Mirapex and Vision/Balance Problems

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
BonnieB
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Mirapex and Vision/Balance Problems

Postby BonnieB » Sun Dec 11, 2011 5:16 am

I have been taking Mirapex for about 2 1/2 years now and obtained success not reached with Nurontin, Requip, and a couple others. I have been pleased with improvement thus far.

However, a few months ago I started experiencing double vision and difficulty focusing at times. I had an eye exam and was prescribed glasses for distance and watching TV. It has now been about six months and I am still having difficulty with my vision. As a matter of fact, I think it has worsened. Recently, I noted a problem while driving. Additionally, I have noticed a problem with balance while walking. This is sporatic but seems to be occurring more frequently.

I decided to check the side effects more closely for Mirapex and discovered that vision problems can be a side effect of the medication.

I am wondering if anyone else has experienced similar problems. If you have experienced anything similar I would really appreciate hearing from you. Any other suggestions would also be appreciated.

Thanks.

badnights
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Postby badnights » Sun Dec 11, 2011 6:30 am

Hi Bonnie

How awful to develop such a side effect with a medication that was working so well!

There was someone posting recently about similar problems with Mirapex so I searched and found the thread:
http://bb.rls.org/viewtopic.php?t=7411

I think that link should take you to it, but if not, the thread was begun on Mar 8, 2011 by carlatsaunders in the "General Topcis: RLS" forum. Either browse that forum to get to it, or use the Seach link at the top of this page and enter "vision".

I think she had to go off the Mirapex; maybe she will post back and let you know what happened.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

BonnieB
Posts: 24
Joined: Mon Jul 28, 2008 4:07 pm
Location: Antelope, CA

Postby BonnieB » Sun Dec 11, 2011 2:25 pm

Hi Beth,

Thank you so much for responding. The first thing I did when I awoke this morning was check my email, hoping for a response.

Yes, you're right; I can barely stand to think of having to go off the Mirapex after finally experiencing such welcomed relief. It was kind of a last ditch effort that I started Mirapex. I had been prescribed just about all the drugs used for RLS by my neurologist, and then, on a visit to my primary care physician for something else, my primary care physician asked me if I would be willing to get off what I was taking currently (can't recall off the top of my head which one that was at that time), since it was not giving me much relief. He said he had another patient who had been taking Mirapex with good results. I did start the Mirapex and could not believe the results. (I had had a horrible and scary experience with ReQuip, so I did have some initial concerns since I believe they are similar drugs.) For the first time in years, I began to feel like my old self; what a relief to finally get some relief.

While the symptoms I'm having now are scary due to the many things that could be causing them, and I don't even want to think about what would happen if I have to go off Mirapex, I would rather the Mirapex be the cause of the symptoms than have the symptoms caused by something even more serious. I can't imagine going back to where I was with RLS symptoms. That absolutely terrifies me!

I regret that someone else has had a similar problem, but I am happy she took the time to report her symptoms. At least now I feel there is more of a reason to follow through with the Mirapex possibility. How true it is that these new symptoms are so very difficult to describe. My legs feel weak and wobbly at times and it's as though my legs and my eyes are out of sync. Just turning my head sometimes while walking to talk to someone seems to challenge my balance. Also, the glasses did help but by no means did they eliminate the problem. My eyes are so sensitive to light that even with sunglasses, I still have to hold my hand over them to help block the sun.

Excuse my rambling, but just wanted to share a little bit more about my symptoms. I am so grateful for your response and I, too, hope Beth will see the post and respond.

Bonnie

Polar Bear
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Postby Polar Bear » Sun Dec 11, 2011 4:04 pm

Bonnie: Just a thought here - you were taking Mirapex for 2 and a half years when these other symptoms started a few months ago. This is a long time for a side effect to show itself and I wonder has your GP checked for another cause.

Of course you don't want to have something else to have to deal with but it could be something as simple as a low grade ear infection. Either way, it would be best to mention these symptoms to your GP to make sure, rather than assuming that they are a Mirapex side effect.
Betty
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ViewsAskew
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Postby ViewsAskew » Sun Dec 11, 2011 8:34 pm

Have you increased a dose recently? I wonder if that would do it.

