Sleeping problems

Hi all. I am after some advice. Since my life threatening illness in 2013 which is almost 2 years now. I was put into a induced coma I just cannot get a normal nights sleep.

Sometimes I can go 3 days without sleep then because I am totally exhausted I will sleep for about 72 hours. I cannot plan anything ahead because I don't know what sleeping mode I am in.

I have missed numerous GP and hospital appointments because of it. My GP has really tried to help but now I think he's baffled about this.

I have tried everything relaxation tapes, breathing exercises etc etc.. it seems to me that my brain won't shut down and quite often I have been scrubbing the kitchen floor at 3 in the morning( that's just a example) I have even been wandering the streets to try and tire myself out,but to no avail

Has anybody got any advice or recommendations to help me as this is beginning to drive me mad

19 Replies

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  • Hiya, personally I find a power nap helps, in your case a few throughout the day - & by power nap, keep your eyes closed for 20 minutes, try n relax the best U can & then get up 20minutes later - set your alarm for 20 minutes so you kno exactly when t get up cos much longer doesn't have the same effect.

    I was told longer is better but I have also read that after about 25 minutes you go into a different stage of relaxation / sleep & for me personally and many others, 20 minute naps work wonders.

    Like most people who have had a head injury, we find sleeping a problem & for someone who finds it difficult t sleep full stop, it's definitely worth giving a go !!!

    I generally have one 20 minute nap a day when I generally do fall asleep & set my alarm t wake me up, but I also have a couple of 6 minute naps which have a similar effect, but last far less time (supposedly increase your memory & concentration by about 60%

    Hope it works for u too ;o)

  • Hi Jim

    I totally empathise! I have the same problem, my brain seems to get over stimulated and then I can't turn it off to go to sleep. It is so frustrating, Like you I am exhausted and have tried everything - except prescription sleeping tablets (I have sleep apnoea, so GP feels too risky)

    Maybe you could try prescription meds if you haven't already? I have tried Stace's good idea re power naps, but most times I can't get to sleep for the power nap!

    I really hope it settles for you, I know how debilitating it is. Good luck

  • I took 2 sleep tabs at 11.30pm last night and got to sleep fast (with ski socks on and top on coz SO cold plus hot water bottle) but then 4.30am woke and left little finger numb so had to turn over (neck position does this I think and get bit dizzy as turn over) then put right arm over head to take top off and cried out: hurts so bad since I fell but docs ignoring it) then WIDE awake and fretting plus brain on creative overdrive: ideas flying off in every direction couldn't shut it up.

    The tabs seem variable, easier to say (and more probable?) that it's ME and the circumstances of day which change but very oddly I believe THE TABLETS VARY: not all same in same packet. Sounds mad huh? And nobody will believe me, can't be true can it? Me deluded/liar/stupid?

    The mega stress I'm under ALL the time now intrudes any time I let a chink open = not blocking out, not able to.

    Feeling really weird stuff: think somebody came into my place and sprayed stinky stuff around coz floors and all surfaces/shelves and things left out including plastic bags = ALL STANK. Had to clean/wipe as much as could to get it bearable. It woke me in night = SO string and had to open windows though freezing. Already there when went to bed or from ceiling/holes where lights wires come from ceiling? Am I crazy? I KNOW the smell was there = MEGA. But others say they can't smell it. But since my ABI my sense of smell been's WEIRD and very sensitive.

    At start I saw roses on TV and could SMELL them! Sensaround! But that's called 'psychosis' isn't it? And must be drugged til it goes away so can be 'normal' and acceptable, average, what you're allowed (TOLD) to be, see, feel, smell and so on.

    The birdsong sounds fake, like on a loop. And I think some birds are trained to spy on me. feels like I'm being watched everywhere and controlled: on net, on phones, 'friends' tell me I'm 'in denial' coz I don't believe what they do. Old neighbour firing questions at me (about son and my doctor visit = just getting out of car when she pounced on me with her aggressive interrogation) and she got so cross when I started doing same to her about HER private stuff. Then later she refused to talk to me because I had been 'rude'.

    It feels like loads of people I know/family have changed into robots or someone/something has taken them over. People didn't look the same after my ABI and had to keep staring at them: yes, looked bit like as did before but bit different, even my son had to keep staring at, not quite same. And he turned weird and started asking god to make it sunny, not how he ever was before.

