The end of methadone and the end of apnea...

[Lizistired]

Ken I think you are one the right track. If you can eliminate the drug that is causing the side effect that's great! We seldom think of OSA as being a side effect.
Would you elaborate on "being a breath away from being diagnosed with COPD"?

[ameriken]

Ken I think you are one the right track. If you can eliminate the drug that is causing the side effect that's great! We seldom think of OSA as being a side effect.
Would you elaborate on "being a breath away from being diagnosed with COPD"?

Liz, before I realized I had sleep apnea, I knew something was going on because I was waking up with that scared, out of breath feeling. I went to the VA and they sent me for Xrays. The report stated that my lungs show signs of 'emphysematic changes'. They were short of calling it emphysema or COPD, but there were obvious changes in my lungs from earlier years of smoking. They sent me in for a pulmonary function tests and I proved I was still a blowhard. Anyhow, I've got to keep an eye on my lungs and be more protective about what I breathe.

[Lizistired]

Ken I think you are one the right track. If you can eliminate the drug that is causing the side effect that's great! We seldom think of OSA as being a side effect.
Would you elaborate on "being a breath away from being diagnosed with COPD"?

Liz, before I realized I had sleep apnea, I knew something was going on because I was waking up with that scared, out of breath feeling. I went to the VA and they sent me for Xrays. The report stated that my lungs show signs of 'emphysematic changes'. They were short of calling it emphysema or COPD, but there were obvious changes in my lungs from earlier years of smoking. They sent me in for a pulmonary function tests and I proved I was still a blowhard. Anyhow, I've got to keep an eye on my lungs and be more protective about what I breathe.

Thanks Ken, I think it's just a matter of time for me too.

[Roger2]

They were short of calling it emphysema or COPD, but there were obvious changes in my lungs from earlier years of smoking. They sent me in for a pulmonary function tests and I proved I was still a blowhard. Anyhow, I've got to keep an eye on my lungs and be more protective about what I breathe.

Hi Ken, sorry to hear about this problem.

I can certainly emphasize with it from my own personal experience and my lung doctors at NJ believe also that my problem with COPD originated with 27 years of smoking, the last 15 heavy smoking. The last 10 years I was chain smoking most of my waking hours, lighting the next cigarette off the last one. I was then using 3 to 3 1/2 packs a day. From three days of testing at NJ they felt that I had managed to destroy roughly 50% of the surface of my lungs.

The onset of problems however seemed to be gradual and would wake up in the night short of breath I did not have serious problems until 2003 when I would be just walking in a meadow hunting grouse and be out of breath in less than 50 yards. That is when they started me on O2 – 24/7. It will get somewhat worse with age as lung deterioration is part of the natural ageing process, at least as I understand if from what the pulmonologists told me.

I will keep you in our prayers but you also need to keep a positive attitude and do resist the temptation to become a recluse because of it.

pax

Roger

[ameriken]

Hey everybody, I hope you are all well?

So, here I am on track demethadonizing myself, down to 5-10mg/day. Comparing last night’s report (below) to the one in the first post documents my respiratory system is returning to normal. I don't use the O2 anymore as it never helped and I sleep pretty well without it.

Over the past few weeks as I reduced my intake of methadone I also reduced my ASV pressures and have watched my AHI stay consistently under-5 even as I lowered the pressure. My PTB's are almost near-normal again (compared to the view of the Marianas Trench in the report in the first post). I am almost at the machines minimum pressures...last night was IPAP=3 and EPAP=4. (At 2 and 4 it felt like the EPAP was stronger than the IPAP).

How do I feel? Well, somewhat much better and somewhat not. My sleep and night breathing is far better. I can actually work now, engage in creative thought and discussion, focus on work, deal with stress, etc.

