Parkinson's Movement
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Little on time and so much pain

I am at my wits end and can no longer cope any longer. Is this normal. I have had diagonoses for 6 years. I am meant to take 150g Sinemet every 3 hours.

It is only lasting 2 hours and my offs are agony. My stomach cramps so painfully I feel I'm going to pass out my chest is ridgit I can barely breathe and painful and my throat is so sore and dry and it is very difficult to swallow. Swallowing the pills is hard as I can't swallow water very easy. As the day goes on the pain is worse and I just can't cope as often the doses don't kick in as if I eat more than a few mouthfuls or protein they can't absorb into my body.

I can't carry on like this much longer and I know no one that has to lie down in agony every 3 hours. If anyone has any suggestions I would appreciate it. My life is hell

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See Dr. Ask if switching to sinemet cr or combo of ir & cr would help.

Start on b1 hcl right away

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Its your neuro's job to get your meds optimised so maybe call you r Parkinsons nurse if you have one else see your GP to ask for an urgent appointment. Take care

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Sorry you are feeling so bad. I think you need to see your dr asap as it doesn't sound right. I'm not sure if stomach cramps are part of PD?

In the meantime try taking some nurofen and see if that helps as a temporary measure. Also I really suggest you give mannitol a try - it seems very helpful for some people (including me). You can get it online.

Hopefully you'll be feeling better soon.

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They are Sinemet side effect as are most of my problems even my speech

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Connie 18,

I have had PD for 13 or so years; real bad symptoms for around 8 years.

I am a heavy user of Sinemet also. My dosage is two 25-100 mg tabs every two hours, day and night. This is 2X your current dosage! That is at least 2400 mg of Levodopa daily. It is a situation where I hate the medicated feeling but I also know that I will have full muscle freezing and my mental cognition also drops when without the Ldopa (same as Sinemet).

I know exactly how you feel. I have full body pain (muscles, nerves, etc.) and the Sinemet does not always take care of the pain (I also with use 3 tabs of 200 mg ibuprofen but not more than 1200 mg of this daily). I also have daily bouts where the sinemet does not work really at all for me. My symptoms are the entire body muscles feel as if fully contracted and will not release; even my head and brain feel somewhat like they are restricted. I can not sleep, work on computer or really move much without a tremendous amount of effort. When the muscles release at some point after taking additional Ldopa, I can relax and fall asleep. However, then if medication starts working, I get a reaction of extreme dyskinesia; this condition, as you know, is almost as bad in an entirely different way.

I would not suggest using the CR version.

Here are the things you need to focus on:

1) Low stress environment (quiet music, low volume TV, calm discussions, etc.) because the Ldopa definitely is depleted or even sometimes does not get into system for me with stress levels on high.

2) Low protein diet is absolutely imperative also! For me, anything more than 10 gms of protein before a dose of Ldopa completely negates its effectiveness of that dose. If I eat a hamburger or a couple eggs or something else that is around 30 to 40 gms of protein, I won't get any benefit of the Ldopa for the remaining part of a day. So.... what do we do to get the needed protein (average reqd. is 0.8 gm / kg of body weight / day) for a 70 kg person or 56 gms? Consider the following:

(a) eat no protein in the morning (b) eat only a small amount of protein (10 to 15 gm) at lunch (c) always take Ldopa at least 30 to 45 min. before eating protein or you must wait 90 to 120 minutes after eating the protein before taking a dose of medication (d) just work on really minimizing your protein and experiment with either eating all of the 56 gms of protein (late evening) at one time (one meal) or portioning the protein out over the whole day (start after lunch however); for me, a little bit all day, does not work well. For me, other than just not eating a lot of protein, I tend to consume it at one or two meals and then just live with the fact that I will suffer consequences later. If I eat a little all day, I suffer all day. But try both ways...

I have the same nasty symptoms as you where everything gets real constricted and my off is very challenging. I am convinced this is from several things with the protein having a big influence.

3) Try caffeine pills! It is a known medical fact that caffeine has influence on the A Adenosine brain receptors that are collocated with the D1/D2 dopamine receptors. I drink caffeinated beverages or take 100 mg caffeine tablets at different times during the day. Not regularily spaced times but when I need to get a "brain kick"; if the Ldopa is not kicking in, then drink a Coke or take 100 mg caffeine tablet and this will tap into the Dopamine receptors and wake them up.

