REM sleep disorder

[Spoonielady]

Hello all, I'm new here! I have REM sleep disorder my gp believes. I've been falling or throwing myself out of bed a few times monthly whilst dreaming that I'm falling. I've become a danger to myself because this last time I broke my ribs and I'm in lots of pain. Has anyone else had this issue?

[Jkf1]

This seems to be rare and I'm so sorry for your pain. I do not have this, but if I were you I would try to read everything I could get my hands on and find a sleep specialist who works at a sleep clinic.

[kaliska0]

They didn't suggest a sleep study? That should be the first step. There are multiple possible causes. Mild seizure disorders are often first diagnosed from sleep disturbances, micro awakenings are brief changes to very light sleep in the middle of rem and can allow for movement while not being awake enough to be aware of it, lack of sleep paralysis during rem seems to be what your doctor is leaning toward, and there are also problems that occur outside of rem. Many of these things fall under what are called parasomnia disorders.

sleepfoundation.org/parasom...

A sleep study usually tests for seizure responses first and then measures brainwaves, respiration, heart rate, and movement during a normal night sleep to see if you are getting all the proper stages of sleep or not. They can usually at least determine if the problem is with the activity of your brain (e.g. staying in rem without interruptions) or if it's your body's response to sleep (e.g. not triggering sleep paralysis so you can't act out dreams). If a doctor did not suggest a sleep study for such a severe and unknown sleep disturbance I'd probably find another doctor.

Some basics of sleep and common sleep aids nootropicsexpert.com/best-n...

For further self research I'd probably look at extreme cases of restless leg syndrome as the most similar problem that is more commonly seen. "Night terrors" can also cause extreme physical responses during sleep like that but it's rare in adults and usually people would report obvious emotional distress instead of only physical injury when they wake up. Doctors would be most likely to assume nightmares due to stress or anxiety problems first if you are having night terrors instead of an issue with rem sleep. With it's rarity in adults it could be missed. It would definitely require a sleep study to diagnose or rule out night terrors. sleepfoundation.org/parasom...

As a non-medication/supplement suggestion maybe try a weighted blanket. They can have mental effects as well as physical and may improve your sleep while helping you remain still. It's a simple, safe thing to try but they can be a little expensive. Best to get one with a duvet cover that can be washed instead of the blanket itself due to the risk of melting the beads with any heat, long drying times without heat, and risk of even tiny amounts of wear causing itty bitty beads to leak out all over the place. Until my joint problems worsened I quite liked my weighted blanket for sleep improvements.

I would highly suggest finding a helpful doctor if possible that will do more testing and is willing to attempt a wide range of treatments until successful but if doctors prove less than useful, as they often do for sleep issues, or take a long time to attempt to help while you continue to risk injury then my main suggestion on such little info would be to take glycine. Glycine has shown in studies to increase the effects of sleep paralysis and potentially deepen sleep or improve rem. Generally most useful and easily taken as magnesium glycinate and most studies use the mag gly bound form. Magnesium is a useful muscle relaxant as well as also tending to encourage deeper stages of sleep and reduce micro awakenings that could be responsible. Mag gly is quite safe with GI upset or some daytime sleepiness being the only side effects usually seen. It is extremely unlikely to make the situation any worse while possibly helping and often having general health benefits instead of risks.

The most commonly recommended dose of mag gly for sleeping problems is 2-3grams with some taking around 5grams but it should be started much lower to reduce the odds of temporary minor side effects and test your reaction. I'd start around 500mg if you don't have other health issues. If you don't notice any side effects or worsening of symptoms then raise it every few days until you notice benefits or reach around 2-3grams and give it a few weeks to see if it improves things. If you experience side effects like diarrhea or difficulty getting up in the morning then stay below that dose at least until your body has some time to adjust. Beyond 5 grams of mag gly has not been tested for safety in studies.

I can't think of anything else otc that has as high of odds of reducing symptoms with as low of risks. Other options will take more trial and error with a wider range of potential side effects but I can think of a few that are considered low risk.

L-theanine would be among the least likely to have side effects or potentially make things worse but has low odds of being helpful. It has a calming effect on the nervous system and is most often used to counter the negative effects of coffee. It is naturally found in higher concentrations in most teas, which is one reason caffeine from tea frequently has less side effects than other sources of caffeine. It is also taken for anxiety and stress related sleep problems.

