Help! Shaking is driving me 😜

[Ep0522]

I have had Parkinson’s for about 20 years. Originally was given Sinemet cr. After that didn’t work anymore I was given Sinemet IR. Even though it happened at times, recently about ten minutes after I take the Sinemet I shake uncontrollably for about forty five minutes. When I finally quit shaking, I get relief for about an hour and fifteen minutes then I take another pill and the shaking starts all over again. Any ideas what’s going on with me? Thanks for any help. I’m losing my mind. My vitamin B12 was a little low and now it is plenty high. Could that have anything to do with it?

[laglag]

Hopefully someone has an answer for you, but I've been doing that recently. How much Sinemet do you take a day/night? And, are there other medslsupplements you take?

[Ep0522 in reply to laglag]

I have been on 25/100 Sinemet for a long time. I take it every 2 hours to a maximum of seven pills. The md tried me on Rytary, and it did fine for six months. Then it started giving me dyskinesia and I switched back. The only other supplements are fish oil and vitamin D. I have taken a beta blocker since I was diagnosed.

[Despe in reply to Ep0522]

You may add magnesium. Best for the brain is Magnesium Threonate. Search the site for Magnesium. Besides Magnesium there are a lot of supplements that help. One of them is B1 HCL.

[Ep0522 in reply to Despe]

Thanks for the advice. Willing to try anything that helps.

[b-bar in reply to Ep0522]

try l'tyrosine 500 mg pure like solgar you may be surprised. it s a human hormone may be no side effect.

[Hikoi in reply to Ep0522]

I suspect you are not taking enough lev/carb each dose. Just try once to take 2 pills and see if it makes any difference in your time tremoring.

[Ep0522 in reply to Hikoi]

Will try that.

[Hidden]

My experience also

[Ep0522 in reply to Hidden]

Thanks Roy.

[park_bear]

The problem with Sinemet IR is it yields very uneven levels of levodopa over time. That 45 minutes after your dose is the time needed to kick your levodopa level back up to peak value. I suggest you work your doctor to replace it with Sinemet CR. You will need to use a higher dosage of CR because it gives you a lower peak, or plateau actually, than the IR.

[Ep0522 in reply to park_bear]

Makes sense. The problem is my neurologist retired and left me in bad hands. I plan a 125 mile trip the end of this month to Duke to see a MDS, the first Specialist I’ve seen. Hoping he will adjust my meds. Thanks for your help!

[MarionP in reply to Ep0522]

Somewhat strongly would like to suggest that you see if you can get copy of your good neurologists notes and records. Then you can look through to strengthen your recollection of accumulated "what works" so it doesn't have to get lost with the transition to new care providers...

The idea of switching to CR is also very valid exactly for the reason Park stated. Same principle as pain management, get ahead of it by evening out the peaks and dips, and by anticipating and learning the timing of a dose's "wearing out" in comparison to the approaching time scheduled for next dose and in connection to half life and how it works.

(Ask professionals or people here too for help calculating this based on understanding the arithmetic of how "time to peak plasma" and "half-life" work, so you can start to manage them. Exactly the same way that one uses medication for best pain management, i.e., getting ahead of the fall-off because it is always harder to regain the beneficial effect if you have dropped through a practical threshold, better to manage by anticipating, in order to stay above some minimum threshold. Your goal will to become an expert in your own personal timing with the particular med you are working with to achieve as good a continuity effect as you can).

Also remember that over time PD is progressive and also that L-Dopa does eventually result in gradually more side effects, thus needing to adjust the carbidopa part of the CL, so the combo dose may eventually have to shift up or down the relative amount of carbidopa relative to the L-dopa.

[Hikoi in reply to park_bear]

PB can you say more about uneven levels of levadopa in immediate release. I always understood CR was less stable than IR.

[park_bear in reply to Hikoi]

Sinemet CR versus IR Pharmacokinetics

At this link you will find:

ncbi.nlm.nih.gov/pmc/articl...

" Mean levodopa (A) and carbidopa (B) plasma concentration–time profiles following a single dose of 2 capsules of ER CD‐LD (total dose, 97.5 mg CD‐390 mg LD), IR CD‐LD (25 mg‐100 mg), CR CD‐LD (25 mg‐100 mg), and CD‐LD‐entacapone (25 mg‐100 mg‐200 mg) under fasting conditions. ER, extended release, CR, sustained release; IR, immediate release; CD, carbidopa; LD, levodopa."