4) Thru put of food thru your body is important to monitor. The speed of digestion, either faster or slower, really effects how the Ldopa works for me. For example: If I eat at 8am and have a bowel movement by noon vs not having one until 6pm, this effects how well my medication works because I require so much of it every hour.... On the other hand, if a person is only needing 3 tablets per day of Ldopa, the speed of digestion is not as important.

5) I have been told that the Duopa procedure is necessary for me because of how important consistency of getting medication is for me (I knew that already!). This device injects medication (Ldopa) thru a feeding tube directly into my lower intestine (bypasses stomach). I am still thinking about it because it does have some draw backs. I also know that the protein issue will still be a problem.

Hang in there. I am really struggling also. I myself, have almost daily thoughts of calling it good and ending my misery. Knowing that there are things to alleviate the agony and make it manageable along with my loving family keep me going.

Try these things and please let me know how it goes.

PS. why don't doctors have some things that are practical to try; the PD community is always bailing the MDs out. Frustrating!

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My heart goes out to both of you. I'm so very sorry. None of us know what's going to happen to us. And you are right, most of doctors don't know. I have finally joined a support group, it has been available for about a year-and-a-half, I just have not been going to it. I am the only woman with PD there except for the caregivers. And guess what , there's two men that have MSA. One of the man is very advanced, which did not take long for him to become that way, the other man looks like he's in his fifties just got diagnosed a short while ago. I'm very sorry

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Thanks parkie13. But you also have it now so we need to get you thru it without experiencing all of the mistakes we made along the way. Prepare this way:

1) get all potential stress issues in your life under control immediately. Once you hit the advanced stages, no matter how well you have been at handling stress and anxiety, no matter how much exercise you have done, no matter how healthy you have eaten, you will be mentally challenged in every way possible. PD is a cognitive, mental disease as much as it is a movement disease.

2) limit your medication for as long as possible. Even though Sinemet (Ldopa) will be a blessing to you and make you feel great initially, it becomes a very addictive, nasty medication that will become a "necessary evil".

3) really show appreciation toward your care giver now! they will be tested every day/hour from now on. It will be more difficult to show love to them when you are struggling and hurting.

4) educate everyone around you about how PD will behave. It will appear to be fake to people around you. At one moment you can't move or walk and maybe seconds later you will be able to walk briskly. People will look at you very funny..... and maybe conclude that you are just a fake that wants attention. If you educate them that the dopamine that they get normally, does not come to you in a normal manner; in fact it comes from tablets that are not consistent (stomach to blood to brain); because of this you might walk or not walk based on whether the dopamine is getting produced and received in your brain properly. Eventually, you and they will find that the dopamine deficiency really effects thinking processes as well. I know this personally.

There are many more of these bits of advice but I believe these are the biggest for me. If people understand why you act in a certain way that does not appear normal, they will be able to cope with the situation better and also you will be treated with more respect. They should not be nice to you just because; they should instead treat you well because they understand that you do not/will not be able to control your condition in terms of movement or mental behavior.

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Thank you for the heads up

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Thank you for this post !

Very correct and interesting.......

I am reading this in my bed, after a bad night . Due to a discussion with the pharmacist >>>> the pills he give were others than before......a silly discussion startet......

Now I have a question : do you have 3 sorts of Sinemet ?? CR. IR. and Normal ??

Can't reach my neurologist....

Am still in a beginning phase, but I want to know this, because the medication

sometimes works, sometimes not....

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Yes, the cr is long acting, the regular should last up to 4 hours but takes about 45 minutes to begin to work and immediate release melts under your tongue (sublingual) to work faster than the regular but don’t last as long after that.

I had CVS drugstore mail away for prescriptions and was given different kinds and brands with each order. I was having good luck with some and not with others. Finally showed neurologist who told me they were nor the same at all. Sometimes even a change in manufacturers can make a big difference.

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Thank you very much !

This forum is great, cheap and mostly to the point.

It's frustrating that you have "to put the worms out of the nose" of some experts ("Fachleute" in german) to get information.....

