Does going to a sleep study REALLY help anyone?

[Beyond]

I will get one done soon. It has taken 5 months or more since it was prescribed. I don´t expect anything useful from the study bearing in mind the experiences of people, but my parents would get mad if I didn´t this stupid and useless test. I know perfectly that I have sleep problems because of melatonin defficiency, HPA/CNS dysregulation, intestinal inflammation and who knows more. My melatonin defficiency showed up in tests and not surprisingly melatonin sublingual is the only supp that has made a dent in my insomnia.

I only expect to sleep horrible, if I sleep some, and to have an awful day after the "study". Even if I managed to sleep through, they would only see that I wake up 4-6 times per night or more, but would be clueless of the cause. Oh Medicine, often you are not very upstanding.

Oh yeah re melatonin and depression. It is confirmed in some studies and empirically by people that it does enhance depression. It does so for me, BUT sleeping shittier makes me wayyyy more depressed so I can handle it.

 

[physicsstudent13]

I have severe sleep apnea and it can significantly exhaust you and cause heart disease and memory cognition problems. maybe mitirzapine is too broad in effect and for a sleep drug and gives me general fog like benadryl, I've tried trazodone, but it doesn't seem to do much, only klonopin or ambien helps me at 0.5-1mg before bed, (10mg). they are both gaba alpha drugs

 

[Insomniac]

I recently wrote of going to a sleep doctor. He gave me an actigraph that looks like a backward old fashioned version of this:
http://www.endeavortherapy.com/actigraphy.php

You are supposed to wear it for 2 weeks and write exactly when you slept, how many times you woke up and when you closed the lights etc. I have done this.

The results: They say my patterns "look like" non 24 hour sleep wake. My sleep patterns are not organised. I wake up many times.

Doc wrote frequent wake ups are probably from psycological factors. That man only saw me for 10 minutes. He just looked at "fibromyalgia", "CFS" and "seroxat" and "depression". It's impossible to take those off my medical history.

Basically the results tell me what I already told him about my sleep.

I don't know whether to continue. I could do with a serious diagnosis of something on my chart. On the other hand I hate this sleep doc.

I so hate this illness and the stigma of mental illnesss on it.

I searched and saw there seem to be no writing of wearing actigraphs specifically for sleep on this forum. It is odd that that I am the only one who did this test. It is supposed to be a staple of sleep labs and sleep docs.

 

[maddietod]

I don't think anybody knows why some of us wake up all night long. But now that you've got this doctor, the question is will he give you meds to try?

 

[physicsstudent13]

if anyone finds a cure or treatment please private message me and let me know!!!

 

[Beyond]

Nah, post it publicly, everyone wants to get some decent sleep at last.

 

[Griffin]

I've been to sleep clinic a few times.

The first was in the 1990's at Papworth near Cambridge (UK) . Thy were incredibly thorough. We wired up but on a very long leed and so could walk around the room. This is ho they founf I sleepwalk. They could also unclip you to go to the toillet if needed. They filmed the whole period and then sat us down to explain what they'd found, so for me big jerks of my legs every few minutes bringing me up from deep sleep to almost waking. So I saw myself on video doing all sorts of stuff while "asleep". They did alot of tests oon computers too, like seeing how rapid the responces were. They weren;t interested in delayed sleep. They prescribed meds fot the leg jerks, but it clashed with other drugs so i never took any.

Sleep clinic 2, beibg driven even madder through bad sleep. Several years later. same place. Papworth. Different consultant running . I was really shocked at the huge deteriorations in the standards.No long leeds -the leed barely lonh enough to stand beside the bed if not in it. No way to show sleepwalking. They wired up less of the brain. They didn't stay and watch the filming in real time, and I don't know how they could have checked through a whole night sleep period to be ready to report to the patient before they left. No computer tests. To tell the truth compared to the earlier clinic standards and investugatons it was a shambles and I think it would be very easy to miss symptoms. It had clearly suffered a huge budget cut.

 

[Insomniac]

I finished my time with the sleep doctor.
Diagnosis - non wake 24 hour with delayed circadium rythm disorder - he was unsure of the diagnosis.

Treatment - Ambien with melatonin. (Done them before)
Also To try Gabapenten, Lyrica and possibly trazadone - those help sleep. , if I my GP will allow them.

He said it was not worth sleeping in the clinic the night.

 

[Griffin]

sorry redrachel
Nothing makes me sleep except taking too many sleeping tablets. I've tried every prescription drug that exists and is supposed to make you sleep - nothing ever happens.I am sure my "clock" is broken.

 

[jann1033]

Has a sleep clinic actually helped anyone?[/quote]
I recently had One dine and at first I felt waste if time. However when I saw the Dr, he was great. In mine they check sleep architecture as well( I have no stage 3 and little rem). He did recommend a cpap for me cause i don't have apnea but hyponea(186 times in 5 hrs). Since I don't have sleepiness, he said it isn't as dramatic of improvement with fatigue but anything that helps is a bonus IMO. He was great too about CFS, felt the 0/low rem 3 was probably due to it etc. So remains to be seen how much it helps but I'm glad I did it now
There are different types of apnea too. My neck isn't large enough to be considered too large but my jaw is small and my throat is .(could have fooled me since normally i am accused of having a big mouth Lol) but there is also central which when I read it, actually sounds more like me so guess time will tell.

 

[Beyond]

Crap, now I can speak from experience. It did not help me... But the doctor seemed pretty incompetent, he just told me that I have inefficient sleep and sleep onset problems and that means depression in his opinion. Cognitive Behaviour Therapy is anathema!!

