Parkinson's Disease Tulip


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Old 10-16-2015, 12:33 PM #61
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Badboy, are you still on NP? If so, that would almost be 3 years for you on Nicotine, no? How's it treating you? What dose are you up to now? Sorry for so many questions but i think I'm going to take the plunge and try NP myself. Interestingly, I used to smoke and quit a few years ago. Looking back I believe some of my PD symptoms started to appear soon after quitting which makes me wonder whether the nicotine was effectively masking or delaying the onset of PD.
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Old 10-16-2015, 01:48 PM #62
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Originally Posted by MartyC View Post
Badboy, are you still on NP? If so, that would almost be 3 years for you on Nicotine, no? How's it treating you? What dose are you up to now? Sorry for so many questions but i think I'm going to take the plunge and try NP myself. Interestingly, I used to smoke and quit a few years ago. Looking back I believe some of my PD symptoms started to appear soon after quitting which makes me wonder whether the nicotine was effectively masking or delaying the onset of PD.
I stopped Nic therapy after two years. It worked well for me. I stopped because I started the Hinz protocol. Now that I am well under way with that I will start Nic therapy sometime hear in the future. I was up around 21mg - 28mg.
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Old 10-17-2015, 03:44 AM #63
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Can I ask, If the nicotine was working well, what made you change to another regime BB?
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Old 10-17-2015, 08:36 AM #64
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Can I ask, If the nicotine was working well, what made you change to another regime BB?
I was on both at the same time. When I ran out of patches I didn't get any more and just continued fine tuning the Hinz therapy. Now I want to start Nicotine again for more benefits. L-Dopa works better than anything else in my opinion, but adding Nicotine on top for all the additions it brings to the table is a win-win.
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Old 10-25-2015, 02:15 AM #65
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Originally Posted by villiers View Post
Hello

so here is my update about Nicotine patch therapy since more than 4 years :

sept 2013-june 2014 :
i was at 21 mg, then 28 mg then 32mg
and very important , from October 2013 until June 2014 , i started juicing very very heavily every day (about 8 glasses a day ) especially green juices , coffee enemas about 2/3 times a day( coffee enemas makes your liver producing A LOT of Glutathione, search for GERSON therapy) , trying to avoid gluten but not so good at it :
this was the most extraordinary year i had ! and i am sure Juicing and Nicotine were a big part in this , as after 2 months of juicing , i did not need my sine met (750 mg/day) once every 10 days ,and after 4 months of juicing , i needed sine met only every other day , so 3/4 days per week , i was unmedicated for 36 hours and feeling great, i could walk, do anything ,did not need meds at night ....i was really experimenting recovery !! (it was hard believing it, when for 9 years , you have been told and retold that PD is uncurable and degenerative )
so for about 5/6 months the days without meds were fab , but the days when Levadopa was mandatory , my dyskinesias were more and more stiff , and very painful....but i was moving better and better , my walking was excellent especially

End of June 2014 : Catastrophic !! i don't know what happened but everything went out of control ,my body could not handle the Sinemet anymore, for 2 weeks , i had extreme dystonias and dyskinesias, the meds would last for 2 hours , or 1 hour or 5 hours...i felt lost , depressed, was in terrible pain ...so i lost courage, discipline...and stopped Juicing , enemas...

Sept 2014: I was told to stop Nicotine for 1 month , and restart from scratch , 1,75mg / day ...and then slowly increase every 3 months

June 2015 : I am now back at 14mg/day of Nicotine, i am taking 600 mg of Sinemet CL ,i very rarely drink juices...when the Sinemet is working, it has never worked that good ever before, no shaking at all/excellent walk/ excellent strength in the hands...my dyskinesias/dystonias are still very painful, (but this is due to Sinemet ,not Nicotine ),i had a Dat Scan last week, and compared to the One i had in 2011 just before starting , some numbers shows a small loss of dopamine neurons on some part of the brain,and the 2 others numbers show a GAIN of dopamine cells in an other brain's part !!....
Also now , when i wake up , i am in excellent shape , i can do whatever i want and only need to take my meds around 11.30 /noon (but i think the 10mg of melatonine do play some parts in those Sleep benefits )
One month ago, i experienced a no-meds day again...
I don't regret at All doing the Nicotine, i wished i had started it earlier...
the Dystonias/Dyskis induced by the meds are the big problem since 1 year
Hi there:
Can i ask which brand of Nicotine patch you are using?

