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Waywrd1

Eating With a C/L Dose

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Mark-

Thanks again for all your help with my endless questions!  Very appreciated.

 

I take doses every 3 hours starting at 6am.  So, if I go back to sleep, I wake up about 8/8:30, which means I shouldn't normally eat until 10 or so.  Do you think a banana with one of my morning C/L doses would inhibit absorption too much?  I need to get more calories in me, but also don't want to come fully awake to do so. Lack of sleep is as big of a problem for me right now as the calories are.

Thank You!

Waywrd1

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I think a banana would be fine. At this is completely understand the sleep issue versus calories. Many nights I would gladly give up calories for a good night sleep.

I hope this helps.

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Dear Mr. Comes;

 

I would like to benefit from your professional knowledge and personal experience to understand the importance of Sinemet dosing time.

 

I am 7! and was diagnosed PD in 1995. My current dose is 100 mg which kicks in in 15-25 minutes and keeps me ON for 30 minutes, then I am OFF.  If I want to stay on for a day (16 hrs) I do not eat or sleep - I only swallow Sinemet pills. There is no fun or logic in doing this routinely. Therefore, I live my day on a dose-by- dose basis. I sleep when I want and as long as I manage to (1 - 3 hrs), wake up in the OFF state, take my 100 mg Sinemet. When it wears OFF, I eat a meal and stay in the OFF mode for the 3 - 4 hours needed to empty my stomach. Now I am ready for the next dose of Sinemet.

 

I find this "open schedule" less stressful  and I can use the OFF time to read, watch TV, use Internet...

 

I am not candidate for DBS.

 

I look forward to your comments on what I am doing.

Thank you    

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When you use Sinemet it is nice to have that control of the on and off periods. The problem many people run into is that they try really hard to micromanage the medication so that there are no or minimal off periods.

It sounds like you have it down to a science, and I commend you for that. Have you ever tried the long acting, also known as controlled release, Sinemet? It has the same active ingredients as the regular ones you are taking but are made so that the medication is released over a longer period of time.

The other nice thing about it is that you can mix the long and short acting together.

An example would be to eat , then wait an hour, then take 2 with short acting to kind of "jump start" the body. What about 30 to 60 minutes and take a long acting Sinemet. That should last you maybe 4 hours. So you don't go off you take a regular acting and an hour after that take a long acting Sinemet.

This does tAkers some time to get used to but it works best if you keep a journal.

The journal should consist of times when you wake, what med you took and what strength , what and when you ate, when you may have taken a nap, when you went for a walk, etc...all the way to bedtime.

You will probably see a pattern of off times throughout thee first week or two. This way you will know that you are probably going to be off at 3:00pm, so you take a regular acting at 2:30pm then follow it up with a long acting at 3:30pm.

What you can do then do is bring this journal to your Dr and show him what times work best for. Of course you always want to get the Dr ok before you change regime anyway.

I know this really helped me and I have been told it has helped others. The more information you can give to the Dr. the better he can help you.

I hope this helps you.

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I cannot stress enough about keeping a journal about everything and possibly emailing it to the Dr a few days before your appointment. This way the two of you will not spend the first 15 to 20 minutes discussing what happened since the last appointment.

If you email them to the office the Dr may have a chance to look at them before you get there so when you go in for the appointment you can get down to the real nuts and bolts of the issue.

The more information you can give them, the better they can diagnose, or help diagnose your specific situation. If the only have your words and you can describe the last 3 months from memory you are better than I.

That is why the journal is such anot important tool for you to see what medication and when, it also helps the Dr. choose the correct medication for you. The more detailikely the better for you and fo r the decision making of the Dr.

I hope this helps.

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I use my food/med journal as an evaluative tool. The good ones live the detail. The devil is in the detail with PD. I wont bother with the ones who think its the physical manifestation of my alleged anxiety.

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I completely understand. I have been so detailed some times that I have to pull back. I make mine a hobby. Something fun. Not a chore.

If you get to the point where you see a journal filled with, "one peanut, 1/2 apple, 2 ounces of orange juice," pull back.

