Hello everyone

Hi I am new here. Didn't know there was such a support group. This is wonderful. What can I say about sleep? Only that it has become a luxury. Not because I don't get time to sleep, because I go to bed and stay awake through sleeping pills. Lately, I am doing better. 4,5, even six hours throughout the week with one or two sleepless nights. The problem is that with FM I have too many health problems to manage all of them. So I stumble through life managing the one most pressing.

[kaliska0]

I would stay awake through 800mg seroquel, 75mg amitriptyline, belsomra, 30mg flurazepam, ~800mg gabapentin.... I might be missing something.... all at the same time. I know I took hydroxyzine at times but I forget if I traded it out for something or just added and removed it periodically. Rotated the antipsychotic a few times to see if others were more useful, traded amitriptyline for trazadone or mirtazapine at various points, and used a variety of benzos and z-drugs before finding flurazepam. Whatever other meds I don't remember.

At the same time I was also following schedules and sleep hygiene rules, taking otc supplements like valerian root and otc antihistamines, and my whole house is lit up with daylight lamps that are all set to a timer. All electronic screens dim and go to blue screen light filter at night.

When I first got diagnosed as having a sleeping problem I was told insomnia is a symptom that has a cause. I thought we'd just find the cause and it would be fixed. I was so naive 20 years ago. Our understanding of sleep and how to treat it is barely existent.

Sometimes for days I just never feel the need to sleep. I have the results of sleep deprivation but not the pressure to sleep. People don't understand when tired and sleepy are 2 completely different things. It's like starving to death but not getting feelings of hunger in your stomach. You get symptoms of low blood sugar, have no source of energy, might start to feel dizzy or nauseous, eventually you would suffer malnutrition, but you wouldn't know why if you didn't know lack of food caused those symptoms because you don't feel the need to eat. Except you can force yourself to eat. You can't force yourself to sleep if your body doesn't respond to any of the triggers for sleep.

[Catsamaze in reply to kaliska0]

Hi K1z.....and welcome....Sleep has become a major issue for me. Meds have not helped and may be part of the problem. My doc said that the best predictor of insomnia is....insomnia. He’s right. It becomes a deeply entrenched habit. And subconsciously I expect to wake up multiple times a night. I’m scared of what insufficient sleep is doing to me physically and that makes it worse. In your case FM is certainly a complicating factor. As far as the habit part of insomnia, the good news is that bad habits can be unlearned and replaced by good ones. It just takes time, but in my case I just don’t want to wait anymore.....

[Hidden in reply to kaliska0]

God that is awful, kaliska0. I know the feeling of having that medication making you woozy but failing to sleep. Amytriptyline was most unkind. In the end I weaned myself off it. Better to be alert and not sleep for me.

[Hidden]

I dare not nap during day time! Even a single wink means goodbye sleep for that night. I can go two, three days without sleep them sleep nine hours the following night. If I am going to sleep, it happens anywhere and there is nothing to do but sleep. I call it passing out. Long hour sleep like seven eight nine hours mean there is no sleep left for the following night.

There are times when I sleep but wake up like six times a night, times I sleep let's say at 9 but wake up at midnight and that is it. What I am aware of is that effort to make me sleep is wasted.

[kaliska0 in reply to Hidden]

Naps would be awesome. I haven't napped since I was 5 years old even after not sleeping for 48hrs straight. Except while taking welbutrin a few years back. I got to see for a few weeks what it was like to actually fall asleep when tired and not even be able to stay awake when you want to. It was kinda annoying after awhile and still amazing. Unfortunately I couldn't keep taking welbutrin due to physical side effects and no matter how much I research the pharmacology of it I can't find what it is about that med it completely solved that one problem. I can't find anything that works similarly enough to have more than a fraction of the effect welbutrin did.

For those that don't know yet I warn you that 20 years of researching my insomnia and sleep problems in general tends to lead to long posts. Luckily I have been timed at typing over 100wpm on a good day.

It sounds possible that much like me you do not seem to respond properly to "sleep pressure" as researchers call it. It's the build up and depletion of compounds such as adenosine (what caffeine blocks) that triggers your brain to sleep and tells it how long to stay asleep. A variety of other things are involved too such as lowering cortisol, reducing immune system activity, lower dopamine, lower serotonin, increased melatonin, reduction in estrogen(in women), rise in progesterone...... Researchers don't even know what all is involved in creating sleep pressure but it builds until you sleep and slowly reduces as you get enough sleep. Without enough sleep pressure you won't feel the need to sleep, fail to fall asleep when you try, not be able to sleep long enough, etc... and feel tired when you wake despite no longer having the ability to keep sleeping.

That's why avoiding naps is important when you have insomnia and most of the suggested good sleep habits such as exercise, sunlight exposure, comfortable sleep environment, quiet evenings, and maintaining a schedule all work to trigger the body into increasing sleep pressure. Some cases of insomnia these things don't seem to work like they should and those are the hardest ones to solve with the most unpredictable reactions to the attempts at treatment.

