Pregnancy and meds advice

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.
Twitchy Canadian
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Pregnancy and meds advice

Postby Twitchy Canadian » Mon Aug 23, 2004 12:45 pm

ok ladies, I know there are a few of you out there. I need some advice. My hubby and I are considering starting a family. I'm 36 and he's 40. We don't do it now, it won't happen! :wink:

My doctor has advised that my meds will have to stop (I'm on Mirapex and Clonezapam) But he's not offered an alternative. I also have the added joy of sleep apnea.

My question to all of you is whether these meds will have to stop prior to pregnancy? or only once I know I'm pregnant? My doctor told me that Mirapex can, in some cases, act as a birth control. I cannot see myself not taking Mirapex unless I 'CANT'. At my age, it's likely conception could take awhile anyway. If I stay on my current meds and then find out I'm pregnant, what are the risks for those first weeks?

I've been reading new and old posts trying to find a possible alternative to the meds I'm on now but it's not addressed anywhere. My RLS is getting worse and by 4pm in the afternoon, I'm too jittery.
The non-pharmacutical suggestions don't work for me (rub-downs, warm baths) Walking does help sometimes, but as soon as I stop it's back :(

any advice out there?
Last edited by Twitchy Canadian on Mon Sep 27, 2004 2:00 am, edited 1 time in total.
Twitchy Canadian

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sardsy75
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I'll see what i can find for you

Postby sardsy75 » Mon Aug 23, 2004 1:27 pm

Hi Twitchy :)

I'm glad i'm not the only one with this issue still at the forefront of their mind! However I have not broached the subject with hubby for a couple of months now; and am guilty of "trying not to think about it"!

When I was first told I had RLS last year (2003) one of my first questions was, how the heck am I supposed to go through pregnancy with this thing? Like your doc, my Neuro at the time said I would have to go off all meds, however, he went even further saying that I would have to be off them for a good six months BEFORE we started trying! At the time, that idea scared me out of my wits!

I am scheduled to see my current Neuro on Sept 7 and a third Neuro on Sept 20 and it is definitely a topic I wish to discuss with both of them as it will not only affect my RLS, but my CFS/ME, so I will let you know how I go.

In the meantime, I posed the pregnancy and meds question in a yahoo groups RLS Support Group about this time last year. If you can hold out until tomorrow (it's nearly midnight here now!) I will go back through and find my posts and the responses I received from the members there for you.

Until then, take care of you!
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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sardsy75
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Pregnancy and RLS

Postby sardsy75 » Tue Aug 24, 2004 2:13 am

Hi again :)

I went back through all my posts and the various replies I received in the Yahoo Group, but did not find anything useful.

However, whilst ferreting about (as I do!) I have come across some links which provide information that us "mother hens" and our doctors may find very useful:

1. Pregnancy and RLS - Vital Considerations in Treating a Pregnant Patient who had Restless Legs Syndrome

http://www.rls.org/pdf/pregnancy_and_rls.pdf


2. Pregnancy and RLS (Source: The Sourthern California RLS Support Group Treatment Page)

http://www.rlshelp.org/rlsrx.htm#Pregnancy


3. Motherisk - To provide authoritative information and guidance to pregnant or lactating patients and their health care providers regarding the fetal risks associated with drug, chemical, infection, disease and radiation exposure(s) during pregnancy.

http://www.motherisk.org/


4. MDVU (in assoc. with We Move) - RLS Pharmacologic Therapy During Pregnancy

http://www.mdvu.org/library/disease/rls/rls_mptp.html



Failing that, hop into your favourite online search engine and type in +rls +pregnancy and have a ferret through the myriad of pages which pop up on screen.

Take care of you!
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

Twitchy Canadian
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Joined: Wed Aug 04, 2004 9:27 pm
Location: Ontario, Canada

Postby Twitchy Canadian » Tue Aug 24, 2004 11:40 pm

WOW, thanks Nadia! It'll take me awhile to ferret thru all that, so hopefully, I'll find something usefull to take to my doc. I tried doing a search myself but couldn't find much for the 'layman'. Just a bunch of medical mumbo jumbo that I wasn't sure was even useful!

I have an appointment next week.....we'll see how it goes!
thanks again.
Twitchy Canadian



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Jennygirl531

RLS & PG

Postby Jennygirl531 » Tue Aug 24, 2004 11:47 pm

Hi Twitchy! I've suffered through 4 pg's now with this (am currently 7 mos pg with the 4th). I had only started Mirapex with the last one and my neuro made me stop taking it. So far, I haven't found any info supporting continued med use during pg...sorry. From what I read in the Mirapex info, in lab animals who were given the medication it showed they reabsorbed the pg. I never asked how this correlated to human pg's, but assumed the same could happen, which might be why the doctor said it could act as bc (possible fertilization but embryo reabsorbed?) Anyway, I've been told numerous times that there just isn't research done on pg women so docs can't safely advise use of meds in this area.

