Dopamine agonists

[ViewsAskew]

As I've bemoaned here more times that I care to admit, I had a difficult time on Mirapex. When I significantly reduced my dosage, the difficulties decreased dramatically. For a trial, I'm now on Requip. It's day 5 and I am getting some of the same symptoms. I see a new neuro is 2 weeks and want to be as informed as I can when I go; I'm wondering if anyone else has experienced any of these side effects while on any dopamine agonist:

-songs stuck in head both while waking and sleeping, ALL DAMN DAY! I dream them and wake up with them in my head.

-sudden mood changes. I can be walking down the street and all of the sudden I am extraordinarily sad. I often start crying. I often feel absolutely hopeless.

During the last month after reducing the Mirapex, my mood was back to "normal." Today, I was working in my studio and was overcome with sadness. I cried on the drive home. I realized I hadn't felt that way ONCE while I was on a very small dose. Now that I'm increasing the Requip, here it is again. I also noticed in the last month that the songs were occasional; as of yesterday, they are constant again. It wouldn't be so bad if it was stuff I liked, but they are things like "Afternoon Delight" and "Morning Train"; pop drivel (IMHO) that I didn't like to begin with! I often don't even really know the lyrics, but a part of the melody just keeps looping over and over and over and over and over .

Thanks!
Ann

[lyndarae]

YES YES YES!!!! Since Iv'e increased my mirapex(16 days now) I am crying everyday and feeling sad and depressed too!!!And the RLS is the same if not worse....My feet feel like little lighting bugs running around in them 24\7. And I thought I was the only one who got songs stuck in their head day and night. I thought it was "NORMAL" isnt it??? I will hear a song and I even dream about it. It just stays stuck there until the next one comes along. And I cry over commercials!!!! One of my clients was playing moon river on the piano and you would have thought I lost my best friend the way I started balling..I can't control it either. I thought is was because of stress or the hollidays or ect..... But Iam begining to think its the meds. But where to go from here???Oh dang here come the tears!!! LOL I always say gotta laugh or I will cry!! Its always a relief to know Im not crazy its RLS thanks for sharing Ann~~~~~~~~~~~~~~~Lyndarae

[cornelia]

Yes! I agree too! From time to time I have these songs in my head and then all of a sudden they are gone. I am on Requip too. I have a neighbour that is humming all of the time. As long as I live next to her (10 years) she has been humming ALL OF THE TIME. She doesn't mind it at all. I have read somewhere that it is a neurological problem, can it be?

About the mood swings: I sure have them! But if we can attribute it to Requip, I'm not sure. Doesn't RLS itself cause these swings? I mean if you have to live day and night with RLS one's mental and emotional abilities are decreasing. Mine do anyway.

I am on Requip and Neurontin and in the daytime on Tramadol drops.
The DA's (I have had them all, including Dostinex) and also Neurontin make me feel drugged and they take away a lot of my energy. On the other hand: Tramadol (Ultram in your country) makes me active, it gives me energy.
One day I would like to try methadon. My neuro is not up to it yet, because his opinion is that soon tolerance problems will develop. But I have seen miracles happen with this med in some groups. There are people who could go to work again.

Anyway, I don't like the DA's at all like you, Ann and Lyndarae.
So I am your partner in this misery.
Corrie

[Ridgerunner]

Hi, I am on Requip, it seems to work very well for me. It makes me intensly sleepy and I do not feel the painful sensations in my legs. One of the documented theraputic side-effects of Requip (and other DA's) is the enhancement of a positive mood, not sure how you are getting swings maybe there are periods of the day when the medication is below a theraputic level in your blood stream. Maybe you should pop some 0.25mg's throughout the day. Also, give these a chance. Save the narcotics for later, once you really need them.

[ViewsAskew]

Not sure about lyndarae or Corrie, but I gave Mirapex 2 long years. As my dose increased to combat the augmentation, my side effects increased. The mood swings got more dramatic and more frequent. When I stopped it, they stopped and so did the songs.

