Nervous about doc check up tomorrow

[Mylo]

I've lurked here off and on throughout the last year or so. I really need to get back to being more regular here.

At any rate, my doc and I finally figured out that Sinenet 25/250 works best for me. Hurrah! I've been taking it since September, and combined with Wellbutrin; I have returned to my "normal" state of being.

HOWEVER (and there's always a HOWEVER involved with RLS ), the Sinemet has decided to up the side effect of nausea to unbearable. I'm throwing up more regularly when I take it, and when I do get sick; it's like having the stomach flu.

I've begun to have more RLS episodes since Christmastime. Not too regular, but returning nonetheless. I'm starting to get twitches in my lower back and arms. I've begun to move around in my sleep (so says the boyfriend). I've also noticed an increase of head fuzz that I had before I was on meds.

Based on all that, I decided I should go back to my doc to at least inform him as to what's going on. I always dread going back to the doc because I'm afraid I'm going to get the "there's nothing more we can do" routine. Even though we're not at *that* point yet. He mentioned Requip, but is wanting to investigate other non-Requip drugs before trying me on it.

I'm feeling a touch scared and have some incoming leg pain and getting That Antsy Feeling again. Sorta needing to get all that off of my chest, and I know that at least here, someone understands.

*hugs* and good sleeps to all. Hopefully tomorrow goes better than I am expecting.

[ksxroads]

Dear Mylo,

(((((BIG HUG)))))) I truly know the feelings.

It is possible that you need to change medications. Have you printed out the list of medications on the Mayo Clinic algorithm and shared it with your doctor?

Sinemet has quite a few problems associated with its use and there are better options available. It is possible that you are developing augmentation ... usually stopping the dose is preferable to upping the doseage.

It could be possible that the Wellbutrin may also be contributing to the RLS. Though Wellbutrin is the one anti depressant that most RLS can tolerate to some degree.

I am sure that Ann, Becat, Jan, WAM or one of the many regulars will have other suggestions. Just wanted you to know that I am glad you dropped by. The most help I received in keeping focused and learning how to educate my doctor was from the people here on this board.

******Positive Thoughts***** Hazel

[ViewsAskew]

Hi Mylo, glad to "see" you again. It's easy to get away from the group, but know that you are always welcome when you need us. We'll be here. So sorry to hear that the RLS is creeping around again. I always dread that and get so agitated when it starts.

Are you taking the Sinemet daily, or only as needed a few times a week? As Hazel said, if you are taking it daily, there are many better options because of the side effect of augmentation. Since your RLS is increasing within a short time of starting Sinemet, it sure sounds like augmentation to me, too.

Requip and Mirapex can also cause nausea. Some people find they can avoid it if they keep the dose low, or if they eat when they take it. Sometimes they can't and they have to stop it.

It is hard deciding to take drugs and which drugs to take. Requip is really not much different than Sinemet and I'm not sure why your doc would want you to try other things first, however. Maybe the Algorithm Hazel mentioned will help you and your doctor make a decision you feel comfortable with.

Hope the appointment goes well and you get the treatment you need and deserve!

Ann

[becat]

Hi Mylo, Ann, Hazel,
It's nice to see you again Mylo.
I'm with you and so are many of us. Find something is working for a while and you get that "normal life" (non RLS ruled) back and it's frightening to think it's might all go backwards.
Sounds like it is time to see the doc, but you know that we would be the first to tell you, there are endless possiblities and options. Hazel is right, I'd be packing the Algorithm in my bag and if that doc said anything close to the end of the line....well nicely hand him the packet and refuse to give up hope.
As stated before, your never alone and with all of us, I'm sure theres tons of ideas.....even how to work that doc of yours.
Glad to hear from you, keep us on th eupdate list or just plain visit every so often.

[Mylo]

Thanks guys. *huggles*

I went and talked to my doctor, and he was very good about my concerns. I've been with him for over a year, and he knows that I don't like coming back to see him (sorry Doc!). So he takes that into consideration when I come to see him. He knows I tend to be more pessimistic about this, so he just always reassures me - "we're not out of options. There's a ways to go before that."

At any rate, we've given up on the Sinemet. He had me take it daily, and I have been taking it daily since May of last year, with the 25/250 dosage starting in September. It worked for a good while, but it had it's run.

So, we're starting on Requip. I just fetched the 0.25mg and will start it on Friday. Thank God for my insurance, they're covering it. There are some hoops to jump through, as it's a university sponsored insurance, I'm 23, and don't have Parkinsons. They'll probably just complain, but nothing too major.

Obviously I will need to be seeing my Doc regularly until we get a doseage figured out. He's estimating 1mg or more (:shock:). My mom is on 3mg for Parkinson's, so I'm a little surprised that I'd need that much. But, he's the doc, not me.

I'm going to pull up all the Requip threads here so I can browse through them and see what others have run into. Hopefully it helps and the nausea is won't be too rough. Although Doc says I'll have some rough nights until we get the dosing figured out. :/

I'll keep everyone updated. A nice 'success' story though - once I got my RLS under control, I ended up getting all A's and B's in my coursework last semester (for the first time since I came to Uni in 2002). What a difference a good night's sleep makes!

Anyone have any ideas on turning a pessimistic attitude into a better one?

[Mylo]

An update -

First, my doc is retiring. I've been with him for over a year, so I feel beyond comfortable with him and we had a good doctor/patient relationship established. He gave me the names of some other docs that actually want to treat RLS, so we'll see how things continue. My last appointment is next week, then I get to start going to someone new. My biggest fear is that I'm going to get stuck with a doctor who just doesn't care. I don't want to doctor hop, but I will if I have to.

I'm up to 1.0mg of Requip. I'm increasing by 0.50mg each week. The last few weeks have been absolutely hell, I've been waking up constantly and getting poor sleep. I'm pretty sleep-deprived; but am starting to see the Requip helping. I'm supposed to go up 0.50mg each week until I get to 2.5mg. My side effects have just been mild nausea, which is more tolerable than the side effects from the Sinemet.

I'm eagerly awaiting the time when the Requip really smooths things out and I don't have to be nervous about going to bed at night.