Methadone Side Effects Question

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leggo_my_legs
Posts: 307
Joined: Sun Oct 16, 2016 12:29 am

Methadone Side Effects Question

Postby leggo_my_legs » Thu Jun 22, 2017 12:46 am

I got brave again (read: desperate :D ) and tried the methadone again.

I started on 2.5 mg, then 3 days later increased to 5 mg which is the prescribed dose. For those who have tried methadone, did you have a sedation effect the next day? If so, how long did it take you to adjust to it? Or did you not adjust to the sedation effect?

I have a sedation effect that kind of comes and goes throughout the day. I have the pupil constriction (I'm breathing and haven't OD'd) but the pupil constriction bothers me. I still have it now, and I took the med last night. That's not cool. Does the body adjust to it? I am going to call the pharmacist...

leggo_my_legs
Posts: 307
Joined: Sun Oct 16, 2016 12:29 am

Re: Methadone Side Effects Question

Postby leggo_my_legs » Thu Jun 22, 2017 1:11 am

That's just it. I am FURIOUS right now. I am so angry I have this dumb condition. I am so angry it's so debilitating. I am so angry the methadone is not looking like a good medication for me. I can't drive a car on this medication...

The pharmacist said "eye effects" are not a known side effect of this medication. Does he even know what he's talking about? Isn't pupil constriction a potential side effect of all opioids? He doesn't even seem to know about the long half life of methadone.

Excuse me, I'm not rational right now. Just feeling done with all this. Do I have to go to medical mj and risk possible future employment problems? I am definitely going to try kratom.

I have no life anymore...no social life...just go to work and come home (today I was lucky enough to be working from home).

Rustsmith
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Re: Methadone Side Effects Question

Postby Rustsmith » Thu Jun 22, 2017 2:19 am

I didn't/don't have any of the side effects that you mention. However, when I initially started out, I was given 5mg and was told to ramp up to 7.5 and then 10mg after a week. Everything was fine until I was at 10mg for about 3 days. I realized that I was sort of zombie/drugged. It wasn't that I was high or even mellow like from THC. I just wasn't me and I couldn't concentrate or more than one simple thing at a time. Fortunately, I realized what it was and immediately dropped back to 5mg. I let me doctor know what I had done - and why. I have been at 5mg, with her blessing, ever since.

Since that time I have heard from her and another neurologist that 10mg is the "standard" starting dose for RLS. Maybe, but not for me.

So, if 2.5mg was controlling your RLS, why go higher? Think about cutting it back and let your doctor know what you did and just as importantly, why you cut it back to less that what was prescribed.

As a side benefit for me of cutting it back, it gave me an immediate stash that gives me a cushion when my refill prescriptions are late or when the mail order pharmacy is late delivering them.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

leggo_my_legs
Posts: 307
Joined: Sun Oct 16, 2016 12:29 am

Re: Methadone Side Effects Question

Postby leggo_my_legs » Thu Jun 22, 2017 8:54 am

Hi Rustsmith, thanks for your experience I appreciate it. That's how I feel on it, like you did with 10. I don't think the 2.5 was doing it though. :-/

ViewsAskew
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Re: Methadone Side Effects Question

Postby ViewsAskew » Thu Jun 22, 2017 7:24 pm

I find that timing is SO important on this drug. It takes at least 30 minutes to start to work, but up to 4 hours (depending on the person) to achieve full effect. For me, I take about 1/4 of my dose about 8 hours before I go to sleep, to cover the symptoms in the evening, say 6 PM. Then I take 1/2 of my dose about 4 hours before bed. Then, I take the last 1/4 about 30 minutes before bed.

When I do not do this. I sleep about 12-14 hours. When I do it this way, I am a bit tired when I get up, but can get up in 8-9 hours and be functional.

That said, I had a VERY hard time working doing this. I also have symptoms about 18 hours out of the day and am considered refractory - very hard to treat.

My best, very best, combination is about 40% methadone, 50% pramipexole and 10% kratom. Each one positively counteracts the negatives of the others. Still, not sure I could work full time, especially not a 9-5 job because my sleep is SO screwed up over years of not having effective coverage, augmentation, etc. I am better than I have been in 12 years - I am getting to sleep between 12:30 and 3 these days. It was between 4 and 7 AM for a long time.

Mostly, please accept my virtual hug and camaraderie. I have felt as you sound more times than I would think possible.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Location: Palo Alto, California

Re: Methadone Side Effects Question

Postby stjohnh » Thu Jun 22, 2017 7:51 pm

Ann, exactly how does the kratom help?
Blessings,
Holland

ViewsAskew
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Location: Chicago

Re: Methadone Side Effects Question

Postby ViewsAskew » Thu Jun 22, 2017 9:19 pm

In two ways - methadone alerts me initially. While taking it the way I do reduces it, it still can be an issue. Pramipexole causes me to awaken frequently throughout the night - if I take it alone, I start waking up after about 3 hours with increasing frequency until it is every 5 minutes or so. The kratom keeps the lights out, but unlike gabapentin, it doesn't last for many hours. I take some about 15 minutes before bed, then again if/when I wake up after 3-4 hours sleep.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

leggo_my_legs
Posts: 307
Joined: Sun Oct 16, 2016 12:29 am

Re: Methadone Side Effects Question

Postby leggo_my_legs » Fri Jun 23, 2017 8:10 am

Ann,

Thanks so much for your understanding and kind words. I felt like the methadone was slowly being released throughout all of the next day...it was too much. Maybe I'll try it again another time but for now I'm going to try some other things.

