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I have now been on 10 mg methadone for 3 full months after having titrated up to that level over the prior 3-4 months. Although I still have minor breakthrough symptoms, they are manageable have stopped at 10mg due to side effects and the desire to keep my dose as low as possible.
However, my breakthrough symptoms are getting stronger and more frequent, with a corresponding decreasing quality of sleep each month. I believe I am developing tolerance. I understand 10 mg is not maximum dose, but at 61 years of age, if I further increase my dose and then develop further tolerance so quickly, I worry that I will too soon be at maximum dose.
I might have to be on methadone for 30 years, so I cannot afford for that to happen. In addition, the side effects are quite strong. I don’t want to keep raising dose, with a corresponding increase in side effects, only to need still more to control the symptoms.
I would greatly value your opinions.
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Mongolia2020
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Thank you Sue. I thought once I reached a level of reasonable control that it would stay same but perhaps I will go up to 12.5 mg and stay at that level.
I have no experience of methadone. However, as SueJohnson advises, it is normal to have a small upwards increase over the first year.What side effects are you getting? Most tend to settle over the first few months.
I had several side effects with Buprenorphine - severe nausea, panic attacks, racing heart, sweats. I took cannabis for the nausea, I take a small dose of pregabalin at night & it stopped the panic attacks & also reduces the heart palpitations and 10mg cetirizine helps the opioid sweats.
Thanks for your reply. Severe constipation but I have managed to get that under control, a vague sense of feeling unwell all the time, i need to lie down and have a short nap after eating, loss of appetitie & resulting weight loss, loss of cognitive function (that may be a permanent result from the severe sleep deprivation I suffered?) and a loss of energy and drive. Basically I used to manage a business with a lot of staff and I don't feel that I will ever be able to do that again. I can only work about 1/2 a day. I notice a real decline of cognitive function in the afternoon. BUT I CAN SLEEP (apart from the breakthrough symptoms which are increasing), so it is worth it. None of the symptoms in themselves are intolerable, but I am certainly not the person I used to be. I feel like I have aged 10 years. Am I perhaps hoping for a bit too much?
Maybe try some cannabis as it can stop the 'unwell' feeling & stimulate appetite.It can take months to adjust to new meds and strangely, sleeping properly did trigger daytime sleepiness for me. A weird result because when I used to only get 4 hours broken sleep, I was actually more 'alert'.
Thank you for sharing your experience with methadone. This forum has helped me with trustworthy information, but even more so from the great community support!
After treatment for RLS failed, except opioids, I was prescribed methadone about two years ago. I experienced situations similar to yours. Since there is no cure for RLS, my expectations are to manage the symptoms. My standard prescription is 10 mg of methadone per night. I make slight modifications in my dose depending on my current symptoms, but always staying within my physician's advice which is that I can take up to 15 mg per night, (which I rarely need or do).
My RLS symptoms fluctuate, depending on my activity level and and diet. If they are starting in the evening, I will take 5 mg at 7 pm, 5 mg at 11 pm, and if I have breakthrough of symptoms, another 5 mg at about 3 am.
If I do not have symptoms in the evening, I take 5 mg at bedtime and if I awake at about 2 am with symptoms, I take a second dose. If I have breakthrough symptoms earlier (like before 1 am), the next night I take 10 mg at bedtime. That often holds me until at least 5 am. At that point I just get up and start my day. In other words, I listen to my body and time my doses so that it is usually 10 mg per night, but occassionally it can be up to 15 mg.
Bupremorphine may last through the night, but it is difficult for me to obtain and more expensive.
In case of an accidental overdose, it is a good idea to keep a prescription of naloxone at home if using any opioid.
I occassionally use Smooth Move tea for constipation. It is more effective than anything else I have tried, including prescription drugs. It is in the grocery store and inexpensive.
I use half of a CBD sleep gummy for insomnia, which can accompany opioids.
I was recently experiencing increasing brain fog. I suspected the methadone. However, I recently had cervical vertebra fusion and the brain fog completely went away! However, brain fog and other presurgery symptoms returned after a few weeks. The surgeoen felt it was due to internal swelling. I was prescribed a steroid pack, and the brain fog disappeared again. I am still monitoring for brain fog to better understand the cause.
Find what works best for you to manage your symptoms, but work with your physician! Wish you much success!
As methadone has such a long half life I am very surprised that splitting the dose works. I would also be frightened of taking 15 mg one night and 10 mg the next because of withdrawal? But clearly you have experimented and it works for you. I think I might give it a try, but I will cut a pill into quarters and just have an extra 1.25 mg.
Also, how very interesting about your brain fog.
Thanks so much for sharing. It is so helpful that we can learn off each others’ experiences in a way that would not be possible any other way.
I've been on 10mg/day of methadone for 5 years with, overall, great results. However, it is fairly often that my symptoms vary from night to night. Sometimes, (rarely), I'll take an extra 2.5 mg to get me through a tough night, but usually I'll just grit my teeth and bear it.
Frankly, I'm afraid to even ask my prescriber for an upward adjustment of my dosage, considering how difficult it was here in the US to even get it prescribed. I see you're in NZ - are you confident that your doctor will raise your dosage without it eventually causing you any sort of a hassle?
Your concept of raising to 12.5 mg, but no higher, sounds eminently reasonable to me. So few people report tolerance at these low doses that you may find you won't ever feel a need to increase it any further.
Please keep us posted as to how you fare if you do try that suggestion.
In addition to what everyone else has said, a couple of thoughts:
I am at 8.75 mg of methadone daily, plus 600 mg of Horizant and a steadily diminishing amount of Mirapex - right now the Mirapex is at 0.9 mg and I continue to slowly taper it. I share your concern with side effects from both the Horizant and methadone; my experience has been similar.
First thought: As my RLS specialist sometimes reminds me, RLS can fluctuate on its own. So your current symptoms might not necessarily be due to tolerance developing with the methadone. RLS can be aggravated by sleep deprivation, as well. So if you do have to raise the methadone, once you get stable, some time later you may be able to lower the methadone again. Just something to keep in mind.
Second thought: Although it’s a lot of effort, if you haven’t already, you might try investigating other ways of reducing symptoms - e.g. tracking diet for triggers, investigating iron, etc. In my case, for example, in the last couple of months I have found that 600 to 700 mg of magnesium glycinate, taken daily in divided doses, greatly reduces flare-ups as I taper the Mirapex.
Thanks. Yes, I consider everything that goes into my mouth, eg no alcohol, low refined sugar, sulphites etc and I am now trialing magnesium glycine and iron bisglycinate as recommended on this forum. It’s often so hard to figure out a cause for a flare, but maybe there isn’t one?
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