Sinemet and eye discomfort?

[1LittleWillow]

I just started Sinemet on Saturday (1/16/21). I have only taken supplements up to this point (diagnosed 8/2018, earliest symptoms began in '15-'16). I take no other Rx or OTC medications. I've taken B1/HDT since 11/2018.

I decided to start meds for two reasons. Firstly, I hope to eventually have FUS-PTT, and secondly, the tremor, rigidity, and dystonia in my left hand/arm are beginning to impact my quality of life.

I saw my MDS on Friday, and he prescribed Sinemet 25/100: 1/2 pill 3x/day for a week, then 1 pill 3x/day for a week, then let him know how I'm feeling. I took my first dose Saturday morning. I wish I could remember if I had this eye issue when I woke up (prior to taking the Sinemet), but I'm not certain. I took the first 1/2 pill about 10 minutes after waking up, and started noticing the problem within an hour or two. I was having a very lazy morning, so it's hard to pinpoint when it started.

Since Saturday morning, my right eye feels... weird. It's hard to describe. It's very mildly irritated, watery, filmy, occasionally feels like a muscle spasm, yet not an eyelid twitch. When I first wake up my eyes are watery (as usual) and don't feel dry. My left eye feels a little "off," but not as noticeable as the right. I can see normally, but it's mildly uncomfortable. I've tried allergy eye drops and lubricating eye drops, but nothing has helped. I've never had anything like this before.

I've googled, but can't find anything linking Sinemet to eye issues. Has anyone else experienced anything like this? If it doesn't clear up soon, I'm going to see my eye doctor, but I thought I'd ask here first.

Editing to add that I don't normally wear a lot of makeup, I didn't wear any all weekend, and I haven't recently changed any makeup, hair care, or skincare products.

[jimcaster]

I started taking Sinemet about two months ago. I have not had any issues with my eyes. I have not heard of eye issues as a side effect of Sinemet, but we're all different.

[Maxjc in reply to jimcaster]

Yes Jim! We ARE all different, and thank the Lord for that!!Stay well

[Astra7]

I have the same problem but was told it was nothing to do with sinamet. I ended up at the eye specialist but he could find nothing wrong.I find I cannot cleat the eye somehow - I keep blinking as if there is something in there, and it’s kind of watery.

Does that sound the same?

[PDvirgin in reply to Astra7]

Same here. Thought it was eye drops for glaucoma which has developed because of PD. Begged to have days off from drops but they say must not as might go blindDo you have glaucoma?

[Astra7 in reply to PDvirgin]

No glaucoma. Apparently I have lots of floaters.

[PDvirgin in reply to PDvirgin]

Yes and I have everything you fr

[1LittleWillow in reply to Astra7]

Yes, Astra7, that sounds somewhat like what I'm experiencing. It's such an unusual feeling that it's hard to describe.

[Phero in reply to Astra7]

Can you tell me the colour of your Sinemet 💊?

[Astra7 in reply to Phero]

It’s madapor actually. Orange pill scored into 4.

[1LittleWillow in reply to Astra7]

Astra7, have you been checked by an ophthalmologist for EBMD? Once it has progressed sufficiently, they can easily spot it by looking at your eye with a slit lamp.

[LAJ12345]

My husband has found levodopa makes his arm muscles tight. I wonder if eye muscles can get tight too.

[Parkie- in reply to LAJ12345]

I have the same as your husband and also wondering if it's some kind of levodopa induced muscle spasm (my eyes are difinetely blurry on sinemet).

[1LittleWillow in reply to Parkie-]

I've been wearing readers for up-close work for several years now (presbyopia), but I've noticed that there are randomly days when my vision is much better and days when it's much worse. There's no rhyme or reason to it. I have assumed it's just the PD, but I'm not sure about this new problem.

[LAJ12345 in reply to Parkie-]

I am sure it is. It also made him anxious again. He is taking a 1/4 tablet kemadrin morning and night and he is a little better. Also the apolloneuro device.

[SonarsMom]

Before I started taking sinamet, I had a problem with one of my eyes darting when I was reading or doing close-up work. I know this problem was not related to the drugs but I want to share this because I was referred to a neurological opthamologist. I did two sessions with her and the problem was eliminated. I did not even know there was such a thing as a neurological opthamologist, but am glad I found her.

[LAJ12345 in reply to SonarsMom]

What did they do?

[1LittleWillow]

Thank you for the input, everyone! I have an appointment with an ophthalmologist on Monday. I'll do a follow-up here after I see him and let you all know what he says.

[HugoRipanykhazov]

I have most of the symptoms mentioned by everyone here but it never occurred to me that eye symptoms were anything to do with PD or Sinemet? i also have had worsening ptosis on both eyes and had an operation on that a few months ago. After the operation, the symptoms you describe became substantially worse.

That may indicate that the symptoms are probably nothing to do with PD or Sinemet?

Do you have any abnormality with sugar levels?

[1LittleWillow in reply to HugoRipanykhazov]

No, my sugar levels are normal.

[rescuema in reply to 1LittleWillow]

HugoRipanykhazov asked a very relevant question. Even if your glucose levels were normal, you might want to start monitoring daily to see if it start to trend up with sinemet. Sinemet may interfere with glucose absorption by skeletal muscle and you want to keep a close eye on the increase in insulin resistance common in PD. Insulin resistance directly contributes to blurry eyes and vision issues.

ehealthme.com/ds/sinemet/hi...

