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CPAP/APAP machine helped any cfsers??

heapsreal

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10,079
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australia (brisbane)
I saw a neurologist recently for ongoing headaches after being advised by the hospital at the start of the year when I was hospitalised for a 4 day headache with vomiting spell.

I've had several different investigations done and sleep study done showing OSA/obstructive sleep apnea. I'm not fully convinced it's the only cause. Before seeing the neurologist I did the sleep study authorised through my GP and did a 2 week APAP machine trial. It didn't go well and I felt worse.

And, my neurologist wants me to get back on the sleep apnea machine and sent me to his sleep dr he see's as he has sleep apnea himself. So I'm going to try it again and try a few different masks but I know I've read posts in the past where cfsers have said that the sleep apnea machines had no real improvement in their cfs symptoms.

I'd like to hear from any who has had experiences either way, greatly appreciated.

Also I'm finding some conflicting information. My neurologist basically saying weightloss doesn't really help sleep apnea. But the respiratory specialists/sleep dr says weightloss does. So far since January I've lost 23kg which I contribute mostly to stopping lyrica. It's a great drug for pain but no matter what diet you eat you just slowly put weight on. I generally eat low carb so that with stop lyrica has helped. Also I replaced lyrica with toprimate as a headache preventer and it's know to help lose wt, possibly through increasing leptin sensitivity.

So the sleep Dr seem to ignore what was helping me lose wt and said the only things that help weightloss are ozempic, the new wt loss drug or wt loss surgery. But why when what I just told her is working well, without trying. The other conflicting thing is my neuro who says wt loss doesn't help OSA but can help general health etc agreed with me that toprimate helps with wt loss.

I hate the sleep apnea machines but if I lose more wt, I hope I eventually won't need it.
Both drs aren't totally ignoring cfs/post viral fatigue but basically saying they don't know very much about it. My neurologist is saying to just take things one step at a time and see what happens.

To get to see all these drs etc is starting to cost me a small fortune, it's starting to add up, as I have to go through the private health system here in Australia as the public system, it just wouldn't happen and health insurance is too expensive and your still a significant sum out of pocket.

Almost forgot, started botox injection tonight for headaches. Also interested to hear from any cfsers who have found them useful.

I want to be hopefully but I'm not confident. I just think they are missing any immune/infection issues with cfs. 🤞I haven't had a shingle outbreak since the beginning of April, which is abit of a record for me👍

Grateful to hear cfsers experiences with sleep apnea machines and botox for headaches.

Cheers
 

Judee

Psalm 46:1-3
Messages
4,405
Location
Great Lakes
I do think weight makes a difference in apnea. I know two people--one who lost weight and no longer needed his CPAP and someone who gained weight and started to snore badly. I think at one point the 2nd person may have started using CPAP after the weight gain but don't know for sure.
 

almost

Senior Member
Messages
110
I've had a couple of rounds with sleep treatment. Several years ago after some weeks of waking up exhausted, I tested for sleep apnea and was diagnosed with OSA, like you. I also scored some central apnea but at time nothing was made of this. I was prescribed a machine, jumped through their hoops on getting it and using it and after two nights of waking up hating the mast (it was the fighter pilot mask style) I quit the therapy and lost the excess weight over 90 days. Retested and no more sleep apnea. Life was good.

Years passed, weight came back (not all the way) but sleep definitely declined and I had learned enough about my body to know myself that I was having apnea events. I retested again, after losing weight again did not help, and showed OSA and CSA (central sleep apnea) again. This time given my experience with sleep doctors in the past, I took their information and treated myself. I bought my own CPAP without insurance to hassle me (it was actually cheaper this way) and found from the data that it helped but wasn't what I needed. My first issue was actually positional apnea -- the way I held my head at night kinked my airway. No CPAP is going to fix that. A soft cervical collar did, and retrained my muscle to hold my head right. First night with that was a game changer. My body did learn, and I no longer need it.

However, I still was having central apneas, and again, no CPAP is going to fix this either. This is a brain/neurological function, not an airway constriction. The only machine that can treat this is an ASV BIPAP. Of course, they are the most expensive. They monitor your breathing against a learned baseline, and when you don't take a few breaths it steps in a breathes for you. It is a step or two away from being a ventilator.

