Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

Sinemet vs Sinemet CR: Your Experience?


  • Please log in to reply
21 replies to this topic

#1 Curious_George

Curious_George

    Newbie

  • Members
  • Pip
  • 4 posts

Posted 03 October 2009 - 12:30 PM

I am now taking 1.5 tabs of regular Sinemet 10/100 3 times a day, but am thinking of adding Sinemet CR to my morning meds, to get me through the wearing off/ boot up period between my 6:30am dose of Sinemet and the 9:30 dose of Sinemet.

The 6:30am dose starts wearing off around 9:15, then I take another dose @ 9:30-- which doesn't seem to really kick in until around 10:15. This means I have a 60 minute window during which it is harder to type, think & speak-- and I have painful leg cramps, too. (dystonia?)

Mon-Fri, I work 7-11am out of my home office as a service rep for a large ISP, working over the phone. That 1 hour of painful leg cramps, increased tremors, difficulty typing and slowed thought and speech is especially difficult then.

My specialist has prescribed Sinemet CR at a 200 (~) l-dopa level, reasoning that it will actually metabolize at around ~ 168 mg of l-dopa, the closest he can get to the 150mgs of l-dopa I currently take in a dose. I would take the Sinemet CR at 6:30am, along with 1 or 1.5 tabs of the regular 10/100 Sinemet.

What is your experience with adding Sinemet CR to the usual intake of regular Sinemet, as far as:

* how long from ingestion to boot up?

* how long it stays on?

* specific side effects experienced?

* things to be careful of/ watch out for?

Thanks in advance for your input.


George

#2 johnball20

johnball20

    Advanced Member

  • Members
  • PipPipPip
  • 241 posts
  • LocationWhittier, California

Posted 03 October 2009 - 09:41 PM

George,
I currently take 1.5 tablets of the 25/100 carbidopa/levodopa (generic) at 6 AM, 11 AM and 3 PM. Then I take one 50/200 carbidopa/levodopa slow release at bedtime (usually around 11 PM.) Of course, I'm backing that up with Mirapex, Amantadine, Comptan, and selegilene. Normally that gets me through the day with minimal or no off time.
I have only doubled up on Sinemet and Sinemet CR when I've found myself in a peculiar position of absolutely being committed to moving well under significant stress, such as traversing a large section of bare rock or ice without assistance or climbing under very heavy load of gear. What I found works better for me is to take my normal medications, but take them on the schedule my body demands, not by what the clock says.
When I'm training for the marathon or running one, I will often find I need my meds as much as an hour early. I can get through the race in about five hours, but I may have taken my medications after no more than two hours of running. I do always try to give my meds at least an hour for the day's first dose to come up to full speed.
I have worked out this strategy over the last 15 years of competitive racing. I used to take 2 full tablets of my regular 25/100 sinemet before a race, but found I was too dyskinetic to move with any grace. I'm better off with just moving up the timetable. I am usually so tired, of course, after a marathon that I don't do much the rest of the day and can let the meds run a bit long to get back on normal schedule by day's end.
We are working to raise awareness and find a cure.

#3 netgypsy

netgypsy

    Advanced Member

  • Members
  • PipPipPip
  • 643 posts

Posted 05 November 2009 - 03:38 PM

I had a major problem with sinemet CR in that it caused "manic attacks" where I was told I acted like an ADHD 8 year old on speed and drunk. I slurred my words and tackled tasks like sweeping or yard work as though I was superman. I was also very careless and ended up injuring my ankle when falling down because I was so ADHD.

I asked my neurologist about this and he said that sinemet CR can "build up" because of the intestine of the PD patient being sluggish and I was just plain overdosing. I cut way back and no more manic attacks.

Other problems I've had in general with sinemet occur as a result of eating fats and/or proteins so I cut way back on protein and caused myself to develop a major case of peripheral neuropathy due to a vitamin B12 deficiency. So I've added a B12 supplement, added the protein back into the diet (the heck with crashes (wearing off) I deal with them as they happen) and despite cutting my sinemet dosage to 1/3 what I was on before I'm now back to fuctioning pretty much normal unless the protein or fat prevents the drug from getting into my bloodstream - which does happen on a daily basis but at least I can now feel in both hands and feet and no more burning and stinging in them and no more manic attack.