Anyway, right now I'm taking something called L-theanine at night, which seems to help relax me, though doesn't take away the twitches (I got it at a health food store). I'm generally up taking a hot bath at about 2 a.m. also. Today I started back on the South Beach Diet (with calcium supplements!) to see if that helps at all. I did it for awhile last year and slept very well during that time...hopefully that will be the case again. A few times I've done yoga at night right before going to bed and that's helped a little.

Sorry I can't be of more help. I remember that in my second pg my RLS totally went away until my son was about 4 months old...hopefully that will be the case for you too!

Jenny

Twitchy Canadian
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Postby Twitchy Canadian » Wed Aug 25, 2004 12:08 am

HI Jenny.
thanks for the info....and congrats on your upcoming arrival! :D Like I mentioned to Nadia, I have an appointment next week. If Mirapex acts like bc, then why take bc?!? Just from what I've read so far, if this is going to be a reality for us, then I have to get off Mirapex :( I cannot imagine what that would be like, but maybe doc can prescribe something different that will still work for rls but not act like bc. Then, if I have to, I can go off meds completely.....suffer for the 9 months, I guess :?

oh joy! so looking forward to this one! lol
Twitchy Canadian



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Sole
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Postby Sole » Sun Aug 29, 2004 7:22 pm

HI Twitchy,

Sorry about the delay in responding. I had my fourth baby in May of 2002. I was taking Klonopin. I have good and bad news. The bad news is that yes, you have to stop taking it...weaning off VERY slowly of course. You'll want to stop before you get pregnant because there is the small chance of the baby forming a cleft pallet. The good news is you can resume taking it, after your first trimester. Once the major organs are formed, the risk is VERY minimal. I had to be seen by a neonatal specialist because I was high risk for diabetes and they screwed some tests up that indicated the baby and I had some rare disease! Luckily, the person who gave me the test did it wrong and we were just fine. None the less, I was seen by the specialist. He'd been prescribing Klonopin to his patients for years. I asked about why it's considered such a no-no with most ObGyn's. He said it's because of the FDA classification and because there hasn't been many (there have been some) studies done on the long term effects of Klonopin on babies who's mother's took it while pregnant. So, to sum up, there isn't any real evidence out there that proves Klonopin is dangerous to pregnant women. There's just a lack in sufficient studies. So it's going to be a hard first couple of months for you, if you do get pregnant. I counted down the days, until I could start taking my Klonopin again and you can bet I was in the Dr.'s office that very day to pick up my Rx. I would take 6 or so hot baths every night. I'd have my hubby hold down my legs while I thrashed beneath him, trying to wear myself out. All of those things you do when you don't have your meds. It was not fun but definitely worth our beautiful baby girl. I hope this helps some. Good luck.
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

CrazyLegLady

Not sure if this will help!

Postby CrazyLegLady » Sun Jan 23, 2005 9:58 am

I've never had meds...Occasionally took Advil for the achy legs before pregnancy but now take nothing.

This might or might not help. Sorry it's so long and convuluted but it's a cut and paste from my own weblog. Apologise in advance for the length.

Not all of it might be relevant. Good luck.
------
Okay. So the www.rlshelp.org had gotten way out of control, as I said before. I was getting to the point that I was worried I might do something stupid. It was that desperate.

So, yesterday, the strangest thing. I finally, in desperation with lack of sleep and exhaustion and hysteria agreed to go to the maternity ward and ask for sleeping tablets (yes, I know they're not recommended in pregnancy, but some are in the B category)...anyway, I read something about accupuncture, so I just literally picked a name out of the phone book. It was O(name of town) Accupuncture Clinic. I rang at about 9:45am yesterday. As I spoke to the lady on the phone, for the first time I felt as if someone knew what I was talking about. Anyway, she was brilliant. She agreed to take me at 11am. So, off I went.

When I met her, I have to say, I was on the edge of reason. She said she was a bit limited in what she could do for me because a lot of the accupuncture points she'd normally use were restricted due to pregnancy. She gave me an overall physical exam and said I am very low in Iron. She recommended the following things, some of which I'd figured out on my own...




No dairy

No meat (except fish)

Drink diluted red grape juice

Drink small amounts of rose water (can be found in Middle Eastern shops) in water

Take Spatone which is an Iron supplement which you mix with OJ or juice (not grape juice). It's naturally occurring iron and doesn't give me the horrible stomach I got with Iron tablets. You take one sachet a day (two if you're really deficient) and it's even good for kids. Since it takes about 6 months to build up your iron stores, even if you're not pregnant but want to be, it's not a bad idea to build them up before you get pregnant so you don't wind up like me trying to play catch up. It has a slightly metallic taste which you can't taste at all if you drink it with juice. I can't have OJ so I'll try mine with pear juice.

Eskimo Oil (I'm taking the liquid one which I have to admit tastes horrible!!)