Gaba based supplements or medications might help. Most prescription sleep aids including benzos, ambien, lunesta, etc... work by increasing or mimicking the effect of gaba. Along with more direct gaba supplements valerian root mildly increases gaba and is usually easy to get in most countries. Gaba doesn't always have the same effect on sleep quality in everyone so it has some potential to make the problem worse but it could also be a partial solution. Impossible to say. Increasing gaba has much higher odds of causing daytime drowsiness than mag gly but otherwise non-prescription options usually have very low side effect risk. The one supplement in this group I do not recommend attempting is phenibut due to being an exception with a higher side effect rate and often very severe withdrawal problems when attempting to stop taking it.

Sometimes mild dopamine enhancing supplements can have a similar effect to meds for restless leg syndrome and might reduce movement at night. Mucuna pruriens or l-tyrosine (can cause headaches) are the most common and basic ones out there. Daytime dopamine levels need to drop for sleep though and unless you have something like ADHD it is easy to give yourself insomnia with dopamine supplements. Even during the day dopamine supplements can trigger anxiety in some or a feeling similar to excessive caffeine. If you attempt supplements like this test a low dose during the day first to see how sensitive you are.

Racetams are complete wildcards that can be worth trying for odd symptoms that don't have a well known effective treatment. While some specific effects have been observed with racetams much of why they work, why some people don't have a reaction to them, and when they will have a certain effect remains unknown. In some people they simply do nothing and in others they have profound effects that have improved a very wide variety of issues. In the countless studies involving racetams they have at least partially healed traumatic brain injuries, improved memory and mental function in those with dementia disorders, countered chemical induced amnesia, restored sensitivity to hormones or neurotransmitters after drug abuse, helped protect the brain from damage by other medications or toxins, reduced anxiety, improved sleep quality, improved alertness during the day, and increased all measure of cognitive function (memory, reflexes, planning....).

Overall side effects are low and the most common risks are mild headaches or minor mood changes that could really be anything from restlessness to drowsiness or low motivation to a sudden desire to finish every pending task. If you test one out do it on a day you aren't required to do something specific just in case it has the opposite effect of what you need at that moment. Luckily their unpredictability is also minor and short lasting with no negative long term or toxic effects in studies so they are overall safe to try and go away quickly if you don't like their effect. Any more serious problems are usually the result of depleting choline levels in the body after several days of repeated use. They are generally always taken with some form of choline supplement to avoid that.

The problem with racetams is whether they'll help a given situation or not is always hard to say and especially with something this extreme and unknown. Some racetams like coluracetam can be stimulating and definitely bad to take at night. Aniracetam or fasoracetam are most often used for anxiety or sleep issues but while they help some sleep they keep others awake if taken immediately before bed. Oxiracetam is fairly neutral for mood and any alerting or sedating effects as well as being one of the most well studied for safety and cheapest of racetams.

Sometimes even when racetams taken at night make things worse they can still be beneficial. Taking a racetam during the day can have positive effects on the brain that then help night time symptoms. I take coluracetam in the morning and fasoracetam late afternoon partially for ADHD symptoms and partially for improved sleep quality I get later that night but I can't take any too late in the evening.

yourinception.com/ultimate-...

conductscience.com/maze/noo...

gll-getalife.com/get-ripped...

onyxdefiant.com/nootropic-b...

Noopept is a unique racetam related substance that seems to work slightly different from the typical racetam groups. It is among those cognitive enhancers that are sometimes used for anxiety or sleep disorders.

wholisticresearch.com/noope...

While commonly recommended for sleep related problems I would be extra cautious in this situation with anything that mostly works by increasing serotonin or melatonin since these can sometimes increase rem issues. In some cases they may help improve sleep quality but usually they are better for sleep quantity problems (not falling or staying asleep) or circadian rhythm disorders (unable to sleep during typical nighttime hours) than problems that occur during sleep.

For the most part people and doctors included concentrate on merely getting to sleep and staying asleep. They pay far less attention and know far less about things that occur after they sleep. Info on things like increasing the amount of rem or dealing with the various parasomnia disorders is a lot more difficult to find among the 1000s of suggestions for getting to sleep that are out there.

[Spoonielady in reply to kaliska0]

Thank you for the insightful information! I currently take magnesium glycinate before bedtime. It does help alongside meditation and breathing exercises. I cannot take gaba because I am currently on pregabalin and have been for 9 years. I am tapering to half my dose but extremely slowly. It has taken me one year to only reduce it by half. In addition to falling out of bed I've also been biting my tongue for years causing big chunks of it with damage. I will look into seeing my gp in order to get referred onto a sleep specialist.

[kaliska0]

You can get tongue/dental protectors for sleep that aren't all that uncomfortable or noticeable these days. You have to do a bit of shopping around for the various options and shapes to find what works for you. I haven't had to actually use such products myself.

