Hi.. I am 62 and was diagnosed 4 years ago with fine tremors on left side, stiffness and slowness to the point of almost a full stop. So now it's 4 years later and I've had to quit work a job I felt very passionate about. I'm driving very little now only short distances and when I feel I'm on my meds. I am taking Sinemet 100/25 2-3 tabs every 3 hrs. I usually get about an hour "on" time. I've noticed lately a telltale sign that med wearing off is blurred vision..I've told my neurologist but of course she says she hasn't heard of this so its not related? Just wondered if any one else has had this ?
Blurred vision: Hi.. I am 62 and was... - Cure Parkinson's
Blurred vision
Annie11
Hi Annie
I get blurred vision too. I have no idea what it comes from.
When it hits, I put on a hat to shield my eyes from light, and also sunglasses.
It comes and goes, and I do not know what the connection is to anything.
I just make myself as comfortable as I can.
It is very annoying.
Please let me know if you figure anything out?
Love, Eva G.
Do you have other symptoms of the wearing off effect occur concurrently with your blurred vision? Say your eyes become blurred and you simultaneously become stiff and slow.
Yes this happens sometimes to me. PD affects the muscles of the eye. Try searching Parkinson's and eye problems.
I will...TY
I have had blurred vision a few times. Are you taking any other meds and do you exercise on a a daily basis. Using Sinemet along may not be enough. 4 years is a short time to be so far advanced. I know every one is different but only one hour of on time would not be okay with me. I believe that you can do better.
Hi Bailey
I have discussed same with neurologist. She tells me she can't do anything more for me and suggested a pump..which I'm not interested in at this point. My symptoms came on pretty fast and in a short time I was taking present dose (within 2 yrs). I'm afraid to bump it up to 3 every 3 hours as that is my last hope so to speak.
I was exercising but after the death of my dad in October and a few good falls I find I'm not interested( not sure if that's the word I'm looking for) I have just recently bought a recumbent bike and will need to schedule at least 30 min into my day..I know this its to do it...
Of course this is just a small snapshot of my life for 4 years...
Try to get a new NEURO there is more they can do what she said is bullshit to say it kindly She is not doing her job.
I am 62 11 years with pd my meds are
1 50/200 ext release Sinemet 1 25/100 Sinemet every 4 hours 5 times a day.
1 azelic a day and 1 6 mg requip 24 hour a day
With maybe at the most 2 hours of down time a day.
please don't give up.
Hi Bailey..I have notice such a difference in drug therapy between countries..I live in Calgary, Alberta. My neurologist which is the second one I've had(fired the first)does not promote going to the States for a DatScan(?spelling). I have thought about Michael J Fox foundation..whether I could get a consult appointment..expensive though...I know Ican't put a price on my health..but need to be realistic as well...
I always enjoy your posts.
Hi. I am reading this and still very new to it all. My husband is in first 6 weeks of "trial" carbido/ levodopa. He is having issues, as I have posted a couple of times, always with wonderful replies and assistance. This time I am asking about the down time I read so much about. I read lots of medical sites and also the info on this one. It is so confusing. I feel that my husband may be having more detrimental effects vs. benefits from this med. We have always steered away from prescription drugs in favor of supplements. I see that many of you feel the same way, so I know I am in a good place here in your community. Honestly, we have always been blessed with good health. My husband ran 5 ks, 10ks. half marathons and full marathons. This potential diagnosis has totally blindsided us. It all started with 20 plus pound weight loss for no apparent reason. Increased caloric intake to no avail. Fatigue set in along with what I call depression or anxiety or both. Maybe one preceded the other..not sure. He hasn't turned on his power saw in 3 years. He is an avid wood worker and can build just about anything. Sorry this is getting long and maybe off topic a bit. I am just not totally convinced yet that the potential diagnosis is the correct one. At first neuro appt 7 weeks ago, Dr. saw stooped position, instability with balance and some rigidity. Husband is on carbidopa/ levodopa 25/ 100. One pill 2 x day, down from 3 (which lasted only one week) due to hallucination and confusion. Unfortunately, he missed 3 doses in a row and I rushed him to regular GP doctor ( was a Friday and this Dr. is following him closely) because of worse confusion and BP went to 160/115. After little while, much water, he was much, much improved. Went directly back to the 2 pills a day. He seems not as well now as he was before he missed the doses. Maybe we should have begun with only one and worked back up to two. I dont know. I am very tired and emotional and worried. His gait and posture and balance are good. It's this confusion and anxiety that greatly concerns not just me, but him. As well, his Speech is so slow and finding words is difficult sometimes. Any info on down time and any comments or suggestions on anything else I have brought up is GREATLY appreciated. God bless each and every one of you.
I have several thoughts about your eyesight and current therapy. You now take levodopa/carbidopa but, as of yet, have not incorporated Entacapone (which is used to lessen the on/off effect). When levodopa + carbidopa + entacapone (a COMT inhibitor) is combined it is called the drug Stalevo.
