I am suffering like hell with a fierce left arm tremor andmuscle spasm / tightening that turns to severe pain. Will the Sinimet help me or not ? Tried it for a day of two but it knocked me out to sleep and gave me nausea. Experimenting with mucuna but doesn't seem to do much of anything. Desperate.
Tell me the truth: I am suffering like hell... - Cure Parkinson's
Tell me the truth
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Butterflygrandma
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Sinemet works. Gotta start low and go slow. First week half to one tablet daily. Second week a little more etc. Taken without high protein dinner. Mucuna is unpredictable and the quality maybe suspect.
At what point do you know if it is helping ?
3 to 4 weeks your tremors will subside known as being on. I'm 7 years in and take 2 tablets every 3 hrs.
What has your neurologist prescribed?
Nobody can definitively tell you that c/l will work for you. We can only tell you what works for us. I don’t have tremor, but the c/l works for my dystonia. I think on your last post several people suggested that you try taking smaller doses and give it two weeks at least to get used to the meds. Also, try taking it with some crackers or something light. Mucuna is going to make you nauseous if you take a dose that’s big enough to have an effect.
I just took 1\2 pill 100/ 25...this time it didn't make me sick or sleepy but I felt better taking 1/4 tsp of 99 % mucuna powder.
99% l-dopa powder derived from mucuna has as little similarity to mucuna as any pharmaceutical l-dopa product. If I remember correctly, when I took the 99% l-dopa powder 1/32 of a tsp was 100mg (measured on a jeweler’s scale) 1/4 tsp is 800mg, which is quite a hefty dose.
Actually it was 1/8 tsp I used and weighed it to be around 400 mg. I was told by someone that you have to use 4x the amount when there is no carpidopa. Oh my, is this wrong ?
you can take a bit of sinemet and mucuna together to help the mucuna be able to be utilised better.
I did that once and it was a bad experience..sweats, nausea and knocked me out for 3 or 4 hours
It was too much then. Start low and slowly over weeks increase .
** ah, saw your response above. You need the pure plain mucuna powder which is quite weak not the 99 % levodopa which is pretty much the same as the meds.
Or try NOW mucuna which is capsules with 15% levodopa. 1/4 tsp 99% is maybe 1000mg or more of levodopa so taken with the sinemet might be the equivalent of taking 4 pills I think.
When were you diagnosed? Do you have a consultant neurologist responsible for your care? If not, you need one, who can advise and manage your medication.
If you are not already taking Sinemet, you may very well get symptomatic relief with the drug, but which strength you need and how frequently should be decided by your neurologist.
Although not every Parkinson’s patient in the U.K. has a Parkinson’s nurse in their area, you should check with your GP surgery to see if there is one available. These specialist nurses are often the best people to consult and may be more accessible that your neurologist.
EDIT:
which strength you need and how frequently should be decided by you in consultation with your neurologist.
I find it very helpful to keep detailed notes of my symptoms during the time since the last consultation. My MDS neurologist then uses the information to adjust the meds at the next appointment. The notes on symptoms should include the non-motor ones such as urinary urgency, constipation, hallucinations plus others which would not be evident during the doctor's examination.
I take sinemet and it helps with dystonia in my mouth - I was originally prescribed it for tremor - it has helped with both - I agree you need to discuss with a movement disorder specialist - it’s very complex and very individual
My wife takes sinemet (1-1/2 pills, 4x day). It reduces her tremors by about 75%. She was nauseous the first 2-4 weeks when she started it 5 years ago
I wake up in the morning shaking , sweating and in pain ..plus full of anxiety from the symptoms...does that mean I would need to take Sinemet during the night too ? I just can't handle this
I have been diagnosed with PD 20 years ago and experience a lot of pain from muscle cramping and aching because of shaking /tremor and body distortion. Here is reality, it is complicated and a long journey. Every one with PD does not have all the symptoms and do not have the same severity in symptums.
If you have Parkinson's then Levodopa / Carbadopa ( Sinimet) will help. The final test to determine if you have PD is that L/C helps. If it does not than you do not have PD but something else instead.
Many neurologists will tell you that there is no pain with PD, it says so in their text books. Motion Disorder Specalists look after several diseaces and their group seem to be strong believers in the no pain theory. Many people with PD and pain report their exasperation in trying too find help.
There is a lot more Neurologists coming to the realization that PD effects the whole body and does indeed cause pain. These neuroligists and many family General Practitioners realize now that many non- motor functions are also affected. My Gen Practitioner (MD) and I believe that the integrity of the signals from my brain to my back muscles and information from my muscles to my brain is causing by body to resist falling over frontwards when I am actually falling backwards which causes all my back muscles to cramp.
I take 2 strong L/C tablets 8 times a day along with other meds and while my Neuro does not believe in PD with pain my GP does . Any time that I miss or am very late taking my meds. the cramping and pain gets worse, much worse.
