when i went on sinemet it worked the first day.

peace

Brer T

Thanks for the feedback, terra. By "worked" do you mean you noticed a significant drop in tremors or a noticeable drop, or they totally stopped?

The first week I took them, I believe the tremors became less, but not drastically so. So I'm in question whether it worked or was the seeming reduction simply my perception (placebo effect)?

I'm taking three pills a day, BTW.

Hi COLE WHEN I STARTED THE SINAMET IT WORKED THE FIRST DAY. I NEVER HAD TREMORS BUT WAS RIGIT THAT WENT AWAY. BUT YOU NECER FEEL LIKE YOU FELD WHEN YOU WERE HEALTHY. YES THE MEDICINE WEARS OF BEFORE IS TIME TO TAKE ANOTHER , SO THE SYMPTOM RETURN.

Hi Cole, Because I was slowly weened onto Sinemet, it took a couple of weeks before it soothed my tremors. But other things improved right away like anxiety, rigidity. I am lucky in that the Sinemet controls my tremors but there are other discussions on this site where others say that Sinemet does not stop the tremors for them. It is an individual thing I guess, just like everything else about this disease. I know one person shared that it took about 3 months before it started working for her. Don't know how many pills a day you take but some drs. start people out on 1 pill a day (believe it or not with some people 1 pill a day is enough) but it seems that most doctors will start us with 3 pills a day. I think the amount of meds needed to control the symptoms depends upon how long we've had the PD before being diagnosed. This is all just what I surmise from what I have read. I'm sure you will get plenty of shares of people's experiences with sinemet, It seems that right now you are in diagnosis so I wouldn't worry about whether or not you should take the meds right now because they are just trying to see (through a very solid and often used technique of identification) whether or not you have PD. Once they determine if you have PD you will have lots of time to grind over the question should I or should I not take the meds.

Again, good luck and thank you so much for sharing and please let us know how it turns out!!!

by worked i mean it stopped my tremors completely and reduced the rigidity, i had absolutely no doubt that it worked but made other stuff happen as i have mentioned and wont hammer on.

peace

Brer Terrapin, "da cricket fambly libbed in da chimbley" (Uncle Remus)

Thanks for the feedback. I started taking 3 pills a day right off the bat, no working up to it. Like I said, seemed there was some reduction in tremors. Rigidity didn't go away, at least not totally.

I first noticed symptoms last October. May have had some before, but didn't think anything about it. But I'm a writer (sci-fi & fantasy) and it effected my writing speed being my left hand didn't want to cooperate during the November National Novel Writing Month (still made 50K+ words for the month). But I realized in Nov something was wrong. Mostly then it was in my fingers.

I was sort of hoping it was temp and would go away. Instead, the stiffness and tremors grew worse and moved into my arm more, as well as noticing some minor tremors in my left leg if not firmly against the ground. So finally this past spring, scheduled to see a doctor at a free clinic here in town. But had to wait a month to see him. Long story short, he believes it is likely PD, prescribed Sinmet to see if it helped, and would refer me to a neurologist along with some blood work.

But it wasn't until beginning of August I took the meds, figuring when I finally could go see a neurologist, I needed to tell him whether the meds helped or not. Needless to say, this has been a slow process.

The first week of taking meds, it seemed to help some, but none of it totally went away. Especially when I chant at church, seems to be the worst time. Second week, I started taking coconut oil, 2T in oatmeal every morning. That also seemed to improve things, but still not totally eradicate minor tremors and rigidity, especially when chanting. Third week I added Taurine to my diet, and had some noticeable improvements, though not totally gone either. However, this Sunday I did the best in controlling the tremors while chanting. Minor tremors and some rigidity, but someone watching me probably wouldn't have noticed. The best I've done while chanting in some time.

What I don't know is whether the Simnet has been gradually helping over the past three weeks and the improvements while doing the other things were coincidental, or whether the Sinmet isn't doing much, but those things helped, or it is a combination of all three.

So I figured the only way to know was to get off Sinmet and see if it gets worse despite the coconut oil and taurine, which would confirm it was helping, or if I don't notice it getting worse, means either I might not have PD or the other things are working to make it better. But at least I should be able to tell the neurologist when I see him whether the Sinmet was working or not.

I just skipped my first pill tonight. I'll take 2 pills a day until after Wednesday, at which point I'll go to one pill a day until next Sunday. I'll report how things are going as the week progresses.

Well, I think I would take the meds until I went to the dr. See what the dr. says and then if you don't agree try to see if you are worse without the meds. The dr. will need to know how the meds are working on you and if maybe you need to take 4 instead of 3 or maybe the time frame that you take them. Some people take 1/2 a pill and spread them out over the day. But we have to do what we feel comfortable doing. We have our own disease that allows us to experiment. LOL We are truly lucky that way. What they (the drs) say over and over again it will not hurt us if we do not take the meds. Although my dr. thinks it is not good for the body to go without the dopamine. Did you see in the news about Linda Ronstadt can no longer sing because she has PD?

I posted somewhere on this site that on the NPF site I read a pharmacist post that different things that we do take up more dopamine than other things we do because of the muscle mass. He said that walking takes up less dopamine because the legs have bigger muscles than say typing and actions that involve hand movements because the muscles are smaller in the hands. I know when sing it involves the vocal chords, tongue, lips all the muscles of the lips those muscles might take a lot of dopamine to work and so that is why you shake more when you exert your muscles singing. I know I have problems with my speech and talking because the muscles of my mouth and tongue do not want to work. My tongue actually tremors - my dr. checks out my tongue tremors when I visit her.

