its all about getting to sleep!!

feeling the need to post again to the longer termers than me who have the wisdom, any help appreciated - I sleep once every two days not one - it's weird, un-natural and probably not a poster boy ad for "successful CPAP therapy"

on CPAP now a good year, Quattro FFM, icon machine , minimum 9 or 10 , max 20, auto. Humidity 4, can be 6 if I'm dehydrated

anatomically my nose isn't always clear, using nanonex nightly to clear it, antihistamine nightly, can use decongestants if really bad. Had a operation which was good in as much as it forced my hand towards CPAP -the tonsils went out but what happened was the uvula healed too low- the snore which was making me 50% all the time previously , after the op completely forced me to use CPAP - the uvula is like a Gatling gun machining its way against my enormous Gene Simmons tongue and overcrowded mouth.

Despite this CPAP has been an overwhelmingly positive life saver to me, I only come on here asking for help occasionally as it is so good. Now is one of these times.

I'm in a 2 day rut. I sleep great for a day, then I have a hell night. It's sunday I hope tomorrow at work is good because last night was my hell night. my self diagnosis is my body needs to be tired enough to shut down with quite some force, over riding all emotion, all fear and all apprehension. So I'm very tired today typing this -but I'll stay awake until night time and my odds are then very good I have a great night. Even if this is as good as CPAP gets it is already 50% better than before!

but tomorrow I'm possibly in line for hell again. This is because I'm not tired enough for this massive shut down reflex. I've been working all day in a stressful office, this increases my hypnic jerks -and for me it is all about the onset of sleep and then the fear feedback loop leading to zero to four hours sleep - this loop then going into a positive loop forcing me to sleep the next night. I'm running a 48 hour clock , this is not natural and it has to stop!
-----------
night 1: When I drift off, I jerk awake, I am not sure if it's hypnic jerk or a snore wasn't aware of bringing me to the point where I wake up and jerk. It can be violent. Adrenaline fills me, then fear and dread fills me, this will go on all night won't it......and it does.....and I'm the walking dead at work (note - I simply do not "get " how I'm waking up all the time on CPAP - I got onto CPAP to stop waking up all the time!!!)

night 2: I get in shattered I force myself through my chores, I'm positive even though exhausted because I know tonight I may get one or two jerks then I'm out whether my mind likes it or not, the sheer intensity of sleep will overcome me and once asleep I get deep refreshing awesome sleep because I'm hooked up to the CPAP and it does its thing. I wake up ready to take on the world. As the day fades I feel accomplished, I know I am about to face night 1 again..
---------

and this is the feedback loop I've been in for the last month- it's not normal and it's starting to cause me deep distress. What my body is effectively doing in response to this therapy is throwing itself out to sleep once every TWO days. This makes me angry as well as all the rest of the mix of emotions just before a night 1. Why on earth can my body not just accept therapy, why must it make what is completely easy on night 2 into such a marathon on night one, this is as bad as teenage self abuse, it's completely ridiculous, why would I put myself through this when I get a reminder every 48 hours that CPAP is my friend

anyone been there, if so any suggestions?

Cheers
Andy

Andy,

That sound horrible.
So, to get started, let's see if we can get some basic stuff.
1. Do you have a copy of your sleep studies and prescription. They will have dat that may shed some light on your awakening episodes. They're good to have any way.

2. Are you on any meds at all? Especially ones to help keep you awake during the day. Even OTC meds. There may be some adverse effects or interaction going on.

3. Have you discussed these symptoms with your PCP and/or neurologist? There may be something else going on than the usual sleep apnea stuff. Do you have any blood pressure issues?

Your sleep hygiene doesn't sound too good. Here are some links to some pointers on sleep hygiene.

Links for information about Sleep Hygiene
Info on Sleep Hygiene
Sleep Hygiene Recommendations
Sleep Hygiene Tips

With more information others may be able to be more helpful.

Exercise helps drain stress hormones but not near bed time. Do it when you get home from work, really work up a sweat.

Knit - knitting or other repetitive activity with the hands that needs some focus is very beneficial some what like meditation.

JDS74 wrote:Andy,

That sound horrible.
So, to get started, let's see if we can get some basic stuff.
1. Do you have a copy of your sleep studies and prescription. They will have dat that may shed some light on your awakening episodes. They're good to have any way.

2. Are you on any meds at all? Especially ones to help keep you awake during the day. Even OTC meds. There may be some adverse effects or interaction going on.

3. Have you discussed these symptoms with your PCP and/or neurologist? There may be something else going on than the usual sleep apnea stuff. Do you have any blood pressure issues?

Your sleep hygiene doesn't sound too good. Here are some links to some pointers on sleep hygiene.

Links for information about Sleep Hygiene
Info on Sleep Hygiene
Sleep Hygiene Recommendations
Sleep Hygiene Tips

With more information others may be able to be more helpful.

