• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

CPAP/APAP machine helped any cfsers??

heapsreal

iherb 10% discount code OPA989,
Messages
10,079
Location
australia (brisbane)
@LaurelW @almost both have good points and I'm with you. Being in their own silo mentality is spot on. Plus there's contradiction amongst specialists but as mentioned we know our own bodies best. I'm not ready to cancel all my appointments yet, but I'm close, but I need to have this increased intracranial hypertension looked into deeper.

I think my neuro thinks the cpap and botox are going to fix the headaches. I've done a 2 week trial of cpap before seeing him and I felt worse. I hasn't mentioned what steps to take further down the track. From what I have read weight loss, I can still increase the medication I'm on and worst case scenario is they put a shunt in your head or spine to drain the csf fluid. Today is my weigh in day of the week and I'm down another 2kg.
I am doing some antibiotics and herbal antibiotics which helped a few years ago, as infection can also be implicated in causing increased intracranial hypertension but often ignored by drs especially if you mention cfs post viral issues.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,079
Location
australia (brisbane)
Update.
I got my continuous oxygen/pulse rate blue tooth pulse oximeter monitor yesterday.

Very interesting. I wore it last night and slept with it on for 4 hours. My average oxygen saturation was 97% and my average pulse rate was 70. My oxygen saturations didn't drop below 95%. Going by this I'd say I've cured my sleep apnea as I've dropped 15kg since I did my sleep study. I can't say my headaches have improved.

I think I've basically proved the neurologist wrong that once you need a cpap, you need it for life. It also confirms what the 24hr BP report findings said ie its not consistent with untreated severe obstructive sleep apnea.

I'm going to do several nights of readings and I see my GP Friday next week and discuss it with him. I don't believe my headaches are related to sleep apnea. I guess it's benign increased intracranial hypertension, going on the mri findings of empty Sella with a flattened pituitary gland.

Cheers
 

almost

Senior Member
Messages
110
Nice work @heapsreal ! Way to be your own advocate.

I have had a shunt for about a year now, for a different reason. It isn't a lot of fun, but given the alternative, I can live with it. If they don't get the drainage rate just right, it can actually cause headaches, so be advised. Worst headaches I have ever had in my life came right after the first adjustment. They went away, but that was 36 hours of hell. I get some morning headaches now on occasion that I think are coming from the shunt, so it may be time for them to slow the rate down now after a year. Best of luck to you.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,079
Location
australia (brisbane)
Nice work @heapsreal ! Way to be your own advocate.

I have had a shunt for about a year now, for a different reason. It isn't a lot of fun, but given the alternative, I can live with it. If they don't get the drainage rate just right, it can actually cause headaches, so be advised. Worst headaches I have ever had in my life came right after the first adjustment. They went away, but that was 36 hours of hell. I get some morning headaches now on occasion that I think are coming from the shunt, so it may be time for them to slow the rate down now after a year. Best of luck to you.

Thanks.
I hope you get your shunt sorted. I've heard a few stories of people having problems with shunts. Not an easy life having to life constantly having to adjust shunts etc. The chronic headaches would be enough, let alone dealing a shunt. Good luck.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,079
Location
australia (brisbane)
Wikipedia mentions a medication for IIH and Celendine has mentioned it too...Diamox as helping her daughter at one point. ??

https://en.wikipedia.org/wiki/Idiopathic_intracranial_hypertension

Have you tried it before?

If not, maybe it could help instead of doing shunts. ??

Thanks, diamox is definitely on my mind/list for sure. I still have some room to increase the toprimate medication I'm on which helps lower icp and I've seen on other fb pages some people are on both meds. Not sure if my gp can prescribe it. Not sure what I'm going to do about the neurologist, I've lost abit of trust there and what we have just mentioned medication wise is really all they can offer other than a stent, which I'm not sure I'm ready for.
Also the last month I've been going through a lyme treatment/chronic bacterial treatment thing I'm doing off my own bat which helped me alot a few years back along with the antivirals. So I'm hoping and 🙏 it starts helping. It's a slow process but have had very short moments of clarity here and there. Mostly herbal abx with one or 2 abx along the way.
 

EtherSpin

Senior Member
Messages
257
Location
Melbourne , Australia
Update.
I got my continuous oxygen/pulse rate blue tooth pulse oximeter monitor yesterday.

Very interesting. I wore it last night and slept with it on for 4 hours. My average oxygen saturation was 97% and my average pulse rate was 70. My oxygen saturations didn't drop below 95%. Going by this I'd say I've cured my sleep apnea as I've dropped 15kg since I did my sleep study. I can't say my headaches have improved.