While PB had a very strong point, we do get other side effects over time with these drugs - like augmentation. Maybe they work differently and can cause side effects long after we start.

Wish we had a pharmacist here....
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Postby badnights » Mon Dec 12, 2011 6:26 am

HI Bonnie

It was good to hear back from you.

I can relate to how you must have felt when you started to feel like your old self again, after starting Mirapex! Now that you know it's possible to feel normal again, hang on to that; keep that as your goal if you end up needing to change meds! :) (or as close to normal as possible.)

The lady who posted previously about vision problems due to Mirapex had been on it for 20 years !! (even if she made a typo, she was speaking of years) so, I guess it's possible to get a side effect years later.

The only way to know for sure, unless the GP finds something else to be the cause, is to stop the Mirapex, as an experiement. If the vision/balance problems go away, start it again; if they come back, you're sure of the cause. But I would suggest you do this with your GP as a partner.

How knowledgeable is she/he about WED/RLS? Would he know that there's such a thing as Mirapex withdrawal for RLSers? The reason I ask is that you should have a backup med, both to control the RLS and to deal with the withdrawal, if you do the experiment.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

BonnieB
Posts: 24
Joined: Mon Jul 28, 2008 4:07 pm
Location: Antelope, CA

Postby BonnieB » Mon Dec 12, 2011 10:35 am

Polar Bear - You are absolutely right, my symptoms could be related to something relatively simple and, of course, that is my hope. When I see my PCP December 22, I will attempt to cover all my symptoms with him. I am only trying to provide myself with as much info as possible prior to my visit so that I may be able to raise questions and pass on any new info I may have.

More often than not, when I have a problem that I can't account for, I first check the side effects of medications I am on because that is easy to do. After being on ReQuip for a while and having such a horrible experience, I tend to be even more cautious.

The reason I decided to contact this board was because vision problems were mentioned as a severe side effect of Mirapex, and I thought if others had experienced similar problems as I, that I could gain additional information. I have never forgotten how helpful and supportive the members of this board were when I initially joined, and I'm turning to you again for guidance.

Thank you for responding, and I will definitely take your advice.

BonnieB
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Joined: Mon Jul 28, 2008 4:07 pm
Location: Antelope, CA

Postby BonnieB » Mon Dec 12, 2011 11:12 am

Hi Beth,

Thanks for getting back to me. In researching the side effects of Mirapex, I have found that there are people who have been on the drug for a long time before experiencing side effects, some of them similar to mine, some a lot worse. I don't want to sound as though I am self-diagnosing my problems and I am trying to pinpoint Mirapex as the cause, but with vision problems being listed as a severe side effect of Mirapex I decided to check it out a little further. Having experienced a problem with ReQuip, I am aware that we are dealing with powerful drugs.

Your suggestion pertaining to ruling out Mirapex is an excellent one, and I will definitely take your advice. Unfortunately, I have already cut my dosage in half just to see if I can detect any difference at all prior to seeing my PCP December 22. I'm thinking I will try to leave it at 0.125 (if I can maintain) since December 22 is not that far away. I walk 5 to 7 miles every day, and I believe I will notice any improvement in my balance/coordination right away.

I really can't say how knowledgeable my PCP is about RLS and Mirapex withdrawal. He is the one who prescribed Mirapex. I can say that he is not easy to talk with (seems to be thinking ahead of what I'm saying and not really listening closely), but I believe he is a very good doctor. The neurologist I see admitted that he and most doctors do not understand RLS nearly as well as they should. My neurologist is the one who prescribed all the other drugs I tried before Mirapex, none of which helped.

I do not know what my doctor will suggest, but I am leaning toward your suggestion...getting off Mirapex for a while, at least to rule it out.

BonnieB
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Joined: Mon Jul 28, 2008 4:07 pm
Location: Antelope, CA

Postby BonnieB » Mon Dec 12, 2011 11:27 am

Ann - Sorry I skipped over your reply; I apologize.

Yes, about a month ago, I noticed that I wasn't getting the usual relief, and I increased the Mirapex by 0.125, taking 3 tablets approximatley 2 hours before sitting for the evening. I'm trying to recall, but I can't be sure if my symptoms worsened around that time. I am inclined to think they did and that is when I first checked for side effects of Mirapex. I'm guessing I stayed at 3 tablets about three weeks. When I learned that Mirapex could be the cause of problems similar to mine, I immediately dropped back to 2 0.125 tablets and that is where I have remained.