The other thing that would happen with Stalevo and with CR and now even with regular Sinemet is that I would faint after eating. I still have to be careful but I do drink about 16 ounces of water in the morning to get hydrated and continue to drink liquids during the day to stay hydrated. I did reduce my azilect to .25 mg since it definitely contributed to the fainting. This is not a therapeutic does but who knows - it may do some good.

So I would be very careful about using CR. i was told to use it at night but I don't even do that as I can turn over - not easily but I manage. I've been diagnosed for ten years by the way and slept through three of them thanks to dopamine agonisits. I really like the CR for its ability to prevent "crashes" but it wasn't worth getting injured and having the ADHD attacks so despite the PAIN of doing the pills every three hours it's a big improvement and I've regained 10 pounds that I lost again I think due to excess dopamine causing me to just burn calories with my hyperactive behavior and I also lost my appetite totally which I've regained.

so this is probably more than you want to know - but be careful with CR. It's unpredictable and you won't know you're having a manic attack - I felt normal - just superenergized.

#4 Beachdog

Beachdog

    Advanced Member

  • Members
  • PipPipPip
  • 810 posts
  • LocationCape Cod Massachusetts

Posted 05 November 2009 - 07:18 PM

Netgypsy - thanks for your detailed post (although the future of managing meds and symptoms scares the **** out of me).

Question for you: Currently a newbie taking Azilect 1mg and seeming to be doing okay (no ill effects). My brain doc wants to start me on a generic CR at my next visit. However, I have read a study that suggests the next step would be an agonist. The doc is concerned about the agonists because of the side effects, specifically the falling asleep without warning and complusive behavior).

With that as background, what was your expeerience with the dopamine agonists?

Thanks

Rich

#5 netgypsy

netgypsy

    Advanced Member

  • Members
  • PipPipPip
  • 643 posts

Posted 08 November 2009 - 09:08 PM

What are those fictional dwarfs names - SLEEPY AND STUPID - well that was me on agonists. I slept away three years of my life because I was worried about taking sinemet but frankly the agonists did not really do that good a job. I finally went to mayo Clinic and talked one of their neurologists because I was interested in dbs. Well they won't consider a patient for dbs unless they have been on sinemet for a while and show good response and the doctor I spoke to told me I'd do a lot better on it than on the agonists.

Soooo - I switched over. I tried Stalevo (sinemet plus another drug) since supposedly you don't have to take so many pills. Well to tell you end of the story before I finish the beginning and scare you to death - it turns out that the plain old yellow generic sinemet is by far the best drug for the alleviation of the symptoms of PD. Well being from Missouri (not really - just have to show me cause I won't believe it otherwise) I decided to try the Stalevo. The problem was - every time I ate I would faint. And I have a familial weight loss problem. My mother's side of the family are pretty much anorexic - not from an eating disorder but just because we don't eat as much as we need to to maintain weight.

Well to make a long and painful story short I switched over to sinemet CR. It worked really well because after doing a lot of reserach I discovered that some people with the sleepy problem were taking a drug called provigil that is used for narcolepsy. Luckily I have a neurologist who tells me what is out there and what it does and lets me make the decision so Iasked him about trying it and he gave me some samples and WHAT a difference. I don't know if they will work for agonists or not but I'm prone to anxiety attacks (again familial - aren't I lucky) and they totally went away on sinemet but were a problem with the agonists.

So if you want great results go with the plain old sinemet - not the CR. You can use CR at night if you need to. I put the pills in a ziploc bag and stick them in my pocket. Set your cell phone to beep every three hours and take the dose your neurologist recommends to start with and forget about it. Try not to eat too close to the pills. Watch out after you eat though. About 20 minutes after you eat is when you can get seriously sleepy or faint in my case. If you do get sleepy ask your neurologist about provigil. It was a life saver for me.

