Parkinson's Disease Tulip


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Old 01-06-2013, 07:06 AM #1
Dan Murphy Dan Murphy is offline
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Default Ibuprofen helps sleep

I have moderate Parkinson's. I go to bed at 8PM and at 12 PM I can not go back to sleep. I have found that taking 1 200mg Ibuprofen allows me within 20 minutes to go back to sleep. When I told my neuro this he said others have told him a similar story but he couldn't professionally comment.
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Old 01-06-2013, 09:04 AM #2
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Quote:
Originally Posted by Dan Murphy View Post
I have moderate Parkinson's. I go to bed at 8PM and at 12 PM I can not go back to sleep. I have found that taking 1 200mg Ibuprofen allows me within 20 minutes to go back to sleep. When I told my neuro this he said others have told him a similar story but he couldn't professionally comment.
What does that mean, "professionally comment"? Couldn't he at least then make an "unprofessional" comment? I'll have to remember that line, maybe I can use it when I get pulled over for an expired registration!
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Old 01-06-2013, 09:51 AM #3
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Originally Posted by lurkingforacure View Post
What does that mean, "professionally comment"? Couldn't he at least then make an "unprofessional" comment? I'll have to remember that line, maybe I can use it when I get pulled over for an expired registration!
lurking, we can pretty much recommend any unproven herb/treatment we want on this board with no repercussions, even if someone got seriously ill trying something suggested on this board. a doctor giving his ok to taking ibuprofen daily could potentially be sued by a patient if he suffered kidney, liver damage, stroke, etc. so if this doctor actually said that, i can understand why.

http://www.dailymail.co.uk/health/ar...k-strokes.html
http://news.harvard.edu/gazette/stor...ing-loss-risk/
http://www.drugs.com/pro/ibuprofen.html
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Old 01-06-2013, 09:57 AM #4
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Quote:
Originally Posted by Dan Murphy View Post
I have moderate Parkinson's. I go to bed at 8PM and at 12 PM I can not go back to sleep. I have found that taking 1 200mg Ibuprofen allows me within 20 minutes to go back to sleep. When I told my neuro this he said others have told him a similar story but he couldn't professionally comment.

I wonder about the collective PWP resonance as I have had to take ibuprofen (just 200 mg/day was enough) these last couple of days for nerve pain in my jaw and it definitely helped the pd sx.
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Last edited by moondaughter; 01-06-2013 at 10:41 AM.
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Old 01-06-2013, 10:28 AM #5
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Lightbulb

The NSAID family of drugs of which Ibuprofen is a member, have been used for various inflammatory conditions in the brain.

They are used (mostly Indomethacin) for certain chronic headaches. (some of these chronic types are thought to be inflammatory in origin)

Also NSAIDs have been trialed to see if they can prevent or forestall progression of Alzheimer's..with mixed results.

So it is possible these drugs could perhaps help with some inflammatory brain situations, or just be a mild pain reliever to help sleeping for those with arthritis etc.

The NSAIDs are not innocuous, but 200mg of OTC Ibu is not alarming. They have all been tested for cardiac effects, and naproxen is the least toxic to the heart for long term use.
At prescription strength, they can affect kidney functions, and the liver, so getting tested regularly at the doctor's is advised to make sure this is not happening.
Also they can affect bleeding issues (platelet functions), but not as much as aspirin does.

This is a meta-analysis of using NSAIDs in PD..
http://www.ncbi.nlm.nih.gov/pubmed/19728750

This paper did not find compelling PD prevention.
http://www.bmj.com/content/342/bmj.d198

Google is filled with papers and articles about NSAIDs and PD...most are about prevention. But that it is possible that inflammatory symptoms might be relieved subjectively by them so you could sleep more peacefully.
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Old 01-06-2013, 03:30 PM #6
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Default

Dan's experience frightens me.