At this link you will find:

parkinsons-therapeutics.org...

a chart that also includes Stalevo and Rytary

[Hikoi in reply to park_bear]

Thanks PB but I’m afraid I find them rather difficult to follow. The first was a study on people without PD and was done by a drug company, I’m guessing to support Rytary. I’m afraid the second didnt tell me much of use either.

My experience is to have servere shaking as described by Esther with CR but not with IR, as long as I took an adequate dose. The CR with its long (and specialists have told me) unpredictable life means doses can accumulate and you don’t know what level of levadopa you already have when you take the next dose.

After many years on CR then a mixture of CR and IR I am now on IR. i have found it much easier to control and to predict how long the drug will last and hence take the next med before I go too low/ off. I know you are a fan of ER but it is certainly not the answer for everyone and i suspect especially not those who have had PD a long time.

[park_bear in reply to Hikoi]

Interesting. I dose at eight hour intervals. In my case minor differences in rate of absorption do not matter. If a person is dosing at say, two hour intervals those same differences in a long-acting preparation could really add up. So you make a good case for the IR version in long-standing Parkinson's requiring frequent dosing. That said, I continue to believe that time release versions are much better for early-stage Parkinson's.

[Hikoi in reply to park_bear]

Yep you have got it!

[johntPM]

Esther51, you write that you take a dose every 2 hours up to a maximum of 7 per day. That leaves a large gap in the 24 hours. (I'm not suggesting that you fill the gap.)Is that overnight? Can you please describe exactly what happens first thing in the morning. Do you get up feeling good before you take your first dose? Do you tremor before you take the first dose?

[Ep0522 in reply to johntPM]

Replied below. Sorry.

[johntPM in reply to Ep0522]

I'm not a doctor, so make of this what you will.

I'd try an experiment, albeit, for safety sake, over a narrow range, of from 5 to 7 pills per day. I'd keep to the present regimen for a week, jotting down the times of each dose and the effects (tremor, walking etc.). This becomes the baseline against which I could measure alternative regimen. The morning dose is usually the easiest one to get right. I'd try, for instance, 1.5 pills for the first dose. If that works, I'd stick with it, and move on to the second dose of the day. If not, I'd go back to the baseline. And repeat.

[Carolbren11]

Inflammation. Cut out sugar, eat healthy, and drink water. Also watch salt intake.

[Ep0522 in reply to Carolbren11]

Your probably right. I’m a sugar addict

[CaseyInsights in reply to Ep0522]

Sugar is a killer📌

Too much sugar in the diet cause my spouse to shake. Cut out the high carbohydrate foods and use alternative sweeteners like mannitol and xylitol.

Put much more vegetables in your diet🌺

[gginto in reply to CaseyInsights]

and plenty of cardio exercise seems to simmer it down a bit...

[MarionP in reply to Ep0522]

Sugar is very bad news for neurological conditions. Take it from me who has had a sugar addiction from parents and me not knowing better for decades and decades, but in a better happy place with it now. Really you should want to try to get a reasonable handle, gradually if you must but significantly reduce the craving through trying to get some habits changed, eventually you will find using perhaps other forms of sweetness will get you through the rough patches until you find you can get enough satisfaction with less. I now do much better using things such as diet tonic water and diet ginger ale, diet Pepsi or diet Coke, gradually even break those down with some water or ice, and some bits of sugar but less in my tea and use a really nice milk called Lactaid, more of that and less sugar in my tea.

[Ep0522]

Tremor all the time when pill has not kicked in, even while trying to type now. New neurologist is trying to get me on six pills a day to prevent dyskinesia. Doesn’t make sense to me.

[Hikoi in reply to Ep0522]

I think you tremor when your dopamine levels are fluctuating as they will do when you take meds. Your current regime does not boost them fast enough (it takes until you are at peak dose to really work) so you tremor while they are moving up. Once they are up you have a period of calm before the next dose unsettles them and you tremor again. It becomes a vicious up and down cycle. I suggested taking a bigger dose to see if you can get over the long delay to reach a high enough level so you stop tremoring. Yes you may experience some dyskenesia at higher doses but only you can decide which is worse, tremor or dyskenesia.

Your only other choice is to keep your dopamine levels high by dosing more frequently. I expect the neuro is trying to do this , to raise your levadopa plasma levels without giving you dyskenesia. Its worth a try.

[Ep0522 in reply to Hikoi]

Thanks, I think your probably right.I actually increased my morning dose and with taking a pill every two hours and watching my diet,,I have done much better today.

