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

[makezmuzic]

Hi Ken. Just touching base to see how your are doing on less methadone. I was wondering if you had any tips for detoxing off it. I'm on a low dose, but if I get off schedule with my doses I start to sniffle and the stomach cramps, muscle spasms, headache comes on with a vengeance. How did you deal with with-drawls, if you don't mind me asking? Did you have medical support while cutting your dose? I really want to get off this stuff. Methadone is an inflammatory! Here I am are taking it for the pain caused by inflammation in my thoracic tissue and it's part of the problem?!!!! Geeeez! Thank you.

[ameriken]

Hi Ken. Just touching base to see how your are doing on less methadone. I was wondering if you had any tips for detoxing off it. I'm on a low dose, but if I get off schedule with my doses I start to sniffle and the stomach cramps, muscle spasms, headache comes on with a vengeance. How did you deal with with-drawls, if you don't mind me asking? Did you have medical support while cutting your dose? I really want to get off this stuff. Methadone is an inflammatory! Here I am are taking it for the pain caused by inflammation in my thoracic tissue and it's part of the problem?!!!! Geeeez! Thank you.

I just started slowly, initially dropping 10mgs and then staying there for a 10 to 14 days, then drop another 10mgs, stay there for 10 to 14, just continue like that. When you get down to 30 or 20, then drop by 5 mgs and stay there for a while. Right now I am at 10 and it's the hardest to break away from, both physically and mentally. I went down to 5 and got withdrawal symptoms as well, so I bumped back up to 10. For me, I would feeling extremely tired when I got withdrawals.

I've heard some folks recommend it could take as long as a year to completely detox from it. Whatever you do, just take it slow and easy, a little at a time so that if you feel the withdrawal symptoms it should only be slight.

Also, I did this with no medical support, I've been on opiates for years so I'm fairly familiar with them and getting off them. Again, just go slow and easy, drop a little and stay there, drop a little and stay there. Take it easy, underdosing can be almost as bad as overdosing. Good luck!

[ameriken]

So, here I am now, a completely different person than I have been over the prior few years. I know I may be repetitive here, but I had no clue how badly methadone was on my respiratory system. Just over 2 to 3 months ago, I was sleeping 8 to 9 hours per night with higher pressures and an O2 supplement, an AHI of 5 and under, and though I was able to function it was very minimal. It was still not a quality life. If I got less than 8 hours sleep, I would be extremely tired every day and would require an afternoon nap.

Today, my machine pressures are low, AHI's running 5 to 10, I get 6 to 7 hours of sleep, yet have not needed to nap in over 2 months. I wake up around 720 every morning instead of 830 to 9.

I'm down to 10 mgs a day and feel like I've never felt before...literally. In fact, I feel so good that I notice how good I feel every day as if feeling good is such a new experience. I take walks every other day, I have my sense of humor back, I can concentrate, function, laugh and joke, participate in conversations and more. My wife has noticed the difference as well and tells me 'I have my husband back'.

Regarding the walks, she had been begging and pushing me for a long time to try to break the sedentary life I was living and go out and get some kind of exercise. I wouldn't, couldn't, and didn't. Today, I just get up and go out the door and take a long brisk walk. Despite my back pain and initial shortness of breath, I can push through it with strength and energy and can feel the difference. My lung function is better, I'm getting stronger and my walks are getting faster and longer. My back is also bothering me less.

I can look back now and see how badly methadone, even at therapeutic levels, was destroying my life and how it nearly killed me. Last week the NP at the VA offered another kind of med that is supposed to work on sciatic pain and I told her no, not now, not yet, hopefully not ever. This experience has soured my desire for prescription anything and I have a new caution of prescription meds.

As I've said earlier, the methadone did something to my respiratory system that was beyond the capabilities of the ASV. I still use it because I still have events, but now with a minimal amount of methadone, I truly feel like I've been given a new lease on life and am enjoying every day in a way that I've never appreciated before.

Thanks for everyone here that has provided help and info and support to myself and others.

