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Does going to a sleep study REALLY help anyone?

aquariusgirl

Senior Member
Messages
1,732
i did one years ago...i think i had the PLMDs as well, but the follow up was crap. never got any decent sleep meds.

I *think* I sleep better after HBOT so the oxygen thing makes sense to me.

I also think that I am sleeping better now I am treating endotoxins 7 mycotoxins....
 
Messages
55
Location
London, UK
Have you found any other drugs or treatments that work?

No. Only the codeine (30mg) for the RLS and maybe the PLMS. I can't take the usual drugs for PLMS due to my heart condition. Basically nothing has ever worked for my sleep. If I take sleeping tablets absolutely nothing happens so I don't bother.
 

aquariusgirl

Senior Member
Messages
1,732
Doing hbot in the UK at a charity center.. MS therapy center... but can only take so much before it makes oxidative stress worse.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
Sleep studies are very important if you suspect you have a sleep disorder

Listen to your visceral because it is always right

I diagnosed myself with sleep apnea before any doctor was involved..

Now since that did nothing for my fatigue and daytime sleepiness

I have very strong feeling, I do not reach slow wave sleep..

And if you do not reach this VITAL body rebuilding stage of sleep

it will give you all the symptoms of CFS/ME.......

The older you get the worse your body will eventually deteriorate to nothingness..
 

physicsstudent13

Senior Member
Messages
611
Location
US
No. Only the codeine (30mg) for the RLS and maybe the PLMS. I can't take the usual drugs for PLMS due to my heart condition. Basically nothing has ever worked for my sleep. If I take sleeping tablets absolutely nothing happens so I don't bother.
is klonopin or gabapentin bad for the heart? yes I found nothing really works except ambien and klonopin and gabapentin
 

physicsstudent13

Senior Member
Messages
611
Location
US
Sleep studies are very important if you suspect you have a sleep disorder

Listen to your visceral because it is always right

I diagnosed myself with sleep apnea before any doctor was involved..

Now since that did nothing for my fatigue and daytime sleepiness

I have very strong feeling, I do not reach slow wave sleep..

And if you do not reach this VITAL body rebuilding stage of sleep

it will give you all the symptoms of CFS/ME.......

The older you get the worse your body will eventually deteriorate to nothingness..
Have you found any treatments or a cure?
Sleep apnea is a terrible disease, it destroys your brain, heart, liver and gives you diabetes and arrythmias, terrible fog and exhaustion. on studies they can record a night's worth of O2 levels and EEG readings and AHI, if your AHI is 30 or above that is severe
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
Sleep apnea scale is

15 arousal's per hour is mild

15-30 arousal's per hour is moderate

30 and over arousal's per hour is severe

My sleep study scaled out at 56! arousal's per hour
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
Have you found any treatments or a cure?
Sleep apnea is a terrible disease, it destroys your brain, heart, liver and gives you diabetes and arrythmias, terrible fog and exhaustion. on studies they can record a night's worth of O2 levels and EEG readings and AHI, if your AHI is 30 or above that is severe

There is no cure for CENTRAL sleep apnea which I have,

you only can manage it with bi pap or c pap

However if you have OBSTRUCTED sleep apnea you can cure it by either losing weight or surgery to open the airways..
 

physicsstudent13

Senior Member
Messages
611
Location
US
There is no cure for CENTRAL sleep apnea which I have,

you only can manage it with bi pap or c pap

However if you have OBSTRUCTED sleep apnea you can cure it by either losing weight or surgery to open the airways..
so you haven't found a cure? klonopin and gabapentin help centrals, I'm thinking of redoing my tracheotomy
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
Phys,

I'm on Gabapentin 900mg once a day in morning.

It helps my nausea a great deal (without it I have 24/7 365 days a year nausea
but for the rest of my autoimmune dysfunction symptoms not so much or so so..
Before I discovered Amitriptyline,Gabapentin gave me SUPER insomnia
So in combination, they sort of cancel each others major side effects out
I take max dose of Amitriptyline150mg 4 to 5 hours before desired sleep time
and it knocks me out big time,however I still awaken 3 - 5 times per night..
 
Messages
18
I had a sleep study done. They had zero suggestions for 21 arousals between 1030pm and 6am. They simply said you don't have a serious problem with sleep apnea. I'm pretty sure waking up 21 times is a bit much. I was not presently aware of 21 times, but I remembered waking up 6 times. So obviously there's something going on there, but nothing they could help me with.

I honestly just take a lot of stuff to make me sleep through the night.

Klonopin, Clonidine, Trazodone, GABA, L-Theanine, Melatonin sublingual

It's a handful, but personally i'd much rather take drugs and sleep than suffer through sleep deprivation.

I realize this post is a bit old, but I'm wondering how you found a doctor helpful enough to give you a cocktail like that. The reason I say this is bc this is what Dr. Teitelbaum recommends in his book, From Fatigued to Fantastic. I've recently been to a psychiatrist and he said he can give me ambien for a month and that's it. I can tell he's not open to hearing my ideas.

Do you go to a functional medicine doctor?

Aimee
 

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
I realize this post is a bit old, but I'm wondering how you found a doctor helpful enough to give you a cocktail like that. The reason I say this is bc this is what Dr. Teitelbaum recommends in his book, From Fatigued to Fantastic. I've recently been to a psychiatrist and he said he can give me ambien for a month and that's it. I can tell he's not open to hearing my ideas.

Do you go to a functional medicine doctor?

