EEG and sleep disorder - feel deflated
Posted , 3 users are following.
Hi everyone,
Basically, I've been to my GP, had full bloods, they tested my thyroid function, they tested for anemia, diabetes, (as they all have certain symptoms I show, including fatigue) my kidney function, white blood cells, etc, and I had an MRI and an awake EEG, they all came back in normal range they said.. I've had numerous symptoms, mental and physical, but I accept the results of course, even if I feel a little at a loss.. I asked my GP to refer me to a sleep clinic, to rule out a sleep disorder, it's the only test I've not had done, and I have symptoms. The symptoms I have are, excessive day time sleepiness, to utter exhaustion, sleeping and napping constantly throughout the day, (24 hours the other day and I was told this is normal?) vivid nightmares and dreams every night, sleep paralysis, waking up to see hallucinations, fragmented sleep, waking up a lot in the night, etc. All I wanted to do was rule out a sleep disorder, and I had to practically beg her to refer me. They made me feel like a hypochondriac, fair enough, perhaps I can seem that way, but I feel I have enough real symptoms to warrant my appointment, but still, she was a tad patronzing, rather cold, and dismissive. She said because my awake EEG seemed normal I could not have a sleep disorder. All I want to to is totally rule it out, and will accept its psychological as she says, after we can rule this out. I do have depressive episodes throughout my life, and yes, am rather low at the moment, and am not ruling this out as a cause, but I just feel there's something more.. but will admit, perhaps I am wrong. Is she right? Is a daytime normal EEG definitive proof?
I feel utterly deflated. I wish GP's would work on their bedside manner. 
Anyway, thanks for listening.
0 likes, 10 replies
teresa97915 emzii92
Posted
Really sorry to hear you're feeling so exhausted all the time. Has your GP ruled out Chronic Fatigue Syndrome? And also, are you taking antidepressants? Maybe you need a different medication for your depression. I sleep all the time when I'm depressed.
emzii92 teresa97915
Posted
Thanks Teresa, sorry to hear about your depression. I'm not on anti depressants at the moment, I had a bad experience prior with some, so am reluctant, but won't rule them out at all. My doctor hasn't spoke to me about M.E. I know how difficult it is to diagnose and how many GP's are skeptical about it.. it certainly feels like a possibility!
teresa97915 emzii92
Posted
Well, maybe you should speak to your doctor about it! Don't wait for her to bring it up! And if she's not into it, maybe ask for a second opinion. Good luck - I really hope you find some answers
emzii92 teresa97915
Posted
Thank you!
lily65668 emzii92
Posted
Sorry to hear you're having such a rough ride with your GP. I can't quite make out from your post whether you actually got to the sleep clinic or not. I'm afraid GPs aren't always very knowledgeable about sleep disorders. I've had every indication of obstructive sleep apnoea for years, but my former (female) GP flatly refused to refer me to a sleep clinic, as she said it was impossible for women to get it. Since a recent house move, I now see a male GP who says that's utter rubbish and has referred me! (Still on waiting list.)
This all ties in with your sleep paralysis. I have this too, together with the associated hallucinations. It's a well-known condition that I've had all my adult life. It tends to be hereditary - my father, at least one of his siblings and their mother all had it.
A small proportion of SP sufferers also have narcolepsy. This is a condition where people fall asleep uncontrollably during the day. However, to get a narcolepsy diagnosis you'd have to have the third leg of the condition - cataplexy. This is where the sufferer abruptly loses all power of movement for brief periods when they're awake. Typically, these people suddenly collapse to the floor when laughing or under the influence of other strong emotions. It doesn't sound to me as if this is what you have, particularly as you say you've had a lot of investigations.
There's another condition called hypersomnia, which affects many SP sufferers. This is excessive daytime sleepiness without cataplexy, and which is less extreme than the daytime sleepiness of narcolepsy. This one is very controversial because of the overlap with narcolepsy. Many doctors refuse to accept it as a condition at all, let alone connect it with SP, whereas the majority of SP sufferers - including myself - report some degree of hypersomnia. (And I know who I'm more inclined to believe!)
