Trouble sleeping ???

[StaceM8]

Second question - who has problems with sleep patterns ???

[StrawberryCream]

Hi Stace

If you scroll down the posts to 20 days ago you will find a post of mine titled 'sleeping difficulties'. I quoted an article about sleep problems post BI which you may find interesting. I have problems with both my sleep pattern and the dire lack of length of sleep I can achieve. Napping in the day doesn't help me as then it ensure I don't sleep at all that night.

[Hidden in reply to StrawberryCream]

Straw-C: when overtired (almost always from talking, socialising, paperwork) I have to sleep in the afternoon, no choice. If not done too much or talked too much can get away with just rest but often my brain won't stop so NOT a rest, am fretting and brain on overdrive, awful.

I sleep best at night if:

a) no stress, done very little in the day, not talked much.

b) had a sleep (one and a half hours) in afternoon = but if too tired/frazzled/hungry often can't and to do so must take a tab, hate taking them.

But at mo coz SO stressed = wake every hour if no tab at night. And brain on overdrive all night sometimes even WITH tab and some tabs don't work and/or I'm too stressed. AWFUL dreams (often VERY bizarre/odd) and nightmares, terrible. 2 strange dreams yesterday, one I think caused by my earrings (had forgotten to take off) scratching on pillow = dreaming of scratched record going round and stuck in groove repeating = my life now.

Other one SO VERY odd must try do a cartoon of it. Related to my story and docs' behaviour. You can't make odd dreams like that up, consciously = but same brain does it all by itself (!) when in different mode = sleeping, 'unconscious'. All very interesting but blimey they disturb my sleep big-time. Never before had nightmares as at mo, DREADFUL, neither remembered so many dreams and SO odd.

I remember being aware of my first dream post-ABI and it was SO different from any I'd had pre-ABI, have others noticed dreams/nightmares different from before ABI like me?

[StrawberryCream in reply to Hidden]

It is so often nigh on impossible isn't it Muddled to switch off our brains post BI from all the stuff that gets stuck in our minds, whirring round and round. Since my BI I haven't had any dreams like I did before and I think that is because I don't go into a deep REM sleep anymore as my sleep is very light and I wake frequently (hourly) and even adding all those brief patches of sleep together only manage at best about 2 1/2 to 4 hours of very broken sleep.

[Hidden in reply to StrawberryCream]

Dreams, it was about 8 or 9 months I think before the first one I had post-ABI. I didn't dream very often (remember) before but would maybe have remembered 4 or 5 (?) in that time pre-ABI. But I used lots of sleep tabs early on after ABI coz without was lucky to sleep 4 hours in 24 hours, a few times just one and a half hours = AWFUL and felt SO weird, hard to describe.

Yes, you're right: the constant waking clobbers it BUT sometimes I get constant waking it's coz the night,mares wake me = they are SO vivid and terrible. Worse with 'noctamide' I was pretty sure - or the weird electric 'signals' I feel in the awful place I live (and elsewhere, odd...)? Or who can say exactly the cause/s?!

Oddly the GP (if that is what she was/is) said SHE wanted me to take that tab and stick on it, no choice. Why???

[StaceM8 in reply to StrawberryCream]

Hiya Strawberry, sorry can't remember your name. Thanx for replying.

I've asked 2 questions: do people have problems sleeping & is there anyone that doesn't & I'm really disappointed with the response.

One of those applies to everyone on here & I'm trying to show my brother, who's causing a lot of problems that even 20 years later, it's incredibly common for people who have had a head injury to have irregular sleep patterns.

Unfortunately he's one of the 99.9% of people that just doesn't understand. As I here so often on here, because we look fine people think everything is as it used to be, which as we all know it truly isn't ;o(

Anyway Strawberry, as it goes I no longer have trouble with my sleep patterns because I just sleep differently to most people. Difficult for a lot of people I know but if that is the case it's worth trying to find a way so you can sleep according to the way it now suits U.

We are different to most people & I thought everyone had problems sleeping but it's hard t know for sure due to the lack of response. Hopefully you had a better response. I'll go n have a look ;o)

I was saying though Strawb. U say about napping stopping U from sleeping at night & by the sounds of it U don't have a proper deep sleep at night anyway ???

