not had a recurrence of this for some years but my sleep is appalling and I rarely sleep for longer than 2-3 hours and have got accustomed to just lying in bed awake. I tried amitriptyline a couple of times but this didn't have any positive effect on my sleep even up to 30mg and so I stopped using it as the drying effects were too much to bear. I never knew that gabapentin can be used to improve sleep quality but a quick google reveals some interesting facts about this ("Gabapentin was originally designed for antiepileptic therapy; however, some studies reported that its use increases slow-wave sleep in healthy volunteers or patients.") so it's worth having a chat about it. As Misty suggests, is it worth asking to be referred to a sleep clinic? I certainly think that with your extreme symptoms, this would be worth considering. Please let us know how you get on discussing all this with your GP - I do hope you can improve things as I really don't think I could function with what you're currently experiencing xxx

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Thanks SjogiBear, Sleep paralysis is a weird thing in that although I have for many years been able to recognise it when it occurs and tell myself "OK, this is just a sleep paralysis hallucination", there is a certain uncontrollable fear that goes with it and a sense that even though you know it's not really a monster looming over you - maybe it is, this time! As you say, mine has now reached a point now where daily life is reduced to the barest of essentials. But I suspect that is true for a lot of us here - many of us (including you perhaps?) are coping daily with things that seem unbearable to people "on the outside" x

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Thanks for posting my least favourite picture!

You poor thing, though, I've had a few experiences of this, and my son has had them from being a toddler. I can't imagine having them constantly; they are so real and hang over you the next day. The SSRI sounds like an option, or will anyone let you have a zzzz pill to see if that helps? I know they are reluctant to prescribe zolpidem or zopiclone, and have no idea whether they would fit with your other meds, but, if they do, given the stress of your own health and worries about your mum, they could help. Just an occasional good night's sleep makes such a difference.Sleep deprivation isn't used as torture for no reason. x

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Too true! Thanks for those thoughts. I'm thinking of taking all this to a different GP at my surgery - my current one is just too passive for my liking. x

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I have nothing to add but, oh blimey, that sounds awful. I know a musician who has severe sleep paralysis and I've seen what she goes thru but can't imagine what it must be like. I hope you get some answers and I wish you peace and ease.

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thank you Silvergilt,

I've never considered treatment before, but it has got out of hand now. I've been given a couple of reminders plus new tip to try and avoid sleeping on my back. So now's the time to try it out! Sleep well! x

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Oh you poor thing, Amitrytiline actually gave me nightmares 10 years ago when GP prescribed it for depression and to help me sleep following a family trauma , best day of my life when I managed to come off it!! Still don't sleep but don't have nightmares! Please please try to come off this dreadful drug and look after yourself 👌

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Thanks netherthong. Have you found anything that improves your sleep? x

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Sorry for delay in replying , husband had just suffered a Pulmonary embolism so been a bit distracted from my Lupus, been up since 2am this morning so no I haven't found anything to improve my sleep, even though I am exhausted with worry ! Stop the world I want to get off!!!

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Oh no! Thank you for finding time to answer in amongst all that. Sending you lots of good wishes. I do hope everything works out alright. x

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I also have sleep paralysis where my ex is sitting on my chest. I am recently divorced after years of abuse. I too try not to fall asleep on my back because it is more likely to happen. I have had it happen night after night it is truly frightening. Even though I know what's happening, I still instinctively try to move but cannot. I usually am able to get 2-3hrs of sleep per night . I can tell you that both of my kids had seizures as children nobody ever told me this may be related. All I can say is it's gotta have an end cause I'm about at my end.

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You have all my sympathy, Sadiemay. As if ex-es aren't bad enough in real life! If I get any brilliant solutions, I will be sure to share x

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Thank you

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Sorry for late response - saw this and thought I must reply but the lupus has been unpleasant to me lately.

That must be awful for you - I wanted to say that your GP is not correct about sleep clinics only dealing with sleep apnea. I was referred to one many years ago and the consultant told me they deal with all sorts of problems including the sleepwalkers, the insomniacs, the narcoleptics etc. They wire you up and monitor you all night. They offered me some strong meds (anti epileptics I think but I hadn't had all my children then and they were dangerous for pregnancy so I didn't take them)

I have the opposite sleep issue to you where my body (sometimes, especially when I'm stressed or the lupus is in my nervous system) acts out my dreams so normally I just potter around and move things (hiding my husband's work shoes was an amusing one!) but sometimes, like you, I see the monsters etc or the house is collapsing/on fire and I have to save everyone. My poor kids/pets have been dragged out of bed so many times they just know to say 'mum you're asleep' and I'll realise - hope there is never a real fire because no-one will believe me! Must be more frightening for you if you can't move.

Do you have CNS lupus? I have recently been diagnosed with this in my latest flare but my rheumys think I have had it some time and every time I get the neurological symptoms (cognitive difficulties, pins and needles etc) my dreams/sleepwalking are also worse.

The only advice that seems to sometimes work for me (but I don't always do because I'm naturally very messy) is to keep your bedroom as clear of clutter/clothes etc as possible then when you're in that semi asleep state everyday things (like your pillow becoming a vampire and my husband's jacket becoming a man trying to kill my children) don't morph into frightening things.

