Medication, a cautionary tale

[tinyobject]

Firstly thank you for all the valuable information.

This is NOT medical advice; everything I say here is my experience and should not be taken as medical advice; please ask your doctor if you have questions about your medications and your Sleep Apnea.

Secondly; I am sure there is a thread about this somewhere, but I want to share my experience in hope that it can help someone else and to bring it to the front of mind for some other posts I have been following.

My Story:

I have been on CPAP for over 2 years, and in that time I have had a DreamStation APAP and a Resmed APAP and never could seem to understand how to get my AHI to below 5… I am always 12 or above (mostly centrals; so i'd have like an AHI of 21 which was made up of 3 OSA, 7 HA, 11 CAI).

As a Arthritis sufferer, I have been on an off a number of different medications. This one particular medication I was put on, I was on it for about 8 months before I was diagnosed with Sleep Apnea... I wish I had have been smarter back then - but at the time I was vulnerable, I wasn't aware of my sleep apnea (re-phrase I wasn't diagnosed with sleep apnea) and I had been suffering from chronic pain for a lot longer than I care to admit so I was willing to try anything (I should have researched it first, a lesson I have since learnt).

Fast forward 12 months, I had pneumonia and as part of the investigation, the respiratory doctor determined that I should have a sleep study, the study showed that I had obstructive sleep apnea (moderate) and I was started on an APAP machine.

I had a very bad experience, I had an AHI that would fluctuate from one day to the next, AHI of 5 or 6 one day, then an AHI of 12 to 32 the next; it was all over the shop, so the doctor increased the pressure I was on to 10-20 and the 95% pressure would always be almost 20 and my AHI's were rubbish. I tried different EPR settings, I tried lower pressures, I tried different machines... I tried everything I read on here and more… but my centrals would always dominate: at least X4 of my OSA value.

I think I found - PART - of my problem through accident/coincidence.

The medication I have been taking for my arthritis for years isn't working, I am still in pain and the relief the medication gives me is not worth the side effects, I gave it a good try (1 year 5 months, 26 days) but I decided that it isn’t managing my symptoms and I was only taking it because I would get huge withdrawals if I stopped taking it…. So I decided that I was going to stop taking the medication (AMA), however with a 32 hr half life it takes 3 days for a single dose to get out of your system, and 1-4 weeks for the withdrawals to subside… I tried to quit cold turkey, it was hell, so I researched how to do it properly and started a very aggressive taper regime, to slowly - but aggressively - get the damn thing out of my system.

So far over the last 4 weeks I have managed to cut down my dose (against medical advice - so everything I am saying is an opinion and a story of my experience NOT medical advice), I have managed to cut down from 16mg a day to 4mg a day over the last 4 week... absolute HELL, the withdrawals are horrendous; If only I knew I would NEVER have touched the S**t, and I am in constant pain while I find an alternative treatment methodology...

BUT…

... my average AHI has dropped - specifically - my Centrals have dropped - significantly - over the last week my centrals have averaged 3.9 per hour compared to my previous average of 9.7 - It doesn't look like the medication is what is causing me to have Central Apneas as my centrals started to show up about 3 months into my treatment and I was on the medication for over 7 months before I started CPAP treatment (and there's evidence of me having sleep apnea going back to 2003 so its not medication induced apnea).

In this case I was prescribed Buprenorphine for chronic back pain and arthritis; Buprenorphine is a partial optiate agonist, it is supposed to have a ceiling effect that means that it is supposed to be less addictive and have a decreased impact on respitiory depression in comparison to primary or full agonist opiate like Codiene, Oxycontin etc. In my case its very hard to determine if the Centrals are PRIMARILY caused by drugs or not - as I was ok for 4 months before the centrals started to show up on the machine, by that I mean I was using the APAP machine for over 4 months with OSA's dominant before I started to see Centrals >5 creep in and then become consistently a problem where almost every night in the last 6 months I have had centrals >5 every second day (usually 9+). 

However during the last 3 weeks; since I have decreased my medication down by 3/4 (from 16mg to 4mgs) the centrals I have been experiencing have dropped by about 1/2.

So my point is...