 

[jann1033]

The other thing us you shouldn't really take stuff to make you sleep if you have sleep apnea( I forgot which Dr told me that, this one or the goofy rheumatologist so could be. wrong) since the point in waking up is to start breathing so probably wouldn't hurt to rule apnea out at any rate

 

[physicsstudent13]

I finished my time with the sleep doctor.
Diagnosis - non wake 24 hour with delayed circadium rythm disorder - he was unsure of the diagnosis.

Treatment - Ambien with melatonin. (Done them before)
Also To try Gabapenten, Lyrica and possibly trazadone - those help sleep. , if I my GP will allow them.

He said it was not worth sleeping in the clinic the night.

Has anyone tried prazosin or tiagabine?
It is really a terrible crippling disease. I'm on gabapentin also now it seems to deepen my sleep with klonopin and the machine and klonopin is supposed to help the leg jerks or PLMD which are like seizures.

 

[heapsreal]

Crap, now I can speak from experience. It did not help me... But the doctor seemed pretty incompetent, he just told me that I have inefficient sleep and sleep onset problems and that means depression in his opinion. Cognitive Behaviour Therapy is anathema!!

When they dont not whats going on they rely on their old faithful diagnosis, depression. Its just crap.
I wish they would invent or bring to market some new meds??

 

[heapsreal]

Has anyone tried prazosin or tiagabine?
It is really a terrible crippling disease. I'm on gabapentin also now it seems to deepen my sleep with klonopin and the machine and klonopin is supposed to help the leg jerks or PLMD which are like seizures.

Tiagabine, is that also called gabitril? gabitril looks interesting on paper as its a gaba reuptake inhibitor. I wouldnt mind trying it but my doc didnt know much about it??

 

[physicsstudent13]

we should really post everything we know on here since this is a terrible incurable disease. somehow klonopin modulates allosterically the gaba alpha receptor. I can't remember oh ambien also works but not as well for me I think it's because the duration is shorter. I have to take the klonopin every time I take a nap even or the sleep somehow damages me
sleep apnea is a crippling disease DTI MRI shows that the brain develops damage and tangles from sleep apnea and arrythmias. I tried tracheotomy and had some clarity afterwards.

 

[xks201]

How does one try a tracheotomy? Lol

we should really post everything we know on here since this is a terrible incurable disease. somehow klonopin modulates allosterically the gaba alpha receptor. I can't remember oh ambien also works but not as well for me I think it's because the duration is shorter. I have to take the klonopin every time I take a nap even or the sleep somehow damages me
sleep apnea is a crippling disease DTI MRI shows that the brain develops damage and tangles from sleep apnea and arrythmias. I tried tracheotomy and had some clarity afterwards.

 

[physicsstudent13]

has anyone else tried tracheotomy and had clarity afterwards? There is a book Deadly Sleep by a professor of neurology Dr. Mack Jones about tracheotomy treatment for sleep apnea

 

[Griffin]

I have three sleep disorders. Delayed Sleep Phase Disorder (DSPD), Periodic Limb Movement in Sleep (PLMS) (I guess the same as PLMD mentioned above) and sleep walking. I take Codeine for the PLMS (not sure if it works as I asleep ) - it works for my RLS. I can't take any other treatment for this so it was amazing when a doctor told me this was the old-fashioned remedy.

I have had two sleep studies at sleep clinic in Papworth Hospital (UK). The first was in the 90's and was very detailed and they literally watched me all night as well as recoding it all. They gave me a very detailed explanation of everything. It was very odd seeing the video of me sleep walking as I had no idea I do it.. They couldn't actually do anything to help me, but I did feel they'd done their very best for me.

The second was a few years ago, after I developed ME and my sleep delay got so much worse I now have total sleep reversal. Again at Papworth, but the original research team had been replaced. The overnight assessment was much less rigorous, no one stayed around whille the recordings were being taken. They had done away with the very long cable that allowed one to sleep walk and replaced it with a short cable that meant you could hardly turn over let alone get out of bed. Afterwards they didn't show me any of the recordings or tell me anything except I had PLMS. They had no solutions so they told me to try sleep hygeine and I lost my temper and shouted at them. As if anyone would take all the effort of going to a sleep clinic without having tried and failed at sleep hygeine. I was so cross and when I said I'd already tried that, they told me I was being unco-operative and were actually quite rude to me. It was all a very unpleasant experience which left me very distressed.

So, if you can find a clinical team like the first one I had, it may be worth it. But beware incompetent sleep clinicss!

 

[physicsstudent13]

I have three sleep disorders. Delayed Sleep Phase Disorder (DSPD), Periodic Limb Movement in Sleep (PLMS) (I guess the same as PLMD mentioned above) and sleep walking. I take Codeine for the PLMS (not sure if it works as I asleep ) - it works for my RLS. I can't take any other treatment for this so it was amazing when a doctor told me this was the old-fashioned remedy.
I have had two sleep studies at sleep clinic in Papworth Hospital (UK). The first was in the 90's and was very detailed and they literally watched me all night as well as recoding it all. They gave me a very detailed explanation of everything. It was very odd seeing the video of me sleep walking as I had no idea I do it.. They couldn't actually do anything to help me, but I did feel they'd done their very best for me.
So, if you can find a clinical team like the first one I had, it may be worth it. But beware incompetent sleep clinicss!

Have you found any other drugs or treatments that work?

I have central apnea, obstructive apnea and PLMS too now for over 7 years and the brain fog, memory damage, diabetes and exhaustion are just terrible. I take klonopin for centrals and PLMS which works very well but eventually it will lose its effectiveness it seems. Sleep studies are great, they diagnose sleep apnea.