Camper, I suppose your not a neurologist, but still : what should I do >>> change from regular (the yellow round ones, here in Switzerland) to the CR (here oval, rosa ones) ??

Because the last weeks I've had some ups and downs.....concerning movements

(General a bit more energy, but probably due to the Thiamine.....)

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until you get to know your body and how the different medications effect it, stay with your neurologist's suggestions. Also, you don't want to alienate your doctor, if they feel you are listening and trying their approach, they probably will get you going on the best track; if they see that you are ignoring them and doing your own thing, the doctor probably will only provide minimal support.

I would stick with the regular type.

One thing you can do to enhance and speed up the Sinemet is to crush it into a powder and mix with orange juice; then drink it quickly (few minutes) OR try the same thing but instead drink a sip (small amount) every few minutes over an extended period of time (all day). If you do this, just use the following formula:

total daily allowance for Sinemet: 8 tablets [25 - 100mg type](I use this as an example amount)

Save 2 tablets and crush the remaining 6 tablets; add them to 0.5 liter of orange juice; mix. Use the two tablets for one consumed at lunch time (0.5 hour before or 1.5 hours after eating) and the other at dinner time.

I hope this helps; it did for a while for me. PD causes constant change; you will find that most things only work for a while and then you will need to try something different.

Good luck

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Thank you very much !!

I'm not yet taking so many tablets, but I can already prepare it a bit like you say

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No I’m not a neurologist and even after sorting out my meds and being on a stable dose of the (yellow) ones, I still have ups and downs, Dr. Started me on entacopone to lengthen the sinemet doses but even with that sometimes I do really well and sometimes they don’t seem to work at all, just part of the disease I guess. Sorry I couldn’t be of more help.

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No problem !!

Thank you very much, camper !

Now on the train to the supermarket , getting some good, bio-vegetables, and talk a bit with a friend....

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Sometimes talking with friends is the best medicine, have a great day!

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ER = EXTENDED RELEASE, CR = CONTROLLED RELEASE, IR = IMMEDIATE RELEASE. IR would be the "regular" version. I'm not sure if there is an actual difference between ER and CR (I take IR) or if those are interchangeable terms for the same thing. I'm sure someone here can answer that.

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loves your words "really show appreciation toward your care giver now! they will be tested every day/hour from now on. It will be more difficult to show love to them when you are struggling and hurting." and especially so as will be going for a Spa treat later while siblings sit in and chat to MyBelovedhasPD. First time ever, and so grateful to receive this gift.

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Just go for the DBS surgery-I am having it in April and I can't wait . My brother in law had it a few months ago and is doing super.

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turned down by two separate neurologists; they won't do it because I have memory issues; unfortunately I also have epilepsy.

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I am so sorry,but they are coming up with all different helpful surgeries for Parkinson's. Bless you and I wish you well. Lynne1946

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Bless you in your coming surgery. So many have reported nothing but positive outcomes.

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Hi Dboobar !

Thank you for your realistic, open post. Hard for me to read, but also helpful. It is all not so progressed for me, but I am single, living as a foreigner, not Swiss in Switzerland.

So the issue "social contacts" will be a great problem.....

I'm scared about that.

After a bad day yesterday, mainly due to a discussion....., I have to realize that I have to get a better, firm, social environment 😔😔

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yes. don't panic but start working on finding friends. Sounds easy but this is not.

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Do your points 2) and 2a) refer also to co-beneldopa intake? As carer I've never been properly instructed as regards protein and its effects. Beloved loves chocolate and eats two squares daily (approximately, high quality dark) and maybe he's been benefiting without consciously knowing...yeay!

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I am not familiar with how co-beneldopa interacts with Ldopa but if it has an amino acid chemical structure then it will directly compete with the food proteins that you have eaten.

The chocolate (from theobromine) affects the adenosine receptors. Adenosine acts in parallel as a neuromodulator and as a homeostatic modulator in the central nervous system; chocolate counteracts adenosine build-up and provides a small bit of pleasure that you are missing without full dopamine reserves.