I suspect the underlying cause is obstructive sleep apnoea. These days, sleep specialists are far more ready to make a connection between SP and sleep apnoea than they used to be. I'm pretty sure I have it. As well as being told - in the days when I had a bed-mate - that I sometimes stopped breathing for quite long periods, I also sometimes find myself unable to breathe during sleep paralysis. There can be some confusion here. SP paralyses the voluntary muscles that assist our breathing during our waking hours, leaving only the diaphragm functioning. To someone waking in a panic to find themselves paralysed, it can feel as if they can't breathe, as they're unable to take a deep breath using the intercostal muscles. However, experienced SP sufferers are usually able to discern the movement of the diaphragm. This is usually the case when I wake in SP, but on other occasions I am distinctly aware that my soft palate has collapsed into my throat, completely blocking my airway. That's why I'm looking forward to the sleep clinic!
Obstructive sleep apnoea is most common in overweight men over the age of 50, which can lead some doctors to dismiss the symptoms when they occur in women or younger people. It can, however, occur in patients of either sex and all ages and builds. One of the main symptoms is daytime sleepiness, due to sleep disruption.
As to how cope with the hypersomnia - well, it does tend to be something of a life sentence. My father had it too. He twice fell asleep while riding his bike! It's very annoying and exhausting, but you just have to organise your life around it. I've never dared drive, as I know I'd be at risk of falling asleep at the wheel.
Finally, as a former neuro nurse, I'm a bit puzzled about your doctor's assertion that you can't possibly have a sleep disorder as your waking EEG is normal. Things may have moved on since my time, but as far as I'm aware, a normal EEG wouldn't exclude a sleep disorder.
emzii92 lily65668
Posted
Hi Lily, thanks for your response. Reassuring to know I'm not the only one, but shocking of the doctor to refuse! I'd assume both sexes can be affected! I've yet to visit the sleep clinic, but have been referred. She said it'd be a long waiting list, but not sure if that was a deterent or not. I did mention narcolepy and sleep apnea, she flat out said I did not have either, and she knew for sure. Not sure how! I am sorry to hear about your SP. I wasn't sure it was hereditary, I don't know of anyone in my family who suffers, but haven't really asked.
I know some narcoleptics do not have cataplexy, or I've heard, I could be wrong! But I don't have cataplexy smytoms, no.
It's sad they don't accept hypersomnia in connection to SP.. I could definitely believe it can be a stand alone condition, and should be taken seriously.
Sorry to hear about your suspected sleep apnea, it does sound liek this is your issue.. and possibly mine. I am a few pounds overweight, so realise this could possibly increase my chance. I'm quite sure I don't snore, is this in conncetion with sleep apnea? Suppose I haven't had anyone closely monitor me sleeping to know about the breathing issue, but with SP it sounds like this could be the case.
Oh dear! Your poor dad! I'd worry about driving..
I'm currently out of work, a lot to do with the exhaustion, my last job I made carelss mistakes and was nodding off a lot. I'm not sure if napping is recommended or not? I feel oversleeping makes me tireder, but I can't get through the day seemingly without a nap. Near sort of 5pm? I start to struggle.
Anyway, I have no idea. I really believe it could be a money issue, it will cost the surgery to refer me. She said 'one person did well at the clinic, another didn't' I've no idea what that means.. And I believe you. I thought an awake EEG and asleep can bring different results, and theres more to it than that.
Anyway, thanks for your advice.
I hope you get your sleep issue sorted out too and good look with the clinic appointment.
lily65668 emzii92
Posted
Hi, to go through your various points:
I believe some narcolepsy sufferers don't suffer from cataplexy, but it still doesn't sound to me as if you have it. The onset of daytime sleep in narcoleptics is very abrupt. You may have seen TV documentaries where some unfortunate individuals literally fall face-down in their plates at dinner. I think you'd have had some input from your family, friends, colleagues etc. if you were having a problem of this magnitude.
I can understand your doctor deciding that you don't have narcolepsy, but I can't for the life of me see how she can categorically state you don't have sleep apnoea or any other sleep disorder without having a report from a sleep clinic in front of her.
On the question of snoring, it's true that most sleep apnoea sufferers do snore, but this isn't an absolute rule, especially in women. I never started snoring till I hit the menopause, but I've had many signs of sleep apnoea from my early 20s: morning headaches, waking breathless on occasion, being aware of my throat being blocked during sleep paralysis, and reports from room-mates. I've just done a bit of internet research, and found a very interesting article about how sleep apnoea symptoms can be very different in women, especially the absence of snoring. Can't post a link here but if you google "women and sleep apnea" you should find the page on the National Sleep Foundation site. It's an interesting discussion between sleep experts, but it's aimed at the general public, so not too technical. I'm guessing you're female from the tone of your posts, but even if you're not I imagine there could be wide variations in symptoms among men too.
