[kenki]

I was diagnosed with PD two years ago, and have the complication of Chronic Fatgue syndrome superimposed on my PD.

I am trying to keep my Sinemet to a minimum, and my neuro advised initially 3 doses per day of Sinemet plus (100mg L-Dopa) at 6-00am, 2-00pm and 10-00pm. making 300mg per day.
My symptoms are unbearable. Both legs are filled with electric current and pain _ I can hardly stand. My toes are curling on their own and crushing themselves. My chest is in a spasm like a heart attack. And I have nausea. Sinemet makes no difference to this cavalcade. I also suffer from acute vertigo and nausea.

My neuro therefore suggested increasing my Sinemet to 450mg per day, 3 x 150mg L-Dopa at 6-00am, 2-00pm and 10-00pm. This would be achieved by adding 50mg to the 3 doses over 6 weeks.
I am part way through this regime, but the extra 50mg is not making any difference. In fact I am even starting to freeze now. My kind and ever helpful friend Ron Hutton suggested my doses are too far apart, due to the short half life of L-Dopa. However, I desperately want to avoid increasing my daily total dose of L-Dopa. I am not taking an agonist at present.

Ron was diagnosed with PD 19 years ago and although disabled by dyskenisia leads an active life. Ron believes that his planned medication enables him to be active

Has anyone had similar eperience? What advice do you have regarding level of dose, frequency etc? I would be very grateful for help.

Kenki

[lindylanka]

So sorry to hear that you are having these difficulties with your medication.

First I would like to ask whether you are having any relief at all from your symptoms, and if so how long after you take your sinemet?

You do not say whether your neuro is a general neurologist or a movement disorder specialist, there is a difference, and PD is notoriously hard to treat - it often takes a while to get the right balance of medication for the individual.

Your doses of sinemet are 8 hours apart. This is a long time inbetween doses and unless you stay up very late the last dose will be relatively close to bed time. It is more usual to take sinemet and for it to be prescribed at four hours between doses. So it could be an idea to bring the doses closer together rather than increasing them, by taking 4 doses instead of three.
The long gap between doses could be giving you a wearing off effect that is making you feel worse.....

You say you are experiencing nausea - there are drugs that help with this. If you are outside of the US a good drug is domperidone. But there are others available in the US.

Sinemet dosing can be tricky, too much and the symptoms can re-emerge, and too little does not work. In addition to this sometimes the body is not good at getting it to the brain for several reasons. One of these is dietary. Protein competes with sinemet so should only be eaten late in the day, and it is often better if you do not eat within an hour of your meds, though different people have different responses to this. Another reason can be that the uptake of sinemet in the brain is not very good. In this case often a drug called Comtan (entacapone) can be added to each dose, or a combination drug called Stalevo can be prescribed. Increasing sinemet is not the only option you have.

You need to discuss these options with your neuro, and in order to help him/her it may be a good idea to keep a sinemet diary so that it is clear when your medications are bringing relief, and when they are not.

Hope this is of some help, and that you are able to find a good balance of relief from your symptoms.

Best wishes
Lindy

[kenki]

Hi Lindy,

Thank you very much for such detailed & prompt advice. I live in the UK and my neuro is not a specialist in movement disorder. Self-deprecatingly he calls himself a “jobbing” Neuro. I have already re scheduled my medication time table and take Sinemet 62.5 (containing 50mg of Levodopa and 12.5 mg of Carbidopa) at shorter intervals of 6 am- 9am-12 am-2 pm-6pm and 10pm. The first dose however is a hefty 100 mg. None of this has given me any relief, instead increasing vertigo, freezing and onset of serious rigidity of my leg muscles and abdomen muscle group. Sadly I cannot envisage taking additional drugs, as my Chronic Fatigue delivers malaise, arrhythmia and muscle spasms. I am aware and to some extent familiar with dietary restrictions.

The possibility of my illness being something other than PD has been proposed & dismissed as I did respond the Levodopa therapy at the beginning and its effectiveness though limited, lasted till now . That its wearing off effect could make one feel worse is new to me and fits the picture. I have been prescribed domperidone but reluctant to take it (I understand it enables swifter emptying of the stomach) as I take Zopiclone and Tamazepam combined to get some sleep at night and adding domperidone scares me. I am not familiar with the “uptake of sinemet in the brain” being insufficient. Are you talking about dopamine agonists like Rasagiline which I had to give up after a 21 day trial when the symptoms became worse and have remained so ever since. My neuro tells me that I am under-medicated. I have been keeping a Sinemet diary and hoping this distressing experimentation would bring some answers.

