Page 1 of 1

Sleep Study

PostPosted: January 4th, 2016, 4:47 pm
by PEZZA69

Seasoned veteran here twitching, tingling and tremoring for 11 years now. My main concern was Parkinson's was never really concerned with ALS although been paranoid about MS due to several eye issues.

Anyway been having problems sleeping recently so after much lots of persuasion my GP referred me for a sleep study at the Royal Brompton hospital in London. Very scary you are wired up to a PSG machine and breathing is measured all the while being watched on video. My main worry was a Rem sleep disorder and these are associated with several nasty conditions including dementia and parkingsons. Anyhow was finally diagnosed today with disordered breathing which causes arousuals during the night has anyone else been diagnosed with this?


Re: Sleep Study

PostPosted: January 5th, 2016, 7:25 pm
by Little Lost

I feel your anxiety over the PSG study. Glad it didn't turn up any of the real nasties. Did they say what the breathing disorder was, obstructive apnea, central apnea etc.

Resolution of muscle cramps and fasciculations with treatment of sleep apnea.
Reddy PL, Grewal RP.

J Clin Neuromuscul Dis. 2009 Sep;11(1):66-7. doi: 10.1097/CND.0b013e3181aede82

I was different however because I did have a nasty turn up on my PSG study. I had an isolated recording of " REM without Atonia". They stressed it was NOT REM sleep disorder. They feel mine is associated with some sort of narcolepsy, as it was on a background of severely disorganised sleep archetecture, with numerous arousals, my sleep was so fragmented but no explanation why as my breathing was fine.

Never the less I was worried about a possible association between the " loss of atonia" observation with all the nasty synucleinopathies. I know there is less evidence for such an association and it is usually only full blown REM sleep disorder ( of which atonia loss is just only one component). You are right in your post that the full disorder is linked to MSA, LBD, parkinsons etc.

Like you I am also in the UK, but because of my worry with noone to address it, I got specialist opinion from US ( from the guy who discovered REM sleep disorder and its association with neurodegeneration) .

He was brillant. They felt the emg recording during the night picked up was a few leg twitches in REM sleep so probably breakthrough fasciculations and extension of my BFS. They see this a lot in narcoleptics.

Interestingly he said that it is easy to spot loss of atonia if recorded in context of the complex motor movements seen in REM Sleep disorder ( shouting, jumping out of bed etc). However isolated REM Atonia loss on its own is harder to define.

He said that most PSG labs in UK are set up to detect apnea and often don't score, quantify or recognise isolated loss of REM atonia correctly. Only a few labs in Europe are at present involved in the global drive to define and reach consensous on creating a gold standard to score isolated REM without atonia.

Not sure how many electrodes you had on. My study had emg electrodes on my chin , one each bicept and on both TA muscles, but my sleep neurologist himself said it can still be hard to define from artefacts.. On top of this they said that my sleep cycles were all over the place so it was impossible to tell from the reading if it was true loss of atonia. I have never acted out dreams.

I was called back by the NHS sleep lab last month to clarify and under go a further 2 night PSG test, coupled to a daytime multi latency sleep test, and then be fitted with an activity meter for a further 2 days. They said my case was very unusual...... Told them I didn't want their tests....I will take narcolepsy and run I don't want anymore info.

However I wish that people are properly warned beforehand that PSGs HAVE the ability to throw up strong reliable early biomarkers of neurodegeneration. Certain problems develop in the brain so the electrical activity wont turn off like it should during sleep and these subtle malfunctions will be detected with PSGs...what may seem like a harmless sleep study can actually tell you your brain has started down an unstoppable path to dementia with a certainty nearing 90%. As there are no neuroprotective agents on the market you are given this info and then left.

So anyone considering a sleep study please please be careful and ask questions before blindly going on a PSG sleep study. I didn't and ended up with information I couldn't do anything with but worry. Although often they won't mention if they recorded isolated REM without Atonia unless you ask, they are duty bound to say if the PSG showed REM sleep disorder.


Re: Sleep Study

PostPosted: January 6th, 2016, 7:43 am
by leroyb
A lot of PALS have reported sleep problems years before being diagnosed. Imo at this stage it could possibly be treated as the neurodegenerative cascade is not in full swing yet. I would certainly be looking into improving diet to reduce inflammation and possibly even taking anti-inflammatories like ibuprofen daily and reducing stress as much as possible.

(I am not suggesting either of you have als btw)

Re: Sleep Study

PostPosted: January 6th, 2016, 3:03 pm
by Bibi
I wonder if a have a sleep disorder , i wake up from sweating every Night and sometimes i wake up from shouting . I eat Mirtazapine every Night ( antidepressant ) i Read something about REM sleep and MIRTSZAPINE but i dont quite understand if it courses The problems ( waking / shouting ) or is supposed to help . Does anyone here know something about it ?

Re: Sleep Study

PostPosted: January 6th, 2016, 3:40 pm
by leroyb
It really didn't agree with me Bibi and I had to come off it.