I should also point out that the body has many muscles both internal involuntary and external muscles and all are affected to some degree . Constipation , dry eyes and blurred vision , sleeping , voice , sense of smell , and on and on. It took a very long time to get used to the meds LC and others , start small and slow and stay in contact with your doctors.
I have discontinued my association with 3 Neuros and I am looking for my fourth. The last one has thousands of patients and will not miss me and the previous one before was a Motion specialist who liked to talk but would not listen.
I have not seen a Monarch Butterfly yet this summer . I planted milkweed along the abandoned railway trail last year, but nothing.
Through it all remember:
Happiness is a state of mind , you can be happy if you have a mind to.
PS: I am in Canada so I use CBD cream ( Canibus ) and Extra strength Voltaren cream on muscles and CBD gummies and Tylenol xs by mouth and A535 Arthritus roll-on on knees and elbows and finger joints and I am going to try some home made , home grown cream.
Muscle relaxants do not seem to work much and when I wake up with my legs fully cramped I take 2 LC and wait 15 minutes.
If dystonia is the source of the pain tell them dystonia and they will understand that.
Here is a good explanation of dystonia . Parkbear is correct. It is often called a symptom of PD but it also stands alone. Complicated, but then Park_bear is smarter than your average bear.
Hi Gymsack,
Where are you in Canada? Your story sounds so familiar. I have only been diagnosed for 9 years but my experience with neurologists is the same as yours. Your journey with pain and symptoms is my experience as well. I am not going back to the neurologist that I saw yesterday. It has taken me a month to fix his mistakes with every one of my prescriptions. The biggest stumbler was the one I got him to give me for pain.
Anyway, your story is familiar.
Cheers
Hi, What strength L/C do you consider strong ? I'm taking 1 10/100 C/L 7-8 times a day.
How do you plan your meals around all those doses ?
plan ? We eat small meals when we are hungry and most of the protein at dinner in the evening . We snack on raw carrots , celery , radish , and fruit . A lot of watermellon this time of year and berries ,apples and grapes . If we go out I take my meds before we go and we are usually back in a couple hours. I am 75 my wife 73 and we are retired. Except for family parties we dont have a busy social life. nice and quiet.
I combine breakfast with lunch since I start my day late..eat very lightly till dinner. Tonight I took meds at 5:30, ate a salmon dinner at 7:15 -7:30, and took next meds at 9.
Mr. sack,
"If you have Parkinson's then Levodopa / Carbadopa ( Sinimet) will help. The final test to determine if you have PD is that L/C helps. If it does not than you do not have PD but something else instead."
Sinemet does nothing for me and I have PD.
Mr. Anderson MBA
mmmmmm I always kinda thought that maybe you have something else. look into that. The diagnosis of PD is frot with error and many are diagnosed as having something else as their symptoms and conditions change. I had a friend and all the doctors said PD until one said otherwise.
No such luck.
The head of neurology at the U of MN, 2 neurologists at the Mpls VA, a neurologist at Wexner in Columbus, Ohio and the neurologists in Solothurn, Switzerland all agree I have PD.
Hello MB ~ Do you still take sinimet?
It doesn’t seem to help my HwP either. His new neuro recently doubled his 25/100 to 6/day. No changes, and there is no change if he misses a dose!! What has helped is Levela & CBD.
Unfortunately, when we see this neuro again she will think the double of c/l is helping. I guess that will be good since she will, hopefully, not pile on more meds.
Thank you ~
"Do you still take sinimet?" No.
I've experimented about once/year taking it for a couple months at a time. I haven't tried for about a year.
I'm about to start again to see if it helps with speech and gait initiation. I'm losing my voice.
How does your neurologist deal with that? The one we have now is our 3rd so I don’t want to rock the boat. She doesn’t care what supplements he takes, but I gather that she is super into Perscriptions, as I guess they all are. Too bad.
One more thing, do you take a mucuna/dopamine supplement “instead”?
No, I don't take any form of levodopa. I am on my own -- to rely on diet, exercise, lifestyle, & supplements.
My neurologist at the Mpls VA discuses and defers to my choices.
We, also do a lot on our own. Seems that is how one gets the best care!!!
We also rely on diet & exercise & now I give my HwP a short daily massage. I don’t know what it does for him since I don’t have PD, but it seems to give him some sort of relief.
Thank you for sharing with me and answering my questions!!
Have a fabulous day & week!!
Have you ever experienced off time ?
What is levela ?
Hello ~Lavela WS 1265 is an English lavender supplement.
What does it help with ?
It helps with tremor and anxiety. An NP that he saw a few times recommended it. We found that it takes a bit of time to see results and he needs to take one pill twice a day.