I say all this for two reasons. First, make sure you know your central sleep apnea status. As far as I know, this can only be done in a lab. You will be wired all over your head to monitor brain function. It literally takes 30-45 minutes for them to apply and attach everything. This is important because without the right machine you are wasting your time and money and not getting the help you need.

Second, know that nobody, and I mean nobody, hates having to use a machine more than me. BUT, poor sleep can do serious damage to you, including your brain. It is so important for its restorative functions. It will get in the way of whatever other answers you need to discover.

I hope someday I will no longer need this, but for now, it is a must. Best of luck to you!
 
Last edited:

BrightCandle

Senior Member
Messages
1,134
Does CPAP help with ME/CFS? Not in my case. Long Covid made my Sleep apnea worse, + nearly 2 cmH2O which is a big increase.

As to weight loss, after being diagnosed with sleep apnea I lost weight a lot easier (it causes weight gain) I was told if I lost 20 KG I would not need a machine. That was a lie, my prescription went up a little. Truth is it depends entirely on the cause and since they rarely investigate this its not obvious whether weight loss will help sleep apnea or not. Its a common lie they tell people however to motivate weight loss (doctors lie a lot).

It took me quite a few masks and machines to find something that worked well. The initial masks I never got on with since they leaked and this kept waking me up. You need a mask that wont wake you blowing into your eyes nor put too much pressure on your nose bridge and that conforms well to minimise leaks. Not all masks work for everyone but what works best for me is the F&P Simplus. However F&P seems to have broken the mold end of last year somehow and they leak and whistle now so they no longer any good, the F&P Vitera is a distant second for me and what I currently use.

The machine also made a difference, moving from a Resmed S8 to the S10 APAP was a big improvement due to the heated tube and auto humidification. The various comfort settings help me get to sleep as well and I think are pretty important. You really have to play with this stuff and analyse your sleep with OSCAR (open source software for looking at your granular sleep data) to work out how to optimise your therapy.
 

heapsreal

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Messages
10,079
Location
australia (brisbane)
I do think weight makes a difference in apnea. I know two people--one who lost weight and no longer needed his CPAP and someone who gained weight and started to snore badly. I think at one point the 2nd person may have started using CPAP after the weight gain but don't know for sure.
Thanks. Yes I know a couple of people who have lost weight and no longer need cpap as well. My wife says my snoring has reduced alot as well. Just asked her now and no snoring this morning.
Cheers
 

heapsreal

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Messages
10,079
Location
australia (brisbane)
A big sign/symptom of sleep apnea is fatigue and headaches. But with insomnia as well it's hard to tell the difference but I do know if I can get a good solid 7-8 hrs sleep I feel alot better, which shouldn't be the case with sleep apnea. I also struggle to even have a nap, I lay down and rest during the day but actually sleep is rare. I don't generally wake up with a headache but after a couple of hours the pressure in my head starts to build throughout the day.

I'm not denying sleep apnea but I don't think its the only issue. From the recent questionnaires I've done for doctors, I'm not really ticking all the boxes for a typical person with sleep apnea. I think it's a whole new ball game when you have cfs, insomnia and sleep apnea. I must admit my neurologist is saying I'm a complex pt and he's just taking it one step at a time.

I'm thinking/typing out loud but the chronic headache thing started at the beginning of 2020 when I couldn't get famvir regularly. Prior to that I had 2 good years where I was managing work well and doing my wt training twice a week. My body wt at the time wasnt that different to the wt I was when I had the sleep study. So in my mind I'm thinking it's possible it's something else going on.

The other thing I had done prior to feeling well in 2018 besides consistently being on famvir, was rotating through different combinations of antibiotics and herbal antibiotics for common bacterial infections in cfs as well as tic and coinfections. I felt like I hit a spot where my immune system had everything mostly undercontrol so was really then just on famvir and my standard vitamin antioxidant protocol.

The shingles on my head has been sorted for the last 4 months which is a long time for me. Last 2 weeks or so slowly added antibiotics pharma and herbal. This is all done off my own bat. Time will tell.