On the other hand, pain, which is what started me down this road many years ago, has returned. Methadone was the most effective damned pain med I ever had in masking almost all the fire I had throughout my body on a 24/7 basis. But now that I am below a therapeutic level, the pain is back and is noticably louder than it was 3 years ago. I wake up with it radiating from my entire lower back throughout my whole hip section (especially in the joints) and down through both thighs and into the knees. Just one large constant radiating fire throughout those sections. Today, while I am mentally better and can function, the pain gnawing away at me is a severe drag on my entire physical, emotional, and mental wellbeing. It wears on me to the point that I am fighting fatigue again, only this time from pain and not from apnea. If only I could get rid of this pain and fatigue from my life. Nevertheless, MMJ does a great job on the pain and it also combats the fatigue, but it is not 24/7 relief like the methadone was. I have maybe 4to 5 hours of relief before I have decide what to do about it again. Despite that caveat, other than the methadone MMJ is still better than all the narcotics ever made, and better than the liver and kidney destroying ibuprofen and acetaminophen. And MMJ has no harmful side effects. I also have a cannabis oil that I can rub on my back or hip joints, and it too works great in dulling those areas. I am still amazing at our war on drugs today...the drugs that kill us are legal (like the ones with the 'suicidal thoughts' side effects), and the one that can't kill us is mostly illegal. MJ is a Schedule 1 drug, which is classifies it as worse than meth and cocaine. I'm still trying to wrap my brain around that one.

Anyhow, I will be meeting with my sleep doc to meet him and so we can look at my sleep therapy and decide which way to go from here.

A final thought.

Looking back at everything I’ve gone through with methadone and sleep apnea, no one has an answer or even an understanding as to what exactly methadone was doing inside my body. Sure, they diagnosed my apnea as “hypoventilation caused by or aggravated by methadone”, but do they really know any more than that? I was using one of the best sleep apnea machines available along with added oxygen support. And when I stopped breathing it was inflating and deflating my lungs, just like it is supposed to, but was I really breathing? The reports showed my AHI was normal. Yet, though I no longer woke up feeling like I was run over by a loaded Mack truck, why I did still wake up feeling like I was run over by an empty Mack truck?

I suspect that not only does methadone shut down the trigger to breathe, but I suspect it was screwing up the exchange of gasses in my lungs: either my body was not delivering O2 very well, or it was retaining too much CO2, or something else inside that exchange and delivery. Something just wasn’t working properly and it was beyond the capabiltiies of the ASV and O2 concentrator.

The methadone initially gave me 24/7 relief and being painfree improved the quality of my life. But after several months, methadone subtly created a problem that my wife and I were convinced would kill me within 2 to 3 years, even while using the ASV.

Anyhow, here is last nights report…quite different from all of the above. Thanks for reading.

[Eureka]

No advice to give. Just a lot of admiration. My thoughts are that we are our own best advocates. We can use a lot of help from the medical profession and therapists etc., but in the final run, we must take charge -- and you are doing that. Blessings on you.
CLW

[sandman19]

Blessings to you!

[Kody]

Glad to hear your still working on things, and your PTB's are so good these days. Sorry to hear it's such a balancing act between pain and the med's, kind of a rock and a hard place deal. Maybe your Dr. can come up with another alternative to the methadone to add to your MMJ regiment that won't cause more problems. Best of luck to you as always Ken and keep us informed with how your progressing.

[Lizistired]

Hi Ken,
I'm with you on MMJ. I wouldn't hesitate. The problem is big pharma.
This is an interesting documentary I saw recently. I was suprised that the Federal Government supplies MMJ to remaining members of an early program.
https://www.youtube.com/watch?v=kq9xpUB ... re=related

I don't know if you have followed the low carb threads here. A running theme is a reduction of pain. I don't know what causes the inflammation... Specific grains, sugars, or just excess insulin response, which I tend to think is poison. Since 1987 I have suffered from chronic back, hip, knee, and sciatic pain and cutting back on starches, sugars and processed foods has given me more relief than anything else ever has. I've only had to get my cane out twice in the last year and that was for brief episodes. Just suggesting it as something else that might help give you some relief.
Liz

[makezmuzicAgain]

Thanks for starting this tread. I'm struggling with the added sugar addiction that goes alone with methadone. If you look up my family name you will see diabetes hacking off limbs on our family tree. And I fear of upping my dosage since my pain is escalating. I have COPD (from 1st and 2nd hand smoking a asbestosis), costochondritis (a chronic inflammation of the ribcage), nerve damage from an Open Lung surgery, and benign mesothelioma (was a industrial glass blower for 12 years)....oh, and sleep apnea. I have a tendency to go all out. My RX is for 30mgs of methadone a day, but I rarely take that much. If I did I would be nodding out all day. I also use Lidoderm patches. It usually takes up to three of those puppies to take the edge off. I'm going to a Green Clinic next week. They are a holistic/ naturapathic clinic. I have found relief for my fibromyalgia with homeopathic remedies. Am a believer of vitamins, supplements and acupuncture. I know that neither methadone or MMJ will take away ALL my pain, I just need to be able to keep it at bay while staying lucid.