I'm not sure about the meds. I'm on 30mg steroids and can't sleep very well but 4mg is close to what our bodies produce anyway so not sure that would cause problems and you probably need it anyway?

Have you had better nights recently? Do really feel for you and hope it's getting better.

x

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thank you, Melba1. That's a very thoughtful and helpful reply. I don't believe my GP about the sleep clinic, so am going to see another GP to discuss it further. I was assessed by a neurologist just recently and don't seem to have any CNS involvement, but it is difficult to disentangle all the elements of these lupus-type disorders, isn't it, especially when we are also on meds with significant side-effects too?

I expect you've had lots of "hilarious" suggestions that you use your sleep-walking to do the washing up etc, so I won't make any jokes about that....

Hope you are feeling better soon too x

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Yes definitely worth trying another GP! I have just had a (polite but actually quite upset with him from my end, really cross from his!) argument with a GP because he wouldn't prescribe me the coated steroids and I get awful heartburn with the others. So I just added in biro 'enteric-coated' to his prescription - illegal I think but did make me feel very satisfied when I got them!! I'm sending him the packet...

I'm not sure many neurologists know much about lupus. I was told my symptoms were all migraines by a neurologist one week (who said I didn't have lupus because I was anti ds-DNA -ve!) by the next week 2 lupus specialists said it was definitely neuro - psychiatric (don't like that terminology!) SLE. I think you're right that all the elements are all entangled and probably many of us have some 'brain'/ nervous system involvement.

Ha ha no sadly I never seem to do anything useful like washing up in my sleep, although I did once write a paragraph in my sleep that is now published word for word in a medical journal. It was a theory I was struggling to put together at work but seemed to materialise whilst asleep - weird I know!

Thanks, still can't shake this flare - longest one yet at 5 months now. Time to start accepting the 'new me' I think.

Hope you get your referral - you can have a fun night out at the sleep clinic...

x

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Yes, all these systems are interlinked - the inflammatory response alone is implicated in so many different regulatory processes. Don't we all get creative with our scripts sometimes?! But it is a sorry state of affairs when GPs argue about things like enteric coating. Was it a brilliant insight? You'll have to post the ref for us to benefit! x

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Yes I've given the GP the facts why he should prescribe it (and the costs thanks to a previous post from PMRPro on here!) and how it is not helpful when I already feel so rubbish. Finished by saying I'm sure it would be less expensive for the NHS to give me the correct ones than if I go into adrenal crisis for abrupt withdrawal because I'm not going to take the non coated ones!

Ah it wasn't a terribly brilliant insight but certainly more brilliant than my 'lupus fog' daytime brain was capable of at the time! It was something about patients with addictions needing to feel active participants in their recovery rather than passive recipients - very ironic now I'm fighting for a say in my own treatment plan!

Hope you get a good night's sleep tonight x

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Hello Whisperit,

Your story is just awful. I started having sleep problems in my early 20s and sleep paralysis was part of it. I'm now 48. I've only had hypnagogic hallucinations once, as a side effect of a new psych med, which was discontinued by my doc immediately. It was a most frightening experience. Once I was able to wake myself up, I got into my car and fled to a friend's house.

Back to sleep. Sleep is crucial or critical to all people and especially to people like us who suffer from many debilitating symptoms. I was only recently diagnosed with 2 rheumatology connective tissue autoimmune disorders. So prior to that I was just being treated for symptoms or health conditions as they popped up.

In my late 20s I was diagnosed with Hashimoto's hypothyroidism and then shortly after developed depression. I started talk therapy, then later went on an SSRI usually a smaller dose depending on which med and the dosage ranges. They do help, they really do.

I first started talking to my GP about my sleep problems. He tried me on every sleep med out there and none made me remotely sleepy. So then I talked to my psychiatrist. She put me on a low dose of Seroquel, which is a mood stabilizer and also an anti-psychotic. I don't have mood stabilization problems or psychosis.

In small doses Seroquel is wonderful for sleep and I have been taking it for sleep since 2004. I take 25mgs night. It puts me to sleep very quickly and it gives me good sleep and long sleep. I don't know what I would do without it. The generic name for this medication is Quetiapine. In large doses this medication can cause side effects. I have not experienced any side effects in all these years of taking it.

I was recently put on Plaquenil and have noticed that it makes me sleepy at night before I take the Seroquel. This could be because I just started taking Plaquenil and this sedating effect may not last.

I hope this helps and thanks for your post because I learned a lot reading all of the responses. There are lots of sleep disorders in my mom's family, like sleep-talking, sleepwalking and the sleep paralysis, and I didn't know about the frontal lobe involvement.

Best Wishes,

Amy

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Thank you so much Amy. Sleep seems to be another of those things that one takes for granted until it goes wrong, and only does it become clear just how complicated it is. Your story is very interesting and it is reassuring to hear that you've found quetiapine so helpful. I've now got a good fund of options to discuss with my doctors. I do hope plaquenil helps you too x

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Wow. That’s all I can say

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