Sacked because I can’t stop sleeping

[desperateexhausted]

Posting here for traffic and NC because I’m ashamed and furious with myself.

So I haven’t been sacked but if I don’t get a handle on the problem I’m heading that way. I have a job with regular daytime hours (no horrible shift patterns, no very early starts or late finishes) and I can’t manage it.

A week of regular 9-6 work absolutely exhausts me to the point that I have in the past fallen asleep in my clothes the moment I got home, not eaten any dinner and slept through til the next morning several times a week. Some weekends I sleep for almost the entire 48 hours, emerging only to use the toilet or microwave a ready meal. I’ve had countless sick days (probably over 20) in the last year because I’m sometimes so tired that I can’t see straight, I feel nauseous and dizzy when I sit up and the fatigue is so overwhelming I feel like I’m being crushed.

I also sometimes (often) sleep through the morning and simply don’t turn up at work. I have two alarm clocks going off right next to my head and they don’t wake me, particularly if I’ve had a night of insomnia (which I also, somewhat ironically) suffer from. This has been going on since my teenage years (I’m now in my 30s) and affected every single job I’ve had - I’ve had probations extended, been sacked from freelance contracts, and now I’m on very thin ice at work. I’m outwardly a professional and successful person but I can barely hold down a job because I cannot stop sleeping and I’m at my wits end. Chronic fatigue has been mentioned by a previous doctor but wasn’t followed up for reasons beyond my control.

I don’t know what to do. I don’t want to live like this. I’m not exaggerating when I say it’s ruining my life and will ruin it even more if I lose my job (which, frankly, I deserve to). I don’t want special treatment from work, I know how ridiculous it sounds as a grown adult to say ‘sorry I slept through my alarm) 20 odd times a year. I would chop off a limb for an official diagnosis but every blood test I’ve had for the obvious possible reasons comes back completely clear (and I’ve had a lot of blood tests for this over the years).

Has anyone experienced similar and found a solution? It’s getting to the point that I’m terrified every time I go to bed on a weeknight that I won’t wake up when I need to, which in turn keeps me awake worrying, which then disrupts my sleep even further. Any advice would be very, very gratefully received.

Perhaps write down, in point form an exhaustive list of all that is going on and hand it to your doctor to read so you know you've really said what you need to at your next appointment. Sometimes on the spot it can be hard to express what's happening and convey the seriousness - just a small thought

www.narcolepsy.org.uk/resources/epworth-sleepiness-scale

Do this and insist on a referral

I had a much milder version of what you are describing and was veggie and saw one dr who took some bloods and didn’t sY what for and when I got the all clear they said it might be something more serious and took more bloods, when I when to get the results it was a different dr who said they were all clear too, then asked if I was veggie and tested my B12 levels and those results were very low, but two weeks later after some vitamin pills I was a different person with a lot more energy and didn’t need to sleep all weekend or straight after work

I was very similar. It turns out I was diabetic.

I am wondering if this is narcolepsy? The insomnia certainly fits. I would definitely ask for a referral because something is not right. Have a read about narcolepsy op. Maybe worth mentioning this to the doctor. It often starts in the teenage years as well,

Insist on a referral to a sleep clinic. They put monitors on you while you sleep and can diagnose sleep apnea etc.

Agree with the poster who said look at your diet. Insufficient amounts of certain nutrients including magnesium and b vitamins can produce the symptoms you describe. In my experience conventional medical cannot help these types of problems and it’s time to try an integrative physician—one who does nutrition alongside alternative treatments like acupuncture, Ayurveda or homeopathy. It will not be a quick fix for you, give it a couple of years but you should notice some improvements within weeks.

Sorry should be conventional medicine not medical

I agree that if all else fails, try going gluten free for a month - coeliac can cause crushing tiredness.

Unfortunately to get a proper diagnosis you would have to eat gluten again for a couple of months but I would give it a try anyway, as it's so straightforward.

You need to advocate for yourself and see a sleep specialist and maybe a neurologist.

It could be CFS or it could be some form of narcolepsy. A GP is not equipped to diagnose you. But you need to see someone specific for your needs.

Can you afford to go private?

I have horrendous insomnia and slept through my alarm regularly. I was late for work constantly and once was late every day for a month. I found an alarm clock called Sonic Bomb and I've never slept through it once. It has a vibrating pad that you put under your pillow, and it is designed for deaf people. Good luck sorting your other issues.