Thanks for reading my little online rant. Can Dr Heaps cure himself again.🤣👍
 

almost

Senior Member
Messages
110
I'm not denying sleep apnea but I don't think its the only issue. From the recent questionnaires I've done for doctors, I'm not really ticking all the boxes for a typical person with sleep apnea. I think it's a whole new ball game when you have cfs, insomnia and sleep apnea. I must admit my neurologist is saying I'm a complex pt and he's just taking it one step at a time.
I could have written this myself. Every doctor I've seen (including neurologist and neurosurgeon) says I am a complex patient. My wife, a surgical RN, says I am one of the most complex she has run across. It is a whole new ball game. It sounds like you have a good doc in your neurologist.

I look at it like peeling on onion. Will sleep treatment cure my CFS? No, and I don't expect it to. What is at the core of my CFS, I don't know, but have some suspicions. In the mean time, I need to peel away anything that can get in the way, and for me that includes sleep apnea. Mine has actually improved with therapy and specific exercise. My obstructive is largely gone (per my sleep data), and my centrals have improved by about half. I actually can sleep without therapy for about 3-4 hours now and do just fine.

If you're game to try some other things, what has helped me is exercise of the mouth and throat muscles. As we age, these get weaker. For me, working at home and now speaking less has probably not helped either. South Dakota State University has a great youtube video of exercises you can do. There are also some over-the-counter breathing devices that can help train and strengthen these muscles. This helps keep muscle tone in the mouth and throat as you sleep.

I second the advice to keep trying different equipment. In my case, the commonly prescribed nasal pillows were untolerable. They look totally benign -- they are so small so I should love them -- but the pressure in my nose gave my unbearable headaches for half the next day. I switched to a Resmed f30 facemask and that works like a dream. It's small 'faceprint' works for me. I also use headgear that has the tube coming off the top of my head rather than the face. It is the only one I can tolerate. These two items make it bearable.
 
Last edited:

perchance dreamer

Senior Member
Messages
1,685
I can tell you my story. I got an obstructive sleep apnea diagnosis a long time ago, but could not tolerate cpap. I switched to a TAP dental device to control my apnea.

The reason I couldn't tolerate cpap was because at that time, my sleep doctor's office remotely controlled the pressure, which was way too high for me to tolerate. They had picked the pressure based on my lab sleep test.

It was infuriating. I'd call the medical supply place that my doctor used for cpap equipment, and they would ask the doctor for permission to lower it. It sometime took 2-3 days to get his approval to have the pressure lowered. I eventually said, screw this. I'm using a dental appliance instead.

A couple of years ago, I started a long process to restore my teeth, which I had had problems with since childhood. I could not use my dental device during the restoration, so I had to use cpap. This time I was successful.

I learned of a youtube video that showed me how to access the clinical menu on my Resmed Airsense 10 machine, which allowed me to control the pressure myself. Knowing how sensitive I am, I started with 5.2 (I forget the units of measure for air pressure), which was a good deal below the therapeutic pressure my sleep test suggested. I stayed with this awhile, and over a period of around 8 weeks, finally got up to a pressure that lowered my apnea events to a normal range.

So having control over the pressure helped tremendously. Also, after experimenting with more mask types, I got a Philips mask with a hose that swivels on top of my head, the kind of headgear @almost mentioned. This was great for me because if the hose is not on top of your head, as with other headgear types, it's lying beside or on top of you as you lie there, a most unwelcome bed mate, I found. With the swiveling hose on top of your head, it keeps the hose out of your bed, and it's easy to switch positions if you sleep on your side. I would stabilize the top lightly with my hand and then turn over. Switching positions is much easier with the headgear on top of the head.

Another thing that helped me is getting the mask most suited for me. I'm strictly a side sleeper, so I needed a soft mask that wouldn't dig into my face and put pressure on me as I slept on my side. The softest, least obtrusive mask I found was the Philips DreamWear nasal cushion. This same nasal mask comes in another model that has little prongs that fit in the nose, but I found the cushion was more comfortable. The material was very soft and didn't dig into my face.

To use a nasal mask, you need to be able to breathe through your nose. If that's very difficult, you would need a full face mask to accommodate mouth breathing.

Using cpap did not cure me (I have fibromyalgia, not CFS/ME), but it allowed me to sleep without an inordinate number of apnea events since I was not able to use my oral device while all the dental work was going on.

