NeuroTalk Support Groups - Ibuprofen helps sleep

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Parkinson's Disease (https://www.neurotalk.org/parkinson-s-disease/)

- - Ibuprofen helps sleep (https://www.neurotalk.org/parkinson-s-disease/181976-ibuprofen-helps-sleep.html)

Hi soccertese
I also have my best times when medicated. I wait to start my first dose until 8:30 - 9 am because I usually can get by until then. My mornings , when I have more energy, are definitely my best times. When I am tired my tremors and other symptoms are much worse. Luckily, so far, no mental limitations. Physical limitations seem to be dependent mostly on strength/weakness and being rested/tired. Most of the day until say 7 or 8 pm I can physically get around with a lot of sitting and resting when I can. I never layed it out like that before but I guess that is about 12 hours of functionality- not really "normal", like going up a flight of stairs looks pretty funky, but mostly getting by. Once in a while- maybe 2 times a month, I have very little energy and mostly stay in bed and rest. :sunchair:

Like you, I have tried to avoid adding extra medication for as long as possible , to avoid side effects, as you said - whether this is rational or not.
I forgot to mention earlier that I also postponed beginning any medication for as long as I could. I started sinemet only 4 years ago when my daughter was getting married so I could participate fully in her day.

Quote:

Originally Posted by soccertese (Post 946834)

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.

older posting concerning NSAIDs

Quote:

Originally Posted by VICTORIALOU (Post 946741)

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.:eek: 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.:hug:

Thank you for being so gracious with your detailed information, Victorialou. The fact that you were able to keep from taking Sinemet for so long is remarkable. My husband is trying to prolong the use of Sinemet and his medicine regimen sounds a lot like yours. He was dx 8 years ago at 41. His main symptoms are right hand tremor and some slowness. He has taken Rasagiline since diagnosis. Like Selegiline, it is also an MAO-B inhibitor. His MDS suggested he take Ibuprofen from the beginning. He feels that the Ibuprofen is key and feels a big difference, if he misses a dose. I am happy to hear that you are benefiting from Ibuprofen, as well. I hope they will continue doing studies.
I am curious if you or anyone else has ever tried Amantadine before taking Sinemet? In the past year, he has started taking a small dose of 100mg a day for his hand tremor. He hasn't noticed a big difference and is hesitant about taking a larger dose, due to side effects. Dang those side effects...always a catch 22! We are currently weighing our options for his next move.