Therefore as I've found, to feel totally rested & full of zest I have a 20 minute nap every day. And like U I don't sleep like the ' norm ' at night but I do find that irrelevant now ;o)

Or like today, because I volunteer on a Wednesday at a community cafe in Hurst Green (Anyone local be sure t pop in for a coffee (£1 with a refill or a pot of tea (2 mugs also a quid ;o)

Anyway, this isn't as promotional tool but as I said every Wednesday at Aggies on the green (between 10 & 2 ;o)

Nah I was saying, I had my 20 minutes, didn't feel refreshed so just slept til I woke up naturally an our or 2 later.

We have to find alternative sleep patterns more often than not because the majority, so I gather, do have a problem.

Personally as I was saying I have a nap in the afternoon, maybe lie with my eyes closed for 6 minutes a couple of times a day as well & usually sleep from about half 12 / 1am til about 4, but instead of struggling to o back to sleep, with all & sundry going through my head whilst I try, I stick the computer or tele on & get up. I might need t close my eyes for 6 minutes about 8 / 9am, but that usually refreshes me til my 20 minutes that I have between 2 & 4

Anyway enough waffling from me & sorry if I bored anyone but I really would appreciate it for anyone that has read this far ;o) if U could let me know about your sleep patterns - thank you ;o)

Until then I'll go n have a look at Strawb's post !!

Xxx

[Hidden in reply to StaceM8]

Stace: even if brain too busy to sleep in the afternoon I often lie down,close eyes and TRY to rest but if overdone it my thoughts/brain drive me bonkers = won't stop.PLUS: my neck hurts BAD lying down (and all the time) and when so tired my whole body hurts, lumbar and abdomen pulls, right thigh (with hole in) aches, right shoulder (recently injured = early autumn?) hurts bad = I can't stop brain OR get comfy then the really bad brain tickles/burning are AWFUL and nothing at all stops them except sleep. So often I get up after an hour, eyes bit better coz been closed (they hurt bad most of the time) but then SO exhausted/frazzled then must EAT = guts hurt when hungry and get v cold when too tired/hungry. All in all = HELL.

Tried melatonin in UK, took it 3 times. SO odd: first tab had weird effect, so hard to describe but took one on each of next 2 nights and ZILCH, weird heart stuff BAD though (worst in ages) = caused by tabs or other? Can't say but felt like the tabs or just blaming them?

In UK can't buy melatonin, think some other countries you can but dunno strength or what's advised - or any trials/results? Just bought some here in France, says 1mg but that 'that is average' = in other words some might have none and others LOADS. Average over how many tabs?! So is it a lottery, you pick a tab at random and see if it does anything - or you think it does = placebo/external and environmental and personal factors?

Odd: melatonin is a hormone (I'm told) and we can buy it but so is thyroxine (for under=active or removed or zapped thyroid gland) but MUST have (The Rules) a prescription from a doc,not allowed to go get it even if had blood test within the 6 months they say = varies by country I think? So who made the rules for WHAT can buy and what can't: you must convince a DOC you need it (not want, that doesn't count even if you PAY for the prescriptions/drugs) and they must type, print, sign and stamp a bit of paper = and that gets it for you. How mad is THAT?

Was given a 'valium' in hospital that did NOTHING AT ALL = fake, I think.

We need tabs we can rely on, use to our best effect, pick and choose what suits US = not the docs. Treat us like competent adults, PLEASE.

What does anyone else think?

[chrisbaldy in reply to Hidden]

Hi, people with ABI who have problems sleeping (and that’s most people with a BI) their biggest hurdle to getting any help is convincing the doctors etc. that it is not primary insomnia but in fact secondary insomnia cause by your ABI. Unfortunately many health professionals are not trained in these areas or recognise (or want to) the difference. Prescription “Drugs” are all well and good but often have unwanted side effects and also a very short effective lifespan, not to mention the multibillion pound industry it supports.

Sleep is a time when everyone’s brain “sorts things out” and “plans”. This where the saying “everything looks better in the morning” comes from because we have sorted out the days problems and challenges in our head through sleep. However, with a person with a BI lack the ability to do this effectively, (awake or at sleep) which in turn leads to a lack of sleep, tiredness, depression, anxiety and a general feeling of un-wellness. A vicious circle that is hard to break and only gets worse if it is not broken.