Your post is very encouraging. I now know I won't shoot for going off the methadone completely, just keeping the dose down to 20-25mgs. Not bad for 7 years. I refuse to go the route of oxycodin, and vicodeine makes me evil. Considering my health issues, I will be on pain meds for the rest of my life. And they will have to be increased as I get closer to "end of life" issues. But for now, I got stuff to do, and places to go. It would be great if I could lover my VPAP pressure. When I wake up every morning my rib cage is screaming with pain.

Anyway, thanks for your post. Peace & comfort to all. MM

[Mary Z]

How long after reducing the methadone did it take for you to see a positive result in your numbers? I have never been able to get my numbers in a normal range and my doctor thinks it's due to my meds- antidepressants and a mood stabilizer which are critical to my well being. About a year ago I began taking morphine 30 mg bid and vicodin prn for chronic back and leg pain. My numbers didn't get any worse with the narcotics. When I recently halved my dose for about two weeks I didn't see any improvement with my numbers. Though with an ASV for the last month my AHI had gone from an average of 28 to an average (30 day) of 10.9 (mostly hypopneas before and after ASV). I think it will take at least three months to feel the full benefit of the ASV. Maybe I didn't give reducing the narcotics enough time.

[ameriken]

Hey everyone, thanks for the replies. I'd like to answer everyone, but since I am time limited let me go to Mary Z....

Mary, I was on as much as 100, but averaged about 60-70mgs a day. I initially started dropping about 10mgs per day and after about one to two weeks I noticed a big improvement in my PTB's, which were almost always between 40% adn 80%. They creeped up to 80 and above, then 90 and above, and now they are consistently between 95 to 98%.

My AHI has almost always been <5, so AHI is not an issue for me. My problem is I really haven't felt better and I think methodone is doing more than just stopping my breathing: even when I am breathing I don't think the exhange of gasses is working properly. Whatever it is, it just ain't right.

I don't know if everyone who uses any narcotics can get sleep apnea from it, or if it is more specifically methadone. In my case my sleep apnea appears to be almost solely because it is a side effect of methadone.

So, if you are reducing, give it about 2 weeks to see how your numbers improve. Good luck, go slow, and don't give up! I've been doing this reduction for nearly 2 months now.

[ameriken]

Glad to hear your still working on things, and your PTB's are so good these days. Sorry to hear it's such a balancing act between pain and the med's, kind of a rock and a hard place deal. Maybe your Dr. can come up with another alternative to the methadone to add to your MMJ regiment that won't cause more problems. Best of luck to you as always Ken and keep us informed with how your progressing.

Hey Kody, thanks, things are progressively getting better. Hopefully in the next few months I may be off the machine (fingers crossed).

I saw what you wrote in another post about how you're starting to get some good benefit, and about you cleaning up the house and getting all that work done. That is really awesome, congratulations! Just one question, my house is in the Denver area, how soon can you get here?

[chunkyfrog]

The best of luck to you guys; and thanks for keeping us apprised on your progress/research.
Others will benefit from this.
You are heroes.

[JohnBFisher]

... Moral of the story: be very wary of opiates generally, methadone specifically. ...

I am so very happy that you have been able to scale back on your use of methadone. Not everyone can drop their use of opiates. Here's hoping you are able to continue this trend. If your back pain flairs, perhaps you will be able to use it until the pain decreases. Thus, though your unit will need to do more work, you will know it is for a short period of time.

Yes. Opiates kill. But before they kill they depress the normal respiratory drive. And that - as you've discovered - can leave you feeling miserable. I'm just really happy for you that you could make this choice and move forward with it. Here's hoping all continues to go well.