I've been vulnerable to feeling agitated lately...it's been over 100 degrees every day here since last Friday and I hate the heat. Even at night it hardly cools down and it's muggy.

The only way I'm able to hold down a job right now is that I have a very flexible schedule and also can do some work from home. Without this, and if I had to go into the office every day and be around the same people for 8 hours, I just wouldn't make it. Flexibility in jobs from here on out is non-negotiable for me. In other words, I'm not flexible about having flexibility! :lol:

I asked my doc if the PMLS is getting worse because I'm getting older or what. She said it varies across the lifespan and waxes and wanes. Maybe I already said that on here...my memory is shot.

ViewsAskew
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Location: Chicago

Re: Methadone Side Effects Question

Postby ViewsAskew » Fri Jun 23, 2017 6:41 pm

I do not think that any of us on the more severe end of symptoms are on the same treatment plan - which is somewhat startling when you think about it! Finding what works for each of us can take a lot of resources - mental, physical, monetary, etc. Here's hoping you find the one for you - and sooner than later. And here is REALLY hoping it cools off!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Methadone Side Effects Question

Postby Joanie60 » Sun Jul 23, 2017 5:49 pm

Looking back, I think it took me a good couple weeks if not longer to work through and beyond the side effects of methadone (including nausea...that one almost did me in) but I was determined not to complain to my doc. I knew if I did, she would try something else. And there was nothing new left to try!!! Which means I would be back to the beginning (Ropinerole probably, I hate that sh**). So I just buckled down and plowed straight ahead. I was so relieved to not have jumpy legs, I just put up with the rest of it.

Do you think you can try that? As has been mentioned, timing is HUGE! I have to get ahead of the curve. If I wait till symptoms begin, I am too late. I have RLS 24/7 so I take first dose about an hour after I wake up and second, smaller dose, around 5:00 or so. It took a lot of experimenting to get dosage and timing right.

I think it is also a state of mind. I learned here to shoot for 90% relief. I am not going to get 100%...so I've learned to be grateful for 90%...that was the most beneficial thing the moderators (SHOUT OUT TO YOU ALL!!!) taught me. To get 100% relief would require ever increasing milligrams of whatever I am on at the time...until I max out and ruin my ride with that med and move on to another..and another..and another...and OOPS, I am at the end of the road (methadone), so I would have to start again.

What a ride, thank heavens I have all of you with me!!!

Hugs Joanie
PS: This heat is a KILLER....very hard to stay cheerful when I feel like screaming at everyone and everything.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Methadone Side Effects Question

Postby debbluebird » Sun Jul 23, 2017 7:02 pm

I only had nausea for the first two or three months, but it was pretty bad. I got through it. I have 5 mg tabs. The most I take is two twice a night, 5 pm ish and around midnight or 1 am. If I need more, then I take the kratom. Lately, I've had to use the kramtom too. My PLMs have continued to get worse.
I would also find a different pharmacist, if only to ask questions. I know how hard it is to get stuff filled.

ViewsAskew
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Re: Methadone Side Effects Question

Postby ViewsAskew » Mon Jul 24, 2017 1:38 am

The itching almost did me in. When I stop it or decrease it periodically and then increase it, it comes back with a vengeance. I keep a long handled body/skin brush by the bed so I can rub my skin about raw.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Methadone Side Effects Question

Postby debbluebird » Tue Jul 25, 2017 4:58 pm

I itch if I take more than I do now.

leggo_my_legs
Posts: 307
Joined: Sun Oct 16, 2016 12:29 am

Re: Methadone Side Effects Question

Postby leggo_my_legs » Tue Aug 01, 2017 2:55 am

Hi everyone, thanks for your comments and ideas. I stopped the methadone. The good news is that I had been off the Norco for awhile, so everything has reset and the norco is working again for me, at least for a little while...

I will probably try the methadone for a longer stint when the Norco stops working. I don't think the Norco will be effective very long but I'm glad I have it for now anyway. :?

leggo_my_legs
Posts: 307
Joined: Sun Oct 16, 2016 12:29 am

Re: Methadone Side Effects Question

Postby leggo_my_legs » Tue Aug 01, 2017 2:57 am

By the way, on the subject of the heat...here in CA on another heat wave. This has been such a hot summer! So many days over 100, we barely get a break now and then. It's 102 today. So done with it.


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