Rosebud I didn't mean to make light of your post, it was just that I could see myself in it. I have a drawer in a dresser that is full of meds that I have tried and when I get desperate and things aren't going well I start hunting through the drawer for something I haven't tried in a while in hopes it will give me some relief. I probably look like a crazy, drug addict looking for a fix. I do find that if I take my meds close together I have better results, less chance of dystonia. The trick is to not wake up after 3 or 4 hours, thats when I need the meds to get back to sleep. Sleep is key, it can make or break you if you haven't had a good nights sleep.

i appreciate the candor in this thread very much. if you had to try something like that Max, at least you answered the question that is in all of our minds [for yourself] which is, "do we need to be taking so much sinemet?". and the answer seems to be 'yes' most of the time.

There are several that have tried reducing sinemet, but those who have dared to go off completely could possibly be lucky to even be here telling it.

We need l-dopa and that will keep it in production. So who is going to light the fire to get us more and better treatments?

paula

hi,

PS> please forgive spelling errors. I couldn't find a spell check here and won't get this posted if I have to cut and paste it after checking it on another screen. Thanks for your understanding.

I have had pd for 20+ yrs. I don't know how helpful this reply will be because I don't have particulars but here goes.
1. I've always been told that ending any medication suddenly is not healthful, so I would think that would apply to Sinamet. logically.
2. I have met someone who's Parkinsons was triggered by traumatic event. he carries a duffle bag full of chinese, herbs, vitamens, q-10, etc etc which he takes throughout the day and has helped him go from bedridden to semi/normal movement. without sinamet.
3. also, i met a woman who worked with her doctor to create a mixture of vitamin C and time release sinamet and possibly another ingredient (I have not had time to request the exact formula) but she blends them with water in a blender and drinks an ounce every hour. It keeps her from the on/off roller coaster. She said it works great.
4. lastly, for myself, I was one of the human experiment statistics ei GDNF phase II trial patients from whom a very potent medication (GDNF) was abruptly removed by a doctor.

I was fortunate to not have experienced any known negative effects from the sudden withdrawl other than extreme dissapointment, frustration, anger, dissalusionmnet, and emotional trauma.

Contrary to the assessment by the experts, the sudden flooding and withdrawing of GDNF directly into and from my brain added approximately 3 years of not dramatic repreave, but certainly reduction of symptom advancement. It has taken several years to completely wear off the positive effects it had on my life as regards to how pd alters my life.


jingle belle

it's just the name difference between countries -
example list
Some commonly used brand names are:

In the U.S.—

Alprazolam Intensol 1
Ativan 12
Dalmane 9
Diastat 7
Diazepam Intensol 7
Dizac 7
Doral 16
Halcion 18
Klonopin 5
Librium 3
Lorazepam Intensol 12
Niravam 1
Paxipam 10
ProSom 8
Restoril 17
Serax 14
Tranxene-SD 6
Tranxene-SD Half Strength 6
Tranxene T-Tab 6
Valium 7
Xanax 1
In Canada—

Alti-Alprazolam 1
Alti-Bromazepam 2
Alti-Clonazepam 5
Alti-Triazolam 18
Apo-Alpraz 1
Apo-Chlordiazepoxide 3
Apo-Clonazepam 5
Apo-Clorazepate 6
Apo-Diazepam 7
Apo-Flurazepam 9
Apo-Lorazepam 12
Apo-Oxazepam 14
Apo-Temazepam 17
Apo-Triazo 18
Ativan 12
Clonapam 5
Dalmane 9
Diazemuls 7
Frisium 4 which in US is Generic name -Alprazolam 1

http://www.drugs.com/cons/frisium.html
http://www.drugs.com/cons/frisium.html#GACan

jingle, the spell check icon looks like this:

be sure to have pop ups allowed for NT. It pops up a new screen.