In the world of nutraceuticals the best COMT inhibitor is quercetin. Quercetin is a component of green tea - a catechin, and has been tested for this specific reason:
Quercetin potentiates L-Dopa reversal of drug-induced catalepsy in rats: possible COMT/MAO inhibition.
"When quercetin was combined with a subthreshold dose of L-dopa plus carbidopa, the anticatatonic effect was potentiated."
ncbi.nlm.nih.gov/pubmed/127...
Consequently, levodopa + carbidopa + quercetin/bromelain (it helps with the absorption of quercetin) = Stalevo
Yes I know there is no known proper dose of Levodopa/carbidopa/quercetin/bromelain so caution must be the word of the day and if you wanted to try this, take it slow.
An additional question is, is quercetin good for the eyes?
Here is a testament from a person who took quercetin/bromelain and had diabetic influenced blurry vision:
"Being diabetic my eyes were starting to go blurry and according to my Optometrist there was nothing that could be done to help as what causes this is the blood vessels in the back of the eye become dilated and can no longer carry enough oxygen to the eye, and therefor the eyes become blurry.
HOWEVER I read in a diabetic magazine that QUERCETIN can reduce this problem by helping the blood vessels. No longer being able to see it was time to turn in my drivers licence, and I hated to do that, so I figured that for the price of a bottle of pills what did I have to lose!
If you have this problem TRY THIS!!!!!
It has worked wonders for me and my Dr. can not beleive the difference! My eyesight is at 20/20 and I am 71 with diabetes, COPD, CHF,RLS,PAD and arthritis. If I didn't know better I think it helps the arthritic problem also but it is hard to tell. I do know that since taking this stuff it hasn't gotten worse!!!!
"
amazon.com/NOW-Foods-Querce...
Sure this is one person's experience but what about scientific studies:
Eye lens in aging and diabetes: effect of quercetin.
ncbi.nlm.nih.gov/pubmed/219...
Effects of Quercetin in a Mouse Model of Experimental Dry Eye.
ncbi.nlm.nih.gov/pubmed/262...
The protective effect of quercetin against oxidative stress in the human RPE in vitro.
ncbi.nlm.nih.gov/pubmed/183...
Hi - (@Silvestrov)
So, if I took green tea, this might help me too. I also suffer from vision changes. Questions I have: Caffeinated or not? Would one cup a day be enough? And, could you recommend a brand or type?
I have an important family meeting to prepare for and will be out of town till next week. Remind me if I do not answer your question.
I had a little time open up on my schedule and can answer your question this morning.
The above information was intended to give a possible alternative therapy for both the on/off condition and eye problems. I am not certain if you have both of these conditions or blurry eyes alone.
If you have both, I think drinking a cup of tea daily, even an organic one, will probably not help solve the problem of blurry eyes (or the on/off). The problem I have with using tea as therapy is that you do not know the exact amount of antioxidants in a cup of tea - plus it is difficult to find out the specific dose needed to help improve your condition. That is why I prefer to use standardized supplements with a specific amount of antioxidants in each capsule. In addition, refined supplements are much cleaner of residual pesticides which can plague tea - especially generic commercial brands. This statement comes from a tea drinker and I like black, green and oolong tea(s).
If you do not have on/off and blurry eyes alone, I think a targeted supplement may help improve your eyesight. Late last night I discovered most good eye supplements have ingredients that are good both for your eyes and PD. I am using the following supplement as an example:
sciencebasedhealth.com/Ocul...
The list of ingredients are impressive to say the least. You get a complete B-complex, vitamin C, magnesium, iodine, selenium, zinc.....and, incredibly, Taurine, Lemon Bioflavonoids, N-acetyl-L-cysteine, Green Tea Extract (65% EGCG), Quercetin, Ginko Leaf Extract, Grape Seed Extract, Tumeric (95% curcuminoids), Alpha lipoic acid, a blend of blue/straw/ bilberry, elder &raspberry(s), Bilberry Fruit, Lutein, Zeaxanthin, Trans Resveratrol.... All of the above are good for PD and here is one example:
Lutein & Zeaxanthin
google.com/patents/WO201415...
My only reservation to this supplement is having pomegranate, manganese and vanadium. Manganese & vanadium are related to PD from welding fumes.
ncbi.nlm.nih.gov/pubmed/196...
Pomegranate: neurobiologyofaging.org/art...
I used this supplement as an example and there are others to choose from (including pure lutein alone):
ncbi.nlm.nih.gov/pmc/articl...
Most eye vitamins worth their salt have lutein in them with everything else as optional ingredients.
In summary if I had blurry eyes alone, with no on/off, I would investigate a supplement that has lutein with many of the vitamins, amino acids, minerals listed above. Of course quercetin/bromelain may also do the trick but this is the slippery slope of Parkinson's disease. The path is never quite clear and experimentation is required. I have categorized Parkinson's as a 'trial and error' disease.
