Requip making my symptoms worse :-(

[Aggycantsleep]

Hello everyone, I finally got fed up with my neurologist and went back to my PCP. He said that he wants to get to the bottom of the cause and not treat the symptoms. He told me to stop taking the Sinemet, but continue on the Neurontin and see what happens. He ordered a TSH and CMP, along with ferritin level testing. He seems to think I experience sleep apnea, although I am almost certain that I dont. Arghhhh, I am so frustrated, but hoping this blood work sheds some light on things.

[rthom]

Hang in there Aggy

[ViewsAskew]

So glad to hear he is willing to help you!

If he's new to RLS/WED, it might be helpful to print out a few of the RLS.org publications for doctors. Another good option is to buy him a copy of "Clinical Management of Restless Legs Syndrome" by Hening, Buchfuhrer, and Lee.

Per the apnea...you may, you may not. I was sure I didn't, and I didn't. But, other people have not known and a sleep study helped them resolve it. Mostly? It helps the doctor be comfortable with the new direction. Even if you don't, he won't be harping about it or thinking that it's a solution anymore. That can be priceless!

[bharrod]

Requip made my symptoms much worse. I had to quit taking it.

[Chipmunk]

I never would have thought I had sleep apnea either, but a sleep study showed I did (had surgery to clear the airway). You just never know.

[badnights]

Re the apnea, you can't tell. Your bed partner, if you have one, might be able to tell, but we ourselves can't, unfortunately.

If he suggests a sleep study, go for it! It can reveal so much, and more importantly, as Ann said, eliminate things. RLS can be pretty difficult to diagnose, especially for an inexperienced doctor, and diagnosis is easier when other possible causes have been eliminated.

[Aggycantsleep]

Hello again everyone! Ok, so here is my new regimen....Klonopin 2 tabs. (.5mg a piece) Zonegram 1tab 2x a day, and 1 oxycodone 5m tab in the morning when my rls symptoms begin. Nights have been better until arund 4 am and the oxycodone certainly helps during the day, but only for a few hours and then the evenings are a nightmare again. My doctor really didnt want to put me on the oxycodone at all. I find it helps me during the day and I honestly have not had any odd side effects or mood changes. I am hoping this cocktail keeps working and we can find a way to curb my evening/ late afternoon issues. But for the most part, all is well

[Polar Bear]

Aggie, very glad that you are getting some relief . Now that you know this drug will work for you, I wonder how your doctor would feel about helping you get evening relief also.

[badnights]

It might help your doctor to know that an experienced RLS/WED specialist has said that addiction, even after years of treatment with opioids, is very rare in RLS. That specialist is Dr. Buchfuhrer, co-author of the little green book called Clinical Management of Restless Legs Syndrome, and a co-author of the Mayo Clinic algorithm for treatment of RLS and of the RLS Foundation's bulletin for medical professionals on RLS diagnosis and treatment.

I hope your doctor can see the way to giving you more evening relief. The clonazepam/Klonopin dose seems high, given that it doesn't treat the symptoms of RLS, it only causes sleepiness and has some anti-anxiety properties, as I understand it. If it is working, great, but a personal note of caution from me: beware taking it when the symptoms are strong. The RLS will overrule the sleepiness, and you may find yourself sumbling around, unable to lie down but not clearly awake either.

The zonisamide/Zonegran is an anti-convulsant, right? Did your doctor discuss why he chose that one rather than one of the ones more commonly used for RLS/WED? (the most commonly used are gabapentin/Neurontin and pregabalin/Lyrica; plus gabapentin encarbil/Horizant was recently approved for RLS treatment). I don't know anything about it so I'm curious if you find it's helping at all? There are so many different drugs out there.

Have you thought about taking the oxy in the evening, with the rest, instead of in the morning?

[Polar Bear]

Aggie, did you ever get the result of your ferritin level test ?