Once all my mouth treatment was complete, I went back to a dental appliance and stopped cpap. I find my new Prosomnus much better than my TAP dental device. It's much more comfortable. In the morning, I wear an aligner for about 10 minutes, which puts my jaw back in its original position. Apena oral devices advance the jaw during the night to help open the airway.

As for weight loss and apnea, some fortunate people find that when they lose a significant amount of weight, their apnea improves greatly or goes away. I know someone like that. For others, unfortunately, apnea is caused by other reasons.

I'm thin, so excessive weight was never the thing that caused my apnea. My ear/nose/throat doctor said that mine is caused by a small airway and long palate, just the way I came into the world.

I learned recently that one reason people are more apt to develop apnea as they get older is that the throat structures lose tone and get flabby, and the tongue enlarges and gets flabby, too, making obstruction more likely. (For God's sake: Can't there be just 1 bodily function that improves with age?)
 

heapsreal

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Messages
10,079
Location
australia (brisbane)
I could have written this myself. Every doctor I've seen (including neurologist and neurosurgeon) says I am a complex patient. My wife, a surgical RN, says I am one of the most complex she has run across. It is a whole new ball game. It sounds like you have a good doc in your neurologist.

I look at it like peeling on onion. Will sleep treatment cure my CFS? No, and I don't expect it to. What is at the core of my CFS, I don't know, but have some suspicions. In the mean time, I need to peel away anything that can get in the way, and for me that includes sleep apnea. Mine has actually improved with therapy and specific exercise. My obstructive is largely gone (per my sleep data), and my centrals have improved by about half. I actually can sleep without therapy for about 3-4 hours now and do just fine.

If you're game to try some other things, what has helped me is exercise of the mouth and throat muscles. As we age, these get weaker. For me, working at home and now speaking less has probably not helped either. South Dakota State University has a great youtube video of exercises you can do. There are also some over-the-counter breathing devices that can help train and strengthen these muscles. This helps keep muscle tone in the mouth and throat as you sleep.

I second the advice to keep trying different equipment. In my case, the commonly prescribed nasal pillows were untolerable. They look totally benign -- they are so small so I should love them -- but the pressure in my nose gave my unbearable headaches for half the next day. I switched to a Resmed f30 facemask and that works like a dream. It's small 'faceprint' works for me. I also use headgear that has the tube coming off the top of my head rather than the face. It is the only one I can tolerate. These two items make it bearable.

Lol second paragraph peeling away an onion skin, this is exactly what my neurologist said. Thanks for the tips👍
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,079
Location
australia (brisbane)
I can tell you my story. I got an obstructive sleep apnea diagnosis a long time ago, but could not tolerate cpap. I switched to a TAP dental device to control my apnea.

The reason I couldn't tolerate cpap was because at that time, my sleep doctor's office remotely controlled the pressure, which was way too high for me to tolerate. They had picked the pressure based on my lab sleep test.

It was infuriating. I'd call the medical supply place that my doctor used for cpap equipment, and they would ask the doctor for permission to lower it. It sometime took 2-3 days to get his approval to have the pressure lowered. I eventually said, screw this. I'm using a dental appliance instead.

A couple of years ago, I started a long process to restore my teeth, which I had had problems with since childhood. I could not use my dental device during the restoration, so I had to use cpap. This time I was successful.

I learned of a youtube video that showed me how to access the clinical menu on my Resmed Airsense 10 machine, which allowed me to control the pressure myself. Knowing how sensitive I am, I started with 5.2 (I forget the units of measure for air pressure), which was a good deal below the therapeutic pressure my sleep test suggested. I stayed with this awhile, and over a period of around 8 weeks, finally got up to a pressure that lowered my apnea events to a normal range.

So having control over the pressure helped tremendously. Also, after experimenting with more mask types, I got a Philips mask with a hose that swivels on top of my head, the kind of headgear @almost mentioned. This was great for me because if the hose is not on top of your head, as with other headgear types, it's lying beside or on top of you as you lie there, a most unwelcome bed mate, I found. With the swiveling hose on top of your head, it keeps the hose out of your bed, and it's easy to switch positions if you sleep on your side. I would stabilize the top lightly with my hand and then turn over. Switching positions is much easier with the headgear on top of the head.