I have a question for you - how do you feel in the morning when you wake up? Some of us are terrible in the morning and some of us feel best in the morning. Good luck and let us know. Thanks.

my Dr. doesnt know anything i do if THEY did (i have a team) they would throw more pills at me and send me a bill.....

Brer T.

My tremors seem to be better in the mornings and get worse as the day progresses. I figured that might have something to do with the testosterone link, since a man's testosterone is highest during the day right after he wakes up. But if other men experience the opposite, maybe not so much.

I'm down to one pill a day. Yesterday being the first day of taking only one pill. So far, I've not noticed any significant difference. Tremors seem to be about the same. Actually, if I was forced to say either better or worse, it seems better. But nothing that would make me say definitively I'm better. I'll be taking one pill a day until Sunday, when I'll go totally off it.

On a good note, I've been approved from Scott and White for financial assistance for 6 months. I only have to cover 3% of cost. That is doable, so I should be going to see a neurologist soon and maybe end up with a more definitive diagnosis.

But looking at the symptoms for essential tremors and MS and Huntington's, my symptoms do fit PD more consistently. The lack of help dopamine has given me being the one exception otherwise. But hopefully an MRI or other test might be able to nail it down better. At least it looks like I'll now be able to get that done.

sinemet or l-dopa is kind of a litmus test for PWP.......if you respond well and with usually a fairly immediate response then PD is highly likely....little or no response usually indicates another condition or P+ syndromes. Your lack of definitive response in my opinion would cause me personally to question a PD diagnosis....having said that it has been sown in some studies that genetic related PD may have a relatively poor response to l-dopa as well as some P+ syndromes whereas idiopathic PD typically has a good rapid response. Food for thought


Brer T

Well, I doubt it is genetic if it is PD. No one in my family has it, and I'm not aware of relatives that have it (but I may just not be aware).

Also, of course after what I wrote yesterday, my tremors felt worse especially in the evening. This morning a little better (I'm still taking one pill around 11 am), so we'll see how it goes today. Hopefully I'll be going to the neurologist in the next week or two and we can get a more official diagnosis. But if this tremor continues to get worse, it would seem to indicate PD. We'll see.

Oh, I also meant to add...

From what I've read, if it is due to genetics, PD tends to reveal itself earlier in life. I appeared to get this last year at 52 years of age. I'm 53 now. So not likely to be a genetic issue, though I'm sure nothing is out of the ball park with this disease.

Yesterday was my first full day being totally off L-Dopa. I think I'm worse in some ways. Sometimes the tremors seem to be worse, other times not so much. The biggest difference I've noticed, however, is in the stiffness of my left fingers in typing. It's like they don't want to move right, but have a pull to "curl under" as if the muscle is contracting. A bit more stiffness in the hand overall.

Overall, it seemed the L-Dopa was helping some, but nothing drastic. It never totally got rid of the tremors or stiffness. Maybe some improvement. I do think it helped some. It looks like that's what I'll have to report to the doctor when I see him.

I read somewhere (can't remember where) that it can take about 10 days to get Sinemet totally out of your system. So give it some time and see how it goes over the next week or so.

I was told the tremors are the hardest symptom of PD to treat and that for many people, Sinemet does not take the tremors totally away. For me, they did go away totally for a couple of weeks but then came back - definitely way way less though. Now I have just a minor tremors off and on on my left side, where as before, I would describe it as a very wild shake in my left hand and a lot of up and down motions with my left leg. I also use to feel quite shakey inside before - and not so much anymore. As far as the stiffness - that was where I noticed the biggest affect. Sinemet was a Godsend for me. I had been having extremely tight cramping and dystonis in my neck and sholder - so much so that I was in constant pain for almost 2 months. After starting the Sinemet, I felt like the Tin Man on the Wizard of OZ after Dorthy found his oil can and oiled him. The Sinemet really helped loosen me up - after only a couple of days on it. And it took the painful dystonia and cramping away.

Before, I could barely type with my left hand - just like you describe, but now I can type like normal again. Also I got my arm swing back. So all in all - the Sinemet worked really well for me almost in the first couple of days!

Oh - and for whatever reason - mornings are the best for me. And I usualy don't have many symptoms during the night anymore since i went on the Sinemet. The PD meds I am now on are 2 Selegeline a day - one in the morning and one at noon and I take 3 Sinemet 25/100 pills a day - about 9 a.m., 2 p.m. & 7 p.m.

I am also on hormone therapy for menopause reasons which also includes Testosterone. But I was on it before the PD started - so not sure it is doing anything for my PD - but the hormones have definitely helped with the menopause symptoms. Oh the joys of getting old!!! (NOT)

Good Luck - I hope you can figure things out!

I should also comment for anyone who might be reading this - I do recognize that right now I am in the Honeymoon phase with the PD drugs. For the most part I feel almost normal again - but I am still pretty much in the early stages of PD - so I know that I am still producing some dopamine on my own - at least in the part of my brain that affects my right side. I am constantly aware that this probably is the peak of feeling good and will be as good as it gets - so I am just trying to enjoy my life and the honeymoon before the reality of progression and the down the road side effects from the drugs start to mess with me!!!

I am also constantly looking at every and all options out there in an effort to find ways to keep my quality of life as high as possible, including alternative treatments. There is a lot to weed through - and it gets confusing - but I do my best and usually find that my gut instinct guides me well.

And of course I am a firm believer that Exercise is the #1 key for living well with this disease. PD wants to steal our ability to move away from us - so that just means we have to force ourselves to keep moving as much as possible in order to combat the PD thief. A positive attitude is the 2nd key! And wonderful support from the wonderful people here on DS is the 3rd key!