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Posted: Wed Apr 06, 2011 2:25 am
Because there is such little information on RLS sufferers and pregnancy, I thought I would use this forum as a journal of my experience as I go through it. Just like every other topic on this forum, I hope someone will find it useful. If that's ok with y'all, here we go:
I am currently 9 weeks pregnant. I am 41 years old and have severe 24/7 RLS. I have been medicated with Requip to control my symptoms for the past 4 years. I found out that I was pregnant at 8 weeks. My dosage of Requip up to this point was 4mg per day.
I immediately stopped the Requip and called my neuro, Dr. June Frye, in PA. She offered to send me a script for Oxycodone to replace the requip. With no medication, I had a miserable 4 nights. Zero sleep took its toll on me. However the worse part was the constant movement. My symptoms never took a break. My body forced me to constantly move, walk, pace, jump, shake, stomp. My husband likened it to an aerobic workout. I could not lie down, sit down or stop moving....ever. There were times when I felt like I was having a seizure. By the third day, my joints in my ankles, knees, hips, shoulders, wrists, elbows, all were in tremendous pain from the constant pressure.
After the fourth night, I spoke with Dr. Frye again and we decided to move to Methodone. While I was waiting for the script to come, she suggested I double my dose of Oxycodone (from 20mg per day to 40mg) to see if that would get it under control. It did. I slept in 2 four hour stretches last night and finally feel better. However, from what I understand, Oxycodone is not to be taken long term during pregnancy. Today was my first dose of Methodone so we'll see how it goes. Sleep and rest MUST happen tonight.
Posted: Wed Apr 06, 2011 5:56 am
You poor thing. Stopping Requip suddenly almost always causes intensely worsened symptoms, for a few days to two weeks. Especially from a high dose like you were on. Someone should have warned you not to stop it until you had a script for a sufficiently high dose of oxycodone or methadone in hand. (The good news is, your "baseline" RLS is probably not as bad as that 4 days of hell you went through.)
Posted: Sat Apr 09, 2011 5:21 pm
Well, its been a long week to say the least. I misunderstood Dr. Frye about the Methodone. She wants to use it as a back up. So we are sticking with the double dose of Oxycodone now and it is working very well. It is a short acting drug, so it wears off after 4-5 hours. At first, my husband was waking me up in the middle of the night because I was kicking and punching him (obviously the meds had worn off), so I would get up, take another dose and go back to bed. But Dr. Frye said "NEVER WAKE A SLEEPING RLS PERSON". So now my husband suffers through the kicking and punching and I sleep through it. Pretty cool. I am extremely fatigued, but otherwise feel good. I can sleep through the night and get the rest I need.
My only concern is that Dr. B is so PRO methodone in pregnancy, while Dr. Frye is ANTI methodone in pregnancy. She says she has literature/studies that show that methodone should not be used during pregnancy. Dr. B prefers to use methodone over oxycodone during pregnancy. So I'm questioning why these two doctors have opposite opinions. They know each other through conferences, etc. So it just seems so weird to me that they don't have the same information.
My first exam and ultrasound is on April 19th. I'm looking forward to that experience and what the doc has to say.
Have a great week!
Posted: Mon Apr 11, 2011 12:33 am
Sarah, that is really weird that Dr. B says one thing and your doctor another thing. All I know is that many, many women have taken methadone during pregnancy because that is what is used to keep addicts off of heroin, and it seems to be widely known as safe. But sometimes doctors get a bit too attached to their opinions about things and won't change their minds.
I do love it that Dr. Frye told your husband to never wake a sleeping RLS person. That is just awesome advice.
Posted: Thu Apr 21, 2011 6:31 pm
I would ask to see Dr. Frye's evidence. I never came across anything negative about methadone during pregnancy. I encourage you to go to her with the articles I have, and have a long discussion about this.
Posted: Sat Apr 23, 2011 2:48 am
I had my ultrasound with my ob/gyn on Tuesday this week. My due date is December 13th! In the meantime, Dr. Frye has been absolutely awesome about working with me on almost a daily basis tweaking my dosage on the oxycodone. The last time we spoke on the phone, she had pulled in the other doctors in her practice to make a group decision on what changes to make and how to implement them. She is taking this very seriously, which I really appreciate, and understands how sensitive the situation is. I love her concern and empathy and willingness to keep trying. On Monday, she laid a new dose and a specific timetable for the dosing, along with a plan B should I get in trouble in the middle of the night or over the weekend. This new plan seems to be working absolutely beautifully! So at the moment, I am a happy pregnant camper. "Squirt" is swimming around, has a nice strong heartbeat and is currently collecting parts and doing assembly work. We go back for another ultrasound on May 20th. In the meantime, next week, I visit the perinatologist. They will mostly manage my diabetes during the pregnancy, however they will have something to say about the management of the RLS as well.
Have a great week ALL!!
Posted: Sat Apr 23, 2011 3:20 am
Good news! Best wishes for an uneventful remainder of the pregnancy.
Posted: Sat Apr 23, 2011 11:44 am
Sarah, you sound glowing.
Posted: Thu May 05, 2011 11:30 pm
Ok, so this entry may include a little bit of venting. I apologize in advance.