No wheat or gluten

No sugar except small amounts of fruit

No caffeine, sugar, chocolate, tea, sodas, NADA

Magnesium supplements -- this seems to be the major RLS issue



Then she put in the accupuncture needles. No, they don't hurt. I've had loads of alternative (though at the time they were just normal) things like accupuncture when I lived in Japan and I really do believe accupuncture works (if you have someone who knows what they're doing). This time, she put in two points in my head to help control my legs, four in my arms to help to calm me down and two in my legs to promote circulation. Now, I could be wrong about which points correspond to which area. Anyway, she said that my energy (going on my pulse) was quite strong for someone in as much distress as I'm in now. She said overall, she doesn't think this has all affected the baby (Thank Goodness!) and that hopefully she can help me stabilise the RLS and get some rest during pregnancy but that the main thing is wait until the baby is born and try to address the points she couldn't during the pregnancy. She has been the only medical practioner (including the OB --who is the Professor of Ob/Gyn at the Med School, my GP, the massage therapist, the physiotherapist) who knew what I was talking about and didn't confuse RLS with charlie horses and leg cramps which are common in pregnancy. I have ordered a book on RLS called Sleep Thief, and if you're interested, I can tell you about it after I've read it. I'm planning on taking it to my next OB appointment because it's appalling that a pregnant patient tells their doctor they've not slept and are very anxious and distressed and they are told, "Sorry. Nothing you can do."

Anyway, sorry to be blathering on. I'm just so relieved to have found a possible solution for this horrible curse of RLS. I've had it all my life. At about 7-8yrs old it manifested itself in aching legs during the night which my mom had to wake up and massage and often had one or two hot baths a night. She took me from one doctor to another (and she was one herself) and they all said that I had growing pains and that it'd go away. I grew up and still had them intermittently. I used to always get it premenstrually and if I'd had drink taken. Also, if I was run down or tired or stressed. Since about 20 weeks, it's completely changed how it manifests itself. The best description would be this: Imagine that someone has plugged your groin, pelvis and hips into an electric socket which is sending 500000watts of electricity down your legs. The only relief is to get up and walk around, and you can't lay down or sit down for more than about 10 minutes without this starting up. In fact, the last week at work has been hellish. I've taken to doing all my phone calls and computer work while standing up. There have been times in the car, particularly if I'm the passenger, where I've seriously considered opening the door while the car is moving so I can jump out and run alongside the car. It's an absolutely maddening compulsion to move your legs and stretch them. If you're interested in more about RLS (which is sometimes called a sleep disorder, but often categorised as a neurological movement disorder), I'd be happy to share what I know with you. If you're in the States, Johns Hopkins is the best place for this syndrome. Unfortunately, Ireland is about 30 years behind. My GP, after three visits with this same complaint, finally did some blood work, so if anything comes back low, I'm going to get a full work up. Part of the reason why I'm so upset and distressed is that RLS, like Parkinsons is a movement disorder and as you might remember, my mom had early onset Parkinsons and eventually died young (62) from it. RLS are both neuro movement disorders and a lot of the medication for severe RLS is the same as the meds for Parkinsons. I'm told there's no connection, but I'm going to try to speak to the guy in Johns Hopkins to see what he thinks.

Another thing is that my daughter (age 4.5yrs old) got up this morning at 6:30am crying her legs were sore and I really hope this isn't going to affect her, too. I've started giving her Spatone and mag liquid to see if it helps. If I was a praying sort of person, I'd pray I haven't passed on this curse to her!

Anyway, in women who only get RLS during pregnancy, about 80-90% of sufferers find it goes away completely, usually until subsequent pregnancies. If you've had it like me, since childhood, it will usually get worse during pregnancy but you'll always have it. The two manifestations of it that I've had (the achey and the electric currents which are worse because you have to move, even if it means walking around the sitting room 200x during the night) are curious. To be honest, if I went back to just having the aching intermittently, I could handle it...it's the electric current one that has me in this absolutely horrible state. I've read there is a high incidence of suicide and self-harm in people who are long term sufferers of RLS and it really makes you feel as if you're going mad. I've never experienced anything like it.

I've started swimming and if I go on early sick leave from work, I plan on swimming every single day. Anything to get rid of it. If you know me at all, you'll know that something would have to be very very bad for me to give up sugar, caffeine, chocolate, wheat/gluten and actually WANT to exercise!! I've actually lost weight this week because of the distress and exhaustion. Maybe the weight loss will make the OB concerned enough to actually listen to me. The thing that bugged me the most was his absolute refusal to listen and accept that what I was suffering from was NOT leg cramps, but something altogether different. I'm very lucky to have found the accupuncturist (actually, she's not just an accupuncturist, but that's how I found her) and I hope she'll be able to help me.

After the accupuncture at 11:30am, I didn't have the onset of RLS until about 6pm, after swimming for an hour, I got home and it started up. Which is actually promising because it was usually starting at about 1pm. Those results could be because I was not sitting for long periods of time yesterday. The true test will be how I am on Monday. I'm back to see Dr. R (the accupuncturist) on Thursday and she'll give me another treatment. I'm keeping a food diary, exercise diary and a log of when the attacks happen. Hopefully, this information will help us to figure out what triggers it. I slept last night for about 1 hour from midnight until one and then was up until about 4am and slept until 7am, which is very good for me. That's about twice as long as I was getting before.

I'm going swimming again today to see if it helps. It's hard to know when I'm changing so much at the same time (radically changing diet, exercise and taking supplements) what is actually helping, but I'm so desperate for relief from this that I'm willing to try anything.


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