Attention mothers with RLS

RLS 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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fortitude
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Attention mothers with RLS

Post by fortitude »

Isn't life fun waking every three hours to feed the baby and waking with RLS in between? I was so tired I felt sick. I was taking Emtec30 which is aacetaminophen and codeine without the caffeine. It helped but I also had some other issues and they all related to dopamine production. But doctors ignored me and tried antidepressants, sleep aids, etc. I finally found research on ritalin that helped chronic fatigue, apathy, trouble concentrating, energy, RLS.... and I found a Doctor that was willing to listen! I've been on Methylphenidate LA for three months and it's amazing. It improves circulation to the areas of the brain where you need it. So it boosts our dopamine. If it stimulates other areas that's just a bonus: you'll focus on tasks better and improve your memory and concentration. Research suggests that this could help get your brain to produce more dopamine on it's own! I am full of energy during the day and I sleep all night long!!! Society has this idea that it is for ADHD children... it's just a medication that improved circulation. It works. Go 18 mg for a week then 27 mg as long as you can. The next step is 36 mg. That's where I'm at now. To wean off you just go 27 a couple days and then 18 a couple days and you're done (none of this agony of getting off antidepressants and stuff). Just thought I should let others know. Good luck!!!

ctravel12
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Post by ctravel12 »

Fortitude welcome with to the group. I am glad that you are having success and thank you for sharing that with us. This is what this group is all about.

Please keep us posted on how you are doing.
Charlene
Taking one day at a time

fortitude
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ritalin

Post by fortitude »

I posted that I took Ritalin to boost my production of dopamine. I just wanted to report that I am still on it, I still feel great and my sleep has been fine. I wake once in awhile with slight symptoms of rls but relieve it with a very small amount codeine (usually about 3 am).
It is too bad that Ritalin has such a "stereotype" to it and that people think it is for children, attention deficiets, etc. It is JUST a medication like anthing else and people shouldn't be scared to ask for it and doctors shouldn't discount it in other uses.

Polar Bear
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Post by Polar Bear »

Great news, well done.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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Helen518
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New to RLS boards

Post by Helen518 »

Hi to the Mothers with RLS! My RLS came on in June 2007 at week 20 of my pregnancy. I did acupuncture and took small amounts of lorazepam starting at week 20 and the antidepressant Remeron at week 28.

I was told it would go away after delivery but alas, it did not! My baby is nearly 11 months old now and I take requip and lorazepam. I have it 24 hours a day, not just at night. Vitamin supplements have not helped.

Now I am ready to try for baby #2, but know that it will be a challenge to go without the meds until second trimester. I work full time at a desk job.

I also have read that it tends to get worse with each pregnancy. I am a little concerned that even if I succeed with another pregnancy, I could be much worse off after baby #2 arrives . . . I am seeing a RLS neurologist at Johns Hopkins next week . . . wondering if he'll give me a recommendation about whether another pregnancy is wise.

SquirmingSusan
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Post by SquirmingSusan »

Hi Helen, and welcome to the forum. Please tell me that your doctor didn't prescribe the Remeron to treat RLS? It is one of the antidepressants that can make RLS worse, which is why I wonder about it. As I understand it, the safest meds to treat RLS during pregnancy are the opiates, like codeine and others.

One thing to consider - have you had your ferritin levels checked since you were pregnant? We women usually run low, and pregnancy can really deplete us. Ferritin is a measure of iron that is stored in our bodies. It is a different test from regular iron levels or hemoglobin. Sometimes just boosting the ferritin is enough to tame the symptoms of RLS. Please ask about that.

Also, have you noticed that your RLS has gotten worse since starting to take Requip? Sometimes those drugs can cause a thing called "augmentation" where the symptoms start earlier in the day and are more severe.

Actually, if you are seeing a neurologist at John's Hopkins, I'm sure s/he'll be on top of the ferritin issue. Let us know how that goes. I think it's entirely possible for women to get through pregnancy with RLS, with the proper treatment.
Susan

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Helen518
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Post by Helen518 »

Squirming Susan-

Thanks for the tips - I have had my ferritin, folate and B12 levels checked. In my second trimester, I was on the low side of normal on B12. I was anemic and took iron supplements reluctantly - I have GERD and vitamins can really do me in! The slow FE was not too bad though. Looking back, I wonder if I had taken the iron sooner if the RLS would not have started. I was also taking REGLAN at the time the RLS started. I read that Reglan causes RLS symptoms so I stopped it immediately, but my symptoms did not go away. My psychiatrist

THe Remeron really helped me sleep, as it has a sedating effect at lower doses. It was not prescribed for the RLS but because of the depression and anxiety I experienced as a result of not being able to sit down or rest or relax. I have not read anywhere that it aggravates RLS at lower doses - my psychiatrist did a search for that info but the only reference to RLS symptoms we could find referred to doses of 45 mg. I only take 30 mg (took 15 during pregnancy). I actually find that when I am less depressed and anxious I am more able to deal with my symptoms (i.e. instead of crying/panicking I just do something about it! and I don't catastrophize . . .)