Another thing that helped me is getting the mask most suited for me. I'm strictly a side sleeper, so I needed a soft mask that wouldn't dig into my face and put pressure on me as I slept on my side. The softest, least obtrusive mask I found was the Philips DreamWear nasal cushion. This same nasal mask comes in another model that has little prongs that fit in the nose, but I found the cushion was more comfortable. The material was very soft and didn't dig into my face.

To use a nasal mask, you need to be able to breathe through your nose. If that's very difficult, you would need a full face mask to accommodate mouth breathing.

Using cpap did not cure me (I have fibromyalgia, not CFS/ME), but it allowed me to sleep without an inordinate number of apnea events since I was not able to use my oral device while all the dental work was going on.

Once all my mouth treatment was complete, I went back to a dental appliance and stopped cpap. I find my new Prosomnus much better than my TAP dental device. It's much more comfortable. In the morning, I wear an aligner for about 10 minutes, which puts my jaw back in its original position. Apena oral devices advance the jaw during the night to help open the airway.

As for weight loss and apnea, some fortunate people find that when they lose a significant amount of weight, their apnea improves greatly or goes away. I know someone like that. For others, unfortunately, apnea is caused by other reasons.

I'm thin, so excessive weight was never the thing that caused my apnea. My ear/nose/throat doctor said that mine is caused by a small airway and long palate, just the way I came into the world.

I learned recently that one reason people are more apt to develop apnea as they get older is that the throat structures lose tone and get flabby, and the tongue enlarges and gets flabby, too, making obstruction more likely. (For God's sake: Can't there be just 1 bodily function that improves with age?)

Thanks for those tips. I will keep them in mind.
I'm a mouth breather myself and im usually nasally congested and the last week have been using a nasal steroid spray, which I can't say is helping. So I think the full face mask will be the go. I will be going in to see a cpap machine place within the week. 🤞 it goes better than the first trial I did a few months back.

I'm going to start adding some exercise/mild to try and help more with the wt loss. I think my sleep apnea is related to wt, my wife says I'm already snoring less and not noticing periods where I stop breathing, so hopefully drop more weight and I can shelve the cpap machine eventually🤞🙏
 

EtherSpin

Senior Member
Messages
257
Location
Melbourne , Australia
Very interesting thread.
I tested recently and got a result of mild sleep apnea and am at my highest weight,wife reported the increased snoring over 18 months.

My doc is relatively new and trying to wrap his head around my combo of meds from CFS Doc who sadly passed away a couple of years ago..

The doc is a nice old guy but needed a lot of rationale for taking "Contrave" which is a supposed weight loss aide combining Low Dose Naltrexone with Buproprion.

The above combo has helped neuroinflammation driven symptoms of mood disturbance and vertigo, temperature intolerance since 2014 and and I hope is stopping further weight gain.

He said I am so on the cusp with the sleep obstruction I can go follow that up or try weight loss and he mentioned Ozempic - which id only heard of via diabetes groups in America saying celebs and influencers were buying up the supply diabetic people need.

I'm now second guessing the machine based on searches on here and not finding people yet who found big benefits from a machine.. I know they cost a bit... Weight loss is my central problem, it utterly wrecks my sense of self as the icing on the CFS Cake that gives me sloth appearance on top of having no career anymore & only doing sedentary things with the kids.

I think with my experience pacing and fatherhood now at the ~15 year mark of CFS and 10 years out of the workforce I could have a good life if I just felt a bit physically healthier

Good luck to you Heapsreal - I relate to your napping i.e. it never happens.. about once every 4-5 months I overdo it so badly, do something dumb like chugging a shot of concentrated coffee and sugar and weirdly, that induces a bleary doped drowsiness where I wake 6 hours later having drooled on the damn pillow like I was comatose! But generally, nah, vigilant and brain will not switch off despite fog.


I'll watch the thread to hear about what you do cause I've noticed for the last bundle of years a bit of overlap with you in symptom profile and things we have tried. Cheers
 

heapsreal

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10,079
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australia (brisbane)
Update on my situation.
My neuro sent me for several tests, echocardiogram, 24hr blood pressure monitor and to see the endo about my empty Sella which contains the pituitary that controls most hormones.
Now my neuro said to me, I bet you have extremely high night time blood pressure when you sleep. The echo we need to check because high BP can enlarge the right side of the heart. Empty Sella checked and probably from increased intracranial pressure which was identified on an mri at the start of the year.

