Update: Finally found a good med, but Doctor won't prescribe

[geekgirl]

Hi All-- I posted a while back about my partner who has SEVERE all day all over RLS/WED.

I finally got her in to a sleep clinic in the area. I read about the neurologist on staff-- she had done RLS research, and has written for RLS newsletters. She came highly recommended, as far as I could tell.

We met her-- office visit was fine. She tried my partner on Requip to start out with. Willing to try anything, we filled the prescription and she started taking it. Well, it actually made the RLS worse, if that was possible. When she would take it in the evening her RLS turned into jerking movements and unbearable itching. She gave it a few nights, and then called the doctor to report that it wasn't working. At that point, the doctor recommended Klonipan to at least help her sleep at night. Well, that actually HELPED. Like, serious relief for the first time. We were beyond happy. She could take half a pill for relief when the itching started up, and then a full one if she it got worse. Some days she would only take a half and some days 1.5-2 mg. Her doctor had told her to start with a half and see what worked, so she did. Well, she ran out of the first prescription a few days faster than expected. So we called the doctor about upping the dose to 1.5-2mg a day as needed. We had an appointment to see her within a week but didn't want to go without meds completely again before that.

The response I got was shocking. Maybe, given what I've learned about the medical industry, it shouldn't have been. But it was. The doctor called back and basically said there was no way she'd increase the dose b/c she had only seen my partner once (ok, but we have other appts booked) and anything more than 1mg of klonipan, and you need to see a psychiatrist. Seriously? A shrink for documented RLS/WED? She refused to refill the prescription and berated my partner for taking more than prescribed (even though she told her to figure out what dose worked, and she called and checked in with her about it). She was SO rude and mean on the phone, we cancelled the rest of our appts and plan to go elsewhere.

It wasn't like we loved this doctor or especially clicked with her, but we liked her and she helped find something that worked. She did seem committed to working with us to find relief. And we had follow up appts and a sleep study planned. So now we're sort of back to square one. Itching all the time, hot bathes, trying to stave off worse flare-ups, and looking for another sleep clinic.

[ViewsAskew]

That so sucks - it seems to be a month for horror stories on our board. Maybe we should do a reality show!

Interesting that the Requip made it worse. It's possible that it was instant augmentation, that that is pretty rare.

I hope your partner has not had any withdrawal issues - Klonopin, in about 50% of those who take it - causes a very difficult withdrawal period. The doctor really sucked for not making she could stop it without issue.

You mention a lot of itching. Is the itching internal or external? Is there any internal sensation (like inside the body part - painful, pulling, electrical, etc)? Not sure I've heard of anyone with such a strong itching component. It's there for me, but much milder. And, oddly, if I can use lotion or remove the clothes that are touching me, the sensations often stop (or did long ago). So, more a sensory thing than real itching.

[jakesmom]

I use klonopin also, but not for itching. When you find a good doctor (hope you have more success at that than I have) ask about hydroxyzene. It's inexpensive and doesn't affect my RLS/WED at all. It will make you drowsy, but it's not addictive and it's cheap.

[geekgirl]

She describes her's as the "itches" and as creepy-crawlies all over her body. It makes her have to move, sometimes makes her legs and arms jerk, and makes it so nothing can touch her (fabric etc.).

Some things help out a little-- reflexology, hot bathes with epsom salts, and she's cut sugar, dairy, coffee, and wheat out of her diet completely.

She's actually being treated now for chronic lyme disease, and is getting feritine/iron injections-- her primary doctor thinks this might help with the RLS, but not being a sleep doctor, she's reluctant to deal with the RLS directly and isn't really into narcotic medications that mask the problem.

If anyone knows of an actually GOOD RLS doctor in the NJ/NY area, we'd love to her about them!

[ViewsAskew]

One way to find a knowledgeable doctor is to go to Google Scholar and search on RLS and your state. You can try it with the abbreviation and it written out. It will locate research where your state is mentioned. That often means a doctor is related to that state. I did a search - and found some things. May be worth a search this way. EDITED TO ADD - Boy, I was tired when I wrote this! It doesn't mean they will be a good doctor or even take patients, but at least they know about it and understand it. They also may know other doctors who treat it.

Walters AS, LeBrocq C, Dhar A, Hening W, Rosen R, Allen RP, Trenkwalder C, International Restless Legs Syndrome Study Group
New Jersey Neuroscience Institute, JFK Medical Center, Edison, NJ 08818, USA. artumdnj@aol.com
Sleep Medicine [2003, 4(2):121-132]
Type: Journal Article, Multicenter Study, Validation Studies
DOI: 10.1016/S1389-9457(02)00258-7


There are doctors in this one both in NY and NJ - http://onlinelibrary.wiley.com/doi/10.1 ... 7/abstract

I also remember someone else looking for a NJ doctor. Use the board's search function and see if anything comes up.

[debbluebird]

I hope you stopped the requip.

[badnights]

Ropinirole/Requip has been known to cause augmentation from the first day, although as Ann said it is rare. I augmented on it after 3 days. Perhpas it was happeneing sooner, but I clearly idnetified it on the third day.

I might consider getting that neuro back on board somehow and seeing if you can re-instate the sleep study and the appointments. A misunderstanding such as you described, and her unfortunate rudeness that makes me want to lecture her (or punch her....), is probably the lesser of two evils - the other being, having no doctor at all. It's sad!! but there are not that many out there, and the climate in the US against opioid use makes so many doctors afraid to move to that step when it's required. If your neuro was aware of augmentation, it's a loss not to have her on board.

However, she prescribed clonazepam/Klonopin to a person who was possibly augmenting on Requip, so I suspect she's not up-to-date and might be no great loss. I just kind of contracdicted myself, but the thoughts are running through my head and I don't have time to edit them... I hope they're useful anyway and not confusing.

The thing that really REALLY got me about your post was a bit of mis-information that I need to clear up for you. It's important, it you're to help your partner, that you and she both understand this: Narcotics don't mask the problem, they treat it. My GP was under that impression too, which shocked me because she had been prescribing me narcotics for over a year at that point, on a sleep specialist's recommendation. I brought her a number of papers with highlights on the relevant quotes, and I can provide you similar information if you'd like, but a few points to note:

• RLS/WED involves a malfunction of the endogenous (internal) opioid system
• the brains of RLS/WED patients have 30-40% less of at least two endogenous opioids than people without WED. This stuff is MISSING in our bodies.
• opioids in experiments have prolonged the life of rodent brain cells that otherwise would have died from lack of iron. This suggests a mechanism by which opioids work in reducing WED symptoms.
• opioid medications reduce the nasty sensations (pain, for some people) that are a hallmark of RLS/WED. They do not mask them or distract from the sensations, they actually reduce those sensations.

[ViewsAskew]

To add to what Beth said, it's acually more likely that Klonopin would mask WED symptoms. There is nothing, to date, in the literature to suggest any reason it would help. And, it doesn't help many. Yet, there are always people who do say it does, and not just because it makes them tired. Since we know there are multiple genes implicated, there are likely multiple types and drugs might just work differently for each those types.