SInce the RLS was pretty constant from the start, I am not sure if the requip has made it worse. I take 1 mg 2x in the day and 1-3 at night, depending on the state of my stomach (sometimes 3 mg makes me puke.) It's effectiveness is unpredictable - sometimes it does not seem to work at all - but at least I do get breaks from the RLS with the requip/lorazepam combination. The lorazepam works the best, but I know that a person can become tolerant pretty quickly if they rely on benzodiazapenes only.

Sorry for the long post!

Neco
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Post by Neco »

I never got up to anywhere near 3mg.. But I had a similar experience when I tried Requip.. I got the nausea and I also got random headaches, and it was 50/50 either working or not working at all..

I -think- I have heard methadone might be safe during pregnancy but I'm not sure.. A few of us are taking methadone and have had very positive results from it.

But I'm sure something like that would make your Doc recoil the second you mention it =\

mackjergens
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Pregnancy & RLS web site

Post by mackjergens »

below is a web site from women that are pregnant and also have rls, looks like alot of great info!!!!

http://www.rls.org/Document.Doc?&id=183


Hope this is helpful

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Helen518
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Hopkins doc visit

Post by Helen518 »

Hi there,

I saw the doc at Johns HOpkins today. He told me to get off the Remeron, as predicted! He wants me to back off the requip and lorazepam (which I already started doing) and get off it completely. He gave me mirapex for night time. He wants to see how intense the sensations are in the daytime once I quit the requip.

I am also having my ferritin rechecked. He said that what other docs consider to be "normal" ferritin are often levels he considers to be low, because ferritin is low in the female population in general. SO one may be in the "normal" range compared to average, but still be low. If that is low, then he is going to try me on intravenous Iron. I had read abou this a year ago, but none of my docs were interested when I brought it up.

I feel really good to have spoken to someone who knows his stuff! I am cautiously optimistic. He said that he has many patients who choose to get pregnant despite RLS and many take opiates, even in the first trimester. While it tends to get worse with subsequent pregnancies, he said there is no way to know how much worse it will get, but not to think of it like Russian Roulette (which is how I was thinking about it). The chances of ending up with debilitating RLS (can't work etc) are not great. However, I will hold off on the pregnancy thing until he feels I am stabilized and we know whether or not Iron is the issue. I hate to wait, as I have fertility issues and the longer I wait the smaller my chances get, but a couple of months shouldn't hurt . .. .

becat
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Post by becat »

Hi Helen and welcome,

Sounds like a good doc and a great visit.

I wish you the best and hope all is well through this time.

Glad your here and we'll be here if you need us.

Not much help in this post, just a hug and a welcome.

Lynne

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Helen518
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Post by Helen518 »

Thanks for all the advice and welcomes from everyone! It's great to have experienced folks to share with and get feedback!

booth205
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TTC

Post by booth205 »

Hello,
Just read your post and wanted to reply. I am currently trying to conceive and have been 6 long years and I have RLS. I went to 6 doctors b4 anyone wanted to help me. Because, Requip and Mirapex both have a high percentage in causing birth defects and miscarriages. So, needless to say the doctor has to treat you as if you are pregnant when you are trying b/c you can't take just anything. SO, I thought I would tell you how I have been treated. I started out trying Ultram, it didn't work, then they had me try Neurontin. It didn't work and had me so zoned out/high all the time that we went to the only resort left, pain meds. I now currently take Lortab. I know Lortab is safe during pregnancy b/c I have had to take it b4.
So, with all this being said. I encourage you to tell your doc you are trying to conceive b/c you have to be very cautious about what you are taking. Make sure the meds don't fall below category C.
I hope this info helps you!! Good LUck!!
Amy

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Helen518
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Post by Helen518 »

Thank you so much for your reply! I'm glad to hear you found something that works for you and is safe during pregnancy! I will definitely ask about Lortab.

It increases my optimism to hear from women like you in the same situation. I felt so alone during my pregnancy last year . . . my GP and my OB did not seem to take me seriously at all - my OB even told me to take Benedryl to calm down! That was a LONG night, I can tell you! Finally my psychiatrist gave me small dose of lorazepam - it was the only thing that got me through the second half of the pregnancy (it can't be taken with any regularity during first trimester - causes malformations). I swear the Remeron helped too, though everyone says it is supposed to make things worse.

I am down to .5 mg requip in afternoon and .5 Mirapex at night. By Thursday I should be completely off the dopamine agonists. Tuesday night and Wednesday night I slept horribly, but last night I slept well (I also took .5mg lorazepam - but the doc thinks that the lorazepam does not help - I swear it does . . .) The days are weird - I'll have a couple of hours that are fine, then a couple of hours when I'm climbing the walls. I work a desk job, but get a 2-3 short walks in during the work day.

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