It is always a good idea to have someone else read it over. Ask them if there is too much or too little detail. Have them read it like a book. If there are any gaps, correct them. If there is too much detail, delete some.

I hope this helps.

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The reading suggestion is a great one. I'm a management/strategy consultant, so this is child's play for me, and I really hate half assed data. I don't obsess about it though.  I just send myself an email in the morning about how I slept, and then reply back to it as the day progresses with anything unusual at dosage time and what I've eaten than day.  Then, I copy and paste the info into my tracking sheet.  Total daily time is maybe 20 minutes.

 

And, I totally wish I could pull it back from the level of detail you describe.  Unfortunately, the dieticians have me tracking my calories.  They're delusional- they're trying to convince me that a 20 lb weight loss of fat and muscle is simply not me eating enough, when I'm eating 2100+ calories a day.  Prior to starting C/L, I ate 1600-1800 a day and maintained the same body weight for 20 years.  I swear that most of my side effect problems would be taken seriously if I were 81, versus being 41.

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I think most of us with young onset feel that way. It issue hard to take effect on a disease like PD or even dementia the a young age. I know others that are seeing dementia at the age of 50 who have PD. I can't even imagine the side eyes they get from people for that. I know the look people give when you are young and have PD symptoms. It is hard for people to fathom how we feel . We are not asking for sympathy, but rather some empathy.

Thanks for the imput.

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Amen Mark, I know it's horrible!  I can't imagine a cognitive issue at 50.  My first ever "You look too young for PD" came out of a DOCTOR's mouth! Granted he's a dermatologist, and immediately apologized but still.  

 

Integrative Med doc (He's at Penny George, so he's legit) said that based on my plethora of sensitivities- he thinks is either adrenaline is over my natural levels but occuring bc the dose of C/L required to keep the PD under control is way over my norm.  Or it's a sensitivity/allergy to the C/L.  Both of which make a ton more sense based off what keeps happening.

 

I also got an appt with Dr. Greg Plotnkioff, formerly of PG A friend used to work with him as his nurse and said he's as brilliant as his reputation. 

 

And I'd love to know what else you think may be going on.  PM me if that is more comfortable for you.

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I also had a similar story about a Dr who I saw 4 days before my 30th birthday whe he mis-diagnosedid my with essential tremors. I was on above the therapeutic levels of Paxil, klonipin, and mysoline. I knew as a Pharmacist it was high doses all around, but I trusted him. The final straw was when I realized that mysoline breaks down into phenobarbital. I was 10 times over the max daily dose of phenobarbital in my system and caus e do issue with cognition. At this point I asked him could it be anything else? He said no, whya, do you want PD. His partner was a great friend of mine.

I had to leave, got a new Neurology/mdshs@yahoo.com.

All is as could be expected. But he was wrong in my situation. We really need to research the issue you may be having.

I really hope this open communication between us could get out here.

Well done. You need to fax or email each other (dr and patiet)a few days before your appointment so the Dr can better assess you. Also a full diary will help you which should contain your notes and suggestions . It can help you in so many ways.

Keep me posted.

Thanks

Mark Comes.

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Sinemet does have to have stomach acid in order for it to be absorbed in the upper part of the intestine. OJ helps keep the stomach acid at an optimal pH which helps the Sinemet be absorbed to its greatest extent where ad when it needs to be.

Usually 4-6 oz.of OJ should be enough to benefit you.

I hope this helps.

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Mine is markcomes@yahoo.com.

I prefer posts here, but if you must about a private issue, you can use that.

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I have to be very careful with food even a banana will screw things up.  I usually get up and have to wait an hour till I can eat.  I cant go back to sleep b/c the medicine ,makes me nausea even with some anti-nausea meds so I go lay on the couch..  So my life revolves around the time and type of food i eat. That is one of the things I hate about PD there is no spontenaity. I went to  visit my daughter in Boston for christmas everything depended on what I was eating. We went to the Boston pops and everything was fine.  I had a few handfuls of nuts(small) @ around 5 took my meds @ 5:30 and by 5:45 I was so off i had to leave the concert and take an extra 1/2 os sinemet and wait for it to kick in. In the meantime I could hardly walk.  My daughter was great about it but I find it rather annoying!! 

