Page 1 of 2
Posted: Thu Nov 27, 2014 1:22 am
I am trying to get pregnant. It is so frustrating to try and find something that is approved for pregnancy. My neuro tried me on Tylenol 3 and it works but keeps me up all night. Then I tried Sinemet and was uncomfortable taking it. He said there was nothing further he could do for me. I got a second opinion and they said I could take cabergoline safely. Has anyone tried this or have any other suggestions? It's scary to think I would have to go nine months with no meds and RLS getting even worse.
Posted: Thu Nov 27, 2014 9:25 am
I am surprised that cabergoline is safe. Huh. Didn't know that! It's rarely used these days for WED. I'm very surprised that there is enough literature about it - same as sinemet. I'd not think it would have been studied as it's for Parkinson's and that population rarely is of child bearing years. I'd do some searches on the internet to make sure that is true if it were me.
About the only thing I know of that is very, very safe, would be the opioid class. For example, there are data galore regarding methadone. Some of the members here have used it. T3 would not be my first choice - you do not need the Tylneol in your body. If it worked, there are mild to moderate opioids that should work well on their own. You might try playing with the dose and timing to see if the altering affect can be mitigated. I take methadone (severe WED) and find that if I take my doses earlier than I'd think I should, that I get tired earlier. I still do not want to go to bed at 10 PM, but I do not have to be anywhere in the morning and have, over time, developed a later sleeping schedule.
There are a few posts below, one or two that chronicle what the mom's went through. You might want to read them - I think they'd be very helpful.
The WED Foundation, if you are a member, has a pamphlet about pregnancy and WED, if I remember correctly. Its on the rls.org site.
Posted: Fri Nov 28, 2014 8:14 pm
I definitely agree about the opioids but have yet to find a doctor that will prescribe them. I have seen two neurologists and also my ob/gyn has recently said he only wanted me using non-narcotics and category B drugs. It's so frustrating!
Posted: Fri Nov 28, 2014 9:33 pm
Dr M Buchfuhrer is a high calibre WED/RLS Specialist. He is a co-author of this wonderful book which is easy to read and can be used for discussion purposes with your doctor.Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition.
These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.
Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
Dr Buchfuhrer will respond to an email and it might be an idea to write to him asking for firstname.lastname@example.org
If you have a copy of the above mentioned book, and a response from Dr B with regard to treatment during pregnancy, together with the pamphlet as advised by ViewsAskew, you will have qualified support regarding possible treatment.
Getting your doctor to acknowledge it is another matter.
Would it be possible for you to make an appointment to see Dr B who is in California.
Posted: Fri Nov 28, 2014 9:48 pm
Thank you so much for your help! I have had my iron checked and it is normal. I have not had that specific test done that I know of. I regularly take gabapentin which of course I have to come off of during pregnancy. I wish we had a WED/RLS specialist around here. It is so stressful wanting to get pregnant but being so fearful that no one is going to help you once you become pregnant. It's very scary actually and heartbreaking at the same time. I feel like I have to make a choice between the two and it's not fair. I live in North Carolina and California unfortunately is not an option for me.
Posted: Sat Nov 29, 2014 11:34 am
I was on Cabergoline for 9 months (not pregnant). It has a half life of 60 hours if I'm not mistaken. I stopped because it gave me sleep attacks. Most of the times it will be a safe med to take, the only thing is that it can cause heart valve problems, like Pergolide, but I think only in 2% (?) taking it. In my country (The Netherlands) it is very expensive though.
Posted: Sat Nov 29, 2014 6:34 pm
Dr William Ondo can be reached at the University Texas Medical Centre, there is also a doctor in the Georgia area.
And also at John Hopkins.
It may be possible that only an initial appointment would be required, others who have travelled to see a doctor will know how it works for follow-up treatment.
Don't be reluctant about emailing Dr B for advice, he has helped many of us via email.
Please note that a normal iron result does not mean that the ferritin serum iron is OK. They are very different and the ferritin serum blood test would have to be specifically requested.
Posted: Sat Nov 29, 2014 9:06 pm
Dr Rye is at Emory in Georgia. It's not a hop skip and jump, but if you come up with no options, you may find that he would only require one consultation and then would work with your local doc.
That is what Dr Buchfuhrer did for me. I saw him once - he worked with at least three different doctors in Chicago over the next few years. Eventually, I just started seeing him once a year and working with him through email the rest of the time.
Posted: Sun Nov 30, 2014 3:10 am
Thank you so much for all of this information. It has been so much help! In your opinion are the opioids the safest route? Are the only worries about that the addiction? I've read some things about cabergoline that worry me. From what I've read I feel like opioids are the safest.
Posted: Sun Nov 30, 2014 3:25 am
I just emailed Dr. B. Hopefully I will hear from him soon.
Posted: Sun Nov 30, 2014 6:26 am
Hollybelle78 wrote:Thank you so much for all of this information. It has been so much help! In your opinion are the opioids the safest route? Are the only worries about that the addiction? I've read some things about cabergoline that worry me. From what I've read I feel like opioids are the safest.
Definitely read the thread downstream by the member who documented what she went through. She did LOTS of research and highlighted what she learned. It's an excellent read. If I can find it. I'll bump it.
OK - I bumped it - it's by sarahjj.
Fraujoolie, one of our members, wrote a lot about her pregnancy. She used methadone. Here are her posts - you might want to go through them:search.php?author_id=17177&sr=posts
Posted: Wed Dec 03, 2014 7:51 pm
Well it looks like I may be in trouble. Dr. B was helpful but it was pretty much what I already knew. Opioids are safest. Dr. B prefers methadone. He said it wasn't likely I would find anyone in NC to prescribe it for me. He said it would also be hard to find anyone to prescribe opioids either. Most doctors don't like to prescribe them in the first place and even less likely in pregnant women. My neurologist agrees it's the safest but is unwilling to prescribe them. Both neurologists refused to prescribe them. They said my OB would have to and they won't either.
Posted: Wed Dec 03, 2014 8:42 pm
I'm glad you got your reply from Dr B.
A difficult time for a WED sufferer.
Is there any way you can arrange an appointment with one of the specialists mentioned above.
It could be such a big step forward to beneficial treatment.
Posted: Wed Dec 03, 2014 10:01 pm
I may look into going to Georgia. That is the closest one to me. I'm going to try and contact them to see if they would be willing to see me once and work that way. Hopefully they will.
Posted: Wed Dec 03, 2014 11:03 pm
I just think it's a travesty that you are in this position. It just seems crazy.
I had a primary care doc who read everything I presented and agreed that methadone was my best option...but she refused to help me. It was a CRAZY period in my life. I went through hell and back to get the care I needed. No one should have to do that.