I am wondering if there are PWDs with further insights that would help.

Thank you again for your advice.

Kenki <<<

[lurkingforacure]

I am so sorry you are having such a hard time. We don't really do that great with sinemet either, although I think a big part of that was all the hoopla leading up to its use, we kept hearing about the sinemet honeymoon and how great it'd be for 3-5 years, and, well, nope, not for us. We have tried several variations on a theme with the goal being to keep the sinemet to a minimum.

We tried taking the 3-4 pills a day of sinement every hour, splitting them up, so it'd be like this:

6am 1/4 pill (combined with .25 mirapex)
7am 1/4 pill (same) ....all day long

Problem with that? Can't eat a damn thing, then you are up at 1am ravenous, and devour the pantry. Other problem? Took way too long to build up the sinemet in the system for the day.

Now we are doing this instead:

7am whole pill (.25 mirapex)
8am 1/2 pill...

This is better because it begins to build up the sinemet in the system faster, and allows some "play" during the day depending on how things are going.I can't say we feel "good", but the early morning is not as slow as it was under the first dosing regime.

NOTE: we are not reducing meds, which can be dangerous without your doc's help. We are simply playing with the dosing times, this is with our doc's approval (he's all for doing whatever works, BTW). There are several folks who have reported much better results with the same amount of meds by simply changing the dose time and/or amount...but the total daily amount stays the same.

I feel badly for you and really hope things improve for you. It sucks to have to take meds to begin with, but it's particularly crappy when they don't provide much, if any, relief.

You may also want to check out the mucuna threads here, lots of folk report that is helpful for PD as well. Good luck.

[pkell]

Getting meds right is as big a challenge as raising teenagers. My problem is not exactly like yours but there are some similarities. I have had PD for about ten years. Four (or so) years ago I started with the curling toes and pain in the back of my legs. I had been taking Permax very successfully and the cramping and distortion started when I had to change meds.

The change to carba/leva did nothing to help. Ultimately I just kept taking more and more with no relief. Then Requip was started (again, the first time the nausea was more than I could live with) which allowed me to reduce much of the c/l but still did not help the problem enough to enjoy any q of l. Two weeks ago we added Amantadine. I'm up to two per day on my way to three and have had a marked improvement.

You never know if what works for one will work for another but maybe (?) Good luck,
PK

[lindylanka]

Hi Kenki,
I'm in the UK also. It would be good if you could see a neuro who really knows about PD, but if that is not possible do you have access to a Parkinsons Nurse Specialist? They are the people who see the problems on the ground, and in the home, rather than in a clinic setting, and mine has been just brilliant.

When I referred to 'uptake of sinemet in the brain' I was specifically referring to the sinemet you take not actually being converted in the brain. This can happen, leaving you effectively undermedicated regardless of what you are taking - and entacapone, a COMT inhibitor, helps with this - don't ask me right now what COMT is, I'm no scientist! The main thing is that it gets the sinemet working where it is needed.

Balancing meds is indeed one of the biggest problems we have. I was getting a lot poorer results from sinemet than I realised, and had some of the things you describe, and just put it down to the condition, a bit fatalistically, until my meds were adjusted, and the difference is incredible.
I was given a couple of choices on which way to go, and went with the entacapone, which gave almost instant improvement, but took some getting used to.......

Check with your neuro that it is ok to take the domperidone with the other meds, if it is then you should give it a try, I know people who had exactly the same hesitance over using it as you do - it is very effective with both vertigo and nausea, and you should be able to reduce it slowly after a little time and come off it completely.

Sounds like the rasagiline upset the balance you had achieved. Something worth remembering with PD is that it can take a while for a new regime to settle down and be effective, whether or not you feel that you are responding.

Another possible avenue of help is the PDS helpline............

Lindy

[reverett123]

This may be a little disjointed but I will give it a try.
First, as I understand it, you are taking only sinemet at present and that in the standard release form. The other drugs mentioned are either tried and discarded or are potential add-ons.