Every night a BI survivor misses a night’s sleep is a night too much. One thing or drug will not cure a BI survivor from secondary insomnia it has to be a number of strategies that will help. Melatonin in the UK (tradename Circadin) is not a sleep inducer but does help your body’s sleep clock to think it is time to go to sleep and ultimately helps regulate the sleep cycle/pattern. Depending where you live in the UK you can get this by prescription from the GP. Some health authorities do not prescribe due to cost but will do if your write to the local medicine management board and put a case forward for why you want it you should get a prescription. If you do get it be careful with melatonin because some doctors will tell you that you can take up to 10mg but in this case more is not better and it can have the opposite effect. They come in 2mg tablets and you may find it helps by cutting one in half and just taking that an hour before you wish to sleep.

Many ABI survivors and particularly ones who have had Encephalitis can suffer from nerve pain in various parts of the body. This is mainly due to the BI and not something wring with your skin or muscles so creams won’t help. Also, besides being painful it can disturbed sleep. Although I really don’t like prescription drugs, just 10mg of Amitriptyline helps with the nerve pain and its side effect will get you off to sleep, coupled with melatonin that helps keep you asleep. Again, with this drug, the more is not better and don’t be tempted to take more.

St Johns Wart 300mg x 3 is also effective as a mood stabiliser by helping the body produce serotonin (happy hormone) which in turn will relax you and help sleep but not dope you up during the day. This vitamin/herb is the most researched in the World and in fact country’s such as Germany prescribe it as an alternative to more traditional drugs. As it is natural the effects will not wear off after a few weeks and can be taken long term. It does come with a warning though and that is not to take any more than 900mg in any one day or you run the risk of a “serotonin shock”, not fatal but not pleasant. A good vitamin B complex also helps (one that contains B1,B2, B3, B5, B6, B12 as a minimum) and is also good for energy levels during the day (I found Amazon the cheapest).

Good sleep hygiene is important such as no stimulants before bed and make sure your room if fairly dark an hour before sleep.

This is a long path I /we have travelled down any these things work for us. However, as it has been rightly said on this forum, no one BI is the same, although there are commonalities, it is important do your own research before taking any supplements and check there are no interactions between prescribe medication and over the counter supplements. As with any supplements and medication you must persevere as they take a couple of weeks to start to work effectively.

Waiting for health professionals to help is in our experience a non-starter and you will need to take things in to your own hands. Breaking that cycle of insomnia is so important and will help with many of the other symptoms

[StrawberryCream in reply to StaceM8]

The sleep issue has come up in quite a few posts over the past month or so and been discussed quite a lot so maybe that's why you didn't get so many responses. I thought you joined in with some of those discussions as I am sure you recommended your 20 min daytime nap before? But maybe I'm muddling you up with someone else saying that's what they do. It does seem to be either sleeping too much for a few or for lots waking frequently and not able to either get sufficient sleep or the deep restoring sleep. Doesn't seem to be anyone who gets the good 8 hrs sleep post BI.

[StaceM8 in reply to StrawberryCream]

20 minute nap - yeah sounds like me ;o)

It just makes such a difference t me I just wish everyone would try it. Even those who say it won't work for whatever reason, just giving it a go. I kno everyone's an adult but it's like finding od, U just want everyone to convert into a 20 minute napper ;o)

Nah, I do remember saying it recently so it probably was me - talkin of which, have U heard from Emma ???

[sporan]

Sleep patterns are a nightmare!

Strangely enough the worst nights are the nights after good days when I make the most of it and probably too much and then expecting the tiredeness to give a good nights rest but the reverse seems to apply :-).

On those nights I keep getting dreams that I find hard to distinguish from reality, often repeating the days events, maybe it's just the foggy brain trying to find a way to 'fix' the memories of the day properly.

I avidly avoid daytime naps and follow a pretty good 'sleep hygene' regime. No tea or coffee after seven, not phone ot telly or computer tablet in bedroom, making sure room is dark and cool etc. etc. and still have issues so not sure I'm much help.

I think I can remember reading Strawberry's post a while ago and is worth a read.

[Hidden in reply to sporan]

Sporan:

I agree wholeheartedly: Sleep patterns are a complete nightmare!