Aimee


Well, if you take out non pharmaceuticals you're looking at Klonopin, Clonidine, and Trazodone. Clonidine, if your blood pressure is high enough (not high, but in the normal range), I imagine is a pretty easy prescription to get. Trazodone is used a lot for sleep by psychiatrists. That and Seroquel. Benzodiazepines are where you'll have trouble getting a prescription out of what I've listed (and I'd only get them if the others don't work well enough together).

The others are all available OTC (well depending where you live).

And no this isn't from a functional medicine doctor. Just a psychiatrist.
 
Messages
18
I wouldn't mind trying trazodone again. It was many years ago that I had it. I'm in France and they tend to prescribe a lot of benzos, so recently they gave me noctinamide for sleep. And ambien. But they'll only give it to me for a month total.

I'm very interested in the sleep angle bc Dr Teitelbaum seems to think dysfunctional sleep is one of the root causes of ME/CFS. He says if you can get restorative sleep nightly for 6 to 9 months, you can recover. I don't know if that's true for everyone, but I definitely haven't had good quality sleep for many, many years.

I'm glad your combo is working for you!
 

john66

Senior Member
Messages
159
I think it is worthwhile to get a sleep study if you've never had one to find out if there are any serious problems I think doctors here in the United States go crazy with them because insurance companies cover them. Most of us already know that we have problematic sleep the real key is finding what will help solve the court issue. I have been to many sleep studies they all tell me the same thing: I wake up a lot. I do you sleep apnea machine or CPAP whatever you want to call it and I do take sleep medications I know there is a downside to them but not sleeping is not an option I want to explore any further. If we can figure out what causes the heightened state of arousal or hyper vigilance I think that is the key.
 

barbc56

Senior Member
Messages
3,657
Sleep is so intertwined with our illness. I was able to get off Trazodone once I started the CPAP. I still take klonepin for RLS as I can't take the medicine that is usually recommended.

One thing that's important is to have a physician, as well as the lab where you get the study, that's certified by the American College of Sleep Medicine or a similar certification in another country.

I have a friend who was told by her Primary Care Physician that she couldn't have sleep apnea as she wasn't overweight. Fortunately she went to a specialist on her own and it turned out she did indeed have OSA.

I had absolutely no idea I was waking 51 times per hour. I actually laughed when the doctor said he suspected OSA.

Barb
 

Sing

Senior Member
Messages
1,782
Location
New England
I never went through with the sleep study once I realized they seemed only oriented towards sleep apnea. That is the one problem they seem to recognize and treat. The light, sketchy, in and out sleep a lot of us have, or the other poor patterns which result in inadequate sleep--those didn't seem to count. So instead I just worked with my primary care doctor--a GP or Family Physician. Picking one who is sympathetic, respectful and willing to work with you to improve these symptoms is absolutely essential.

I avoid all the Z drugs, the hypnotics, as they have resulted in temporary amnesia the next day for me. I avoid anything or any amount which results in more brain fog as this is not worth it. Luckily I have a great combination of pills, however, which really work well now. Maybe I said this earlier in this thread, but they are 25 mg Trazodone, 1800 mg Gabapentin (starting in the late afternoon or early evening, as it also helps a lot with pain), and 1,000 mg of OTC Tryptophan. This last helps with pain as well as sleep.

I am thankful to have avoided psychiatrists every step of the way. Maybe they aren't all unhelpful, but I feel so strongly that what I have (most of us have) is a physical disease and not a mood disorder. Yes, it has a lot of neurological features, and I do see a Neurologist--mainly for the autonomic aspects. I refuse to get into the Depression category as I consider that the waste basket that we have been consigned to for so long--and once labelled that way, it can be hard to get out of.
 

fibrodude84

Senior Member
Messages
191
My doctor wants me to undergo a sleep study. I read there are some you can do at home and the electrodes send feedback to a lab? If those aren't good I may just need to go. The thing is, how accurate can they be when you are not at home in your normal enviromemt? Maybe your sleep is better or worse or you can't sleep at all.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
If you have high blood pressure, read that it can be caused by sleep apnea. So if you get that treated, perhaps you can get off blood pressure medicine? One less thing for us to take. Also, might be a good time to have oxygen supplemented to your body if you have sleep apnea. I was found to have Obstructive sleep apnea, brought the result to my good Dr, and he prescribed me oxygen. Perhaps that is why I have gotten better some?

GG
 

physicsstudent13

Senior Member
Messages
611
Location
US
Phys,

I'm on Gabapentin 900mg once a day in morning.

It helps my nausea a great deal (without it I have 24/7 365 days a year nausea
but for the rest of my autoimmune dysfunction symptoms not so much or so so..
Before I discovered Amitriptyline,Gabapentin gave me SUPER insomnia
So in combination, they sort of cancel each others major side effects out
I take max dose of Amitriptyline150mg 4 to 5 hours before desired sleep time
and it knocks me out big time,however I still awaken 3 - 5 times per night..
I'm taking klonopin+gabapentin and it's the combo that is really very effective. gabapentin+klonopin at 600mg and only 1mg klonopin, but I ran out so now I'm on diazepam 10mg.
Does amitirptyline help a lot in terms of getting deep restful sleep and good clarity and brain function? Basically sleep apnea is a terrible silent killer disease because your oxygen plummets and your brain and other organs are slowly destroyed. I still have problems speaking and remembering simple things now after 8 years of this

so basically I think you need something to reduce the central apneas like klonopin+ a drug to increase the stage 3 sleep like gabapentin.