I think I've basically proved the neurologist wrong that once you need a cpap, you need it for life. It also confirms what the 24hr BP report findings said ie its not consistent with untreated severe obstructive sleep apnea.

I'm going to do several nights of readings and I see my GP Friday next week and discuss it with him. I don't believe my headaches are related to sleep apnea. I guess it's benign increased intracranial hypertension, going on the mri findings of empty Sella with a flattened pituitary gland.

Cheers
This is tremendously helpful anecdotal info - really pleased to hear your efforts have ended up giving you the direction to go in and an apparent solution.

I'm gonna mention this tidbit to my doc when I weigh up with him which weight loss aide medications I could try VS sleep specialist and machine
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,079
Location
australia (brisbane)
This is tremendously helpful anecdotal info - really pleased to hear your efforts have ended up giving you the direction to go in and an apparent solution.

I'm gonna mention this tidbit to my doc when I weigh up with him which weight loss aide medications I could try VS sleep specialist and machine


Thanks I appreciate your reply👍.

It's confusing because I've had conflicting information from every doctor. But just talking to normal people about sleep apnea, I came across several people who lost 10-20kg and then didn't need their cpap machines. But going by some drs, once you need a cpap, you need it forever. There are plenty of people who are normal wt or under wt who need a cpap but don't have the option of trying to lose wt to see if it helps. So it's worth trying to lose wt if your carry extra wt and have sleep apnea and Monitor your own night time oxygen levels with a pulse oximeter and its not much different to a sleep study other than being much more comfortable.

If you need to lose weight, seriously look at the medication you are on as there's a few that can stop you from losing wt even if on a good wt loss diet and exercise program.

Toprimate normally used for epilepsy, migraines and intracranial hypertension is used in America for wt loss through several mechanisms. It can reduce appetite but also it can Improve leptin sensitivity, which is usually poor in those who are overweight and makes it hard to lose wt. I'm sure there was a study several years ago showing cfsme pts had poor leptin sensitivity or leptin secretion etc either way we had poor control of leptin and Toprimate improves the function of leptin??

My neurologist I think was convinced that my headaches were caused from sleep apnea, cfsme got the eye roll and he moved past considering anything to do with cfsme. So my headaches continue even though my oxygen levels remain between 95-100% O2 while I'm asleep.

So that's the high lights of what I've done.
I hope these threads help others in this situation.
 
Messages
98
I was prescribed a sleep apnea machine on the basis (after a sleep test) that I had very mild OSA, which some specialists claimed I may be able to get by without. The truth is, when sleeping on my back, I stop breathing and wake up gasping for air.

Unfortunately in recent years the same has happened with the machine running, ie I'd have to rip the mask off because I was apparently suffocating, or so it felt like it.

More recently I found side sleeping has reduced the incidence of nocturia, and if I use the cpap again I go several times a night to the toilet resulting in an ever-degrading quality of sleep and life.

I have suspicions/thoughts that the cpap itself may be causing some degree of physical stress that aggravates the ME symptoms, but this is just a hunch. It would be interesting to hear from others if they find the same.

I'll see how I go without cpap for a while. It's only been a few nights and daytime fatigue has dropped marginally.
 

perchance dreamer

Senior Member
Messages
1,685
You can buy t-shirts designed to prevent back sleeping. They have a zippered pocket in the back for a tennis ball, in order to make back sleeping uncomfortable. My husband uses one, and it really helps keep him on his side while sleeping.
 

lyran

Senior Member
Messages
185
There are also dental appliances available for sleep apnea. Dentist can make one for you or you can buy one from Amazon or elsewhere which you need to heat to fit your teeth.
 
Messages
98
There are also dental appliances available for sleep apnea. Dentist can make one for you or you can buy one from Amazon or elsewhere which you need to heat to fit your teeth.
I've tried a TMJ re-positioner device, custom made by a dentist. In short, it didn't work, and what's worse it semi-permanently re-positioned my jaw to an over-bite position.
Over the years it gradually went back (after not using the TMJ device) but jaw alignment was never the same, and I regularly bite the inside of my lip when eating.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I was prescribed a sleep apnea machine on the basis (after a sleep test) that I had very mild OSA, which some specialists claimed I may be able to get by without. The truth is, when sleeping on my back, I stop breathing and wake up gasping for air.

Unfortunately in recent years the same has happened with the machine running, ie I'd have to rip the mask off because I was apparently suffocating, or so it felt like it.

More recently I found side sleeping has reduced the incidence of nocturia, and if I use the cpap again I go several times a night to the toilet resulting in an ever-degrading quality of sleep and life.

I have suspicions/thoughts that the cpap itself may be causing some degree of physical stress that aggravates the ME symptoms, but this is just a hunch. It would be interesting to hear from others if they find the same.