    And all the junk mail telling me to BUY BUY BUY, told what to do, think, how to behave and get told I'm 'over-dramatising' by 'psychologist'. Charity brought electrician here, well he said he was and they said he was. But NO ladder, NO testing equipment and he said it's all safe = might be but he couldn't know (not tested) and he agreed light flicks when thing in socket turns off = connected and he said 'not normal' but charity did nothing. 'Electrician' said he'd buy and fit heaters, I'd have to pay (no income) to install and run but scared, think electrics maybe NOT up to drawing that much elect? And he said CAN run heaters from my little extension lead, was always told NEVER to. Loads wrong but nobody believes me coz I'm not an expert and coz he is (they say) he can say anything and all believe HIM. But he wouldn't write a statement 'all tested and safe'.

    And all the docs don't test my neuro system as should and even when see things wrong they lie and say 'normal' = like silly doctor (?) at big London hospital A&E who fobbed me off about severe throat infection/damage and brain. But she wroteletter to my GP telling HIM to refer me when I'd told her docs in Brighton had refused to believe me or refer and when did (to clinical Psychologist) = it got diverted to counsellors, well actually Head of HR at Trust and a trainee, oh and her computer tests. Then dumped.

    And now here in France docs doing same, ALL of them. Can't be true can it? Or are they people acting, pretending to be doctors? Can't tell. But it's obvious stuff about me is being passed around and people believe it. Are they told to, threatened or WANT to believe it? Scared to disobey? Like doc doing ECG, she refused (brave woman!) to treat me bad. But most think it's FUN to do it. What's difference between acting a part and lying? I did (hygienist UK) and she too = she damaged my teeth.

    And if I 'behave' people talk to me and manipulate me. If I try stand up to them I'm threatened with 'Police will take you away.' And when I got injured they made me either leave or sign a false statement, some 'choice' huh.

    And all give me 2 or 3 'choices' none of which are what I want and need. They think it's funny. Police did that and said could see psychiatrist (for dangerous home and lying landlord who broke rules on housing = I think, dunno WHAT to believe, can't know coz everyone says different. Funny? Nope.

    But if I lie to Police I get done. Different rules for others?

    And tried get doc appointment today but 'busy'. Sick of going to hospital A&E try get proper examinations, info and help. My disability doesn't exist unless a DOCTOR says it does. I don't exist unless I have the right papers and the right rubber stamp on them. Man in police once was asking police to verify he was alive not dead! How can you DO that? Identity, think someone's stolen mine, bits of my brain wrecked (one person wrote stolen) and what I KNEW denied: all the docs, GPs and hospital wouldn't ALL lie, would they? Probability... But even the extremely rare does happen.

    Like my socks: far more likely I didn't see them, misplaced them than person came in and moved them. So you doubt yourself as all the lies to and about me made me do at start and Jan 2006 went out to kill myself coz they drove me crazy, out of my mind. So felt they WANTED me to go mad/die.

    And here there's all black stuff round plughole, disgusting. The water tastes FOUL and might be that makes my lips and skin go dry, feels like the water is poisoned. Dunno if it caused my sudden (first time in life) exzcema (if that's what it is?). And that STINK. Feels like people attacking me in every way, watching me, talking about me behind my back. And all the people 'working' but just making BIG noise, FAKE work. And facades of buildings = FAKE. And people putting on fake smiles, fake jollity. But we ALL do huh? But not all the time. Same as with ABI says 'oh we ALL forget X or do Y' when we try to explain how we are, they belittle it and say we're exaggerating and 'over-dramatising'. SICK OF IT ALL.

    And MY reality 'isn't real' = got prescribed antipsychotics to take for my 'psychosis' = coz I hear, smell and think things that are 'wrong' and 'aren't there'. They lie about the dangers of taking it - the real people killed/injured by it/other drugs aren't counted oh but those who die from heroine overdose ARE, why the different treatment?

    SICK of the SICKNESS everywhere but they all say I'm the one who's SICK, MAD and a LIAR. Made me VERY ILL, still does.

    Ranting, sorry. Must try do things now coz been up so long I'll be crying and in pieces exhausted before too long. And then I get told to take antidepressants and told I'm antisocial, MUST go out and do things, talk to people = but I'm KNACKERED, not a CHOICE. Oh but they say LAZY person, just looking for attention. HATE how they make me feel. And Docs CHOOSING to do that to me.

    Coincidences that ALL docs here refusing to see/feel my injuries? Hmmm. Impossible they're collaborating? Unlikely? Oh can't be true can it? Deluded old me.

  • MAYBE AN OVER NIGHT STAY IN ONE OF THOSE SLEEP CLINICS WHERE THEY MONITOR YOUR SLEEP PATTERN OVERNIGHT MAY BE AN IDEA?

    THE ONLY PLACE I CAN EVER SLEEP IS ON THE SOFA. DON'T KNOW WHY.