1. no sorry - I don't - the sleep studies I have had didn't pick up anything too much out of the ordinary yet with CPAP I feel a lot better, I think that what's happening is that the sleep studies are not factoring in the hypnic jerks

2. yes, amitriptyline - 10mg - it works on night 2, it doesn't work on night 1 - probably not enough for night 1

3. am about to discuss as have booked appointment as sick of feeling lousy. no blood pressure issues, I'm a fitness guy I run several km a week and do martial arts, my resting heart rate is sub 60, I should be sorted but I'm not!

- and my sleep hygiene is actually off the scale good because (as you will probably gather from post one) I'm one to look at every angle and try and work things out. So the room doesn't have a window it has a shutter, the covers change with the seasons, I've done it out with insulation for the winter, I never go online late, I don't eat late, I've just started magnesium/calcium supplement, I get up and go to bed at regular time, I have all clocks facing the wall, I have one cup of coffee in the morning then that's it strict no caffeine rule, I drink loads of water, I've got a no alcohol policy for work nights, I don't go near bright lights late, I try and wind down to doing nothing at least an hour before bed.....I've event got sansiveria plants that produce oxygen at night unlike most plants... I've written the book,I have the tshirt - but there's obviously something very serious that I'm missing - hopefully the doctor will help me, my theory at present is that there's this second issue, hypnic jerks, which may need some further medication, but not relaxing medication, or the apnea is back!

andy5805 wrote:night 1: When I drift off, I jerk awake, I am not sure if it's hypnic jerk or a snore wasn't aware of bringing me to the point where I wake up and jerk. It can be violent.

Do you have software that reports the wave form? If you do, when you jerk awake reach over immediately and turn the machine off. Then turn it back on and go to sleep.

The next day you can look at the waveform just before the point you see the machine turned off. This will give you a clear indication of whether it is breathing events that are causing your problem.

I'm a fitness guy I run several km a week and do martial arts, my resting heart rate is sub 60

Are you checking your RHR regularly? Do you check it the mornings after a "bad" night?

You seem like a hard-driven personality. It's very common to overtrain. Overtraining does damage to health and makes restful sleep less likely. You might want to review what you are doing and then back off.

Is there any reason to suspect those hypnic jerks you mention could be more - like PLMD? Your mention of being exhausted being your best sleep reminded me of how when I am thoroughly spent I am more likely to be able to fall asleep before the limb movements kick in and sleep through them. But when I'm not overly tired, I know better than to try to go to bed with first addressing the leg issue.

Also, if you do choose to turn the machine off and back on to look for precursors to the wakeups by the data, consider that if you wake up several times a night, you'll want to either turn the ramp off or cut the time down so you don't end up spending so much of your night in ramp, which is ineffective for therapy. I did use this method for a while to examine if anything about my breathing was causing the wakeups.

Sounds like you are very self aware. It's a miserable experience when your torture is predictable. You don't only suffer with the experience but also in the anticipation. Sure hope you find a solution soon.

andy5805 wrote:feeling the need to post again to the longer termers than me who have the wisdom, any help appreciated - I sleep once every two days not one - it's weird, un-natural and probably not a poster boy ad for "successful CPAP therapy"

on CPAP now a good year, Quattro FFM, icon machine , minimum 9 or 10 , max 20, auto. Humidity 4, can be 6 if I'm dehydrated

anatomically my nose isn't always clear, using nanonex nightly to clear it, antihistamine nightly, can use decongestants if really bad. Had a operation which was good in as much as it forced my hand towards CPAP -the tonsils went out but what happened was the uvula healed too low- the snore which was making me 50% all the time previously , after the op completely forced me to use CPAP - the uvula is like a Gatling gun machining its way against my enormous Gene Simmons tongue and overcrowded mouth.

Despite this CPAP has been an overwhelmingly positive life saver to me, I only come on here asking for help occasionally as it is so good. Now is one of these times.

I'm in a 2 day rut. I sleep great for a day, then I have a hell night. It's sunday I hope tomorrow at work is good because last night was my hell night. my self diagnosis is my body needs to be tired enough to shut down with quite some force, over riding all emotion, all fear and all apprehension. So I'm very tired today typing this -but I'll stay awake until night time and my odds are then very good I have a great night. Even if this is as good as CPAP gets it is already 50% better than before!

but tomorrow I'm possibly in line for hell again. This is because I'm not tired enough for this massive shut down reflex. I've been working all day in a stressful office, this increases my hypnic jerks -and for me it is all about the onset of sleep and then the fear feedback loop leading to zero to four hours sleep - this loop then going into a positive loop forcing me to sleep the next night. I'm running a 48 hour clock , this is not natural and it has to stop!
-----------
night 1: When I drift off, I jerk awake, I am not sure if it's hypnic jerk or a snore wasn't aware of bringing me to the point where I wake up and jerk. It can be violent. Adrenaline fills me, then fear and dread fills me, this will go on all night won't it......and it does.....and I'm the walking dead at work (note - I simply do not "get " how I'm waking up all the time on CPAP - I got onto CPAP to stop waking up all the time!!!)

