Last week I posted about how I had a completely stiff neck and went to the doctor and he prescribed Valium. The title of the thread that I posted is "Hello Again" just in case you want to refresh your memory. Well, the Valium that the doctor prescribed helped me with some the stiffness in my neck. I have a better range of motion, but still not within the normal range. The Valium hasn't done a thing for the cogwheel rigidity, back rigidity, or the tremor. I went back to the doctor today because my jaw pain was so bad and it was radiating into my ear. I thought that I might possibly have an ear infection and I just wanted to get it checked out. This time, I saw a different doctor, another GP. He checked my ear and it was clear, so no infection. He said it was most likely muscular in nature and related to my TMJ and my overall stiffness. I told him that I had been diagnosed with Fibromyalgia in April of 2007 and also treated for possible PD from May of 2008 to November 2008. He commented that I was still very stiff in my neck and my back. He noted the cogwheel rigidity and also noted myoclonus.(I knew what I was experiencing, but I didn't know what it was called until today). I could see the wheels were spinning in his head. He had a lot of questions. I went through my medical history with him and he examined me. He also concluded that he doesn't think I am dealing with Fibro. He said that Fibro doesn't cause tremors and myoclonus. That is the second doctor to tell me that in one week. I told him how I had felt much better physically while I was on the Mirapex for six months and that the Valium hadn't done much for me except make me feel drugged to the point where I didn't really care so much about the pain. He asked how often I was taking the Valium. I have only managed to take it twice a day. Once in the early morning(so I can take a short nap after I get the kids to school and before I have to go to work!) and I take the second one at bedtime. It really helps me sleep great! If I take the mid day dose I am completely useless. He told me that he didn't want to stay on the Valium except for at night on an as needed basis. He said that he couldn't give me a diagnosis because he is not a specialist, but that he could go ahead and put me back on the Mirapex or try something else. I told him about the side effects that I had while I was on the Mirapex and he said that was unfortunate, but that happens with some people. I flat out told him that I would like to try Sinemet. He said that he would be happy to write that prescription out for me. Basically, I was shocked! I have always heard that Sinemet is often used as an aid in the diagnosis of PD, yet neither of the Neuro's that I saw ever had me try it. What he prescribed is Carbidopa 25/250mg, the generic for Sinemet. He told me to take it at bedtime and see if it helps with my overall stiffness. He said that we will gradually bump the dose up if it helps. I really can't believe that after almost three years of suffering with this miserable stiffness that eventually developed into a tremor and myoclonus, I FINALLY get to try the Sinemet! I don't know how much of a difference I will see because taking it at bedtime might not reveal too much. I will be asleep afterall! Maybe this is just how they get you started. I am really tempted to take it first thing in the morning and see if it helps my tremors go away. BUT, I want to be a good patient and do what the doctor said to do.

Could you please share your Sinemet experience with me? How did you first start taking it and when did you first notice a difference?

I am praying that this works and that I will finally have a diagnosis. I know, that sounds strange. It is not like I want to be diagnosed with PD, but it sure will be nice to put a name to all of the symptoms that I have been experiencing. It will be nice to be treated with the proper medication and be able to get some relief and improve the quality of my life. I am currently 34 years old, but some days I feel like I am at least 60! No offense to those of you over 60, but I think you know what I mean!

Once again, I would like to thank all of you reading my posts, offering advice and just being so supportive. I will keep you updated on how things go and I look forward to hearing about your Sinemet experiences.

Love,

Evonne

Hi, Evonne,
I remember being very grateful to have a name for what was wrong with me, so share that feeling with you, and hope that this gives you some answers.

Having said that I think it is quite unusual for it to be prescribed for night time use, perhaps others here will confirm this?

Whatever time of the day you take it you will need to make sure that you are not taking it on top of protein, there are plenty of posts, and information on this.

Keeping a diary of how you feel will be very useful, and if the medication is effective then it will help your doctor too.

Best Wishes
Lindy

i would wait until morning too just so you don't lay awake all night to see if works. my neuro told me to not take it at night at first. it will accumulate in your system, as medicine does. so if you can wait till morning it might allow you to get a better nights sleep.

i had my story written and realized i was going to influence your expectations. Why not start it in the morning and then posting?

how about doing it without our influence or expectations - the scientific way but please tell us your results ok?


paula

I ate dinner and then waited a few hours and took the Sinemet. I went to bed and slept fine. I got up this morning and I didn't notice much of a difference. I had a very dry mouth when I woke up, not typical for me. My muscles do feel a little bit looser, but they still feel like rocks to the touch! The way I see it, it has taken them awhile to get like rocks, and it is probably going to take awhile for them to get better. As for the tremor and cogwheel rigidity, I don't notice any difference at all. I assume that because I took it before bed, it probably isn't active in my body right now. My tremors and jerkyness are actually pretty bad. I think I will call the doctor today and ask him if I can try taking the pill in the morning. That way, I think it will be a more accurate test/experiment. Any advice? I will update when I hear back from the doctor. TTYL.