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I agree i think on the whole we are left to sort our o end problems out. I am shocked that the meds have more side effects than the condition. They have even cost me my voice. I think you'll find that yourvpain is mainly due to the Sinemet. I know what you mean about the medicated feeling. I never feel my normal self.

Also I was told that Sinemet was for movement only . There was no mention it would effect your cognitive skills had I known I would never have taken it., I fee l I can no longer think for myself.

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Here is a study which may help you lower your daily 1, 200 mg ibuprofen use by combining it with 100 mg of caffeine. As an experiment I purchased 100 mg caffeine capsules on ebay.

Single dose oral ibuprofen plus caffeine for acute postoperative pain in adults

cochranelibrary-wiley.com/d...

If caffeine makes you stressed you can mitigate its effects with L- theanine.

ncbi.nlm.nih.gov/pubmed/180...

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silvestrov,

Nice! I am going to really work this idea. Caffeine is a good medication for PD if used properly. Maybe this study, along with experimentation, will yield a nice balance and get my Ldopa down. I will give you a few updates as I give it a try. Thanks.

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I too am going to try this combo and will include theanine to reduce the excitation effects of caffeine - kinda like a reductive cup of tea. All 3 supplements have been shown to be good for PD and, in animal models, theanine increases brain dopamine levels so this is an experiment worth trying. Definitely post updates (pro or con) because others have pain issues too.

More on theanine and caffeine:

parkinson.org/blog/whats-ho...

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Connie

What Dboobar said , do as much as you can

It takes some one at or past your stage who has been through it and worked at controlling it to understand and be of help. I am not there yet but I can confirm the above that pertains to my condition works. For example , I have a coke open nonstop constantly sipping.

One thing I do know is that with PD , stress starts a vicious cycle and there are ways of handling it and controlling the stress to stop the cycle and associated pain. NOT easy as pain and frustration cause stress, but doable.

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if you want to limit calories/bubbles then 1/2 Nodoz tablet (100mg) works as a substitute for a 0.5L Coke.

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Are you seeing a movement disorder specialist and are you exercising and meditating? Those things will help more than you think.

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i am having some luck with Gabpentin. It helps with the pain and down time.

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No I agree stomach cramps shouldn't be part of Parkinson's I do get wearing off in between doses starting sinafimide Tuesday let you know if it works don't give in to it I would suggest seeing yyour neuro

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I would be interested to see how you get on with sinafimide

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Thanks for all your time to leave suggestions. Unfortunately I have tried all the suggestions before. Even if I take Sinemet cr I only get about an hour hour and half of im lucky. Even if I skip food completely. It's still the same result. I think I'll just have to keep looking for alternative ways to find answers

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i feel the same as you.

i now take 1 aan 1/2 pills of sinemet 25-100 every 3hours, even thru the night.

i have become almost entirely vegan and hav lost a lot of weight that i didnt need to lose.

i think, ''if i were a beloved pet i would have been put to sleep a long time ago.''

there are no doctors where i live who can help, except to try different pills that make everything worse.

i also take vicodin a little for pain

i dont know wht i have done in life to deserve this.

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Hi Connie -

Have you considered going to a different neurologist? Is your neurologist a movement disorder specialist? You might want to consider a 2nd opinion at another neurologist. There are many different combinations of medication for PD symptoms and maybe you need something different.

It might be easier to swallow if you drink through a straw if you haven't tried this.

Also if you live in a state that allows medicinal cannabis, you might want to try CBD oil or other cannabis products. They act as muscle relaxants and you can purchase hard candy with cannabis that you can suck on, so you don't have to swallow a pill. If you talk to the people who work at a cannabis dispensary they can tell you what might help you. I have found these people to be very knowledgeable. Don't worry about getting high! They have products like CBD oil where almost all of the THC is removed. However they have told me that products which still have some THC are probably most helpful.

I Just hope something I have suggested might help. Take care and keep in touch with us. If nothing else, getting your frustrations out on messages to this group might make you feel like you are not alone.

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Thank you for your time to reply. I've done all those things unfortunately except the cannibis as I don't live in america

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Possibly a stupid suggestion, but are you dehydrated? You need to drink plenty - at least 5 glasses of water ( or squash, tea, coffee) a day, no matter how difficult this is.