Now my main problem is that I developed severe peripheral neuropathy and of course far too many doctors would just blame it on the PD. IT WASN"T PD. Well luckily my GP ran a bunch of tests and I was deficient in B12 and folic acid. A couple of months on supplements and the feeling came back in my hands and feet. So don't assume your problem is caused by the PD. Many times it isn't. But I'll tell you - I had drooling, trouble swalowing, short stepping, freezing, bowel problems, shaking, anxiety attacks and phobias and THEY ALL WENT AWAY when I went onto sinemet. Of course I exchanged all those for manic attacks, dyskinesias - but that's because in my quest for no crashes due to low drug and being sick of taking pills all the time I used the CR and overdosed, usually in the afternoon. The dyskinesias were not a major problem. My legs danced around when I was sitting. Annoying and a problem if you drive. But I cut back and got rid of the CR and went to the plain old sinemet every three hours. Yes it's annoying but you do get your life back.

Myy problem is that I need to eat a fair amount of protein to maintain my weight and protein crashes me big time. If you can, eat lots of veggies with low fat low protein during the day (watch sugar - I cut it out totally along with all the "white stuff") and pig out at night after you're home and don't have to worry about a crash, this words the best. If you do this (and I did but lost 20 pounds and was already thin and became B12 defiecient) you can be pretty much symptom free during the day. I was for nearly two years until I overdosed and had to start increasing protein when I lost so much weight. I'm back to normal most of the day now but have protein crashes on occasion.

So don't fear sinemet. It's fantastic. With today's technology it's easy to remember the pills and IF you aren't super thin you can adjust your diet so you stay normal. I'm looking into dbs because I personally know two people who had it who are now normal with NO drugs. Not everyone is that lucky.

Regarding azilect - I had no improvement from it but still take a low dosage because there is documentation that it is neuropretective.

Good luck and just remember - Michael J. Fox has had PD for 17 years and he plays 18 holes of golf and tennis at least weekly. And be sure you get a really good brain guy to lets you adjust according to what you need.

#6 oneguy

oneguy

    Advanced Member

  • Members
  • PipPipPip
  • 66 posts
  • LocationWisconsin

Posted 11 November 2009 - 11:10 AM

Hello Folks! Interesting topic with some jewels of personal experience. I've been diagnosed with PD for about three years. I've only used the generic form of carb/levo (c/l). No agonists, no CR. I'm up to 3000 mg per day now, taking one 25/250 c/l pill every two hours. I'm quite active at age 64, sometimes playing golf 3-4 times per week, chopping wood, exercies every day, etc. Like everyone, I've had to experiment a bit with what dosage to take so that I've got energy during the day when I need it. My best daytime performance is when I take 1.5 pills every two hours during the day, then take just 1/2 a pill at night (about three times per night). I'm sluggish as hell at night walking about to the bathroom, but during the day this regiment seems to get me through most times.

I have crashes almost every two days where I seem devoid of energy. It is frustrating to crash while playing golf because I feel like I can hardly walk, much less hit the ball. Trouble is, I can't predict the crashes very well. It is almost as if the c/l pills are "energy pills". If I've overdone physical activity part way through a day, my regular pill intake may not keep me going. If I ramp up intake of pills to guard against loss of energy, I sometimes get "buzzed", "hyper" -- do everything as if I were superman. Bugs my wife!

Yes, I have tremors when low in the cycle, but these are not as bad as the loss of energy, sluggishness, and stiffness I experience.

Is protein intake at the wrong time really a big time culprit in blocking carb/levo from getting to the brain? I've lost 15 pounds -- mostly in the last year. I weigh 150 now.

Thanks for any responses.

#7 netgypsy

netgypsy

    Advanced Member

  • Members
  • PipPipPip
  • 643 posts

Posted 11 November 2009 - 01:05 PM

Oh does your story sound like mine only my manic attacks were so bad that along with the peripheral neuropathy I developed from limited protein I managed to fall and twist my ankle. DUMB. The ADHA manic attacks also drive my wife crazy until I finally cut back on the sinemet. Luckily the neuropathy is pretty much gone but now I have about 5 hours of crashes a day. Pitiful.