If that is so, then you are getting little or no benefit from the sinemet. It takes an hour to hit your system, spikes, and is gone by the two hour mark leaving a little pile of waste products behind. The levels in your system are never getting to a point where you know if it will help or not. Instead, you are being jerked back and forth.

I don't give medical advice but I will tell you what I would try. (This will need to be coordinated with your doctor because you are going to use up some pills at first.)

I would take ten of those sinemet 10/100s and crush them and dissolve them in a liter of water. Then I would drink a tenth of the solution and repeat that dose hourly until I began to notice an effect, either positive or negative, at which time I would drop to two hours for the next dose, three for the ones from there on. Keep meticulous records. What you take, when, and how you feel on the hour.

Somewhere along the line you should notice improvement, even if only for awhile (as might happen if your dose gets too high - in which case you increase the time between doses). If you do not, then your diagnosis needs to be looked at again. If you do improve, then your notes will give your neuro a place to begin.

During this day of experimenting, eat very plainly. Just fruit and nuts is a good choice because some food additives as well as excess protein can cause some of the problems. Once you have this baseline, however, you can start tweaking things. Good luck. -Rick

[kenki]

Hi everyone trying to help me: It seems we all have had problems and some are still struggling to find the optimum medication. My problem is I am symptomatic with vertigo, nausea, rigid legs, tremors in the legs and arms at night (like a stranded seal with flippers flipping) stomach muscle spasms, burning restless legs, acute sense of smell as if the air in my bedroom is toxic (that is a subject in its own right).

Hence I have not experienced a switch on and switch off – at least not at present. I have been keeping a Sinemet diary for a week. I used to take Sinemet Plus (100 mg of Levodopa and 25 mg of Carbidopa ) 3 times a day at 6 am – 2 pm and 10 pm. Only clue to the efficacy of this dosage was my ability to touch typing again and being able to walk inside the house without rigidity and turn swiftly. Ron pointed out that this left me with no Levodopa in the blood stream for several hours at a time, and I needed to even out the peaks and troughs by taking the same total dosage in 50mg parcels every 4 hours. I have more or less done that and the result is much much worsening of rigidity, vertigo, muscle exhaustion (blamed on Chronic Fatigue), freezing, micrographia. Last night I was tremoring so much that I could hardly sleep.

The regime was a simple division of 300 mg of Levodopa in to six parcels of 50 mg each taken at 4 hour intervals instead of 8 hour intervals. It made things worse, as I was under-medicated.

SO I am now on to regime 3 on week 3. Start the day off with 2 hefy doses and then 4 equally fractioned doses of 50mg each at 3 hour intervals -6 doses in all per day.

Ron Recommended:

taking the first dose as late as possible, 6-00am if you can't take it later.
Then 50mg every 3 hours giving;
6-00 100mg
9-00 100mg
12-00 50mg
3-00pm 50mg
6-00pm 50mg
8-00pm 50mg

Suggested 2 x 100 in the morning is an attempt to see if one can be on all morning, and to get some idea of one’s responsiveness to L-Dopa.

He also advised me to keep careful notes of what time I switch on and time I switch off.

Lindy was also trying to get this information from me.
"whether you are having any relief at all from your symptoms, and if so how long after you take your sinemet?"

In Ron’s words
“In the long run, you will gain experience and confidence to optimise your own regime.
Others can only suggest what they have found helpful.
We will get there, but you have to be prepared to test various regimes, and select the one that works for you.”

I will report back should this be of help to anyone new to Levodopa or cannot get it to work.

On day 1 alone, I have improved amazingly, spells lasting an hour when I can move, carry plates, although I still cannot get in an out of arm chairs without help nor get my legs over in to the bed which is 57 cm high from the floor

Rick, thank you for your innovative advice. Some day I will try it if all else fails. I am too frail of heart right now. Meanwhile thanks again to everyone who reached out to me.

Kenki

[Conductor71]

Kenki,

You have plenty of good, solid recommendations here on your meds, and I can't help any further than that but to say sorry you are suffering. Also, please keep in mind that PD affects multipleareas and neurotransmitters in our brains; it goes way beyond loss of dopamine transmission. Please, please seek a neurologist who is not "jobbing" one who is up on the latest research to help you. Sinemet does not address all our symptoms; please work closely with your new neuro to get your major ones under control.

Best to you,

Laura