IMHO, meds that alter neurotransmitters are a crap shoot. They are not going to have the same effect on everyone because there are lots of other neurotransmitters that can get out of whack when you change one--seratonin, GABA, etc. are all affected. I strongly feel, given my symptoms, that when I take the dopamine agonists, I end up with excessive dopamine, which affects how much seratonin I have. The lowered seratonin is responsible for the mood swings. I find myself trying to "medicate" with food: pasta, bread, rice, desserts. Anything to increase the seratonin. When I stopped the Mirapex, the cravings for this stuff went away, the mood swings went away, the songs went away. Although it was only 5 or 6 weeks, it was long enough for me to notice and appreciate it. Just 5 or 6 days on the Requip and these things are coming back. . .chance? I don't think so.

Edited to add:

I'm sorry that you guys have had these things, but glad to hear it from someone else. Corrie, I have a feeling that this moodiness I'm having is different from the anxiety, fatigue, grumpines, etc. that I get as a side effect from the RLS. When I stopped the Mirapex, it was actually during the worst RLS of my life, yet the crying episodes completely stopped. I can't explain it, but it's a different feeling, too. It's like I'm watching myself dissolve into tears but actually don't feel bad.

[Guest]

Augmentation with Mirapex is a known issues as is not the case with Requip, your nero should have known this. Keep giving the Requip a shot.

[ViewsAskew]

Augmentation is also a problem in at least 10 percent of those that take Requip. When I started taking Mirapex, is was only 10 percent. Now it is 30 percent. Not saying that I think that this means the percentage will change for Requip, just that it does happen.

Augmentation is not at issue in our posts, though. The other side effects are. Like Brady said in a post in a different thread, taking meds to counteract other meds is sort of crazy when there are other options that may work as well without causing problems for that person.

[cornelia]

Ann, I think it sounds plausible what you are saying. When I read your posts I don't think you will ever become happy with this kind of meds. So don't I. In spring a new DA will be marketed, Rotigotine patches, maybe it will work differently, but I doubt it. The patches come in different strengths and it is one patch a day. Da's are supposed to be mood enhancers, that's right, but they definitely don't change my mood for the better. As I said, Tramadol does, but with severe RLS it is just not possible it to be one's only med.
Anyway, good luck with getting the right med, it sure is an upward struggle.

Corrie

[lyndarae]

Hey all, Well thanks to you all for helping be more aware of side effects. All of these things are hapenning to me and I probably would have let them slide by if they had not been called to my attention.How strange one med will work wonders for one person and not the other. This is probably one of the reasons docs are throwing their hands in the air. I know I have heard my doc say, well this worked great for my other patients!!!!! What is wrong with you????Some of you have held out for years giving the meds a try and thanks to you I dont have to. Mirapex IS NOT working for me and Im decresing it,starting today and calling the doc. Thanks all~~~~~~~~~~~~~Lyndarae

[ViewsAskew]

OK, I've taken my last Requip. Yesterday my RLS started several hours earlier than it has been, and this morning I had incredible rebound. I had it for an hour or so after waking and then it "threatened" all day, By 2:30 I had to take drugs; now at 12:30 AM, I'm in a full-blown attack. I've taken other meds twice and they are not touching it. This is just like the augmentation I had with the Mirapex.

As with all therapies with RLS, nothing works for everyone. I knew that the Mirapex was a problem long before I quit taking it. I was afraid to push it with my doctor. I thought I didn't "know" enough to be making that decision. I worried that I should take it as long as I could because eventually it would stop working anyway and I'd have to switch, and might eventually run out of drugs to try. I thought I was wanting too much. All of that kept me from doing anything. But none of us should have to do that. Darn it, if something isn't optimal, we have the right to try to find something that is. If nothing can be found, so be it. But at least we tried. I'm not settling for mood swings, rebound, augmentation, songs stuck in my head, and insomnia when there are lots of other things to try. Some other combination WILL work better; I just have to make sure that I do what I need to get it.

Of course, as with all posts on this board, this is only MY experience. Requip seems to be a godsend for many. So does Mirapex. Heck, Jan's been taking it for 5 years and it still works wonderfully for her. I'm glad for that and hope that one or the other work for lots of RLSers for years to come. For the small minority that have problems with both of them, well, here's to finding something that works for us for 5 years.