[MarionP in reply to Ep0522]

Now at this point a little creativity, perhaps starting off with a first but lower dose of IR and adding the CR to pick up after the IR has started to effect, i.e., what might be thought of as a "dual-mode", to minimize the shaking (using IR to get to peak faster) and extend the on effect (using the CR to create the more stable longer-effect baseline). Shot in the dark here with this idea, no guarantees from the management, but the idea comes from my knowledge of treating alcohol and opioid addiction, they each have multiple actions two different modes of action and the curves are different as time goes by, one occurs earlier and one occurs at the same time but then persists many hours more, so to treat it one really has to be aware to manage both of them. Perhaps there is something to apply for your symptoms.

[Ep0522 in reply to MarionP]

A very good thought if my neurologist would give. Me the cr. She is very hard to reason with and I live in a rural area. (Not any mds near me)The reason I plan a trip to Duke the end of the month.

[MarionP in reply to Ep0522]

Now I thought you said she retired. You can talk to her about the idea of continuity of care, also offer the wave any right of yours to sue her, thus protecting her so that she no longer needs to pay for professional liability insurance. Given that after all she has taken an oath, and that includes arranging for proper continuity of care so that her knowledge is not lost (which would violate proper continuity of care) you can ask her whether she can be nice and reasonable and professional and think of somebody else instead of her own rigidity. I grew up in a family of doctors and I believe that if you talk to them clearly that way as if you're really an equal rather than a subordinate they get the picture and will go with your logic rather than any authoritarian or rigid feelings. But you have to be frank with her and not portray that your beneath her, or less knowledgeable or worthy period it's really woman adult to woman adult eye to eye. It's worth a shot because you have nothing to lose and the assertiveness will do you good, and when you mention waiving her liability, it also means that she has a way to get out from under you having to go to court to get access to them which she will appreciate if you mention it. after all, you said she's retired, so what does she care anymore...but you also portray that you have a right to know your information, it's ethical, and that you will act to protect yourself if she forces you to do that, because unnecessary resistance implies she has something to hide, which you doubt would be the case but you can also mention to her that fear makes us do unreasonable things, all you really want to know is how to keep your continuity good because your disease after all did not retire when she did. Once she realizes that you are serious and not to be put off, she will also realize that the path to least hassle is to give you something that you can use to educate your new caregivers. That's how you go at it. I have done that before and I assure you it works more than half the time for me and mine. You can also mention that this is what Mayo clinic does by policy, as it is a good example of best practice. If they can safely do it then she certainly can.

[LAJ12345]

This happened to my husband too and it made him very anxious too. But it was when he increased the madopar To 4 per day . Now he has dropped back to 2 per day it has stopped the juddering and he is feeling less anxious but now it doesn’t seem to be enough as he was very stiff today.

[AaronS]

Have you tried sitting in a chair when your going thru an episode, and contiously tried stopping it? We are so used to our bodies just doing what it's designed to, however PWP are on a very different path regards their normal body functions.

You need to literally sit or lay in bed comfortably, and tell your brain to stop the shaking, do this method with any dyskinesias and I have had great success, I look weird with random movements but it does work.

It's a case of your controling your brain when it needs a boost

[Godiv in reply to AaronS]

That’s interesting, Aaron. I had a slightly different experience, but it was interesting. Sometimes my heel goes up and down on my right foot. It’s like a reverse toe tap or some thing. I had it the other day and perhaps it’s caused by too much dopamine I’m not sure. Still trying to figure it out. Anyway I deliberately did the motion 50 times or more and that stopped it for a while at least. I wore it out I suppose LOL. I wore it out I suppose LOL. So you’re right, we have to think of things differently with the way our bodies work now.

[koshca]

The same with me....

[Hidden]

Diet drinks might have effects too. Please google “aspartame + levodopa”. It may be worse for women.

[Janx]

I have had Parkinsons for 7 years and really struggling with it now. My tremor is really bad now and have shaking hands & legs -has anyone experienced the following: After taking Sinemet 100/CR I feel fine for 2 to 3 hours after taking tablet – around 2.5 hours start feeling very tired, my speech becomes slurred but gets better once the Sinemet wears off. I feel dizzy, lightheaded, freeze, hands & body get very weak and can’t do anything e.g. Eat, pull my trousers down, get wobbly, lose my balance and feel spaced out with them. Lose function in my hands, can’t eat, (e.g.) cant write and just want to sleep. It is a strange feeling not being able to do things. My hands go numb, start clenching my mouth and find it hard to communicate. 5-6 Hours numbness goes, speech is back to normal, start feeling like normal. Any tips are welcome. Thanks JS

[parkie13 in reply to Janx]

What is your drug schedule and how much do you take?