When I saw the neuro 5 days ago he said my 24hr BP was fine and suprised but some enlargement on the right ventricle, which is why it's important to get on the cpap.

I also saw the resp sleep dr that day who saw my sleep study results from 13kg ago that showed I supposedly had severe sleep apnea, I will get the the supposedly soon. She did say that it's possible that losing wt people can come off the cpap machines and the only effective ways to lose wt is wt loss surgery or ozempic. I said to her I've lost 23kg since the beginning of the year by stopping lyrica and taking toprimate for headaches and I eat low carb but I always eat low carb. She ignored me and repeated her self. I said I haven't tried and I've lost 23kg, they use toprimate in America as a wt loss drug. Just ignored me.

So my neuro agrees that toprimate helps people lose wt but most people need cpap for life even if they lost wt. So they contradict each other abit. The endo did agree with the neuro that the empty Sella was probably from increased intracranial pressure and probably causing the headaches.

But anyway, all these test results have been sent to my GP and I got copies of them today. I will be honest, I don't want the cpap mask and it's the main reason I'm being strict with my low carb diet to get my wt down. My wife has said she hasn't heard me snore for awhile now. So the echocardiogram report basically says everything is spot on other than the right ventricle has mildly dilated right ventricle with normal systolic function. Not something to be concerned about as long as my wt keeps coming down. Now the big thing is the night time BP in someone with obstructive sleep apnea is supposed to be through the roof when they are sleeping. Report says 24hr BP low normal average 100/57 , this indicates the pt is currently overtreated for BP and is totally out of keeping with severe untreated obstructive sleep apnea.

WTF do I do??? The neuro and sleep dr have both seen these results and are pushing the cpap. I've lost 23 kg since start of the year and 13kg since the sleep study. These cpap machines cost $2000 and I can hire one for $250 a month but I really don't think I need to. In the last couple of months I've spent a fortune seeing specialists. A part of me feels like I'm being taken for a ride but I do want these headaches and increased intracranial pressure looked into properly.

I have ordered a pulse oximeter that blue tooth's the info to your phone, so I can do night time oxygen readings when I'm asleep, which will tell me more precisely if I'm have sleep apnea episodes or not. Hopefully get it early next week. I don't see the neuro until September.

I'm not sure how I feel. Lost abit of trust in them I feel???
 

Andryr

Senior Member
Messages
136
Location
Ukraine
I can hire one for $250 a month
I would try it for a month. You will know for sure whether it has any effect on you. But be very careful when picking a mask.
night time oxygen readings when I'm asleep, which will tell me more precisely if I'm have sleep apnea episodes or not
My sleep study indicated I had apnea episodes with a drop in my heart rate not in oxygen. May your apnea expose itself in anything else rather than oxygen?
 

heapsreal

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10,079
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I would try it for a month. You will know for sure whether it has any effect on you. But be very careful when picking a mask.

My sleep study indicated I had apnea episodes with a drop in my heart rate not in oxygen. May your apnea expose itself in anything else rather than oxygen?

Thanks.
The sleep study I did they seemed more interested in the oxygen levels. The oxygen monitor I'm getting also does heart rate.
I will have a week to use this oxygen monitor and will talk to my gp about the results and then take your advice and hire the machine for a month. I think during the month trial you can swap the mask a few times??
 

perchance dreamer

Senior Member
Messages
1,685
Something that has helped me with apnea is sleeping with my head elevated. I used to have a bed wedge for this, but now I have an adjustable bed so the wedges are no longer necessary.

From the 1st night I slept elevated, I never wanted to sleep flat again since it noticeably helped my breathing. When I was using wedges, I'd even travel with mine, as bulky and cumbersome as it was. I had to really watch out not to bump other people with the pillow in the airport.

Many companies sell them, sometimes calling them acid reflux or snoring pillows. Something I find helpful when sleeping with my head elevated is to also elevate my feet just a little to take pressure off my lower back. It's good to get a wedge long enough that you can keep your spine straight.
 

almost

Senior Member
Messages
110
WTF do I do???
Glad you updated us. This is a frustrating battle!