I may try titrating back up a bit to see if it helps without giving me a manic attack since I'm pretty sure my B12 caused the neuropathy and not the sinemet.

As far as the protein causing the crashes, its' not just the protein. Fats stop the drug from ever leaving the stomach for an extended period of time also and when it does leave the protein uses the same carrier molecules as sinemet and so a high protein overload or even a fairly small one for me will crash me big time. I'm naturally slim with a family who are almost anorexic by nature as I mentioned before and I lost 20 more pounds on top of being at almost zero body fat when I started losing.

I'm convinced that higher levels of dopamine kill your appetite along with the manic mode using a LOT of calories. since I cut back I've regained 10 pounds by taking a high calorie drink - 3 tablespoons of regular plain yogurt and three tablespoons of some kind of salad oil - once or twice a day.

The bad thing about my crashes is they don't only affect my ability to move, they make me horribly anxious and stupid because the anxiety just takes over pretty much. I can still walk and do the basics but I'm pretty useless in that condition.

I have 14 horses and am getting back into riding after the ankle incident and I had a crash the last time I rode and had to get off fairly quickly so I can't go too far from my farm or truck and I can't ride alone at all.

Right now I'm looking into dbs seriously because this pill stuff is driving me crazy.

I'll keep you guys posted on the no sugar carb, high fat medium to low protein diet. I'm convinced it helps (there is a small study that indicates it does) but considering how many years it takes to develop symptoms of PD I don't really expect any major change for at least two or more years). Also if it's helping the symptoms that occurred last will go first and that would be the freezing and short steps and they have improved a lot even with no meds (they're still bad but I can move now on no meds) but the first symptoms I had were anxiety and then depression well before the tremor and that means they'll go last if this has any affect on the problem at all, which isn't a good thing. Since the diet is a miracle worker for seizures in kids who don't respond to drugs (Johns Hopkins) I figured it's worth a shot since the small study was done and they said they had improvement. But I'm not going to the extreme they did because the latest diet for seizure control includes a lot of the low sugar low carb veggies like tomatoes, greens, summer squash and so on. The parkinson study had them living on basically something like sausage gravy. YUKK

I went on it initially because diabetes is the number one cause of peripheral neuropathy and for me the neuropathy was worse than the PD. And so I'll stay on it for a while just to see what happens.

I can't remember if I mentioned I was diagnosed 10 years ago and twice have been in danger of being sucked down into that black hole where know you'll never get out. But both times I've been pulled back up and I'm back to being pretty much independent and active again. As a friend says "It's been REAL! That's for sure

#8 Rogerstar1

Rogerstar1

    Advanced Member

  • Members
  • PipPipPip
  • 1,713 posts
  • LocationWashington, DC

Posted 11 November 2009 - 05:41 PM

Oneguy and Netgypsy- Both insightful and very intersting posts. Thanks for taking the time to share.

Briefly, I find that the quickest start up is achieved with taking medication on an empty stomach and eight ounces or more of water. I crush the pill once with my teeth and wash it down. Forty minutes or so later I'm mobile.

Roger

#9 walkingbyfaith

walkingbyfaith

    Advanced Member

  • Members
  • PipPipPip
  • 48 posts

Posted 11 November 2009 - 07:22 PM

Beachdog,

My 51 yo dh has been diagnosed for 3 years. He currently takes 1mg Azilect (only because we qualify for their financial aid program), Amantadine 100mg/3x day, Artane 2mg/3x day. He is getting along well. His left side tremors but not too badly. He's slower and stiffer than he used to be but not too much. He works full time but no more 12 to 15 hour days, which is a good thing! When he fails to take more than his morning meds, his speech becomes much softer and slurred, his movements become much slower, he becomes much more fatigued. However, I notice all these things more than he does. Today is good, it's only when we look too far into the future that we become frightened and discouraged. So cherish the day!
Walking By Faith