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Yes I drink loads of water

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My husband too experienced such terrible pain with Sinemet that he almost became suicidal. He used to sit in a chair crying in agony as his legs just 'cramped' when the meds kicked in. Sometimes the painful 'cramps' didn't wear off and lasted for hours. Finally, a new local doctor put him in touch with a brilliant PD specialist who immediately recognised that the Sinemet was causing the pain! He switched my husband to Stalevo (L-dopa with carbidopa and entacapone) plus Gabapentin and also had him take Pramipexole and Amitriptyline at bedtime so he could sleep through the night without pain. All this reduced his terrible pain to only brief spells of discomfort just as the Stalevo kicked in. My husband credits this doctor and specialist with saving his life.

However, 10 years into his PD diagnosis, the Stalevo began to lose effectiveness. My husband would lie on the floor in discomfort waiting for the drug to kick in, which was taking longer and longer to be effective. Eventually the Stalevo began to fail him for hours at a time. At least the Gabapentin and nighttime drugs were keeping the worst pain at bay, but he was spending more and more time lying on the floor throughout the day.

We took a chance and tried swapping out some Stalevo doses with Mucuna Pruriens powder (powdered Velvet Bean, a natural source of L-dopa), which we had been drawn to because it is a natural substance, unlike synthetic drugs. Mucuna has been used to treat PD for hundreds of years in places like India, but there was so little information online about how to take it or how much to take. So we just experimented, charting how much he was taking, how soon it became effective and also what foods appeared to interfere with its absorption. Finally we found a dosage (1 tablespoon), timing (once every 3 hours) and diet (mainly vegan) that worked brilliantly for him and we haven't looked back.

That was over two years ago. I can honestly say that since he swapped out all but two doses of Stalevo for 1 tablespoon of pure Mucuna powder (stirred into a little water) taken about 8 times a day, the Mucuna kicks in / switches him fully on in only about 5 or 10 minutes, reliably, effectively and lasts for at least 3 hours per dose, with very little discomfort almost every single time he takes it. No more lying on the floor or sitting in a chair in agony.

He also takes a dose of Mucuna with his two (morning and afternoon) doses of Stalevo. We believe the L-dopa in the Stalevo no longer works for him, but the carbidopa is helping the natural L-dopa in the Mucuna powder get across his blood brain barrier, i.e. the Mucuna is more effective with an occasional dose of carbidopa.

He has reduced the Gabapentin he takes by half, and for now he still takes Pramipexole and half the Amitriptyline at night. He probably no longer needs these last 3 drugs, but he is haunted by memories of the pain he experienced all those years ago and is afraid to experiment with giving them up in case it comes back.

I hope this will give you reassurance that you don't have to live with pain caused by side effects of your synthetic PD drugs, and also that, if / when they lose effectiveness, you can carry on with a natural substance that won't hurt you (in our experience). In fact, Mucuna is said to have neuro-protective qualities as well as providing you with beneficial vitamins and minerals since it is a natural food source. That is why your body absorbs it so readily. If we had known 13 years ago when my husband was diagnosed with PD, what we know now about Mucuna, he would have just taken Mucuna from the start. We are so grateful to have discovered this substance.

However you feel about Mucuna, you should at least insist your neurologist explore changing your medication to relieve you of Sinemet's painful side effects. There is hope.

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Thank you for your reply. What make of macuna do you use and how long has your husband been using it.

How much pramipexole does he take and is it only at night. I worry that it is a dopermine agonist and have heard such bad things a bout them.

How much gabarpentine and amitriptyline does he take at night and does it still keep him pain free and asleep at night.

Does he suffer from any swallow speach digestion problems or is everything sorted by macuna.. I have tried macuna in past but it never gave me much on time .

I take 50g of pregabalin at niight only for sleep and anxiety but it doesn't stop the restless legs I wake with in night and then I get morning dystonia at about 6am. Maybe I should swöp for gabapentin . I can't take large amounts of pregabalin as it makes me spaced out,

I am glad I am not the only one that gets pain from taking Sinemet and you have given me hope I can find a solution.