Seems to me you're doing all the right things. BP is a big deal, and you checked that off. O2 levels are probably the biggest deal (glad your docs focus on that), and the nighttime pulse ox will cover that. I wore an O2 ring for a while when I was diagnosing, but don't need it now. Anything below 90 is dangerous if it lasts. One danger here is that the risk is not just waking tired. Low oxygen at night is a stroke risk. You can cruise along and have a number of OK nights and then have just one that changes your life. I think I had a close call one night, so that is something to keep in mind.

You should be able to try different masks. If not, you may need another $100 investment or so to buy a few (cost depends on the headgear I believe), but it would be well spent. Best luck to you!
 

heapsreal

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Glad you updated us. This is a frustrating battle!

Seems to me you're doing all the right things. BP is a big deal, and you checked that off. O2 levels are probably the biggest deal (glad your docs focus on that), and the nighttime pulse ox will cover that. I wore an O2 ring for a while when I was diagnosing, but don't need it now. Anything below 90 is dangerous if it lasts. One danger here is that the risk is not just waking tired. Low oxygen at night is a stroke risk. You can cruise along and have a number of OK nights and then have just one that changes your life. I think I had a close call one night, so that is something to keep in mind.

You should be able to try different masks. If not, you may need another $100 investment or so to buy a few (cost depends on the headgear I believe), but it would be well spent. Best luck to you!

I'm just thrown off that my neuro who was 110% sure my asleep BP would be through the roof but it came back at 100/57. The 24hr BP report that came back from that dr was quite strong wording that it was not consistent or far from being anything like obstructive sleep apnea.
I think my weight loss from when I did the sleep study and from when I did the 24hr blood pressure was significant enough to have effected and maybe reversed my sleep apnea.
I actually wake up and don't feel too bad. But after a couple of hrs the pressure starts to build and by the afternoon I'm exhausted from the headache pain. I'm no neurologist, but going by my mri(empty Sella showing at flatten pituitary?) and my symptoms plus what the endocrinologist said recently, it looks alot like increased intracranial hypertension and not sleep apnea related??
Next week I get my blue tooth pulse oximeter, so I should be able to tell if sleep apnea is the issue, I hope.

When I had my sleep study a few months back my average oxygen saturation were 93% but had some Dips were it was in the 80s% range for very short periods, indicating apnea at the time.

Thanks for replying,
Gratefully appreciated 👍
 

LaurelW

Senior Member
Messages
642
Location
Utah
I had a sleep study and saw a sleep doctor and sleep therapist in the last few months. It's pretty frustrating that they don't seem to know much about ME/CFS. I also had the sleep doctor tell me that losing weight doesn't help, and her very own nurse told me that it does help. They wanted me to get a CPAP because I snore while lying on my back. I would never be able to sleep with that on because my fibro pain already makes me hypersensitive. We settled on using a device to keep me from lying on my back. Then the sleep therapist wanted me to stop taking naps during the day and go to bed later or get up earlier to try to consolidate my sleep. She said it's hard in the short run but it helps in the long run. I asked my ME specialist about this technique, and she said she had one patient that was ruined by trying to do this. So I cancelled my remaining appointments. The therapist did make some recommendations to try to lower my pain levels, so that's what I'm pursuing.
 

almost

Senior Member
Messages
110
I'm no neurologist, but going by my mri(empty Sella showing at flatten pituitary?) and my symptoms plus what the endocrinologist said recently, it looks alot like increased intracranial hypertension and not sleep apnea related??
I think you're pretty smart. Don't ignore or avoid professional advice, of course,
HOWEVER . . .
I have been right far more often in the last year while pursuing whatever flavor of CFS I'm dealing with than the docs I have seen. I have received some very useful help, but figuring this out -- I'm on my own. I confronted one about what I saw as 'silo-mentality', i.e. they refused to look past the walls of their own specialty, and they did not deny it. My best friend right now is my primary doc who helps me pursue what I uncover as well as his own ideas. Yet this is my responsibility, so I learned to do my own differential diagnosis routine, with the help of my wife who is a very knowledgeable RN, and listen to my own body and use my own brain.

I think you are using a similar logical process, and I think it will serve you well.

Does your neurologist have any answers to relieve the pressure?