  • THIS POST IS FOR THE SLEEP PEOPLE, I'MSORRY IT POPPED UP UNDER MUDDLED'S POST.

    PLEASE MUDDLED DON'T TAKE OFFENCE I AM NOT TRIVIALISING YOUR SITUATION IN ANYWAY.

    I AM SO SORRY YOU ARE GOING THROUGH THIS AWFUL TIME I'M THIKING OF YOU.

  • SO SORRY: way overtired and I go off on one, lose track, forget that there's a heading/subject. I try to learn but fail. And everything's related, SO hard for me to keep exactly on ONE topic. Again, SO SO sorry.

  • MUDLLED, YOU NEVER EVER NEED TO SAY SORRY. WE ARE HERE TO SUPPORT YOU NOT JUDGE YOU. PLEASE JUST WRITE EXACTLY WHAT YOU FEEL WHEN YOU FEEL IT.

    I'M SURE A LOT OF US HAVE EXPERIENCED A LOT OF WHAT YOU DESCRIBED FOLLOWING OUR BIs. I KNOW I HAVE.

    PLEASE LOOK AFTER YOURSELF

  • HI ZEBLET,

    LIKE YOU I FIND THE SOFA AN EXTREMELY EFFECTIVE AND COMFY SLEEPING PLACE AND HAVEN'T A CLUE WHY.

    WATCHING SOME RUBBISH TELLY HELPS TO SEND ME OFF AS WELL BUT DOSEN'T HELP WITH THE ELECTRC BILL :-)

  • Hi Jimboriley,

    This sounds very extreme,as Zeblet said,have you not been offered a sleep study at a clinic ?

    When you are in the non sleep phase do you experience any adrenaline rushes or feel hyperactive/anxious ?I am aware that hypothalamus/pituitary dysfunction can be the result of BI.Have you had all the relevant tests for hormone levels and cortisol ? x

  • I've had no tests regarding this matter whatsoever. My GP has tried the sleeping aids(IE tablets) but he is restricted due to all the other medication am on. I have been diagnosed with hypoxia but nothing seems to be working. I am also having problems with my diabetes as my glucose readings are still very high and I don't seem to managing it very well. There is no history of diabetes in my family the doctors think my pancreas got damaged when I was almost dead. My life turned on it's head on 9th March 2013 and it's getting really hard for me to accept it, as I was always hands on and fiercely independent and I absolutely hate having to ask people for help

  • Since you have now mentioned a problem in diabetes control I am wondering if you may have some dysfunction of the endocrine system.You might want to ask your GP his opinion on referral to an Endocrinologist to check out your issues .We were all very independant before our BI's,asking for help is not a sign of weakness,rather a display of respect for our level of function-push yourself too hard and you may find it bites back and takes longer for you to get back to your base level again x

  • I'll try and stay on subject.

    Yes, I hate asking for help - and hate it even more when they COULD help but don't.

    I don't think most people have a CLUE about how terrible sleep problems are for us. It's EXTREME and for me is probably the hardest thing of all (or maybe paperwork?!) to deal with. Month after month, year after year. And WORSE when I go out, talk and do what I LIKE doing. Anyone else get that?

    And STRESS = WORST OF ALL. On and on. So many of us struggling with so much: benefits,money, rent and bills, cooking, getting around...

    I had a sleep study before my ABI: it was rubbish. Freezing cold and had to keep asking for a blanket, got one in the end but bed so uncomfortable, noisy clattering going on, still cold and didn't sleep well at all = NOT recording my sleep as it normally was at that time = 8 hours through EVERY night, wow: just took it for granted. Don't know what you've got til it's gone.

    Was there for blocked right side of nose, not corrected at all by bungled septoplasty op (removal of bit of cartilage inside nose to open it wider for easier nose breathing) in my 20s, they took bit out from wrong place then when I told them had made no difference they blamed it on my smoking but when I quit for 2 years = no change, they blamed me instead of consultant (?) who didn't do op properly.

    They said my breathing was 'reassuringly normal' and then did a different op before they'd address my blocked nose on one side. None of them asked ME about how the sleep study went or whether it was anything like my normal sleep! Never mind, water under the bridge.

    But yes, we just get given endless meds instead of tackling the causes. Total RUBBISH but gets us out of their hair. Until we run out and need more then have to argue and justify...

    GPs never have enough TIME to do anything properly, costs more in longterm.

  • Hi Jimbo,

    Lavendar is supposedly calming, breathing in the scent of it via bag of ground lavendar, using a Lavendar scented bath oils or maybe getting a spray with a Lavendar scent and spraying your pillow before you sleep?