Regards
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Old 10-25-2015, 10:09 AM #66
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Any brand will do.
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Old 11-21-2015, 04:56 PM #67
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Default Additional experience with nic patch

New to the forum. Was part of the nic-pd study, which meant using nic patch only without Sinemet. Bottom line is that patch only did reduce tremors for a while. But then they did come back. 28 mg at end. Then went to Sinemet only.

Then over the course of about a year had to keep increasing Sinemet dose until I was at 2.5 25/100 pills 4x daily to control tremors. Had at some point gone back to the patch, but was only using 14 mg. Decided to try upping the dose of patch. Titrated up to 28 mg and as a result have been able to titrate down to 1.5 pills 4x daily.

As a result (I think) of reducing Sinemet some jaw displacement I had been experiencing was reduced, although not eliminated. Dr. suspected dyskinesia with jaw, so my thinking was that a reduced dose of Sinemet would help, which I think it has.

Have to take patch off before bed to avoid sleep disturbance.

One interesting effect: When I take Sinemet alone when I wake up, it can take a while to kick in if I don't immediately put on the patches. If I put the patches on, I get a bit lightheaded for 5-10 minutes, but the tremor almost immediately goes away.
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Old 12-12-2015, 04:14 PM #68
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Default More on additional experience with patch

See previous message. I decided to see what would happen if I went up further on nicotine dose. Now at 42 mg nicotine; 1.5 25/100 Sinemet three times a day and 2.0 25/100 once a day (evening).

Jaw displacement (dyskinesia) reduced even further although not gone. Tremor very controlled. (Occasional fluttering.)

I didn't change the Sinement dose when I upped the nicotine, so the nic seems to be what is reducing the dyskinesia further.

No side effects, other than 5-10 minutes of dizziness when I first put on patches.

Interesting other notes: At some point with the patch -- I can't remember what dose I was at -- my tendency to get orthostatic hypotension was greatly reduced. Also, I used to have problems going to way, way before beinig diagnosed with PD, with afternoon sleepiness and falling asleep while watching TV in the evening. That is virtually gone as well.

Overall alertness is better. Sleeping well and can get by on somewhat less sleep -- 7 hours compared to the 8 or 8.5 I usually needed.

Be interested to hear from others using nicotine how their experience compares. Villiers, Bad Boy?
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Old 12-13-2015, 11:54 AM #69
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Not to mention all that possible neuro-protection your getting.
Quote:
Originally Posted by daysunny View Post
See previous message. I decided to see what would happen if I went up further on nicotine dose. Now at 42 mg nicotine; 1.5 25/100 Sinemet three times a day and 2.0 25/100 once a day (evening).

Jaw displacement (dyskinesia) reduced even further although not gone. Tremor very controlled. (Occasional fluttering.)

I didn't change the Sinement dose when I upped the nicotine, so the nic seems to be what is reducing the dyskinesia further.

No side effects, other than 5-10 minutes of dizziness when I first put on patches.

Interesting other notes: At some point with the patch -- I can't remember what dose I was at -- my tendency to get orthostatic hypotension was greatly reduced. Also, I used to have problems going to way, way before beinig diagnosed with PD, with afternoon sleepiness and falling asleep while watching TV in the evening. That is virtually gone as well.

Overall alertness is better. Sleeping well and can get by on somewhat less sleep -- 7 hours compared to the 8 or 8.5 I usually needed.

Be interested to hear from others using nicotine how their experience compares. Villiers, Bad Boy?
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Old 12-17-2015, 11:31 AM #70
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hi,

i am still on Nicotine patch...it's working terrific ...
i have been taking Zandopa (mucuna) as well since 3 months (thanks to someone here who gave me some tips )...and Zandopa has been a blessing (but the road to find the correct adjustment was difficult,very difficult )
i have been able to reduce my daily dose of 800mg of sinemet lp to 450 mg of sine met LP
i still get some fluctuations, my life is far from perfect but much better...i did a workshop of jamaican dancehall dancing last week , i was the worst from the other 8 people there..but hey , they were all professional dancers !
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