Hi, i'm in seattle and graduated from wsu
i suggest for best affect take it right after you wake up and no food. take with 8-16oz of warm water with 2tbs lemon juice. you want to increase your stomach acidity and speed the sinemet to your small intestine where it is absorbed. first time i took 100mg i had sig. muscle relief after 1hr but even after 6months being on it there are times when the affect is much less, especially after any food. i'd never go back to mirapex.
if you get no sig. affect, try the brand name, just get a few pills.

I called the doctor this afternoon and I left a message and asked him if I could take the Sinemet in the morning. Within about ten minutes I got a call back. I was surprised the call came so quickly. He said that it would be fine to take it in the morning, just as long as I consistently take it in the morning. EX: Don't take it at bedtime and then again the following morning. I guess he wants to build me up gradually to see if it works.

I am very impressed with this doctor that I saw yesterday. He is not my regular GP. Although, I called the office today to see if I could switch and have him as my regular GP. I should know soon if he is going to accept me as a patient. Yesterday when he asked me who my GP was and I told him, I shared that I wasn't very happy with the care that I had received from my GP and that I didn't feel we had a good rapport. He really listened to me and did a thorough examination. I think that he must have had a considerable belief based on the exam that I might be dealing with PD, or else I don't think he would have prescribed the Sinemet. He is middle aged and I am sure he has had more experience with PD patients than my original GP. When I first went to show my original GP the cogwheeling, he looked at me and flatly stated, "I don't know what is wrong with you". I felt that he was pretty uncompassionate and lacked good bedside manner. He sent me off to the Rheum and the Neuro. At a later appointment with my GP I informed him that I was taking Mirapex for possible YOPD, he said, "What is that?" I was just shocked. Both of the Neuros that I had seen had CC'd the reports to him. Obviously, he hadn't read them! I just haven't had much faith in him from the start. So needless to say, I am praying that the new Doctor, who I will refer to as Dr. H, is going to take me as a new patient.

On another note, my sister's 16 month old daughter, Emily, will be having surgery tomorrow. She was born with Pulmonary Stenosis. They are going to do a balloon catheter procedure to stretch her heart valve. We know that she is in the hands of a top notch Surgeon, but it's surgery...and surgery is scary. If you are a praying person, please say a prayer that the Doctor's hands will be led by God and that Emily will come through the surgery well and have a speedy recovery.

Thankyou for taking the time to read this. I haven't been on here for awhile and I just feel like I have some catching up to do!

Hi Evonne,

I am glad to hear you have found a doctor who is willing to listen to you and try some things. That being said, I have been taking Sinemet for the past 10 years. It has never done much for my tremor but it does help my muscle rigidity and most of the other PD symptoms I have. I was having a terrible time sleeping a year ago. My MDS adjusted my medication to where i was taking my last dose of Sinemet right before bedtime. That worked like a charm. I was running out of dopamine in the middle of the night and my symptoms were waking me up. I now sleep from 5 to 8 hours a night with no problem. So it is MY belief that we do need and we do use dopamine while sleeping. However, I would take the Simemet during the day simply to be able to note whether or not you are having benefits from it or not.

GregD

Evonne-
Prayers are coming your way for you and for Emily. Be sure to keep us updated.

I just wanted to let everybody know that Emily came through her surgery like a champ! We are all so grateful that she had such a wonderful Cardiac Surgeon and God obviously had his hands in this. Our lives will continue to be blessed by Emily's existence in our lives. Praise the Lord for that!

As for me, I took the Sinemet this morning. I felt pretty nauseous after about thirty minutes of taking it, but I drank some water and the feeling passed. I am not sure if it is making much of a difference right now. As I said yesterday, I do feel less stiff. In the first part of the day my tremors and cogwheeling seemed a bit better, but now I am not noticing any difference because I am sure the pill that I took at 6:30 this morning has worn off by now. I am not sure what to think and I don't have any huge expectations. So far, it hasn't been miraculous, and I am not sure what that means. I am just trying to take this a day at a time.

Thanks for all of your thoughts and prayers.

Love,

Evonne

So glad to hear of your niece's positive surgery

As for Sinemet, give it some time. We all have varying responses to meds. For me, Sinemet was what finally got me past my denial stage; it has a dramatic effect, almost immediate, on my symptoms...so much so, that a neurologist I recently consulted said he wouldn't be able to diagnose me while "on" meds as I was completely normal.

It takes a little while to build up in our systems, I believe. I know in clinical trials where they measured for long-term effect of levodopa, they believe there is at least a two week residual effect of medicine in our systems. So it stands to reason that for many it can take a while to see full benefit.

Just remember to try and record timing of dosage, effects, side effects, etc. It may seem trivial but will go a long way in helping your doctor better help you!

Laura