Thanks for your response Ann— I’d never heard of the Amantadine. Funny how drugs affect each person so differently. I can hardly eat on this medication. It seems there is quite a balancing act, and some trade off to keep symptoms in check as best we can. Best to you.
Polliwog

Hello Pollywog, I have not responded to your thread sooner because I have no experience with Mirapex. However, I have five plus years of experience with Requip, and for the first four years Requip was my only PD medicine.
I am older than you, and have had few and mild side effects from Requip.

I have no hallucinations, but I do at times see sharp flashing lights in the dark - not a grid like you describe, but single, sharp, quick lights. For as long as I have had PD, my eyes have had what feels like a low grade inflammation/irritation, and when I get up in the morning, they sting, and it is hard to keep them open for the first few minutes. Eye exams show no problems. I think the lights are a PD symptom, as is the eye irritation.

I take 8 1/2 mg Requip daily, I don't know how that translates to mg of Mirapex.
Requip has never made me nauseous. It can cause stomach pain and heart burn, but both disappear if you take Flax Oil (caps.)

Requip gave me back energy and strength immediately. My tremor comes and goes, I have trouble tolerating noises, and I'm stiff and slow and have bad balance. A year ago I added a small amount of sinemet and 100 mg Amantadine. For me the Amantadine restores (almost) my balance.

Requip may agree with you too. It may be worth a try.

birte

P.S. what kind of art do you do?

Hey—Thank you so much, BEMM, for sharing your experience. It's so helpful to hear from someone else with their own lightshow. We seem to be in a minority.

Often it does come in elaborate grid and line patterns. Still many nights/early mornings for me, it is also more of a plain area, or simple area or shape of flashing light. The shape and intensity of light varies, as does the speed of the flash. (Some nights so fast, it’s more like a strobe light). The lights are always white. It seems to wake me, or perhaps I just wake and see it. It’s always in the dark at night or early morning upon my waking. It doesn’t happen to me if I fall asleep during the day.

Perhaps it is a PD symptom, if it is a drug side effect, it certainly varies from night to night. I’d expect a side effect to remain more constant, but I don’t know. The timing of it occurring for me, was when the dose was raised to the 1 mg. 3 x a day. I don't see reference to this symptom in the usual PD descriptions I've found.

I too have trouble tolerating noises. I did have this after my brain surgery in 2005 (clipping for a left middle cerebral artery aneurysm), for a few months. It came back on the Mirapex, and I have assumed it was that.

Perhaps PD could also contribute to my feeling of being irritated by too much sound or noise? We’re talking about our brains, I suppose many things are possible, and would vary greatly between individuals.
I’ll keep in mind, that it is possible my light show is from my PD, and be sure to talk about that possibility with my doctors.


Perhaps others will come forward now, if they are having a symptom of flashing lights, (at night in the dark) when awake, and eyes are open, regardless of what drugs treatments are being used. I’d be very interested in knowing.

I wish you well and will keep in mind the treatment plan that has helped you. Another reference to the Amantadine also. Good to hear your tolerance of Requip. I was under the impression it was harder to take than Mirapex. Must depend on the person. I can say the Mirapex has enabled me to walk and climb stairs easier, move my arm a bit better, most of the time my tremor is gone (when it shows up now it is quite bad though which surprises me. I don't know if I am progressing, or if the drug use can provoke a stronger tremor)?

Best to you.
Pollywog

P.S. : —) thanks for asking, fine arts and illustration work, I love detail work. Pencil, pen and ink, and monotypes mostly. Monotypes are prints, with just one print pulled from a metal plate I paint on with oils. I lay damp paper over that and run it through a small etching press. (Some work, some don’t!) Often I do nature studies, landscapes.

**********

BEMM, I thought you also might like to see what I found a few weeks ago.


These people are on Requip, for Restless Legs Syndrome, not PD.
(I found no reference however, to any lights w/people taking Mirapex).

From: Askapatient.com
http://www.askapatient.com


The symptoms people experience on meds vary so and seem to include nearly everything, sometimes opposite things (such as my inability to eat much on Mirapex, and others finding it an appetite stimulant).
Yet, this ‘light show’ is such an odd, distinctive, and intrusive symptom. You’d think we would hear more reference to it, whatever the cause.

At this site, people may rate the prescription drugs they are taking, or just look at the site. I didn't have to sign in. Three people with RLS on Requip wrote in, mentioning lights as a side effect, one didn’t sound the same as mine, they described seeing the lights with their eyes closed. The other two sounded as if they could be the same type of light images.