Do your own research into the medications you are taking and what effects they can have on your sleep apnea because sometimes; something that is as obvious as a medication you are taking could be causing unnecessary problems that can be overlooked. I told the doctor about all my medications, gave the doctor a referral with all my medications on it, I took in updated health summaries every 3 months when I would go for a check-up to try and and get advice as to how to improve my situation, but either the doctor didn’t know or didn’t understand what the medication I was and on was and what risks it has.

Anyway, that’s my 2c, take back control of your own health.

   

[Ockrocket]

You are correct about managing medications and being aware of the side effects.. unfortunately doctors are sometimes less than caring about our longer term health, and primarily focus on the "now" cure for a problem.

With regard to your arthritis..
I had an Uncle who had severe arthritis in his neck, so painful that it would bring him to tears, he had to rotate the whole upper half of his body if he wanted to turn to look at something.
He also had dementia.

As none of the mainstream medications had worked for him my Aunt decided to try a more natural remedy that she had heard of, cherries reportedly could significantly reduce the symptoms of arthritis.
She started my Uncle on a regime of a dessert spoon full of cherries per day with his breakfast, which was easy because my Uncle loved fruit.. or more to the point he just loved any food full stop. 
After about three months she noticed an improvement, and because of his dementia he never thought to use his arthritis as a "get sympathy" tool for anything he wanted. 
However the real proof that cherries had improved his arthritis came with the fact that every time a pretty woman walked past he and my Aunt at the shopping centre or on the street my Uncle's head would spin around to get a good look.. no more turning his whole upper body.

Fortunately my Aunt understood it was the dementia that caused his sometimes less than appropriate behavior that she saw.

I also used to work in Community Care with an organisation that provided various programs for seniors, and on mentioning the cherries theory in the groups on social day or outing programs many said they were also aware of / used cherries to ease arthritis.

The cherries can be fresh or preserved, so there is no problem keeping up the regime of a dessert spoonful a day.

Good luck with your progress going forward.

[Homerec130]

My wife suffers from chronic pain as a result of failed spinal fusion syndrome (in simple terms). It is almost impossible for her to cut down her pain meds when there are no viable options - either medication, change of lifestyle, or natural remedies. Her doctors have been trying to find a way to reduce the opiates, but nothing has really worked. She has a spinal chord stimulator - that takes some of the edge off it but not a significant amount. Physical therapy (with folks specializing in spinal chord injuries) didn't help. Holistic medicine hasn't helped either.  At this point she is able to function day-to-day but we never know who the day will go until she gets up in the morning. Some nights there will be no sleep because the pain keeps her up all night - not rolling in pain, but enough of a chronic pain to stop her from falling asleep.

She has had several sleep studies and her sleep doc (who is actually certificated and trained in sleep medicine) told us she has extremely complex sleep apnea with most of it being medication induced centrals. She wanted to to an MRI to see if there was anything else going one, but while they battery and generator of my wife's stimulator is MRI compliant, the wiring and leads are not. When the replace the unit, they don't usually go in and replace wiring unless there is a specific issue.

My wife's current sleep doc is fantastic. She actually filed a complaint about her former doctor for the lack of records. My wife had been with the old doc for over a year and the only records they said they had came across on two pages - for 18 months of every other month visits. So it was back to square one which while it seemed like we were going backwards, she identified some issues which has resulted in my wife finally being treated for her sleep apnea. The current doc also runs her own sleep center so the folks there get what the doc wants and intends and we have gotten results back in less than a week. She involves the patient in determining the course of treatment and makes it a team effort. She realizes my wife will never get off pain meds and they have to be included in the equation. Prior sleep doc simply said, get off the pain meds and you won't have any more centrals. That was the straw that broke the camel's back and resulted in us firing her.

[Hydrangea]

Wow! Way to go on the self-advocacy and the detective work.

Have you heard of Naltrexone? It is a med that helps with withdrawl, I believe. They coincidentally found very low doses of it (1-3mg) significantly decrease pain in people with chronic pain. That's called Low Dose Naltrexone (LDN). There's also Ultra Low Dose Naltrexone (ULDN). You may want to Google it. Not all doctors know about it. But it can be extremely effective for pain, without the side effects.

I'm not giving medical advice; I'm just speaking of my experience.

[Dormeo]

Thanks for posting about this. I googled Buprenorphine respiration and found this medical study:

https://erj.ersjournals.com/content/42/2/394

Tinyobject, it is completely in line with what you've reported.