Connie

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Hello Connie,

My husband has been relying mainly on Mucuna for 2 years and 2 months to date. We have tried many 'brands' of Mucuna and haven't found any significant difference in any of them. They have all been equally effective. So we always search for the cheapest Mucuna powder we can find. We usually find it on eBay and we try to buy 2 to 5 kg at a time to reduce the price as much as we can. We live in the UK and the average price we pay for 1 kg of Mucuna is around £25 (roughly US$35), but I have seen it sold for many times that price.

He only takes one Pramipexole a day and only at bedtime, so he is more likely to sleep through any negative side effects of this dopamine agonist, though he hasn't experienced any of the worst possible side effects in all the years he's been taking it. We think Pramipexole has been the biggest factor in reducing his pain.

He takes only 2 Amitriptyline a day, also at bedtime. This and the Pramipexole make him sleep soundly all night without pain. Before this, he used to spend hours in bed writhing with uncomfortable sometimes painful leg cramps and dystonia.

I must admit that these two drugs taken at bedtime sometimes make him drop off to sleep suddenly during the day if he is reading, watching TV or riding in the car. He has had to give up driving for this reason. I would like to see him try to reduce the amount of Pramipexole and Amitriptyline he is taking, but he is afraid of that terrible pain coming back. So we tolerate the sleepiness.

He takes two Gabapentin with each dose of Stalevo during the day. He used to take 5 Stalevo and 10 Gabapentin per day, but now that he takes Mucuna regularly, he only has 2 Stalevo and 4 Gabapentin per day. He actually experiences more discomfort after taking the Stalevo than he does after taking Mucuna. As I said previously, he only takes Stalevo now for the carbidopa, so it will help the natural L-dopa in the Mucuna cross the blood brain barrier. The synthetic L-dopa in Stalevo is no longer effective and only causes him uncomfortable side effects.

My husband's voice has gotten progressively softer over the years, and when he is 'off' his speech can be a little slurred. He doesn't normally have swallowing problems, but from before his diagnosis to now he occasionally has a spell of Dysphagia, feeling that food is backing up in his esophagus. But it only happens once or twice a year now since taking Mucuna. Before, it used to be about once or twice a month. We have noticed it is most likely to happen when he eats potatoes or rice. I suspect this might not occur if he chewed his food more thoroughly.

He also started drooling a few years ago (before taking Mucuna), but the drooling reduced to only rarely now since taking Mucuna. The Mucuna appears to have reversed some of his symptoms to a degree.

I don't know anything about Pregabalin, we have no experience with it. I'm sorry to hear Mucuna didn't give you much 'on' time. Everyone is different I suppose. How much did you take?

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It's been a few days. are u any better connie?

i am in the exact same ''boat'' as you. my life is hell and i dont know hat to do an dont want to keep on living like this.

write me back please.

cindy

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educate yourself, don't depend on neuro, mucuna prioriens is a natural substitute for your neuro's medication, you just have to avoid taking it with milk. i was oing totake it, but i think i have vascular pd; caused by mini-strokes.

mp, has other supporting compounds that support other processes in your body. been used thousands of years.

i learned, you can't take iron, in supplements, for eg, with levocarb. google it

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Educate myself. I could take a degree in PD I constantly researching it. I have found the more i know the more I don't know . It is so unpredictable. I don't think it's all down to dopermine and I have tried mucuna and have learnt that you have to be wary of what brand you use, one had my heart racing at 150 bpm and I nearly ended up in a&e. And it was the most expensive one. My biggest problem is I have never really felt good taking Sinemet /madaphor but I couldn't tolerate the other meds at all. The side effects have got worse over the years and i would prefer to be on nothing but i have tried to come off it but it has changed my brain makeup so much that my digestive system doesn't work with out it .

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don't know your age, health, etc, but you do know you can';t go by price of item? there is extract of mp 100% or close, concentrate and there is just the milled mp, i'd call it. see greenday's profile, he takes it.

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Will have a look thanks

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Have you thought about trying madopar? It does not contains Carbidopa so it's a different compound from what you are taking.

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I am on Sinemet and have tried madapar

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I'm so sorry.

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One and half years earlier I had screaming pain shooting cramps in my leg. I received epidural steroid injection from orthopedic pain management surgeon. Pain free ever since. Now I can sleep at night.

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