Wow, thanks again Silvestrov! You amaze me!! Lots of interesting info in your answer. I don't experience an on/off problem (yet?), but am with my diagnosis for just 4 years, after all. I have blurry vision, specifically, double-vision (vertical shadowing). I will re-read your information with my 2nd cup of (neuro-protective) coffee and then make my health-food store shopping list.
Oceanflower,
When I posted the information about a possible eye supplement it was meant to be an alternative to using quercetin/bromelain for your eyes. QB is cheaper than the above supplement and who knows? Perhaps it may do the job itself. QB is inexpensive and would be a good first step and like I said, any eye vitamin with lutein is good for your eyes. Considering the man's response to quercetin/bromelain I would give it a go.
Quercetin is neuroprotective in PD models:
ncbi.nlm.nih.gov/pubmed/217...
It is a weak MAO-a inhibitor which means it is safe to take with Azilect or deprenyl. If it were a strong MAO-a inhibitor (plus deprenyl or Azilect) you would need to go on a special diet to eliminate tyramines from aged cheese, wine...even leftovers, to prevent a hypertensive crisis.
And use the listed eye/body vitamin as an alternative (to quercetin/B). Even the listed negative components of the vitamin, pomegranate, manganese, vanadium are all at small doses so they will (probably) do no harm. I have been looking into supplements which have all the good stuff for PD patients so they can a few pills versus taking many, many pills.
Along with the eye/body vitamin I discovered a fascinating 'hang over' supplement - yes, to relieve the negative effects from alcohol intoxication, called BrightDay.
getbrightday.com/products/b...
Let me list the (good) ingredients:
Vitamin C, B Complex, Magnesium, Zinc, Selenium.
N-acetyl-cysteine + acetyl-l-carnitine+ alpha lipoic acid + succinic acid + taurine + milk thistle seed powder + l-glutathione + l-theanine + chlorophyll = 1610 mg.
I am familiar with all of the neuroprotective effects of the 1610 mg cluster except succinic acid. Here is a SA patent for the treatment of neurodegenerative diseases like Alzheimer's & Parkinson's:
google.com/patents/US201001...
The pill also has copper - a risk factor for PD but by combining it with zinc, a copper chelator, no threat is posed. As for manganese, the 2mg dose is standard for a multi vitamin (and is not a toxic dose). There is no relationship between chromium and PD. A study compared the cerebral spinal fluid in PD patients and controls & found no difference.
This hangover vitamin is the most complete therapy I have encountered for Parkinson's disease in a capsule form. Of course it would have to be taken during the day, in divided doses, most likely on an empty stomach. (I recommend you to skip the alcohol.)
Sorry to throw more at you but this 'hang over' remedy is a viable therapy for PD and it must be considered.
Rich
PS: Perhaps quercetin/bromelain for the eyes (and the 'hangover' therapy). Much experimentation is possible here.
Hi Annie. When I've not had enough sleep, I notice less focus in my left eye (left being my affected side) especially toward the end of the day as the last of the Sinemet runs out.
Have you considered seeing a neuro opthalmologist?
Also, someone posted here months and months ago about doing eye exercises to improve overall symptoms. Can't recall the keywords for that but maybe someone else does. Perhaps these would help and forestall having to ramp up the meds.
Hi Annie
I very rarely post on here but your post caught my eye. I was diagnosed with Cbd in 2013 after initially being diagnosed with Pd in 2010. I take 4 10mg baclofen (muscle relaxants) 4 stalevo, and citalopram at the moment, and have done well on these medications. Last year my eyes started blurring and I thought it was time for new glasses. Four eye tests later, following 4 different prescription lenses and 3 different frames between November and february my last pair costing over four hundred pounds. I gave up. Fortunately I got refunds for them all. I had very thorough eye examinations on each occasion. I was told I have dry eyes and was prescribed eye drops and gel.
Since then I have asked my neurologist who asked me to follow his pen with my eyes then said it wasn't my cbd and I should see my GP. My GP examined my eyes and said maybe I should get another eye test as she couldn't see anything wrong. I am having more problems... My left eye feels uncomfortable and sometimes like a finger is being pressed into the socket. At this point my husband intervened and asked the doctor to refer me to the hospital eye department and she said she would. So I guess it's watch this space for now. I feel like they think I'm imagining it.!
I would love to hear if anyone else has these problems or ideas. I had not thought about a possible connection with medication as the problem is there most of the time...but my neurologist has now prescribed 2 more baclofen daily for stiffness so who knows it might help my eye.
Thanks in anticipation xx Pat C
Hi Pippin123... I can only tell you what I've experienced in the past 2 years..I've had eye exams every year...and my vision is fine need glasses for reading and no pathology noted ..I see the same opthamologist every time.
I know too from past experience that bring a new physician in just seems to confuse the matter at hand. I've had a 32 year career as a oncology nurse and feel I can say this with conviction.
Thank for the above information I certainly have a lot to research
Hi Annie 11. I also have the vision problems. I got new glasses so I really believe it is from the PD.
Yes I think so too. It took me a while to catch on....