[Janx in reply to parkie13]

Thanks for you message. See Meds below as of no;

10.15 am - One tablet 1x 100 mg Amantdine & One tablet 100/25 CR Sinemet

3:00 pm - 3.15 pm One tablet 100/25 CR Sinemet

10.30 pm 1/12 tablet of 100/25 CR Sinemet

I take other medcation for heart failure and severe RA so I am pretty complicated. The shaking driving me crazy.

Thanks

Janx

[parkie13 in reply to Janx]

Hi, I have never been on amantadine but I have heard of a lot of problems with that drug, have you been on it for a long time? Also, if I am reading is correct your only using 3 1/2 pills of sinemet CR? Is your dosage so low because it does not agree with you? My Tremor gets a lot better when the sinemet kicks in. Now I am on six pills a day. The same dosage p e r pill as what you are taking. Maybe someone else will have an idea. Mary

[Janx in reply to parkie13]

Thanks for getting back to me. I have been on the Amantadine for 5 years only 1 per day.

I am taking a whole Sinemet tablet at 10.15 am and a full tablet at 3.00 pm. Often get hiccups. Take 1/2 Sinemet tablet at 10.30 pm so in total 2 and 1/2 in the day.

What I dont understand is how good I feel when I wake up and can do everything and have had no medication for 9 hours. I take the meds and feel awful starting with the wobbling. Thanks JS

[parkie13 in reply to Janx]

What does the doctor tell you? With my limited experience I simply have no idea. I do wish you all the best. Have you tried thiamine HCL? Magnesium, a multiple vitamin / mineral supplement? Mary

[Janx in reply to parkie13]

The doctors say they dont know what else to do as cant tolerate high quantities of Sinemet... guess I will have to keep on trying. Have tried vitmin B1 but didnt feel good so stopped it after 3 days. Any tips welcome. JS

[parkie13 in reply to Janx]

Don't know if this can apply to you. Beta blocker helps some with shaking. The drug, which is a bile salt, Ursodiol, helps. A while back they had a whole slew of articles about Tudca a similar supplement that helped. Doing mind control helps. You can concentrate about thinking of stopping the tremor. On inhalation say "peace" and on exhalation say "quiet hand". This is effective but it takes a bit of practice. I believe it was "Nan the cyclist" that mentioned that one.

[Janx in reply to parkie13]

Thanks for the tips - much appreciated. I am on Betaloc for my heart - the Ursodiol i havent heard about nor the Tudco will search for info. I will believe in the mind control. Have you hearad anything about melatonin? Thanks

[parkie13 in reply to Janx]

There's very few people that cannot tolerate melatonin, so if he can tolerate it it does wonders for your body, I believe. I used to take 10 mg at night. Then I started getting headaches and I don't know why but I did stoped it for couple years. Then during the night I started having slight hallucinations, when I looked at my flowery curtains I could see faces moving. Went back on melatonin, only 5 mg, and haven't had anything like that since. It's a great antioxidant for your brain. It also works for Sundowners.

Chartist has written extensively on melatonin.

[tjsmith52 in reply to Janx]

I have diphasic dyskinesia and there is a definite freezing like what you mention during transition from off to on or on to off.

[OREOLU in reply to tjsmith52]

Hi tjsmith52.

Could you describe what you call diphasic dyskinesia? I will like to know what it looks like. I have recently developed some type of dyskinesia which I only get when my medication is wearing off,and stops when the next dose kicks in. Also,what do you take for your dyskinesia?

[tjsmith52 in reply to OREOLU]

It’s probably best to google it but it sounds like you might have it. I don’t take anything for dyskinesia but I have to be careful about how many doses of carbidopa/levadopa I take to keep the dystonia/dyskinesia in check...any way you can take a day break off meds? Also, do you get dyskinesia/dystonia when your meds are kicking in or just wearing off? I’ve read your posts...I’m also stiff and slow type of Parkinson’s

[OREOLU in reply to tjsmith52]

Hi tjsmith52.

I get dyskinesia/dystonia when my meds are wearing off, but lately, at times, the dyskinesia continues even when it is expected that my meds have kicked in. I checked online, and it seems that my meds needs readjustment. How long does your dyskinesia last?

[Hidden]

Try Vinpocetine. It’s helping me.

[Ep0522 in reply to Hidden]

I was just reading about this. Can you take it with carbidopa levodopa ?

[Hidden in reply to Ep0522]

I am not sure because i have been avoiding prescription medication. I do take it with mucuna Pruriens powder and matcha green tea with mannitol all dissolved in oat milk.