    I've got a bag of the ground stuff and have given it a few wiffs before bed. Personally, it doesn't work on me but Lavendar works with my Mum.

    Chamomile tea is also calming. I have tried that once or twice and it is pretty good.

    I sometimes have a turmeric tea. I find that works better on me. I just add a little ground Turmeric to a cup, and fill it with boiled water. Add a little honey to it if you need it. I make sure to drink it in the morning. I feel it doesn't work so well right before bed.

    I used to play puzzles on sleepless nights, that could work well. I stopped because I couldn't be bothered to keep readjusting my eyes to the light/dark.

    I know you mentioned exercising to tire you out and that did not work but have you tried taxing your brain by solving puzzles? Sudoku is a good one for me.

    Hope you solve this weird problem with your sleeping problems.

    MJ

  • I've tried it ALL (except turmeric = spicy?) including lavender which I love but doesn't make me sleepy. Nothing works except the very obvious things: NO STRESS, calm, quiet, right temperature, love and friendship, safe place to live/sleep with no fears/dangers, enough money to pay rent/bills and all, being wanted and useful (maybe a job/volunteering if able) and included... same as everyone needs.

    BUT over-active brain since ABI = did deal with far better than now, far far fewer bad nights but know there'll always be some unless I do NOTHING. PLUS the pain (lots, sometimes cry coz hurts so much). Tablets don't really sort any of it but pain can deal with far better when everything else is good/better.

    We all need (I think?) the same things, need all the basics right and sorted TO FIT US and how we are then, and only then should tablets/medication be investigated/tried. But the RIGHT meds, addressing US as individuals not just the routine 'oh, depressed = antidepressants, I know X med so let's try that' ending with (as my GP said): 'what have we got to lose?' Yes, he said WE! Him = nothing, me = lots.

    I was terribly anxious, depressed and not sleeping without tablets and he referred me to mental health as my state needed addressing urgently (ish), he refused to help with what I needed but passed me on, supposedly to specialists, long story.

    And he referred me to gastroenterology for swallowing problems, he knew not just 'psychological' (as tried to make out for so long), another long story. But gastroenterology passed me onto ENT...

    And he never followed up or chased anything. He's still a GP...

    Sorry, off-track again: mega psychological traumas on top of all the rest but nobody addressing them either and the silly split between physical and mental/psychological health and social services is MAD.

    Odd GPs get something flash up on PC (NHS targets and think the practice gets a bonus payment if certain % 'done' and put onto PC) telling them to check blood pressure and ask about 'lifestyle' (smoking and alcohol and exercise) but NEVER about lack of sleep and STRESS coz of poverty, bad nutrition/eating, housing and social problems, why not when they can be cause of high blood pressure and so much illness?!

    And they tell us not to self-medicate (with alcohol, marijuana etc.) but are these any more dangerous than sleeping tablets? Sleep tabs are addictive as is alcohol. Marijuana, which many people find help them lots by calming and relaxing them and aiding sleep is outlawed even though it isn't addictive chemically (I think), maybe just psychologically = no wonder if it HELPS!

    I've used benzos (valium etc.) and sleep tabs for so long, I'm addicted now but have to hassle and argue to get more from state-licensed dealers (docs) but NO help to come off, no help sorting WHY need them and just left cold turkey = dangerous. WHY no big noise about our addictions to MEDICAL drugs and what's caused that?

  • Turmeric is not spicy at all, just so you know. I thought it might be spicy before I first tried it because it is used in curries. The turmeric only adds the yellow colour to the curry... And addshealthy nutrients to the dish :).

  • Also Jimbo, I expect you might have tried this already, but take a nice relaxing bath right before bed.

    Usually after every bath I have my eyes feel very heavy and I sometimes sit in my chair and close my eyes when my eyes are heavy. After a bath, I sometimes fall asleep in my chair :).

  • Thanks for your advice but I've tried them to no avail

  • YOU COULD TRY MEDITATION. IT SOUNDS A BIT NEW AGE & POINTLESS BUT ONCE I HAD BEEN TAUGHT TO IT PROPERLY IT REALLY IS CALMING.

    THERE'S ALSO A BIT OF BASIC YOGA. AGAIN IT SOUNDS ABIT OFF THE WALL BUT IT LEAVES A FEELING OF PEACE & RELAXATION.

    THE PEOPLE TEACHNG ME ALLCAME TO MY HOUSE SO I DIDN'T HAVE TO OIUT.

    I'M SORRY IF THIS SOUNDS ALL HIPPY & STUFF BUT IT CAN WORK .

  • ALL MY HIPPY STUFF ABOVE WAS AIMED SPECIFICALLY AT PEOPLE WHO'D HAD BIs.

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