[SleepyToo2]

What an amazing story - thanks for sharing. One of the problems with chronic pain is that it becomes the new "normal" for your body - you need the pain-killers more and more to keep it under control. What you have probably done is break the vicious cycle. The reduction in methadone dose, the better sleep, and the exercise will all contribute to the healing process in a way that no medication ever can. It takes a lot of will-power to be able to say "I am going to reduce the dose of my pain-killer and live with it." To keep doing that for as long as you have is nothing short of incredible. Please keep doing it, and I am sure you will be able to experience a pain-free, drug-free life (or almost so). Best wishes.

[fredboy]

As my doctor explained to me, any sedating medication can make apnea worse. I take a benzodiazapine every night and Im sure it's a contributing factor as its a mucscle relaxant as well. Opiods surely fit this profile too.

When I had my sleep study, I failed the first one due to all night insomnia. The doctor was forced to give me phenegran
to ensure I could make it through the next attempt with success. He always felt the results were skewed but what could we do? This was ONTOP of my benzo!

I am not as familiar with methadone, but look to see what muscle relaxing properties it has, if any

[Lizistired]

That's great to hear Ken. I hope you continue to improve.
Pharma is a scary slippery slope.

[Kody]

Wow excellent news Ken, glad to hear your still improving!

I walk with my Dogs 6 days a week for an hour and a half, rain or shine. Reason being the physical part is great, but the Mental boost really helps me tremendously, almost like a drug itself. Have suffered with lower back pain, however probably nothing as significant as yours. Have noticed though if I don't walk all weekend, besides feeling a little down, by Monday morning my back is very stiff and sore. So for me, I HAVE to keep moving.

Your story is very inspirational and I hope you continue on your path to improved health. Keep on Truckin' and keep us updated.

[ameriken]

. But there was one major problem: I wasn't feeling better with the ASV, regardless of my AHI. Even with the addition of O2 in December, I still would not feel better. Could it be that the methadone is not only causing hypoventilation, but is also screwing around with the exchange of gases (O2 to CO2) when I breathe, or is it doing something else that is far beyond the ASV capabilities to handle?

Hello everyone. Another member pm'd me an article he found regarding opiates and sleep apnea which conclusively confirms my above suspicions. The ASV cannot completely overcome the CSA's induced by opiates.

From the study:

The major conclusions from this study are that in patients with sleep disordered breathing associated with chronic opioids, CPAP seems to worsen sleep apnea, and ASV, as applied within the original recommended parameters, is not sufficient therapy. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2542501/

I am almost completely opiate free and my nighttime breathing is almost completely back to normal. In addition, there is something odd that my wife noticed: she said "do you know that now you almost never take any kind of medicine for your back?" And she is right. Since cutting back on the methadone, I noticed initially I had more back pain, but now my spasms and sciatic events are few and far between. Go figure that one out.

[Sir NoddinOff]

I don't have anything of a technical nature to add to this thread, but it sounds like you're doing better off of methadone... tapering off over a month or so was a good move. We wish you lots of luck addressing your pain and sleep issues - please report back to us about your continued 'happy baccy' experiment. I don't think there's any stigma here about that... at least I hope people here aren't that shallowly biased against it for medical purposes. But then I live in California

[kteague]

Your story is such a value to those struggling with the dilemma of using opiods. I realize that sometimes these meds can be a necessary evil. Lately it seems that methadone is making its way into mainstream treatment for severe RLS and that scares the mess out of me. I know that RLS can destroy a life, but I fear this treatment could add so many layers of problems that the dispensing docs are not prepared to identify or treat. Thank you for sharing your story.

[archangle]

Good luck.

If you do find yourself needing meds again, consider pushing your doctor to try some other pain meds, even some of the less common or more dangerous meds. They're often a little too reluctant to try some of the stuff, but not breathing is a particularly bad side effect.

Just watch the side effects carefully.

Did you ever try a chiropractor? I don't believe their mumbo jumbo, but I believe they can help back pain in some cases.

[Starlette]

Hey there Ameriken.

Your testimony only confirms what we all know to be true...We're our best health advocate and if we don't take charge of our own healthcare, no else will.