As regards napping, some sources seem to think it's a good idea, others not. I can't say it makes a lot of difference to me either way. Left to my own devices, I'm inclined to nap during the day, but it doesn't make me feel any less tired afterwards - often the opposite in fact. When I'm forced to stay awake all day - as was the case during a strenuous five-day holiday I took last week - I don't feel any more tired than I do normally.
According to the National Sleep Foundation site, being obese isn't a requirement for the condition either. I'm not overweight, with a BMI of just under 24, and my BMI was only 17-18 till my mid-30s. I do, however, have an unusually short, thick neck (inherited from my father's side of the family, where they all had SP and hypersomnia). This was always true, even when I was very slim. I gather this doesn't help things but, once again, I don't think it's true of all sleep apnoea sufferers.
Keep pushing your GP for a referral to the sleep clinic. And good luck to you too!
emzii92 lily65668
Posted
Thanks for the information, really helpful.
Looks like she may have been right about narcolepsy, but yes, odd for her to assume theres nothing wrong from bloods rather than a sleep study.. very much so. It sounds like sleep apnea is very much a possibility. I shall google women and sleep apnea, thank you. I am female yes. I can find overlseeping can make it worse, but just can't get through the day without a nap.. so bit of a loss. I'll continue what I'm doing until there is some clarity with the situation. Thanks for clearing up the weight issue, I always assumed you had to be, so that is refreshing. I do think it's beyond a mood disorder, as when I'm feeling in good spirits, I am still exhausted, so really want to probe this further.Thank you again for your advice and detailed response. Fab site and people. Good luck to you too!
echobrie emzii92
Posted
I have narcolepsy and You're symptoms sound exactly what I had dealt with for years. No, you do not have to have cataplexy if you have narcolepsy. Many doctors know little to nothing about narcolepsy. I went undiagnosed for 10 years. Being told I need to excerise more, change my diet etc. I knew it had nothing to do with that. Some people with narcolepsy solely have the symptom of excessive daytime sleepiness. I finally got referred to a sleep disorder specialist and before I even had my sleep study he said I was basically a textbook narcoleptic, but still needed to do the sleep study for insurance purposes so I could be treated with proper medication. Narcolepsy is very misunderstood even in the medical field. They've tried telling I had everything from chronic fatigue syndrome to sleep apnea. I hope you figure everything out soon. I know how draining it is trying to figure out what's going on.
lily65668 echobrie
Posted
That's interesting, echobrie. My symptoms are more or less the same as emzii92's too, though I've never believed I had narcolepsy. Whatever it is that I have, it certainly stopped me reaching my full potential, and I know the same was true for my father, who suffered more than me.
Though I managed to qualify as a nurse and stayed in the profession for 10 years, I eventually gave up, as I was concerned that the inevitable concentration problems brought on by my tiredness would harm my patients. From my early 30s I took on a range of secretarial and administrative jobs, but often struggled to cope because of the constant exhaustion. I even got fired a couple of times for lateness and absence, when I just couldn't drag myself out of bed in the morning.
This was all very frustrating, as I know I'm not stupid - I always come out around 145 in IQ tests - and could have achieved more in my life. I've always tended to beat myself up because of my laziness too.
I've had sleep paralysis with all the associated hallucinations all my adult life (another sign of narcolepsy, I know) and have long been convinced that I suffer from sleep apnoea. However, it's only very recently that I've found a GP who is prepared to entertain the idea that anyone except an obese, 50-year-old man could possible suffer from obstructive sleep apnoea. I'm now on waiting list for the sleep clinic.
Interestingly, I have also had just one attack of what appeared to be cataplexy in my life - in my early 40s. During a difficult time at the end of my father's life, I had accompanied him in a traumatic, 4-hour transport ambulance for a hospital appointment, knowing that he was close to the end. (And this indeed turned out to be the last day of his life.) He got admitted, and while I was talking to the nurse in her office, my knees unexpectedly buckled and I fell to the ground completely paralysed. It was a weird sensation. I remained conscious throughout and hadn't been crying at the time. I'd been in the middle of what seemed to be a perfectly rational conversation with the nurse when it happened, though was obviously feeling strong emotions. I think it lasted about half a minute, before I was suddenly able to move quite normally again.
I'll be interested to know what the sleep study turns up, when I eventually get there. However, I can't say I'm in any rush to start taking amphetamines at my time of life (72) and I'm guessing they wouldn't be prescribed at that age anyway.