Pregnant and Miserable - Back to Methadone??

RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
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Postby Neco » Mon Apr 11, 2011 5:05 pm

Congratulations, hope everything continues to go well for you

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Postby fraujoolie » Thu Sep 01, 2011 5:39 am

I just wanted to follow up: Methadone and breastfeeding is compatible.

Jax is now almost 5 months, 18 lbs, 24" long. Totally normal developmentally. Won't roll yet (legs too fat and short?? takes after his dad, lol), but sits up unassisted and will pull himself up onto his feet, if you hold his hands. Is laughing and babbling, grasps objects and everything goes straight into the mouth. He had his hypospadias repair done in the beginning of August, all went well (totally unrelated to rls/methadone, but a surgery nonetheless). Happy little butterball. Exclusively breastfed and I take 10-15mg Methadone daily. No problems.

I wish I could post a picture for you all! Ah, you can message me if you want a cute baby fix.

Bottom Line: Don't let anyone tell you that you have to choose between Methadone and breastfeeding. AAP opinion: ... /1429.full

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Re: Pregnant and Miserable - Back to Methadone??

Postby Helen518 » Wed Nov 07, 2012 4:12 pm

I don't think I ever posted my outcome. My twin girls were born on August 17, 2011. Baby A was 6 pounds 5 oz and baby B was 4 pounds 7 oz. They were born by planned c section at 38 weeks 0 days. Baby B had restricted growth and was monitored for the last 6-8 weeks frequently via ultrasound. She was taken straight to nicu at birth and stayed a week due to pneumonia and her small size. She has quite a few problems - blindness, nystagmus, her head is not growing fast enough, she has fine and gross motor issues and speech delay. I asked numerous times if the problems could be due to the methadone and the doctors always dismiss it and say it was not likely at all - because baby A is totally fine and developing on target.

I had a great pregnancy except for being so uncomfortable and HUGE with twins. RLS was the least of my troubles. I even reduced my methadone dose down to 12.5 mg part way thru teh pregnancy. AFter the pregnancy I went to 10 mg.

Weirdly, suddenly I am having terrible breakthrough RLS 15 months after delivering my girls. I have bumped myself back up to 15 mg per day from 10 but it does not seem to be enough. the daytime RLS is the worst. Night time is not as bad as long as I don't worry about it and keep calm. This increase in the creepy crawlies was preceded by a couple of weeks by a return of my tinnitus and constipation and twitching (other symptoms of low iron). I am sure I have low iron. I had an iron infusion when the girls were 6 months old - it was low but I had no symptoms, amazingly. Now I am having crazy symtpoms. I THINK that the wonderful prenatal vitamins I was on kept the RLS at bay and now since I stopped takign ANY vitamins . .. my body is depleted and I am suffering awfully. I regret not continuing iwth the vitamins but I just assumed that the iron infusions would keep it at bay . . . but I delayed my last ferritin bloodwork longer than I shoudl have and now look where I am . . .

Being nearly symptom free due to methadone for 2 years, i really took for granted being able to relax and not worry about RLS. I had that I took that forgranted. the diseas is so unpredicatble and (i've sometimes had terrible symptoms but been told my iron is not low enoughf or an infusion) I dread a return to the old days. I was on 25 mg in 2009 and I was too sleepy and still had breakthru sometimes. As my anxiety about the condition improved and it became more predictable adn I became more confident in the meds It got easier. I am uneasy about the future now. I just keep teling myself I will get it under control again.
Successfully delivered twin girls August 2011 at 38 weeks via planned c-section. Methadone was a good choice to handle the RLS during pregnancy. I had very few symptoms while pregnant or after. I recommend!

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Re: Pregnant and Miserable - Back to Methadone??

Postby majoraward » Wed Nov 07, 2012 5:54 pm

Twins! Congrats. Sorry to hear about the problems with the one twin but a blessing to have nonetheless, also a blessing to have one that is healthy. So you are only on Methadone. What about taking something in addition to Methadone like Mirapex? I take Lyrica and Methadone throughout the day and night but also take Mirapex at night so I can sleep, Ambien also if the Mirapex alone does not work. Sorry to hear that you are having problems I hope it is straightened out for you soon. In a week I will be getting my first iron shot, I was told it is possible that the symptoms will go away for from 3 months to a year (if it works), but I guess I will find out soon :)


I just read back through these posts and saw that you can't take Mirapex for long. You might try it again though because I have augmented on it several times over the past 6 or 7 years and it has been working again for a couple of months.

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Re: Pregnant and Miserable - Back to Methadone??

Postby fraujoolie » Wed Nov 07, 2012 9:32 pm

Congratulations on having twins! I am sorry to hear that one has some health issues. I agree with your docs, I have read every single last bit if research, methadone does not contribute to the health issues you are describing. I hope you are able to pursue good care in your area. Have you done genetic testing to rule out disorders?
I hope you can see your doc soon about your increasing symptoms- there are some new drugs on the market (Horizant and Neupro) that can be taken with methadone. Lyrica was also mentioned, as well as Ambien. I've tried all of those. I recently was given Xanax for occasional use. If you find the vitamins were helpful, why not go back on them? There's no reason why you can't take prenatal vitamins, even though you're not pregnant.

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Re: Pregnant and Miserable - Back to Methadone??

Postby badnights » Thu Nov 08, 2012 12:47 am

Helen, you should pursue the iron issue; maybe it's time for another infusion, and probably you should use oral ferrous sulfate supplements between infusions. I am not about to advise you to take a supplement without getting your levels checked first, but you know your own body and can choose a safe course. If I stop my iron supplements, I feel it within days. I take 600 mg ferrous sulfate daily.

Try taking some vitamin D as well; get checked as soon as possible but probably adding 1000 IU might not hurt?? unless you're already too high, so I guess you better get checked first, I'm certainly no expert. Most N. Americans are low in D, even given that no one can agree if 20 or 30 ng/mL is the target level. If you're under 20 you're too low.
Beth - Wishing you a restful sleep tonight
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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Re: Pregnant and Miserable - Back to Methadone??

Postby ViewsAskew » Thu Nov 08, 2012 1:45 am

Hi Helen, thanks for letting us know what happened and what is happening now. Best to you and the twins as they grow.

In the past, I've often gotten used to methadone and had to increase doses every so often. Oddly, recently I've been able to decrease. Do press the iron infusion. I've been taking iron daily for about 3 years and D supplements for at least a year. It's been the past 2-3 months I've been able to decrease meds and the ONLY thing I can think of is my D level is higher and my iron level is higher. I haven't had the iron tested in about two years, but maybe I've finally reached a critical level.
Ann - Take what you need, leave the rest

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