You wrote: Strangely enough the worst nights are the nights after good days when I make the most of it and probably too much and then expecting the tiredeness to give a good nights rest but the reverse seems to apply :-).

= same for me.If overdone it sleep impossible,brain won't shut up AT ALL. Told GP that and that I slept far better at night if slept in day but he wouldn't have it, he thought he knew better than me but he didn't (as always with him/other GPs post-ABI) = mUST educate them so they can help ABIers.

If I've typed loads (like most of the day) then in bed that night (or rest in day) as I think about things my eyes flit about under closed lids 'looking' for the keys to tap as though I was typing, SO annoying and have to try SO hard to stop it, not under my control easily/at all for maybe 10 minutes. Anyone else get this?

I avidly avoid daytime naps and follow a pretty good 'sleep hygene' regime.

I have no tea or coffee after 11am, not phone ot telly or computer tablet in bedroom, make sure (if at all possible = wasn't in hospital = DREADFUL) room is dark but here where I rent room was FREEZING in winter and WAY TOO HOT (33C) in summer. All the NOISES affect me BAD, I wear earplugs but can still here noises and HATE wearing earplugs.

Got in mostly good routine (slept through maybe 3 or 4 times a week) some years ago = at that time in own home and enough savings to top up benefits = not mega stress on TOP of the ABI, losing my job etc. And thought was adapting/progressing well. GP noted in records I was 'happy/smiling' (true for once, odd he wrote that but not all the rest. Was it summer? Think so = better summer/sun/outside) or something, was then, coz could see how well I was coping with how I was and thought then I'd get back to how I was, silly me.

And I was one of those pre-ABI who never ever thought about sleep or problems with it coz easily slept EVERY night and always for about 8 hours, longer at weekends sometimes. Took it for granted, you don't know what you've got til it's taken away from you. And then if THINGS = often don't coz of my memory probs, sounds funny but it isn't.

[Hidden]

Me! If take no tabs I wake EVERY HOUR and so next day am good for nothing AT ALL = day in the bin.

[Johnny-One]

I am on 400mg of Gabapentin Friday, Saturday and Tuesday nights and 300mg the other nights ... I sleep all night now and never during the day. But that was after eight years of very bad sleep patterns that were making my migraines worse, a lot of discussions with my GP and many trips to sleep clinics/specialists. It also included two years of no sleep whatsoever. I have been through the mill. My headaches have improved too. (Actually to be fair I can never remember sleeping well through my life)

Oh I had to come off caffeine first which was a nightmare initially. I have been off that since September 2014.

The next phase is to re-evaluate my Topiramate for my migraines in a couple of months time. I am not necessarily looking forward to that.

Good luck.

[Michael_e]

5 years on and I still have sleep problems but they are nowhere near as bad as they were.

[Hidden]

I had another BAD night last night: woke up frazzled and exhausted, brain been busy all night again: this is HELL. Made myself go out do few things this morning but SO hard and before got home (not out long) got to point could hardly talk so had to get home quick, I HATE people seeing me like that coz it's then I often cry too.

BAD neck, lumbar, abdo and left big toe joint pain at mo. Toe joint got very bad after walking too much then got bit better so WHY worse today, felt like I was even limping bit today which I don't usually, hurts SO bad. Bit no docs or anybody give a toss about my injuries and still pretend they don't exist, refuse to answer my questions, what's the POINT? NO point trying any more, SICK of it, can't MAKE them and WAY too long.

The burning tickles in my brain are awful in the afternoons at mo. Try to rest but brain won't stop, can't get neck comfy then EVERYTHING hurts. Makes me cry with utter despair sometimes: the burning/tickles drive me bonkers and the pain gets so I can't deal with it when brain-burn/tickles and over-tired/stressed with STUPID letters and ridiculous 'errors' = SO fake and repetitive, what's the POINT? Makes me feel sick - oh great, wanted? SICK.

Two years MEGA stress, BAD sleep and crying: HATE seeing me/my face in mirror coz it's gone all crumpled and falling downwards. Wonder what's it's done to my heart, immune system and the rest? Nobody causing it gives a toss and those who COULD help but choose not to don't either. I can't sort ANY of this, if could have WOULD have but makes me feel real DUMBO-STUPID-USELESS.