[becat]

Amen Sister!
I tell you when you say that you took it longer because you didn't know enough, I cheered. I am with you. If these medications work for anyone, God Bless you. Be well and with health.
They became part of the problem for me. Really making things worse as I continued. I went along with it for the most part for about a year too long. It cost me things physically, I have yet to admit. I was already a mood swing in constant motion, due to life events that lasted 3-5 years. Mine is not a heart to judge by this medication.
I will tell you that the sujbect has come up before........do we really need to wait til the next appt. if something is not working? My next appt. isn't for 6 months. That's a lengthy wait if I'm in a RLS nightmare. There are different amounts of time we may need to wait for a medication to start working. I ask now, "how long will it take to notice a positive difference?" I now call the doc. back after I know, I know for sure, that a medication is not working. I no longer wait my appt..
View, I wish you the very best of luck in your search. Something tells me you'll get it done sooner, not later.
Hugs to ya.

[cornelia]

Yes, patients need to be on kinds of meds they are happy with, if possible, because it makes life better.
But I think that if you look at RLS in the long run, people have to switch regularly from one kind of meds to the other. Narcotics too probably won't work all the time either.
In one of the last Nightwalker's Mag I read that Waterman (?) wrote that after 10 years of treatment it seems to him he is back from where he started and he is on the Board of Directors, probably getting the most knowledgable treatment.
The last 14 months I have seen my neuro about every 6 to 8 weeks and am still trying to get the right combo. As I said, it is an upward struggle!

Corrie

[jan3213]

Hi All

When I read about the problems some of you have with Mirapex, I realize how lucky I've been! I honestly have had no bad side effects--except maybe a little insomnia--and then I'm not sure if it's the Mirapex or not. My neuro just recently increased my dosage to 5 mg. a day, which is a lot I know, but he did it because he just diagnosed me with fibromyalgia. I've got to tell you, after not sleeping well for so long, I'm now sleeping 7 hours a night and taking naps!! I'm a whole new me. I guess everyone has to do what they have to do! Ann, I hope you find the right combination soon! My neuro has always assured me that the right combination is out there--sometimes it just takes time! I wish I didn't have to take a thing!!! But, in order to have some quality of life (which IS a little bit important to me), I have to take meds. I am blessed with a good doctor who LISTENS and CARES. By the way, Happy Thanksgiving to all!!!

Jan

[lyndarae]

HEY ALL, WELL ITS BEEN ONE WEEK SINCE I CUT BACK ON THE MIRAPEX,ALREADY MY HEADACHES ARE GONE IM NOT SO DEPRESSED AND THE CTRAWLIES ARE STILL THERE BUT SEEM TO NOT BE AS BAD.iM WORKING GRAVEYARDS NOW SO STAYING UP ALL NIGHT WHEN YOU HAVE TOO IS VERY DIFFERENT.I SEE THE DOC ON MONDAY AND I REALLY DONT KNOW WHERE TO GO FROM HERE.I GUESS IM JUST ONE OF THOSE PEOPLE WHO DO BETTER ON LOWER DOSAGE OF MEDS.AS FAR AS THECRAWLIES GO I GUESS I MIGHT JUST HAVE TO DEAL WITH IT CAUSE NOTHING I HAVE TRIED STOPPED THEM BUT WHEN I FIRST STARTED THE ZANAX THEY WERE GONE FOR ABOUT 2 WEEKS I DONT GET THAT I JUST GOT THROUGH SHOVELING SNOW OFF MR CAR SO I CAN FIND MY WAY TO WORK TONIGHT. MY LEGS AND FEET HAVE BEEN CRAMPING ALL DAY,THIS IS DIFFERENT FOR ME I THINK IT MIGHT BE THE COLD

I JUST WANTED TO TELL JUMPY THANK YOU SO MUCH FOR YOUR HELP WITH MY JOURNEY MY LIFE IS A BETTER PLACE SINCE YOU CAME IN TO IT~~~~~~~~~~~~~~~~~~~~~~love to all Lyndarae

[cornelia]

Lyndarae, my neuro's opinion is that with regards to DA's more is not always better. Initially I didn't believe him, but he has proven right in my case. With my former neuro I was on a high dose of Permax and this one put me on a relatively low dose of Requip (1 mg). The RLS is just the same.
I just stopped using Xanax (0.19mg) and replaced it with Neurontin. According to my neuro Xanax does nothing for RLS, it is used for panic attacks and for sleeping. Neurontin makes me sleepy and works on the PLMD's. Coming off the Xanax wasn't a problem at all and the Neurontin works as well.
Maybe an idea for you?
Anyway, just my 2 cents.
Bye, Corrie