[1LittleWillow in reply to rescuema]

Thanks for the heads up!

[rescuema in reply to 1LittleWillow]

The best way to counter the raised glucose? - Exercise! ; )

Your eyes may feel better afterwards as well.

[Astra7 in reply to rescuema]

I didn’t know sinamet could cause Hugh blood sugar levels. That is v interesting.How do you monitor that?

[rescuema in reply to Astra7]

glucose monitor or diabetes testing kit. Here are some of your options.

amazon.com.au/s?k=glucose+m...

[LAJ12345 in reply to HugoRipanykhazov]

No

[LAJ12345]

My husband's eyes have always done this flickering of the eye lids. Especially when he is making a point about something he feels strongly about. I think it is anxiety related.

[Ghmac]

FOLLOWING

[parkie13]

I have been experiencing eye issues for a while now. Finally I went to my GP and she diagnosed and eye infection. I got some drops with an antibiotic and that seemed to help while I was taking it however my eyes still felt gritty in different places on the inside of the eyelid. So, finally I made an appointment with an ophthalmologist. His diagnosis was a chronic dry eye. I have never had any kind of eye discharge from my eyes. He recommended dry eye drops.

I got a sheet with his recommendations for drops. There was good better and best the three best ones are systane complete, refresh repair, Oasis Tears PF.

The only one that I have tried is the systane complete. I got some relief. However I think that the systane irritates my eyes also. The main ingredient is propylene glycol.

However, looking for eye drops on Amazon I stumbled on something that seems to help.

Ocusoft Hypochlor hypochlorous acid solution .0 2% for eyelids and eyelashes non-toxic non irritating soothing.

You can read all the feedback for the product on Amazon. I use a square of Scott's toilet tissue and spray the folded square, two, three times and wipe my eyelids. You can also spray your eye while it's closed and then wipe your eye. It has really helped me.

The other thing that seems to help also is using a eye cup with saline solution putting it up to your eye and blinking few times. And doing it again for the other eye. Hope it helps. Mary

[John_morris71]

My mother had constant watering and some itching that made her eyes red. Took her to the eye doctor and she told us that many PD patients do not blink like normal people making the eye dry and leading to some problems . She suggested using over the counter 'OPCON - A' ( eye allergy relief from Bausch and Lomb) and 'REFRESH - OPTIVE ADVANCED' (Lubricant Eye Drops).

I use Refresh once in the morning before her nap at 9.30am - one to 2 drops per eye and then Opcon - one to 2 drops per eye before going to bed at night. Since 4 years, she does not have any issues with her eyes and is normal. I know you have tried to do this, but wanted to share with you. I have to admit that I am not sure if she had issues due to taking Sinemet.

[ladyaudree]

My eyes are red and watery looking all the time. Eye doctor said dry eye but the drops don't seem to help.

[John_morris71 in reply to ladyaudree]

Sharing some info; I am not a doctor so please do not treat this as medical advice.

I know a remedy used in India - given by a friend - for red and watery eyes. Seems to provide relief for that red eye and burning sensation too.

Take a few raw coriander seeds ( should be available in any Indian Grocery stores, also goes by the name Dhania in Hindi). Soak the clean seeds (whole seeds - no dust particles) - say about 10 to 12 seeds in about 50 ml of water. After 3 to 4 hours of soaking, use a dropper to squirt a couple of drops of that water only - no seeds, into each eye. Do this for about 3 to 4 times a day (even once before going to bed at night). Make a fresh batch every day.

[ladyaudree in reply to John_morris71]

Thank you I'll try it. I googled it and fond some links including this youtube. youtube.com/watch?v=AhTjgdt...(Not working as expected?)

[John_morris71 in reply to ladyaudree]

Nice ! Let us know how it goes after a couple of days.

[HugoRipanykhazov]

Not sure if anyone is still reading this but there was an interesting segment on PIX Channel 11 this morning describing all our symptoms and suggesting that they all arise out of too much computer usage during the pandemic.

The cure apparently isn't blue blocker glasses, which apparently don't really work. The cure is using something called Night Mode on the computer, looking away from the screen regularly or possibly eye drops.( IMHO there is no suggestion of Sinemet exacerbation)

[1LittleWillow]

UPDATE: I saw my ophthalmologist on Monday, and it turns out I have EBMD. Apparently it was just a coincidence that I happened to develop some irritation and inflammation on the very day I started the Sinemet.

[Astra7 in reply to 1LittleWillow]

Can it be treated then?

[1LittleWillow in reply to Astra7]

There's no treatment for EBMD. You just live with it. I'm going to do some more research and probably add supplements to support eye health. My ophthalmologist said to continue to use lubricating drops or ointment when I experience discomfort.

[Phero]

Hi, Can you tell me the colour of your Sinemet 💊 ?

[1LittleWillow in reply to Phero]

It's yellow.

[Phero in reply to 1LittleWillow]

Thanks so much for your reply - I had the same reaction but it took some time for the symptoms to appear. And after I stopped taking the yellow the problem disappeared and my dry eyes are dry no more!

The yellow is the result of quinoline yellow (a dye used as a food colorant in many products and added to the pill to distinguish the loading of Levodopa - ie 100mg.).

[1LittleWillow in reply to Phero]

Interesting! Thanks.