Just echoing pp saying to look up the epworth sleepiness scale and insist on a sleep study. I had to fight for YEARS to get seen, because of the typical "it's probably just depression/try sleep hygiene/everyone feels tired" rubbish that is usually used to fob people off. And after multiple 'clear blood tests' (which is a whole other issue in itself, as low iron levels and low thyroid levels were also shrugged off at various stages despite my symptoms - what's the point in the reference range of they still won't treat when you're outside of it?!). Anyway point is, even when my iron and thyroid levels were normal I still slept 18+ hours a day, would fall asleep at my desk at work, sometimes at home when I was mid conversation, and when 'trying' to sleep I would be unconscious within seconds (where it used to take me hours to fall asleep). When I finally had the sleep study it showed idiopathic hypersomnia and stimulants have helped a lot. Had this test been negative, the next diagnosis my consultant had said was likely was CFS/ME..

Also, I have to work part-time as even with the stimulants (to be fair I have 2 autoimmune diseases as well) I am unable to function in a full-time job as I just can't sustain the level of alertness required for over 20 hours a week.

Get your thyroid checked, T3 & T4 levels as well as antibodies in case it's Hashimotos.

Insist on seeing an endocrinologist. They can at least start ruling things out. If you can afford to go private, this will all happen so much quicker.

1. Get checked for sleep apnoea (will a sleep study, the number of times you wake up gasping in unreliable in predicting severity)
2. Check thyroid function and Vit B 12 blood test. (You May but be able to absorb from diet & need injections)
3. Cut out gluten.

Have you had overnight oximetry to rule out sleep apnoea? That makes you sooooo exhausted and is so often missed as a diagnosis - yet its easily treated with CPAP

Good luck for tomorrow!

Sounds like you have a sleep disorder, possibly on top of other problems (as I do and it’s horrendous to live with). Ask for a referral to a sleep clinic. GPS have no clue about sleep disorders. I was offered only antidepressants for years.

Do you snore?

I was falling asleep every day at around 4pm and it turned out I had sleep apnea.

As soon as I got treated I felt like I could take on the world even though I regularly only get 5 hours sleep these days.

Your description of symptoms sounds much like mine. I didn't feel right for more than a decade. I also suffered from depression about 6 years ago & remember saying I was depressed because I was tired, I was not tired because I was depressed. I had IBS & migraines, heavy periods. My exhaustion was constant with flare ups where I didn't function - over many years I struggled & dropped out of uni, college, missed 10 months of work.
A miscarriage a couple of years ago increased the pain & exhaustion which then led to my diagnosis of fibromyalgia. The symptoms are general so could be many things so worth getting checked out & getting some tests done. I now work part time to help manage in condition in a seated role.

@RoomForMore

Get your thyroid checked, T3 & T4 levels as well as antibodies in case it's Hashimotos.

Insist on seeing an endocrinologist. They can at least start ruling things out. If you can afford to go private, this will all happen so much quicker.

^ This

Not just TSH. you can have Hashis with "normal" TSH but the T3 and T4 are vital.l clues to what else is going on.

I used to struggle like you, now I can wake up - still sleep 12 hrs at weekends, though, cause I can!

Just quickly - I had dreadful trouble staying awake during the day - I can manage about four / five hours at a time without feeling really sleepy. This has been the case since my teenage years - I too have lost jobs. It informs every single decision I make, from not driving to whether I go to a wedding or not (only if there is on site accommodation so I can go for a nap.). In fact, I slept right through my pal's wedding, going for a little lie down after dinner and waking up five hours later as everyone was going home....

The problem with sleeping disorders is unless you have classic catoplexy symptoms (literally falling asleep in the middle of a sentence) everyone thinks it's your fault. I first went to the doctors at the age of 19 after my uni lecturer told me off for falling asleep in her seminar - I was mortified! But the doctor assumed I was out partying and drinking all night...... As did the manager of a temping job I got a few years later, who sacked me infront of an office full of people.....

It took 30 years for a GP to refer me to a sleep clinic - I have had a polysomnagram, a lumbar puncture to measure hormone levels, DNA tests with regular check ups but still, no diagnosis. I take modafinil, which helps, but I do have to keep begging the doctors for it because they keep wanting to wean me off it (why!? I am not cured!)

If you have had this since adolescence it sounds like it could be a sleep disorder like narcolepsy, and it's worth asking your doc to refer you to a sleep clinic...... DM me if you want any more advice xx

Good luck OP. I really hope you get it sorted x

Sounds just like me in my early days of Chronic Fatigue Syndrome. Otherwise known as ME or CFS

Your nearest major hospital should have a Chronic Fatigue Services department