#10 netgypsy

netgypsy

    Advanced Member

  • Members
  • PipPipPip
  • 643 posts

Posted 11 November 2009 - 11:39 PM

One thing to realize is that if you do respond to dopamine therapy the results are amazing. I inquired in the Ask The Doctor section if starting dopamine therapy immediately after diagnosis had any impact on the progress of PD and the answer, although not totally a no, indicated that they are now doing this quite commonly. I assume this to mean that there is no major difference and if you haven't been on dopamine yet the difference is amazing between it and the dopamine agonists. I was freezing, taking teeny steps, speaking so softly I couldn't be understood, drooling, shaking, having major bowel problems, depression, fainting, anxiety attacks and I'm sure many other problems I can't even remember when I switched. When the dopamine is in my brain I'm now pretty much normal. ALL the symptoms are gone. And even when I crash they're still not as bad as they were with the dopamine agonists. if I had known I never would have bothered with them at all. Sinemet is by far the best drug. The problem is getting it to the brain when you need it.

#11 OSCAR1727

OSCAR1727

    Newbie

  • Members
  • Pip
  • 6 posts

Posted 27 November 2009 - 11:28 PM

I am the caregiver, Sinemet is the BOMB! Sinemet CR is for nights only. Stay away from the agonist - they can make you psychotic.

#12 netgypsy

netgypsy

    Advanced Member

  • Members
  • PipPipPip
  • 643 posts

Posted 01 December 2009 - 10:01 PM

Well - reporting in.

Decided to go back to the sinemet CR and try to adjust the dosage so I don't overdose and go manic. WAAAy too many crashes with regular CR. I used to take 200 CR every two hours. Now I'm trying 300 every four hours. So far so good. Overall dosage is about what i was taking with the regular sinemet but a lot better control of symptoms and less problems with meals since the time interval is longer. SOOO sick of pills! The doc said it's very unlikely that the sinemet caused the neuropathy thank goodness. the neuropathy was lots worse than the PD. We'll see???

Can't remember if I mentioned that i stopped the Azilect. Fainting also runs in my family and azilect made the problem worse it seemed. A shame because it's a really great drug. so I'm not on anything that keeps the sinemet in my system other than the levidopa that's in sinemet. Meals really caused me to crash and I have a major problem holding my weight (again familial) so hopefully the CR will work better at a lower dose. So far it's been great. I'm back to my old self pretty much.

#13 yada123

yada123

    Member

  • Members
  • PipPip
  • 14 posts

Posted 02 July 2010 - 05:01 PM

please if anyone gets this and has any info one this CR Manic thing, I could sure use some examples. Dr. keep uping my 79 year old mother's sinemet cr because she has "anxiety attacks" which are just weakening her. She is on 50-200 9x a day and working up to 13? Tell me as much about the manic things as possible. The attacks hit her at all different times, but she has terrible constipation so maybe it is not moving through her system like it should?? Any help would be appreciatted.

#14 Curious_George

Curious_George

    Newbie

  • Members
  • Pip
  • 4 posts

Posted 02 July 2010 - 05:33 PM

I can't really address the CR Manic thing, as I fortunately have little to no experience of it.

I DID take 1 extra CR (50/200) yesterday, in addition to 2 extra 10/100 regular Sinemets, as I had awakened at 2:00am, worked from 7-11, worked again from 1:00pm- 1:45, then had a meeting from 6:30pm- 9:30.

Busy day for this 60 year old fart, to say the least. Oh yes, also did my PT exercises, too.

By dinner (about 30 minutes after my last CR dose), I was having serious dyskinesias, despite having taken my usual "sinemet wear off" cocktail of NAC, Phosphatydal Choline & a B Complex vitamin. Usually this cocktail eliminates 95% of the dyskineasia from wearing off. But, at dinner last night, I had the "wiggles" from Sinemet boot up-- too much dopamine.