I was taking valerian root with gabapentin(very closely related to pregabalin) and benzos. Actually all 3 at once at one point. It does not have anywhere near the effect a prescription med for gaba does and works slightly differently. It actually made it easier to stop gabapentin by using the valerian root and then stopping the valerian root after I was off the gabapentin. It probably cut 6 months off the time it would have taken to stop gabapentin. Phenibut is very similar to gabapentin and pregabalin. Everyone I've talked to who has taken prescription gaba based meds and phenibut say it was many times worse to get off of. That's why I warn everyone not to fall into that trap despite how often it gets mentioned as effective. Gabapentinoid withdrawal can really suck for some people. Worse than benzos for me.

Even taking a source of the basic neurotransmitter with a med that enhances it is not always a problem. Not everything has the same issues as serotonin syndrome (actually most things don't) but it depends what it is. Gaba does not usually result in issues when combining meds with each other or with supplements like serotonin easily does. Partially because all the different gaba enhancers work a bit differently. Both gabapentin and pregabalin don't even alter neurotransmitter levels in the brain. They only impact gaba's effect in the central nervous system with a very limited effects. Benzos, other gaba based sleep aids, and most gaba supplements pretty much all aim to cross the blood brain barrier and alter levels of gaba or it's receptors within the brain but many target different receptors or do so in different ways. The lack of overlap in action and most overlaps being on the central nervous system instead of everything happening within the brain further reduces the risks when combining gaba altering substances. In my experience most doctors do not see a problem with basic gaba enhancing supplements and most gaba based medications but it would depend on the individual doctor and their knowledge level.

Finding doctors that actually understand the details and can help you with supplements as well as prescribe useful medication combos instead of one at a time can sometimes be difficult. Those doctors that have dealt with difficult to treat disorders are often quite willing to overlap effects in order to find a synergistic combination that does more than either med/supplement alone or reduce problems of one med by using a low dose of another. Doctors that don't understand the details of how the meds work and so can't predict the odds of negative interactions without it already being in some automatic interaction checker or handed a study confirming it for them are usually very uncomfortable with the idea.

[Spoonielady in reply to kaliska0]

Wow! You're very informative. I actually don't understand some of it and I'm a nurse. I honestly feel silly. Thank you so much again for your input.

[Spoonielady in reply to kaliska0]

Update. I believe I'm having seizures at night. I'm speaking with gp today.

[AKPTulsa]

I know I’m a bit late to this party, but I was questioning seizures as well based on what you’ve described. I’m a Registered Sleep Tech and have worked in Sleep Medicine for 13 years, so I’ve seen REM Behavior Disorder but it sounds like you’re experiencing much more movement than what is typical.

The tongue-biting is really what screams seizures to me. My mom began having seizures out of nowhere, and 3 out of the 4 she had occurred in her sleep, and one of those caused her to fall out of bed.

I hope you’ve been able to see your doctor since you last posted. I would HIGHLY suggest a sleep study from an AASM accredited sleep lab. Even if you don’t have a seizure during the study, they can find out if you’re having sleep apnea or oxygen desaturations which can cause seizures if not treated.

Sending good vibes and hope you’re able to get things figured out!!

[Spoonielady]

Since my last post, I haven't had an incident. I just went to the dentist a couple of days ago and I have developed a severe ulcer on my tongue from biting it in my sleep. I did call my gp but they still won't see anyone face to face yet. They had me talk to a nurse instead. She insisted that I had parasomnia. Huh?? I've literally been throwing myself out of bed several times over the last 7 years and nearly bit my tongue in half multiple times. I've been taking pregabalin (lyrica) but over the last year I've been tapering off slowly so maybe that has something to do with all this since it affects new receptors in the brain. I have stopped tapering about 4 months ago though. My dentist is making me a mouth guard to protect my tongue at least. I miss my American healthcare. I love the NHS healthcare workers but the government has made it impossible to deal with. BTW your name on here includes Tulsa. I'm from Oklahoma and lived and worked in Tulsa for awhile. Is that where you're from? Just curious and thank you for the response!

[janet12]

Hi I have had the same problems fell out of bed quite a few times injuring myself it's scary I frightened my granddaughter last time shouting out I haven't been diagnosed with anything

[Spoonielady in reply to janet12]

You wouldn't happen to be taking pregabalin (Lyrica) or gabapentin would you? I'm so sorry this is happening to you and I hope you are well.

[janet12 in reply to Spoonielady]

No I don't take any of that medication I went a while without them and now started again don't know what triggers them?