While soccertese makes a fair point that a doctor needs to factor in the chances of litigation, I would like to know what a doctor thinks will help ME. Most of the time this will be the generally safe option, some of the time it might not. Most of the time this will follow conventional wisdom, some of the time this might not.

In areas where doctors fear to tread there develops a vacuum. It is in this context, I think, that moondaughter reasonably wonders "about the collective PWP resonance", in this case, to ibuprofen. As it is, we can offer anecdotal evidence and swap papers. This is better than nothing. It doesn't, though, fill the vacuum.

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Old 01-11-2013, 09:21 PM #7
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Default Ibuprofen fan

Well, I'm going out on a limb here. I am not suggesting that anyone else does what I do, but....
I LOVE Ibuprofen, it makes me feel like a normal human being and without it I am crippled with inflammation and pain. And, yes, I also take many anti-inflammatory herbs and eat all the anti-inflammatories I can get my hands on. At the onset of this disease, diagnosis about 16 years ago, I had a doctor who gave me the okay to take 600 mg a dose. I know that this a very large amount, but I want to be honest here and reveal that not only do I continue to take it daily, but generally take this 600 mg dose 2-3 times within a 24 hour period. So far it is without harm. As do many of us, I am constantly weighing and balancing the positive vs negative effects of medications, exercise, supplements, work load, etc. and I take full responsibility for what I am choosing to ingest and I try to do due diligence about staying informed. I tell my doctors everything that I take, although there are many things on that list that they are often not familiar with or don't particularly like me to take. Most of my doctors, for example, don't like to know that I use marijuana several times a week to help with sleep and that it works like a charm, but I am trying hard to be honest with them and to find my own way with their help.
I believe taking ibuprofen has helped me be able to keep the l-dopa medication to a minimum (total 400 mg daily), so far keeping dyskinesias almost at bay and being able to have a semblance of normal life.
I just wanted to relate my personal experience and corresponding risk that I am taking. Again, I am not recommending this for anyone else.
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Old 01-11-2013, 11:01 PM #8
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VICTORIALOU,

I like your approach: do due diligence, take full resposibility for your own actions.

Reading your post the following details jumped out of the page: 16 years post DX, workload, 400 mg / day levodopa.

Whether it's the ibuprofen or not I have no idea, but you appear to be doing something right.

Please forgive me if I ask a few questions, but I'd like to get a better idea of your apparently slow rate of progression.

Do you take agonists as well?

At what age were you diagnosed?

What's the furthest you've walked in a day in the last year?

(As a comparison, I'm nearly 8 years post diagnosis, unable to work, 300 mg levodopa plus 16 mg ropinirole per day, diagnosed at 49, 10 miles in a day [my lower body is less affected than my upper body]).

Talking generally, this experience goes to show the need for good progression stats, so we can make comparisons. It also shows the need to aggregate experiences; between us, are there 5 good experiences of ibuprofen or 1 good experience and 5 bad?

John
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Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 01-12-2013, 09:47 AM #9
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Default ibuprofen continued

Hi John,
I appreciate your interest although it is somewhat embarrassing as well.
To be honest I am not certain what has worked for me and what hasn't- I am trying to base a lot of my decisions on information and instinct.
I like to tell myself that I have had some control over the progression of this PD even though I can't say that for certain. I think this belief has probably helped me as much as anything else has.
Like many of us here, I have tried many approaches. I was diagnosed at 44 and tried a macrobiotic diet for almost 2 years, early on. I have an infra-red sauna that I have used for years, I have done Qi-gong, meditated, changed my attitude towards almost everything and focusing what I consider to be the fundamentals, ate herbs and supplements by the bushel (and still do).
I never could handle the agonists although I did a trial of both requip
and mirapex. They both made me so sleepy that the quality of life I would have to have made them unusable for me at the time. The only other prescription medication that I have taken, and for all 16 years is Selegiline (10mg). I also use caffeine (one or two cups of coffee) and green tea for energy and to stay alert. The selegeline has helped me dramatically with depression. There is none.
I have a three wheeled bike that I love to exercise on- it feels so great to fly along on it with speed! Walking has become more difficult the last 9 months or so, I have lost a lot of strength in my lower body although upper body is still good.
I do push myself physically still though and recently traveled to the
Dominican Republic and stood in lines at customs and security and walked in the sand on the beach for maybe 3/4 mile. Nothing like the distances you are walking, however. I do think the ibuprofen, by keeping the inflammation and pain down, has allowed me to remain as physically active as I am.
I don't know if any of these specifics are helpful but what I would tell anyone is just to try everything that resonates with you (obviously- not all at once!)
and hope for the cure to come in our lifetimes.
I guess while I am at it I want to include another aspect of dealing with Parkinsons that has been essential for me. I have found myself, through whittling down my life to the basics, feeling so grateful for what I have in terms of relationships and ability to enjoy the beauty, life, and pleasures around me. It feels like this has come easily. Some people aim and struggle for this their whole life, and to me it has come easily. I feel really blessed for this.




