my evenings ruined by falling asleep !

[peterfromlondon]

im 70 quite fit , but this is really stressing me out , my doctors are really pushing did all the blood tests with normal results , then said sorry its up too u too stop yourself falling asleep so early in the evening ! how ? i get no warning ...........happens now nightly around 8.30 ot 9pm then i suddenly wake sitting in my chair freezing coLD ! AND OFTEN bit confused , it happens for average 30 mins too 40 mins , then normal .................. advice please! i go too bed 10.30 up at 7.30 too 8am . sleep ok most nights . awake couple off times but soon go back too sleep

[kev60]

Hi, I to suffer with sleep issues I was sleeping up to 30hrs at a time, it would take less than 7 minutes to fall asleep. I would fall asleep waiting in hospital or reading a book or watching tv . My gp referred me to the sleep clinic (Guys ) . It took awhile to get the appointment and I fell asleep in the consultation my wife had to wake me, so they booked me an overnight appointment and did bloods ( low b12 and folate). The result was apnea ( I stopped breathing at night my wife told me) but they found I stopped breathing a lot , to much as it was a threat to life found to be my pain patches so had to wean off them. Had another overnight stay and apneas were at safe levels although not ideal and fond I suffer with PLMD (limb disorder) . Now it can take 1-3 hrs to fall asleep and I sleep for 1.5-2hrs at a time so my sleep now is very fragmented. I am due a Datscan to see what’s happening in my brain. Also suffer with FND, COPD (emphysema), GORD, osteoarthritis of the thoracic spine, chronic pain and tremors. I would advise getting your gp to refer you to a sleep clinic (neurology) once your in it goes quickly, I was seen last October had sleep overnight in November and retested in January this year and my scan is at the end of the month. Good luck hope this helps a little. Kevin

[peterfromlondon in reply to kev60]

Thanks kevin ,i have attended this clinic too but 6 years ago when i had the same sleep problem ,the result was yes u do have a problem but not in the worrying stage and wad told they could not help at that stage

[kev60 in reply to peterfromlondon]

Hi, could be form of narcolepsy? My blood test came back that I have indicator for this but I am one of the 20% that it does not affect. Hope you find answers . Kevin

[peterfromlondon]

Ive had all the blood tests done ,twice !

[kaliska0]

Doctors always leave out something relevant when deciding what to test for. All my tests for vitamin and mineral deficiencies kept coming back normal. Until someone actually did a vit D test and found that somehow I had a severe deficiency. It didn't seem likely to doctors so they tested everything but that. It also got completely skipped for over 10 years that my estrogen level constantly remains higher than is normal for any stage of pregnancy when I've never even been pregnant. Doctors resist testing because hormone levels change so often but when someone finally decided to see what the level actually was it was extremely obvious there was a problem. Hormone imbalance massively impacts sleep. All reproductive hormones, cortisol (this is typically a urine test), and thyroid hormone should be included when trying to use lab work to rule out causes of sleep issues.

Thyroid function has numerous tests but doctors often just do a TSH test and call it good. TSH is merely a signaling hormone that tells the thyroid what to do. It is not a direct measurement of thyroid function. The idea is that the body will keep making more of it if the thyroid is not responding and make far less if thyroid hormones are high. This frequently is not true but it's a quicker, easier, cheaper way to check for a very basic thyroid disorder. To fully evaluate thyroid function you need multiple types of T3 and T4 tests.

Cortisol is often done as 24hour urine collection and then they just see if the concentration of it throughout the entire time is average. This completely misses when and how much cortisol rises and falls. It has to rise in the morning and it has to fall at the right time at night for you to sleep at the right time and be alert during the day. A saliva test done periodically over 24 hours is available but not typically used by regular doctors or the cost covered. I had to go to a functional medicine doctor and pay for all costs to get that level of detailed testing.

It really depends on the quality of the doctor you are dealing with as to whether they pick the correct tests to do. The number they could do is way beyond what is paid for and would require numerous trips to a lab or at home collection.

Blood tests are limited in usefulness for sleep issues though so they aren't the best thing to pursue first. Sometimes testing finds something random and obvious despite minimal related symptoms but everything used as a measure of health on blood tests can also look perfectly fine while sleep is ruining someone's life. Even when sleep disturbance is causing some signs of health issues it often isn't things that show up on typical blood tests. Changes in heart rate, respiration, blood oxygen level, temperature, and blood pressure throughout the day and night are much more useful to know. Basic vitals are often altered by quality and quantity of sleep despite no other sign of a health issue.

You did a sleep study and had one since the symptoms started? That is the most likely to give an answer and having one years ago is mostly useless. Sleep can change rapidly and the best way to see what is going on when it does is at minimum an EEG. There is no way to know what happens while you are asleep without monitoring brain activity, respiration, hear rate.... I eventually bought an oura ring so I'd know the quality of my sleep and vitals while sleeping without the limitations and inconvenience of having to go into a sleep lab repeatedly. Better home use units for eeg exist now and some are recognized medical devices at least partially paid for in most of Europe and sometimes Canada and the US. Justifying a need for any sleep monitoring device can be difficult and may not be possible without years of sleep issues with no known cause.

For me it turned out sleep studies were being run at the wrong time of night and for too short of time to see that I was getting about 5 minutes of total rem sleep and little deep stage sleep every night. The average rem for people who feel rested and alert is 90 minutes. I also found that even if I managed to fall asleep sooner I did not get any useful sleep until the usual later time I feel like sleeping. I couldn't get up earlier because even if I sleep sooner it is only extra hours of shallow sleep with micro-awakenings. With micro-awakenings brain activity looks like someone is awake even if they don't remember the minute or 2 it happens. While the time awake is short it takes considerably longer for the brain to shift back to deeper sleep. This is impossible to know without an EEG.

How you feel in the morning is also not a good indicator of sleep quality. People often feel horrible and lacking energy when they wake up from deeper sleep and more alert and energetic when they wake up from shallow sleep. You could be sleeping great and have lots of trouble getting up or sleeping poorly but find it easy to get up in the morning. Evaluating how you feel at the start of the day can be the exact opposite of what you are getting for sleep. You need an objective way to measure sleep and that's not easy since you don't remember the entire time.

Being able to wear an oura ring all day, every day to track everything that happened while asleep and awake for a few years was very useful but the cost and fact the oura ring often has battery issues within 2 years prevents it from being a good option unless they can't get enough information from a sleep study. Despite 4 or 5 sleep studies over the years all they could determine was how fast I fell asleep because the limited time I was there made it impossible to record all the sleep I typically get.

After decades of sleep issues the biggest thing I learned was not to rely on the tests doctors typically run.