Prior to the meds and supplements I'm using I frequently did the whole lay down for a short period of time and then wake up feeling like I was done sleeping despite still being physically tired. I can get normal sleep now but an experiment I did the past year where I eliminated the idea of schedules showed it still takes ~5-6 extra hours of being awake to build enough sleepiness or sleep pressure I fall completely asleep as soon as I go to bed. Trying to sleep on a 24hr schedule results in 4+ hours of shallow sleep with awakenings before I actually get worthwhile sleep or I'd mostly skip sleep for a night to be tired enough to sleep normally the next night or 2 and do it again. I also have daytime cfs/me type symptoms even after those nights I do mostly sleep well.

Malfunctions with the dopamine system is one of the first theories researchers started investigating as a contributor to the symptoms of disorders such as cfs or fibro. Like adrenaline it works to block pain sensations during traumatic or severe injury. Normal function of this group of neurotransmitters (catecholamines) is also important for every day nerve signals to be interpreted correctly and to maintain day/night wakefulness vs sleeping.

Dopamine and consistent energy production was my previous main targets to improve my sleep and reduce my daytime symptoms as much as I have so far. 6-15mins of rem a night has become an average of 1-2hrs a night over the past year according to my oura ring and less than 6hrs a night has become uncommon.

For the past few years I've found racetams and dopamine increasing substances such as l-dopa (mucuna puriens) or trace amines to be some of the most useful otc options for chronic pain doctors can't see a reason for, daytime brain fog and fatigue, and ultimately improving sleep. Unless you have adhd they can interfere with sleep if taken too close to bed but help to build sleep pressure during the day and may reduce pain so you sleep easier, longer, and more predictably.

Some other things I take that may be useful for insomnia related to these types of chronic health problems is sublingual or liposomal glutathione, b vitamins, vitamin d3, and magnesium.

A somewhat newer leading theory into causes of difficult to treat insomnia is that immune system related problems can impact the feeling of needing to sleep or being awake. Inflammatory problems have been suspected by some researchers and doctors dealing with poorly understood chronic disorders such as fibro, cfs, or ongoing symptoms after lyme disease treatment to be a major contributor in causing insomnia that does not respond to typical treatments. Some more recent studies have been done into a relationship between chronic pain or fatigue disorders and the body attacking normally dormant, harmless viruses we tend to pick up in childhood and never fully get rid of. Symptoms are thought to be the result of the typical collateral damage that happens when the immune system reacts to something. The problem is that it can't eliminate the virus completely so symptoms never stop.

Immune system problems has been one of my leading theories to my insomnia the past few years and currently what I'm targeting . I haven't had enough success to really suggest much beyond attempt to research into immune related causes of fibro or insomnia and helper t cells. If nothing else this vid explaining immune responses and a couple related supplements might help you fall asleep

youtube.com/watch?v=2GjEh5i...(Not working as expected?)

Even if none of that helps then at least keep in mind you need to research and treat the cause rather than the symptom and insomnia is a symptom even if we don't understand all the causes. The typical insomnia solutions and sleep aids do very little to treat the cause in situations like this so while not completely useless they usually won't do much by themselves.

If you can't make other sleep habits work for you then I would still recommend at least using light therapy devices or direct morning sunlight exposure. Of all the suggested behaviors for sleep improvements consistent daytime light exposure and nighttime darkness is one of the strongest triggers for sleep. Food and temperature are probably the second most important things but the ideal timing of meals, quantity, and type of diet varies by person.

[Hidden in reply to kaliska0]

Wow, wow, wow! I mean you are thorough and you have been doing this research relentlessly. All the respect to you for your knowledge and sheer determination. Thank you for sharing it too. Way forward, I am going to get more exposure to sunlight. Keep an eye on how long summers days impact my sleep. I tend to eat at the same time in the evening. This was so helpful, kaliska0, Thank you.

[kaliska0]

While it's the cheaper option the downside of a mask is it's harder or even impossible for some people to get up at a specific time without light. I would not suggest a mask as a solution if you are first trying to use light to help fix poor sleep timing. I know I can wake up enough to get out of bed without light and I kept pulling a mask off while sleeping so I did start out using black out curtains. Then I got married and my husband kept turning off his alarm clock without even realizing it. He can't force himself awake enough to get out of bed without light prior to waking up.

I eventually did find a mask style I keep on most nights but a better idea for those who also want to keep the effect of morning light is to do the blackout curtains and then use a sunrise alarm clock. It releases a similar light spectrum to early morning light in increasing amounts starting from the time you set each day. You can make sunrise whenever you want including earlier on winter days.

My psychiatrist talked about one patient he had with sleep issues who absolutely could not get out of bed at a specific time and then was both missing work and failing to fall asleep at the right time. It was around 10 years ago before the convenient lighting options we have now. He ended up attaching a bunch of large metal halides (floodlight style lamps) over his bed on a timer so it was suddenly equal to middle of the day sunlight when he needed to get up. Apparently he finally quit missing work, finally managed to maintain a sleep schedule, and wasn't as reliant on coffee in the mornings.

Some people are fine getting light a short time after they wake up but some people really benefit from that light trigger sooner instead of getting a louder alarm clock. These days the options exist to easily adjust your morning to whenever you want without choosing between no light or whenever natural sunrise is.