Quote:
Originally Posted by johnt View Post
VICTORIALOU,

I like your approach: do due diligence, take full resposibility for your own actions.

Reading your post the following details jumped out of the page: 16 years post DX, workload, 400 mg / day levodopa.

Whether it's the ibuprofen or not I have no idea, but you appear to be doing something right.

Please forgive me if I ask a few questions, but I'd like to get a better idea of your apparently slow rate of progression.

Do you take agonists as well?

At what age were you diagnosed?

What's the furthest you've walked in a day in the last year?

(As a comparison, I'm nearly 8 years post diagnosis, unable to work, 300 mg levodopa plus 16 mg ropinirole per day, diagnosed at 49, 10 miles in a day [my lower body is less affected than my upper body]).

Talking generally, this experience goes to show the need for good progression stats, so we can make comparisons. It also shows the need to aggregate experiences; between us, are there 5 good experiences of ibuprofen or 1 good experience and 5 bad?

John
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Old 01-12-2013, 10:11 AM #10
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Quote:
Originally Posted by VICTORIALOU View Post
Well, I'm going out on a limb here. I am not suggesting that anyone else does what I do, but....
I LOVE Ibuprofen, it makes me feel like a normal human being and without it I am crippled with inflammation and pain. And, yes, I also take many anti-inflammatory herbs and eat all the anti-inflammatories I can get my hands on. At the onset of this disease, diagnosis about 16 years ago, I had a doctor who gave me the okay to take 600 mg a dose. I know that this a very large amount, but I want to be honest here and reveal that not only do I continue to take it daily, but generally take this 600 mg dose 2-3 times within a 24 hour period. So far it is without harm. As do many of us, I am constantly weighing and balancing the positive vs negative effects of medications, exercise, supplements, work load, etc. and I take full responsibility for what I am choosing to ingest and I try to do due diligence about staying informed. I tell my doctors everything that I take, although there are many things on that list that they are often not familiar with or don't particularly like me to take. Most of my doctors, for example, don't like to know that I use marijuana several times a week to help with sleep and that it works like a charm, but I am trying hard to be honest with them and to find my own way with their help.
I believe taking ibuprofen has helped me be able to keep the l-dopa medication to a minimum (total 400 mg daily), so far keeping dyskinesias almost at bay and being able to have a semblance of normal life.
I just wanted to relate my personal experience and corresponding risk that I am taking. Again, I am not recommending this for anyone else.
just curious, when at your best, what are your limitations mentally and physically, how long does that period last on avg and how much of your day is significantly below that level? i ask that not to be critical but i always find it more useful to know how many hours that "normalcy" occurs when evaluating one's treatment regime. in my case, my normalcy is correlated pretty much to my sinemet intake, i have decided to stay below 800mg/day to avoid possible side affects -rationally or irrationally -so concentrate my intake between 6am and 6pm, taking more if needed, i was diagnosed in 2001, might have started sinemet in 2007.
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