Usually, I allow my last dose of Sinemet to wear off around 6:00pm or so, and let myself veg in the evening, under the theory that, yes, I could take 1 more Sinemet before bed, but it may keep me awake, and I aim to manage my meds with what I call the "lowest possible effective dose" strategy, under the (perhaps mistaken and unproven theory) that the less Sinemet I take on a daily basis, the less likely it will be that I will reach a point that it is no longer effective for me AND, hopefully, the less of a chance of having more frequent & violent/ hurtful dydkineasias. Time, of course, will tell.

I find it interesting that some here report taking Cr at bedtime and others as soon as they wake up. I find that, assuming I get at least 6 hrs of quality sleep, I can easily go 2.5 hours after waking up before taking my AM dose of 1 10/100 Sreg. + 1 50/200 SCR. My theory is based on the concept that, because I move very little at night in bed while asleep, my brain still is producing enough dopamine that there is a bit of surplus when I wake up, and that this surplus lasts for ~ 3 hrs after I arise. SO, as long as I take my AM meds no later than 2.5 hrs after getting up, I don't experience a dopamine deficit.

Is there anyone else who finds they are good for an extended time after getting up? Anyone else who lets themselves turn veg in the evening, rather than take 1 more dose of Sinemet?

BTW, thanks to the poster who mentioned he still run marathons with PD. My wife and I started aggressive backpacking in my early 50's-- backpacked the Grand Canyon several times, and about 40 % of the Superior Hiking Trail in Minnesota.I really think if I hadn't taken up aggressive backpacking (and the daily 45 minute training it demanded) when I did, the PD would have hit even sooner, and maybe harder than it did. As it was, I was in the top 5% for the speed of progression of the disease when I was diagnosed.

I am no longer able to train as aggressively as I did, but still lift weights 3/week & aerobic exercising 3/week, too. Thanks for letting me ramble.

#15 Belletrist

Belletrist

    Member

  • Members
  • PipPip
  • 20 posts

Posted 06 July 2010 - 08:51 AM

As it was, I was in the top 5% for the speed of progression of the disease when I was diagnosed.


Hi, there. I am reading these topics more thoroughly to try to learn about how PD is affecting different people. My DH was diagnosed Friday, July 2 and we haven't even begun medications yet. If PD hasn't sent you reeling yet, the news that you have it surely will.

Anyway, I wondered what you meant by this: "I was in the top 5% for the speed of progression of the disease when I was diagnosed." Do you mean they actually rate how fast the disease progresses on some kind of scale? I know that there are five different PD stages, but haven't read about people rating the progression, and naturally I'm interested in the progression. We are running a business and still have eight kids at home (large family), so more concerned about being able to continue work than anything else right now.

#16 Curious_George

Curious_George

    Newbie

  • Members
  • Pip
  • 4 posts

Posted 06 July 2010 - 11:10 AM

Anyway, I wondered what you meant by this: "I was in the top 5% for the speed of progression of the disease when I was diagnosed." Do you mean they actually rate how fast the disease progresses on some kind of scale? I know that there are five different PD stages, but haven't read about people rating the progression, and naturally I'm interested in the progression. We are running a business and still have eight kids at home (large family), so more concerned about being able to continue work than anything else right now.
[/quote]

Yes-- good question. What I mean is when I compared my PDRS (a self scored, subjective snapshot of how PD is impacting you) on patientslikeme.com to a database of about 3400 others on the site with PD (this is now up to over 4,000) the speed of "progress" of the PD ranked me in the top 5% compared to the entire database of 3500 for the disease.

Since then, with daily Sinemet, I am now in the top 25% for speed of progress of the PD, so the Sinemet has made a substantial difference.

George

#17 Belletrist

Belletrist

    Member

  • Members
  • PipPip
  • 20 posts

Posted 07 July 2010 - 09:52 AM

Yes-- good question. What I mean is when I compared my PDRS (a self scored, subjective snapshot of how PD is impacting you) on patientslikeme.com to a database of about 3400 others on the site with PD (this is now up to over 4,000) the speed of "progress" of the PD ranked me in the top 5% compared to the entire database of 3500 for the disease.