I am 10 weeks pregnant with a due date of November 30th. It took 3 tries to get the right due date but we now have what we think is an accurate date. So I am towards the end of my first trimester and I'm feeling so completely miserable. I don't know if its just first trimester stuff or a result of my other complications. Either way, its frustrating. I am still on the Oxycodone and it is covering me "just barely". I average about 4 hours of sleep at night and that's it. For some strange reason, the RLS symptoms in my arms have gotten much worse then my legs. I'm grateful for the sleep I am able to get and I am grateful that when I can't sleep, at least I can lie down and rest. However I am so fatigued that I cannot drive or work without falling asleep. I talked to Dr. Frye last week and she feels that we have the medication at a point where it is as good as its going to get for right now and I have to suck it up and deal with the rest it. Lovely.
In addition to the RLS and the med change I have gone through, I also recently fuond out I have severe sleep apnea in which I have to wear a mask at night to sleep. Did I mention that I have anxiety about anything over my face that could hamper my breathing? And now today, I was put on insulin shots to manage my gestational diabetes. I have to stick myself with a needle 4 times a day. Oh yeah, that's another anxiety of mine....needles. Oh goodie! I'm so far outside of my comfort zone with all of this that I'm actually starting to resent being pregnant.
The good news is that I realize I am throwing myself a pity party and it will end soon. Done venting. Thanks for listening.
Posted: Sun May 08, 2011 4:48 am
Goodness, with all that going on, no wonder you need to vent! I don't understand why she doesn't put you on methadone for the pregnancy; but I know nothing about it, really. Are you happy with her?
You go ahead and vent here whenever you need it. This WILL end. Just get through the day. Or the hour. Like you've already done for so many hours.
Posted: Sun May 08, 2011 8:29 pm
Hi Beth, thanks for the encouragement! And the hugs!! I can use all I can get right now. I am happy with Dr. Fry. She is utilizing the other doctors in her practice, as well as my OBGYN and Perinatologist in making decisions about my RLS care. Everyone is in agreement right now, so I am comfortable with what they are doing. I have a bottle of methodone that we are keeping on hand in case of an "emergency". But at this point, I think they are doing the right thing - particularly since they all agree. I don't expect it to stay this way for the whole pregnancy. I'm sure things will change to such an extent that we'll have to do something else entirely - maybe the methodone. Who knows.
Today is a good day. And its mother's day. So I'm happy and relaxing.
Posted: Mon May 09, 2011 5:05 am
thank goodness there are good times, and you're being treated well. Hang in there!
Posted: Sat Jun 25, 2011 4:39 am
Here's the latest update:
I am now in week 17 of pregnancy, which means I'm in my second trimester. We finally got the right program of dosing worked out with the Oxycodone. I take one 5mg tablet every 3 hours throughout the day. At bedtime (around 10pm), I take 15mg. When I wake up at 1am, I take another 15mg and when I wake up at 4am, I take 10mg. Then I go back to the 5mg again. I take a total of 60mg over a 24 hour period. The good news is that the Oxy is covering me well enough that I can sleep at night. Its choppy sleep as I do wake up when 3 hours is up needing more meds. But it is a deep sleep. During the day, however, I am extremely fatigued and spend a great deal of time resting. The meds cover me enough to allow me to sit and lay comfortably. However, my body wants very badly to fall asleep. I cannot keep my eyes open most of the afternoon. Once my body relaxes enough to sleep, the RLS kicks in and the meds are not strong enough to overcome it. So daytime gets kinda rough.
I am being watched carefully by all of my docs. I have had Level 1 testing for abnormalities and the results came back that I have a 1 in 5 chance of having a down syndrome baby. I'm not worried about that at all because those tests have a 25% false positive rate. What I am worried about is the baby's dependency on the Oxy when he/she is born. The docs keep reminding me about it at every appt., but also say that the NICU is extremely well versed in handling this type of problem as it happens often (I guess with heroine addicted women give birth), and they know exactly what to do. They say that the baby will be tested (?) to determine its level of addiction to the Oxy and if they deem it positive, they will treat with morphine. Chances are the baby will not need treatment for longer then a few days and then all should be fine. There should be no long term effects in terms of drug dependency.
Despite their reassurance, it still makes me quite a bit nervous. Part of me feels very selfish taking the Oxy, knowing it is creating this problem for the baby. Intellectually, I know that its necessary. So I guess its just parental guilt starting early!
One other potential problem....I am at very high risk for pre-eclampsia. They test for it every 6 weeks. Once that happens, I'm bed-ridden. I expect it to happen at some point, hopefully very late in the pregnancy. But realistically, it could happen any time now. IF I have to be bed bound, its going to change things with the Oxy dose. I know the current dose will not be enough to keep the RLS symptoms away if I am on bed rest. So, I'm just praying that it all works out ok.
I'm thankful for how well things are going so far and pray it continues this way. Thanks for reading. Hope you all are resting comfortably.
Posted: Sat Jun 25, 2011 5:54 am
What an update, sarah! nothing is ever simple, is it?
Re bed-rest, you might be able to rig up a reclining bike of some sort, or just something that provides resistance that you can push your legs against to make a walking motion while lying down.
Have your doctors considered oxycontin as opposed to oxycodone so you can sleep through the night? It sounds like you really need a lot more sleep than you're getting. You're young and tough and will manage on inadequate sleep, but it seems something more ought to be able to be done for you.
Oh, and about the guilt thing: set it aside. The oxy creates problems for the baby but the WED (RLS) untreated would be far worse - it might even kill you and the baby. So lay the guilt aside and feel grand that you have the option of using a drug to control the WED.
Posted: Sat Jun 25, 2011 7:00 am
Ditto what Beth said. I remember using one of the drugs that only lasts 3-4 hours and it was very choppy sleep. But, as you said, it's sleep and that certainly beats no sleep.