And, yes, I learned about augmentation and side effects first hand while on ReQuip. I hope I never had to go through that again. That was so bad, I stopped the ReQuip instantly. It was truly rough going, but the side effects were so bad I didn't feel I could stay on it long enough to taper off.

Thanks for responding.

sleepdancer
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Vision Problems with Mirapex

Postby sleepdancer » Fri Dec 16, 2011 2:42 am

Does the literature you've read describe exactly what type of vision problems might be expected? While I was on Mirapex I developed very high eyes pressures and vision changes, but I also took Prednisone for a few months so I blamed the symptoms on it. When I was on Sinemet, which is a replacement drug rather than an agonist, I developed balance and vision problems. If I looked down I would feel like I was falling down and have to hold on. Couldn't even walk past a stairwell without feeling I was going to fall down it. I avoided heights and when unavoidable I would not look down.

About going off the Mirapex, please wean very slowly. I quit abruptly once and the consequences remain though years have passed. It caused a form of synesthesia due to a neurological glitch which my neurologist said was due to the abrupt stopping of the med. You are wise to be doing your own research. Unless you got lucky and found an exceptional doctor, many aren't very knowledgeable in this arena. The ideal doctor wants to partner with a patient in their care and is not offended by an informed patient who at the same time recognizes their limitations. Good luck on your upcoming visit.

badnights
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Postby badnights » Fri Dec 16, 2011 9:03 am

The ideal doctor wants to partner with a patient in their care and is not offended by an informed patient who at the same time recognizes their limitations.
Love it.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

BonnieB
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Joined: Mon Jul 28, 2008 4:07 pm
Location: Antelope, CA

Postby BonnieB » Sun Dec 18, 2011 6:43 pm

The insert included with the medication only mentions "vision changes" in the side effects.

WebMD lists double vision, problems with eyesight. I do remember a site where some had feelings of looking through a veil, another had difficulty focusing. and another had photophobia.

Due to the approaching holidays, I have not been at the computer as much as I would like. I am planning to research further as time permits.

As mentioned earlier, there are quite a few bad side effects, some of which I have had and others I have not. Even though the drug worked extremely well for RLS, right now I'm thinking that perhaps the benefit isn't worth the risks. However, I've only been off Mirapex for two nights, and those two nights have been miserable. Maybe I'll change my mind later, but I'm hoping that won't be the case. I'm definitely going to give it my best shot. This drug scares me

Chipmunk
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Postby Chipmunk » Mon Dec 19, 2011 5:41 am

Keep in mind that the first couple weeks off the Mirapex will be worsened RLS/WED, so if you can push through that (perhaps with the help of an opiod or anti-convulsant?), then you will have a better idea of what you are dealing with.
Tracy

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.

BonnieB
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Joined: Mon Jul 28, 2008 4:07 pm
Location: Antelope, CA

Postby BonnieB » Mon Dec 19, 2011 7:25 am

Thanks, Tracy. I need to hear that this awful time I'm going through now will, hopefully, only last a couple of weeks. I'm not sure if this is the third or fourth night, but I'm guessing I've had maybe two hours sleep during whatever period it has been. I tried to take a nap today, but the RLS started up with a vengence after less than five minutes. I have been taking Vicodin in the evening. I'm sure it's helping, but there is no noticeable relief.

I also have many concerns about what will happen after the withdrawal symptoms calm down, i.e., what drugs might be available, will they work, which ones carry the least side effects, etc.

Thanks for responding.

Bonnie

ViewsAskew
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Postby ViewsAskew » Mon Dec 19, 2011 5:49 pm

Bonnie - it's a tough place to be. More than once I've been sure that there wasn't anything else I could try and nowhere to go. I do not like being in that place!!!!!!

Having an excellent doctor is so important and often we don't have that. If you feel that your doctor isn't up to this, please, please find another one. Some of us have decided to spend money we didn't really have to visit a specialist that would be able to help us. It's been worth it.
Ann - Take what you need, leave the rest



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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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