Since then, with daily Sinemet, I am now in the top 25% for speed of progress of the PD, so the Sinemet has made a substantial difference.

George


Wow, what a great tool! Thanks for that link. This sort of info is right up my alley.

We're both concerned about whether he should just take the neurologist's word for it and go on whatever medication she says, or take time to consider it or what? Right now the only symptoms he has are tremors. These don't bother him much, he says, but I notice he has started to favor his left hand and that tells me that it DOES bother him. I read meds don't always help the tremor, so I'm kinda clueless here about what to do. I would hate for him to go on medication now only to learn later that he should have waited. Those are powerful drugs.

#18 oneguy

oneguy

    Advanced Member

  • Members
  • PipPipPip
  • 66 posts
  • LocationWisconsin

Posted 10 July 2010 - 04:25 AM

Wow, what a great tool! Thanks for that link. This sort of info is right up my alley.

We're both concerned about whether he should just take the neurologist's word for it and go on whatever medication she says, or take time to consider it or what? Right now the only symptoms he has are tremors. These don't bother him much, he says, but I notice he has started to favor his left hand and that tells me that it DOES bother him. I read meds don't always help the tremor, so I'm kinda clueless here about what to do. I would hate for him to go on medication now only to learn later that he should have waited. Those are powerful drugs.



#19 oneguy

oneguy

    Advanced Member

  • Members
  • PipPipPip
  • 66 posts
  • LocationWisconsin

Posted 10 July 2010 - 04:59 AM

Dear Belletrist,

I, as well (I'm sure)as every PWP reading these posts have a great deal of empathy for you and your husband as he has been recently diagnosed with PD. Those early days of dealing with a diagnosis are like a walk through a very dark tunnel. It surely is a time when you both need the comfort and love of those who are dear to you. You have a right to be angry in your heart, confused, bewildered, and scared. Wouldn't it be great if you could be sure that you and your doctor are on a path of perfect decisions that lead to mitigation of symptoms, and hope for a long, productive life ahead -- in spite of the snarly monster that has invaded your loved one's body?

From what you've written, your early days of dealing with this are very much like what I experienced. I initially had tremors in just my right fingers, then they occurred in my right arm, and eventually in my right leg. I have only been prescribed Sinemet from the start and to this day -- about three years since diagnosis. I tried the "real deal" Sinemet for a while, then tried the generic form of carb/levo, and found that the generic worked every bit as well as the Sinemet. What your husband may experience, as I did, is having the tremors actually get a bit worse after taking the medication, but he will see that in about 30-40 minutes or so the medication "kicks in" and he will feel perfectly normal for maybe 3-6 hours after that. Then he will take the next dose, and everything will repeat. Sadly, as time goes on he will need more medication, the medication will not be effective as long, and on an on. But, the good news is that it seems nearly everyone who decides to fight this thing finds a way to get along in life with a fair, if not large, amount of normalicy.

There are jewels of experieced comments in this blog, as I'm sure you have seen already. Three years down the road wrestling with this monster and I'm experiencing more difficulties such as fatigue, constipation, sleep-deprived nights, etc., but I'm still out there under a blue sky playing the game of golf, enjoying special moments with my wife, playing touch football with my grandchildren, chopping wood, and ... you get it, life can still be rosy -- make it so!

Best wishes to you and yours in the days and years ahead. Sounds like you have nearly an entire football team of kids to enjoy those years with.

Oneguy

#20 yada123

yada123

    Member

  • Members
  • PipPip
  • 14 posts

Posted 15 July 2010 - 07:10 PM

In regards to the tremors following taking your meds, would this be an equalizing period because your meds are still too high or too low? I don't know if that sounds dumb, but I was thinking that if you were low, the shaking would start before your next dose and not after? I am so trying to learn this stuff for my mom, but man everyone is different so it is like no definites here. She uses CR 50-200 and was at 9 a day and just wild with anxiety and all kinds of stuff. I swear she is on way too much and actually in this manic like stage some of you mention. Any thoughts??




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users