My only hope is that you'll continue to come to our monthly meetings: 1) I suck at promoting our meetings. You have better finesse at this than I; 2) We already have someone in our group that has reached cpap nirvana. We need someone who has weened off/conquered the tough prescriptions and may very well not need xpap. We need support from both sides. If you remember, there is someone in our group that could certainly use your wisdom in this area.

I don't know if it has been suggest that you may want to do another sleep study to ensure all is well, just a thought.

Starlette

[GatorLord]

Ameriken, I'm so happy for you and your family! You've done the heavy lifting, so know that the hard part is behind you. I'm also doubly happy that you're getting answers and working hard before the meds wreck major pieces of your life.

The rest of this note is for Ken and people in pain or love someone in constant pain...

I can relate to your story and as such, may be able to offer you some encouragement and helpful options going forward. I have been a pain management patient for the last 12 years. I know how those meds slowly work up until you're on frightening doses of morphine, dilaudid, methadone or fentanyl. It's scary to think that if someone took just one dose of your meds, they would die of respiratory collapse.

I'll spare the sordid details of searching for answers, but as you know, agony makes for a brutal taskmaster. Your comment about the burning quality of your pain made me think that my answers may indeed help you. I have a severe form of Myofascial Pain Syndrome in which painful trigger points develop in the skeletal muscles...and I have them in all of my skeletal muscles...and they hurt, a lot. I can deal with the muscle pain, it has almost become an unwanted part of me, numbing it, numbed me. But the myofascial pain has an evil twin, which is much more tormenting...burning pain. Trying to quell that wrecked every part of my life. It simply refused to be silenced. However, hope prevailed or we wouldn't be writing you now.

First things first, I don't know what to advise you on your scoliosis. There are a number of primary causes. Secondarily, scoliosis almost universally causes trigger point pain in the back and gluteal musculature. This is because the brain instinctively tries to relevel the eyes to the horizon and this forces a compensatory tilt in the upper thoracic and cervical spine to 'correct' for the scoliosis. This continuously shortens some muscles and lengthens their counterparts...setting them up for the development of painful trigger points. The good news is if you know the cause, you will with guidance be able to find which muscles have trigger points and then how to deactivate them. An excellent book on the subject, complete with a free website, is The Trigger Point Therapy Workbook, by Claire Davies. Phenomenal resource!...and less than $15. http://www.amazon.com/Trigger-Point-The ... nt+therapy Eliminating these trigger points will go a long way to resolving a lot of long standing enigmatic pain. Don't expect most docs to know anything about them, the muscles do not have their own specialty despite making up the bulk of our bodies and generating at least 3/4s of pain complaints attributed to everything under the sun, but muscle.

As for the sciatic pain, reference the workbook above, as well as looking into 'Piriformis Syndrome'. The sciatic nerve passes next to, and in some cases through the piriformis muscle deep in the butt. The piriformis can compress or even constrict the sciatic nerve when shortened by trigger points, causing sciatic nerve pathologies and pain. Also look into 'Neural Flossing', a stretching technique designed to free the sciatic nerve of adhesions and allow it slide freely again. Also look at resolving trigger points in the gluteus minimus, another painful sciatica symptom producer.

I found the answer to the burning pain quite by accident. I was trying to improve my energy levels since the opes had me in a funk. I had read that Magnesium Bicarbonate was the mitochondrias preferred compound of magnesium...and that magnesium protected the mitos from calcium damage. So I found a recipe for making the MB water online. Its simple and dirt cheap...just put 45ml of plain or generic Milk of Magnesia in a liter of very cold carbonated water, shake and refrigerate 20 min, shake again, wait another 10 min or so, dilute into 2 gals tap water, viola! 28 cents a gallon sourced at Wal-Mart.

Within 4 hours of drinking my first glass of the MB water, I knew I was coming off the narcotics...it worked that well, that fast. I tapered off fentanyl over a couple of weeks and have been off ALL pain meds ever since and that was about 9 months ago. The pain it helps the most is the burning pain. All the money in Fort Knox couldn't buy what a few cents of that water did. I have my own carbonation system now and plenty of MoM in the cupboard and there's always 2 gallons cold in the fridge. Amazing stuff.