It is hard to know how each person might describe their experiences. For me, (and it sounds like you as well, if I am understanding correctly) the lights are seen only when my eyes are open and I am awake.


The people in the first and second quotes below, mention a light show and their eyes sound as if they’re open. One mentions flashing white lights...”seeing flashing lights, as if a police car with white lights is parked outside my windows.” The other speaks of “weird light patterns and sounds, almost like I’m hallucinating.” after their dose was raised from 3 to 5 mg.

That sounds like it may be the same...(I suppose it is possible someone with RLS, may have PD and not know yet also. I understand there may be a correlation, possibly).


Quotes taken from the (Askapatient Drug Database): 3 different people:

*3
restless legs
I had no side effects building up to 1mg. However when I tried to stay at that dose, the nausea was too much. Also having some vision issues, seeing flashing lights, as if a police car with white lights is parked outside my windows. Not sure if the side effects are worth it.

*4
RLS
I've been on Requip for a couple months now. Although helpful at lower doses, I was still not able to sleep through the night and was taking Tylenol PM also. My doctor jumped me from 3 mg to 5 mg and that's when the negative symptoms started, mainly the nausea (resulting in vomiting), weird light patterns and sounds, almost like I'm hallucinating. I think I will ask to reduce my dosage to 4 mg and see if these side effects subside.

---------------------------------------------------

RLS
Significant increase in RLS symptoms in the evening or even during the daytime if I'm tired. Weight gain. Flashing "lights" when eyes closed at night. Sometimes get tired during the day and can fall asleep.
Helps a lot at night - I'm sleeping much better than before. However, it takes at least 2 hours to kick in - in the meantime I get some pretty strong symptoms in the evening. I got used to the weird light show and am definitely dreaming a lot - actually like that. A definite improvement at night, but significant drawbacks during the day. I was wondering where all that weight came from - but reading this page tells me that it's a common side effect.

I have been on mirapex for a few years. I never associated the lights at night with it, but if they are related, I have that. I am on the same dosage as you are.

I also have the shadows, and experience other lights, too, but the shower of lights with subsequent dots and spiders are resultant from two vitreous detachments.

Another source of the lights is from visual migraines, which I also have, but these are easily discernable from the others. A small arc of bright light forms, and then over about ten minutes, the arc forms into a perfect circle and then disappears.

Hope that this helps,
mama

Mama—I'm so grateful to hear of your experience. It does help very much to not feel like I'm the only one experiencing something so unusual. I too have had some visual migraines in the past related to my aneurysm and stroke angiograms so also know those are easily discernable from the other type of 'lightshow'. So we are on the same dose—you even see the shadows I do.

I hope you are doing well on it, in terms of the PD symptoms. All the best to you.

Polliwog

Thank you Pollywog, for the RLS & Requip references. RLS is somewhat related to PD, it is also a common symptom for PDers. Very interesting, the person who finds a low amount of Requip helpful, and an increase detrimental. I took 12 mg Requip daily for a short while, and began to feel much worse. As soon as I cut it down to 8 1/2 mg daily I felt much better. I've kept it at 8 1/2 for the last two years now.

Just as interesting is the mention of migraine auras. You have them, Mamafigure has them, one of the RLS comments mentions them, and I also have them - there seems to be a possible connection. It's curious that migraine auras are quite individual. Mamafigure sees a completely different pattern from the one I see. Mine is a pulsating, chevron patterned band of color stripes. They last up to 20 -30 minutes, and are completely painless.

I am very fond of prints. Printmakers John Wood (NY) and Harold Boyd (IL) - just on the remote but fun chance that you might know of them - have made most of the prints we own. My husband makes glass, and I was a potter, so our 'collection' was mainly bartered for - years ago.

With PD it is so important to be keenly aware of one's body's reactions to the drugs we're prescribed. It takes experimentation to find the right combination of meds. I hope you have the kind of neuro. who lets you take part in the decisions.

All the best

birte

Birte and Pollywog,
I have RLS, too, and the Mirapex got rid of it until very recently. I have some other medical stuff going on right now. (Yesterday I was grounded from working for a week because my iron was down to 8.5 and my dr hospitalizes you with 8 - and I don't do well in hospitals0

I see shadows, but I think that they are more connected with the floaters formed from the vitreous detachments.

My night vision is extremely poor for my age (53) and I see lights in duplicate and triplicate. Do you have that?