I'll see how I go without cpap for a while. It's only been a few nights and daytime fatigue has dropped marginally.
When is the last time you saw your Dr with the CPAP machine? Sounds like it needs to be adjusted, increase the setting for air pressure to keep airway open, but I'm not a Dr. You shouldn't be getting up and gasping for air. You might also want to see if you can be prescribed Oxygen, that could help you out.

GG
 
Messages
98
When is the last time you saw your Dr with the CPAP machine? Sounds like it needs to be adjusted, increase the setting for air pressure to keep airway open, but I'm not a Dr. You shouldn't be getting up and gasping for air. You might also want to see if you can be prescribed Oxygen, that could help you out.

GG
I've been in and out of sleep specialist appointments for decades. In short, I think I've gone as far as I possibly can with them. The last bit of advice given to me was "I can send you to our Insomnia clinic if you want".

Insomnia clinic will likely suggest mental health problems and refer to a psychiatrist/psychologist. These specialists typically overlook that ME/CFS is a physical-based illness, not mental. They're also likely to prescribe anti-anxiety or anti-depressant drugs; neither of which I would consider for a second. This is an expensive dead-end which I can't see worth pursing, but thanks for the suggestion.

I have an auto-titrating CPAP machine which, over the years I learned to adjust myself and save the thousands of dollars in consult fees (as well as the extremely long waiting times to see a specialist). I have had a specialist review my settings some time ago and they had no further changes/suggestions to provide so I feel I'm on the right track.

Still, I can't help but feel the CPAP is both helping and complicating my situation. I sometimes wake with heart palpitations and can't get back to sleep. Removing the head gear and rolling onto my side usually has me back to sleep quickly. No heart palpitations... No problems... except the quality of sleep seems to be less, but there's no sign that I had any apnea events while side-sleeping (eg dry or sore throat, headache). There seems to be another variable in this equation that I have yet to discover.

My OSA is mild and specialists have commented I could technically go without a CPAP since it's so mild, but there is a difference felt with and without CPAP use over a week or two.
 

perchance dreamer

Senior Member
Messages
1,685
I've tried a TMJ re-positioner device, custom made by a dentist. In short, it didn't work, and what's worse it semi-permanently re-positioned my jaw to an over-bite position.
Over the years it gradually went back (after not using the TMJ device) but jaw alignment was never the same, and I regularly bite the inside of my lip when eating.

I think this does happen to a lot of people, unfortunately. Here's my experience with jaw advancement devices.

For years I used a TAP (Thornton Adjustable Positioner), and it did create some tooth and jaw problems.

Now I'm successfully using another brand of oral apnea device, ProSomnus EVO. It's much more comfortable than the TAP I used to have. It's less bulky, has more room for my tongue, and feels softer than the TAP.

It's crucial to get the fit right when using any oral apnea appliance. My dentist used a lot of electrodes and a TENS unit to get my muscles ultra relaxed for the fitting. I was at her office an entire morning for the fitting.

She also had me wait many weeks before advancing it to the next level. She believes you need all that time for the muscles and ligaments to adapt to the new position.

For anyone using oral apnea devices, resetting the jaw to its neutral position in the morning is crucial, too. When I wake up, I use something called an A.M. aligner, an inexpensive device made at the dentist office. I wear it while I brush my ProSomnus in the morning and do a few other things. Wearing the ProSomnus has given me no jaw problems, and I used to have really bad TMJ, which still flares occasionally, but from stress rather than the apnea device.
 
Messages
98
I guess the unanswered question regarding CPAP is why, ie why is my airway so narrow as to cause OSA?

I'm not your stereotypical CPAP patient, ie I hear a lot about "...if you only lose some weight then it will fix your OSA...". I don't carry excessive weight so there's really not much use in trying to trim down any further other than for aesthetics. 😎

What I recall of the Epstein Barr infection I had over 30 yrs ago was the throat swelling, to a point of coming close to closing off my airway. This seems to have never fully recovered post-virus.

So the real thing I'd like to know is, what is happening around the throat area and what can be done. This has never been investigated or discussed in the 30+ yrs of being on the "GP merry-go-round".

It's great if TAP devices work for you, but my experience of them, and the idea of "forcing" my jaw one way and then the other in the morning doesn't feel like a good idea for myself, ie it took me well over a year before my jaw (sort of) realigned after stopping use of a dentist-designed TAP.

In short, it's great if it works for you but I'd love to tackle the problem from the root cause. I even said to my GP that I'd be prepared to shove a surgical tube down my throat every night just so I don't have to wear all that CPAP garbage all over my head. I'm kind of over it. :(