If you find that the MB water helps you the way it did me, you can test a simple theory for the burning: Alkalize. In my case, I'd been using lots of magnesium to relax my tense, painful muscles, and while it helped, it wasn't the 'get on your knees and thank God' relief I got from the MB water. So it must've been as a 'bicarbonate' it was a higher pH than my blood. Since the body uses CO2 and bicarbonate to regulate pH, I decided to test whether acid was burning my nerves and muscles by increasing the bicarbonate side of the picture and holding the magnesium constant. So, I added a little sodium bicarbonate (baking soda) and got even better relief...then I tried potassium bicarbonate in the MB water, and low and behold, better relief still. That is now my secret. MB water in coffee, tea, drink mixes, etc...and I'll add a little potassium bicarb if I've got some pain or burning. Almost never fails. I drink about a gallon a day, but don't start with that much. Start low and go slow, maybe 8 oz twice a day away from meals at first, then let bowel tolerance dictate when you can increase and just dose to effect at some point. The magnesium will be doing all kinds of helpful things, but that would take another book.

I hope this helps you brother. Regardless, I'm proud as hell that you've done what many could not. To the rest of your life.

[chunkyfrog]

For those too young to remember:
http://www.stlyrics.com/lyrics/easyride ... enwolf.htm

[ameriken]

So, it's been a long time since I've been here, I hope everyone is doing well.

An update: I've been methadone free since Dec 2012, it took me 9 months to detox from that killer med. Though my centrals were completely gone, i still wasn't getting the best quality sleep. Much much better, but still not what I thought it should be. I knew I was probably still dealing with obstructives.

The ASV prescription settings weren't cutting it (though they never did, not even for the centrals) so I tinkered with the settings from time to time for the next year and a half trying to find better settings (I know, may God strike me dead for screwing with the prescription settings ). This spring I finally found something that brought me to about 85% of where I think I should be.

Anyhoo, tired of screwing around with the machine I finally decided to call the VA. They did an oxymetry and found desats to the mid to upper 80's. I guess they can also see some kind of pattern in the oxymetry that indicates I still have apnea. They set up another split study. Long story short: zero centrals. The tech did say I still have airway resistance and arousals throughout the night, but the apneas did not reach the guidelines where he was able to put me on a machine and titrate.

So last week I got a call from the sleep Doc who says since I'm still having the resistance and arousals, and he felt I could benefit from a CPAP. He is ordering some kind of self-titrating machine. Don't know anything about the machine yet, I'm waiting to hear from the DME. Finally getting off the ASV!

Long story short: 3 or 4 years ago when I was on methadone for my back pain, I felt so crappy it was like I was slowly being lowered into the grave and I really didn't think I'd live this long. I still have problems with scoliosis, mostly in the form of sciatic pain in my low back, right leg, and more recently a really sharp pain in my right hip joint that feels like someone inserted a bowie knife into the joint. Still, I now refuse to go on any prescription meds and will continue to do for as long as I possibly can. Thank God for marijuana (and thank you Colorado for legalization) which I use when the pain in my back leg and hip gets severe. A few drops from a Marqaha sativa tincture gives me almost instant and long lasting relief.

Here's the proof: what I am really most excited about and proud of, is after years of mostly sitting on my ass dying, my wife and I and some friends went up to the mountains and completed a challenging 6 mile round trip hike at an elevation of 10,500 to 11,000 feet. I was nervous because I thought my back pain and the lack of O2 would knock me out early. In fact, just as we started to exit the parking lot to the trail, my sciatic pain that knife-in-my-hip-joint feeling kicked in that almost ended my journey right at the start. I went back to the car, took a few drops of the MJ, and within about 60 seconds the pain was gone and we hiked up and down the rocky trail for the next 5 or 6 hours. My wife was completely blown away: it was my younger and healthier friends who had trouble trying to keep up with me. I had no trouble breathing or climbing the inclines.

I feel alive again!