My dr still insists that I don't have real parkinsons, but parkinsonism derived from a virus.
mama

Birte,
The idea of my Parkinson’s diagnosis feels so new for me, yet in other ways it makes perfect sense, answering questions in hindsight like fitting in a puzzle piece. Your warm and thoughtful answers are much appreciated.

Interesting connection, it makes me want to watch answers from anyone seeing the flashing lights and or patterns of lights— to note if they also have had optical migraines in their history. I suppose we could be more predisposed to the odd effect.

My optical migraine was brought on by an angiogram, to photograph my left cerebral artery aneurysm. I saw a flat oval spreading across the ceiling, nearly filling it—rippling as if floating on water. It was metallic pink and iridescent. Lasted 20 mins. or so, which seems to be the norm.
(My later angiograms brought on a small stroke after each procedure, causing several months of moderate to mild aphasia. The small blood vessels throughout my brain are frail and abnormal. No more angiograms for me. My last mild stroke was in September of last year).

My daughter had optical migraines due to hydrocephalus and brain and spine cancer treatments. (Stable now over five years, bless her). She often saw grids, and geometric shapes, and what she said looked like chicken wire.

After leaving two doctors, I have one I am very happy with. I imagine it will take adjustment to find a good balance with my meds. Good to note sometimes ‘less is more’—it can work that way on Requip.

It’s so nice of you to share the stories of your work and artist’s you care for. I hadn’t heard of the printmakers, was able to find a Harold Boyd from Illinois on the Internet regarding a book available, but no close ups. If that’s him, it looked like lovely and interesting work.

Glasswork has always fascinated me, when I was in high school you could visit a studio in town. Such a process to observe. We have some small pieces from local artists. Got to see Dale Chihuly’s work once. We loved walking beneath a glass ceiling, filled with his unusual organic shapes, like being under a fantastic imaginary reef.

How I respect your beautiful craft. I loved the feel of clay, but could never center a pot well! My grandparents, when I was little—had a ceramics studio (not hand crafted, but with poured molds for plates and such), and taught ceramics to the blind members of a local support group.

Art is a wonderful thing. My hope is that as long as I continue to find ways to do mine, in some measure, it will go a long way in keeping me well. My daughter is legally blind, and spends part of each day drawing beautiful angels. Good inspiration for all of us.

Wishing you all the best,
Polliwog

Hello Mamafigure,

Well, I do have double, even triple vision—mostly corrected with glasses. But this vision problem is a direct result of the brain surgery for the clipping on my aneurysm. My night vision is also poor (I’m 51), but does seem worse since brain surgery. I’ve never had any kind of vitreous detachments, or other unusual problems with vision except a great loss of vision in my right eye, before any diagnosis of aneurysm was made, which was likely caused by the aneurysm itself causing some damage.

I never spoke to a doctor about RLS, but I had it off and on mildly. It was bothering me in the months before the Mirapex, so I suppose it addresses that as well. Might as well get some extra use from all this work taking it...

I’m sorry to hear of your recent health issues, it’s hard dealing with multiple concerns. Hang in there if you have to go to the hospital later; after years there in Pediatrics with my daughter, I learned the adults section is not nearly as user friendly. If you have to go in the future, I hope you meet some kind nurses and staff to lighten your stay.

I’m not familiar with Parkinsonism from a viral cause vs. Parkinson’s, have only seen brief mention of it.

I wish you well with your current concerns.

Take care,
Polliwog

Hello Polliwog, thank you for your kind post which I should have answered. It slipped away, but the mention of migraines by English Country Dancer made me think of your thread.
Harold Boyd of Illinois is indeed the artist I mentioned, I like his work very much. So nice that you looked him up!!!
I wish I could get myself motivated again to draw, but PD seems to have put a damper on my creativity. Someone, I forget who, in this forum, theorized that if your right hand is affected, the left side of your brain would be affected - the rational, sensible side.......
Well, my left side is the one affected, so the right side of my brain - the creative side, is muted......
A bit of an excuse.
I think the newest theory is that we use the whole brain at the same time, so it won't do. Many others here have, however, felt a burst of creativity with PD, so maybe there is something to the right-left idea after all.
Your daughter must have found the one thing to draw that makes her happy. An artist is never done with a motif until he/she feels done with it, and there is no end to variations or improvements in the artist's mind. My husband had to tear himself away from continuing a group of work when he felt that as an educator he could not ask the students to be innovative, and not make new and different work himself. He could happily have continued making the same pieces with millions of variations, and they would all have been beautiful. But so is the new work.

All the best,
birte