night 2: I get in shattered I force myself through my chores, I'm positive even though exhausted because I know tonight I may get one or two jerks then I'm out whether my mind likes it or not, the sheer intensity of sleep will overcome me and once asleep I get deep refreshing awesome sleep because I'm hooked up to the CPAP and it does its thing. I wake up ready to take on the world. As the day fades I feel accomplished, I know I am about to face night 1 again..
---------

and this is the feedback loop I've been in for the last month- it's not normal and it's starting to cause me deep distress. What my body is effectively doing in response to this therapy is throwing itself out to sleep once every TWO days. This makes me angry as well as all the rest of the mix of emotions just before a night 1. Why on earth can my body not just accept therapy, why must it make what is completely easy on night 2 into such a marathon on night one, this is as bad as teenage self abuse, it's completely ridiculous, why would I put myself through this when I get a reminder every 48 hours that CPAP is my friend

anyone been there, if so any suggestions?

Cheers
Andy

How about trying straight pressure......CPAP mode?

Are you able to monitor your therapy with software? I've not been aware that the software for those machines is all that readily available, that's why I'm asking.

Maybe experimenting with lowering the humidifier setting, too.


Den

.

In your OP you mention using an antihistamine in addition to the amitryptiline.
Could this be Benadryl?

Any other meds, OTC products?

Amitryptiline and Benadryl interact adversely. You might check with your pharmacist about drug interactions including all OTC products you might be using. It would be good to have that done before seeing your doc on this issue.

I feel it important to come back here and post the solution - this forum by its nature is to some extent people get ill, you good people help them, then they go back into the real world again. I feel it is important that I return to say that I have fixed it so this post may help others. What I found was:

1. over use of nanonex - no I don't have AIDS, I'm a very healthy man - I was however doing nanonex twice nightly, while I had tonsils this over use over many months led to yeast infection (candidia) which I thought was focussed on the tonsils, now I have no tonsils, I figured safe to go crazy again on the nanonex - NOT SO. Same thing came back and literally began growing my throat closed

2. hypnic jerks were apnea full events - I know this because of my eureka moment the other night where I realised the pressure wasn't nearly enough, the pressure, formerly on 9 now needs to be 14..... then we'll see about hypnic jerks. I'm ready to go to work today and feel fine, in sharp contast to this time last week, my AHI is 0.9 !!

3. any idea of hypnic jerks I have now supplemented with magnesium/calcium (just in case this has bearing on candidia point 1)

TREATMENT

immediately stop naonex

TEMPORARY SOLUTION

14 on the old backward hairdryer as long as it takes , get in some hexachloro to sort my throat out, avoid too much sugar

PERM SOLUTION

after infection clears knock it down to 9 or wherever it was before I started growing plants in my neck



- don't underestimate the side effects of nanonex - it is great for the nose but can be at the expense of the mouth - especially if the nose after nanonex still isn't strong enough to breath without the mouth - then the mouth has to come in and because of possible infection, bang, there's the event. My average was 9 before nanonex, it is now 14 which I'm running with until my throat heals. THIS IS OVER 50% WORSE!!! not only that 14 is a ridiculously high setting, just goes to show you can have too much of a good thing!!

Thanks for all your help.
Cheers
Andy

Are you referring to Nasonex? Can't find Nanonex...

I used to use flonase (a different steroid than nasonex, but works similarly and has similar side effects).

Now, I find a single OTC loratadine (generic claritin) keeps me clear enough to breathe through my nose (with even fewer side effects). Your mileage may vary.

Great to hear you have some solutions!

andy5805 wrote:
yeast infection (candidia)

How do you know? Was this diagnosed by a doctor?

ChicagoGranny wrote:Great to hear you have some solutions!

andy5805 wrote:
yeast infection (candidia)

How do you know? Was this diagnosed by a doctor?

had it once before when it was diagnosed but I had tonsils then - he said over use of nanonex, I shoulda realised but thought having no tonsils meant I could go mad with it again - got some antifungal last time and it went away - done the same thing now, it's gone away - trust me I know!!!

andy5805 wrote:- he said over use of nanonex,

as nick danger asked, what is nanonex?

palerider wrote:

andy5805 wrote:- he said over use of nanonex,

as nick danger asked, what is nanonex?

A bottle of Nasonex so small it can't be seen with a high school laboratory microscope.

ChicagoGranny wrote:

palerider wrote:

andy5805 wrote:- he said over use of nanonex,

as nick danger asked, what is nanonex?

A bottle of Nasonex so small it can't be seen with a high school laboratory microscope.

well, I can see (hur hur) how that could cause all sorts of unexpected side effects!