Hi Ron,
Thank you for sharing your experience. I have been searching for information on reducing/withdrawing from Sinemet and haven't been able to find anything. My father is on 250mg Sinemet 3 times a day. He has been on this level of mediation for a number of years. Over about the past 12 months I noticed that at about the time the peak dose of Sinemet is in his system (about 1 - 1.5 hrs after taking it) he experiences jerky movements, walks differently with his left arm out behind him to balance, his balance suffers badly and his eyes are wider and staring, he isn't himself. This lasts for about 2 hours. Then it is as if the dose in his body adjusts and he is great (can go for a short jog etc), everything is fine - until he has to take the next dose and it starts all over again. His GP was initially supportive and told us to reduce him to 100mg Sinemet 3 times a day (quite a big jump) and for the first 3 - 4 days he was great - none of the symptoms previously described. He lasted on this lower dose for 10 days, by the end of this trial the excessive saliva production was really distressing him and he felt much slower, couldn't turn in bed etc etc. That was back in May and he went back on the 250mg. His neurologist saw him last week but only in his "good period" and won't change his meds or recommend a reduction. I still think the 3 x 250mg Sinemet is too high for him - surely the evidence of these symptons only on the higher Sinemet dose are an indicator? I am thinking about suggsting he try splitting up the midday dose (half 250mg at two intervals instead of the whole tablet at once). I was wondering whether you have ever had to stagger your dose in this way?

Sara
Australia

Where do you find the CDP choline and what form of mucuna would you recommend? The GNC store by me doesn't know what I'm talking about.

Hi Bryn or W.W,
We get our Curcumin from Good Health Naturally Telephone 08702414237.I think they have a website. Their Curcumin capsules contain 500mg of Curcumin and 5 mg of Piperine to help to make the active ingredients more available to the body.The price of Curcumin is certainly more reasonable than other supplements. John takes 6 capsules a day which is the maximum dose.He began taking it after I read about Ron taking it, which was soon after diagnoses.

I am 70, diagnosed with Parkinsosn's in April 2001. I have taken Sinemet from day 1, with small, gradual increases, starting with 25/100 2x per day at that time, to one 25/100 plus one 50/200 CR first thing in AM, then 1/2 a 25/100 along with another 50/200 in mid-afternoon. I also take 100mg amantadine in the AM and 3 300mg CoQ10 spread through the day. I have been able to avoid dyskinesias and significant dystonia, and serious "off" effects.

Besides multivitamins and a couple of different antidepressants, the other significant med I take religiously is dextromethorphan (DM), 3.5-4 mg every night at bedtime. Several other people on this forum also take either DM or naltrexone, another drug of the same class, at this very low dose, and we find that the progression of our disease seems to be unusually slow, if any.
We usually refer to this as LDDM (low-dose dextromethorphan) or LDN (low-dose naltrexone). Both of these are old, safe drugs that were originally used for different things at much higher doses. LDN is especially well-known for its beneficial effects in patients with multiple sclerosis, and has also been shown to successfully treat Chron's disease. See the LDN.org website for details.

I use DM based on studies by scientists at the NIH showing suppression of inflammatory effects by both drugs in mouse brain tissue like that affected in Parkinson's. Also, DM is available in the USA without a physicians prescription, in over-the-counter cough suppression syrups. Links to the scientific studies can be found on this forum in a recent post by AshleyK.

Robert

Hi Sara,
Your father is starting to see dyskinesia at peak dose now. You don't say how long he has had PD, but I guess about 10 years?
I agree with you, to even out the dose to avoid such a peak. I would not think the doc would have any objection to spreading out the dose, since he would be taking the same amount per day. Is your father on an agonist, eg MIrapex or ropinerole?
A drop in sinemet of 750mg to 300mg is very steep. You always need to do things gradually. I assume the 250mg sinemet tablets are controlled release? I don't like splitting controlled release tablets. They can lose their controlled release properties and give a sudden high. Can you persuade your neurologist to prescribe 25/100 sinemet and spread the dose more evenly over the day. Then you have more control over the diilema of dyskinesias
versus imobility. If he is not taking an agonist, adding one would help to reduce his sinemet slightly.
Is your dad taking any supplements? Robert has some good suggestions, and adding curcumin could help, it is a cheap supplement and does seem to slow down progression.
Do make any changes gradually.
Ron