Same with my husband but I have no faith in his specialists.
His genetics says he has a fast dopamine beta hydroxylase which I take to mean he burns through dopamine pills and his own dopamine very fast. Which is what it appears happens too. He has been helped by taking 1/2 entacapone with each dose which is a COMT inhibitor. He doesn’t have a problematic COMT from the test, but I think slowing it might help compensate for the other pathway that breaks down the dopamine which is running too fast. I’m no expert but this theory seems to fit with what we observe with him. He is only taking 1/2 entacapone with the first 3 doses earlier in the day as I believe he starts manufacturing his own natural dopamine later in the day so doesn’t need as much medication then.
You sound pretty expert to me.
I think she is and very thoughtful and generous with her knowledge.
Thanks. I’m learning more each day from knowledgable people on this site and trial and error.
learning more all the time🙂
LAJ, my doctor said the opposite of yours. After a good night sleep there's good amount of natural dopamine production that makes mornings better. This is called the sleep benefit.
Levodopa tends to stack up during the day so you are right about needing less in the evening. If managed properly, this knowledge should lead to a bell curve approach to medication management with the peak towards the middle of the day
With greater C/L need during the day, nighttime production is likely to be less relevant. Now that I only need 20% of my original medication, the nighttime dopamine production turns out to be sufficient up to approx. 10.30 in the morning, while before that it was 7.30 am.
You have the sleep benefit because the dopamine level builds up over night to a peak around midnightish and to a low at mid day so it is still high when you wake.If you are on meds the first dose of the day is overlayed on the decreasing tail of the natural levels so you need more in the morning as you naturally drop off to a minimum otherwise.
Then subsequent doses overlay on the tail of previous doses of the day.
As the evening comes you have multiple tails overlayed and then the natural levels are rising again. So you need less meds late in the day as you may be overloaded otherwise, causing sundowning, anxiety, restless legs,
Likewise. I have got all the classical symptoms of Parkinson. Was diagnosed by 3 neurologists. Started wilt pramipexole which was a disaster.?Madopar did nothing. I took 3 dispersable madopars in front of the nurse without the slightest effect .So please stop saying if sinmet/ madopar don’t work you don’t have Parkinson.
There is a reliable product for Mucuna. MacuDopa.com
i too use a reliable source of mucuna: naturebell brand 30% certified Ldopa. I’m experimenting with adding carbidopa. Mucuna works on its own for me and adding carbidopa has definitely increased its effectiveness. Too much will make me nauseous. It’s a fine line between minimum effective dose and nausea at first
Take ginger powder alongside sinemet to avoid nausea
I had the same problem when first dxed 15 years ago and it took time on the sinemet and doing other things before it was better. Researching online what would help me brought me to some beneficial therapies, one which was cannabis. It wa amazing for me, it’s calmed everything right down. I take it in gummy form or oil and I realize that all of us PWPs are different in our symptoms and reactions are to things but this worked for me. Talk to your doctor about it and research it for yourself.
Mucuna does work and my HWP has been using it for 10 years at least and he has had PD 30 years. He uses half teaspoon along with his c/l. We buy from Natures Root in Uk, 100% Organic Mucuna Powder. If he doesn't take it with his Sinemet he can tell a difference.
What dose of C/L and how many my of mucuna ?
Remember 100% natural mucuna is a small amount of levodopa. So don’t take 1/2 tsp of yours 🙂
Two 25/100 Sinemet Plus and half teaspoon of Mucuna in juice. I have a proper measure. Don't forget he has had PD 30 years so he needs more medication but you could practice with the Mucuna. A lot of people take it now.
hi sounds like you are experiencing what I am too in regards to pain. After 7 years of PD, with some pain in left leg but not too bad, I suddenly over night developed intense pain in shoulders & down my arm. I have gone from 3 ssenimet to 5 or 6 but nothing seems to help. Any thing anyone can help us would be great ..thankyou
What kind of pain? Is it dystonia?
Arm pain feels like nerves have shortened up so its painful to extend arm to pick things up . Shoulder pain like very aching muscles bit of heat helps but just gets you down as its constantly there
Sinemet should help
Nothing will stop my complete leg from being one giant screaming cramp except CD/LD and it takes about 20 minutes but this total cramp only occurs when I have slept in and missed a dose of CD/LD every 3 hours. After the cramp has stopped I then use Cannabis salve to reduce the lingering pain.
Sinemet (CD/LD ) (Carbidopa /Levodopa) at the start of use is strong and takes a bit of getting used to , start small and gradually and only what you need each day. I strongly suggest that you have a discussion with your Neurologist and take the dose that he recommends every day. You will probably notice other benefits effects also that you did not realize where being caused by the PD.
Better sleep, less aching, less shake and weakness and easier walking less grumpy easy swallowing.
good luck , be happy
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