Sorry to ramble it just pisses me off!

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I agree, it is very annoying. When we stick by the plan of taking Sinemet one hour before food or about two hours after a meal and we still have issues, that is when the aggravation sets in. 

if you are having issues with the Sinemet causing nausea, your Dr. can always add some carbidopa to your drug regime. the carbidopa is added to levodopa (in Sinemet) to help the levodopa work longer and to decrease the nausea caused by the levodopa. Carbidopa does come in a tablet by itself (called Lodosyn) and is usually added to decrease the nausea (as in your case). It comes in a strength of 25mg. and can be added at whatever strength the Dr. feels is appropriate.

i hope this helps and please keep me posted.

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Mark-

Lots of interesting news here, I'm onto the genetics folks for a whole lot of weird testing for a possible urea cycle disorder, lysinuria, and/or glycinuria. Hard to get the meds to work if you don't have the aminos (or too much of them) to process with. 

Waywrd1

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I absolutely agree with you. Unfortunately many insurances may not cover this type of blood testing. Many times your specialist (ie. Neurologist, Movement Disorder Specialist, or even a Nutrition Specialist) may be able to order these tests and guide you in the direction as to what lab may be able to do these in depth blood tests.

I hope this helps.

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Thankfully, my insurance does cover the testing as well as pharmacogentic testing.  Even if I can't get them to look at the urea directly, the pharmacogenic testing will also point them in that direction if it comes up as abnormal as my prelim results were.

I'm wildly positive for two out of the three diagnostic criteria for lysinuria and glycinuria.  I just don't have any ammonia results on file, I don't doubt I will eventually- at the side effect attacks I've had which landed me in the ER, all had moderate to significant cognitive/communication impairment.  No one ever thought to pull aminos and ammonia test while I've been under medical care.   Why would they, it's even more rare than YOPD but the side effects of a urea disorder read like a diary of my side effects complaints.

 

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I agree with you. YOPD is very rare and many ER doctors look at you with a side eye when you tell them you have it. Usually they run run the usual CBC blood tests to get a wide range view and then narrow it down if anything in the CBC is not within normal.

Thanks for the information and please do keep me posted.

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On 11/16/2016 at 9:20 PM, MComes RPH said:

Sinemet does have to have stomach acid in order for it to be absorbed in the upper part of the intestine. OJ helps keep the stomach acid at an optimal pH which helps the Sinemet be absorbed to its greatest extent where ad when it needs to be.

Usually 4-6 oz.of OJ should be enough to benefit you.

I hope this helps.

This is one of the most helpful things to have learned!  Thank you for posting this.

I usually take a dose of Sinemet with my nighttime meds, which include Prilosec.  I guess I shouldn't do that any more.  Do you think if I take that dose of Sinemet a couple of hours before the Prilosec that it may help the Sinemet be absorbed better?  Or will the Prilosec, since it is long-lasting, interfere no matter how I try to manage the time I take the Sinemet?

Do you have any suggestions on an alternative to Prilosec?  I have gastrointestinal reflux disease, a sliding hiatal hernia, and a spastic esophagus.  The Prilosec has helped so much.  The Gastro doc I saw advised taking Priolsec.  I assumed he meant to take it all the time--not just in 14-day doses.  What are your thoughts re:  this?

Thank you for any advice you may have.

Linda Garren

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If the Doctor recommended that you take Prilosec, then you are safe to think that he intended for you to take it consistantly and not the 14 days as stated on the Prilosec information.

I would continue taking the Prilosec as it seems to work best for you, as you stated. As far as taking Prilosec and Sinemet together, as I stated this is not a good idea. The suggestion you made of taking the Sinemet about 2 hours before taking Prilosec is the same advice I would give. The 2 hour time frame allows the Sinemet to be broken down, absorbed, and metabolized in the liver before the Prilosec has a chance to interfere with this process. Any product that alters the stomach acid, accelerates the intestinal movement (ie. laxatives), or slow down the intestinal movement (ie. antidiarrheals, codeine based products) may interfere with the absorption of any medications in the body.

I hope this helps and please keep me posted.

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