Re: Sleep Study

PostPosted: January 6th, 2016, 3:49 pm
by Bibi
leroyb wrote:It really didn't agree with me Bibi and I had to come off it.

What Was The problem ? One time i hade High blood sugar and my psykiatrist said that diabetes doctors wasnt happy about this medication . I want to come off but i am very anxious about my symptomes ( twitches , very dry mouth and throath issues and now pain and somekind weak hip )

Re: Sleep Study

PostPosted: January 6th, 2016, 8:23 pm
by Little Lost
Hi Leroyb

No don't worry about the suggestion that our sleep problems could be a start of ALS. What we were talking about was an observation called "Loss of Atonia in REM sleep". Basically in REM sleep you dream, so your muscles are automatically turned off so you don't physically act out dreams this is called Atonia, and on emg you have no spontaneous activity are in effect paralysed.

If at anytime you have breakthrough in this Atonia you have the ability to move and may act out your dreams, I.e. you lose the ability to suppress motor activity. This is seen in α-synucleinopathy family of neurodegenerative disorders like parkinsons, not often in the tauopathies which stuff like ALS and Alzheimer are members of.

Bibi. You are correct. Loss of REM Atonia and its association with selective serotonin reuptake inhibitors (SSRI) and selective norepinephrine reuptake inhibitor (SNRI) is well established. This is a drug side effect and NOTHING to do with neurodegeneration. So knock all worry like that out your head. It is because I have never had any of these drugs that mine showing on PSG was a worry.

So things known to cause loss of REM Atonia.

Use of antidepressant. ( side effect)
Stroke or other disorders causing brain lesions.
Isolated episope finding on PSG
Brain injury
Severe psychological trauma


Re: Sleep Study

PostPosted: January 7th, 2016, 5:11 am
by PEZZA69
Little Lost they didn't say just an umbrella term of "a sleep breathing disorder" and recommended using an CPAP mask. I suspect my deviated Septum is at the root of the issue as this has in effect blocked up one of my nostrils and also my tonsills are extremely large and prone to infection. I went into the sleep study completely aware of the risks and long term outcomes so it was a little different as this was in effect to test and diagnose "RSD". The consultant suspected it based on my described symptoms and in the morning when I spoke to the consultant who had only briefly looked at the results I got the strong impression that she still suspected RSD as she was asking questions about dreams and movements during the night, and wouldn't commit either way to the results. I feel a bit like complaining to them as this has completely ruined my Christmas as had the test on the 10th Dec and only got the results earlier this week nearly a whole month.

I am guessing that lots of people go with issues sleeping thinking it will be a simple mild fix only to diagnosed with RSD, and then be told 90% chance within 10 years or whatever the stats are. Anyway I am not sure if I believe the stats I read on lots of sleep related forums about people waking up with cuts from where there have been punching bed side cabinets during the night etc or kicking there partner and these are more often than night young people, teenagers. I suspect people only go to the doctors when it is really serious and these are the type of people that the stats are based on. I have read on one LBD website about her husband who is 82 just been diagnosed with Dementia who had been acting out his dreams his entire life ( married 18). Should we really burden people with this knowledge at 18 !!!! We are going to die off something.

Re: Sleep Study

PostPosted: January 7th, 2016, 9:13 pm
by Little Lost
Yes I agree. There is no doubt that there is a high incidence of REM sleep disorders in patients with neurodegenerative disease , however the reverse relationship i.e. RBD preceding LBD etc is not yet fully defined due to ascertainment bias. We still do not have reliable data on the prevalence of RBD or REM without Atonia in the general population. As you said only the extreme cases present and control subject numbers are low. Additionally it is becoming clear that there are other risk factors needed along with the RBD such as EEG slowing and olfactory dysfunction rendering people unable to distinguish certain odours, ( please dont go about seeing if you can still smell white spirits ), which taken together appear to make a more reliable biomarker.

You say your awakenings and sleep fragmentation is caused by your breathing. This also clearly signals away from RBD. You are getting interrupted breathing which in sequal is lifting you OUT of sleep perhaps even in the middle of dreaming. The important point is that you are physiologically AWAKE while you are moving. In RBD the difference is that you are still physiological FULLY ASLEEP when you are moving. It is your brain that cannot suppress the motor activity.

They probably saw you sitting up gasping during your study night but until they went over the data couldn't determine if you were in REM sleep at the time ( RBD) or had taken nocturnal panic action due to sudden drop in oxygen waking you (apnea etc).

Xmas must have been awful, all the thoughts going round. ( Been there last year). It is not an unreasonable worry as there is much in the literature about the associations. So it is certainly a totally justified reaction to be a bit upset by it. Not nice having the threat of possible RBD hanging over your head. Kind of like " Oh you might or might not have a disorder that predicts neurodegeneration and dementia with 90% certainty ....but hey you have a nice Xmas anyway and I will process your results in a few weeks or so...Jingle all the way."

Good that it turned out to be clear, but anxious wait.

Wonder if your fasciculations get better now you are on night oxygen ?