My husband was diagnosed about 7 years ago. we delayed medication (trying endless supplements and life changes) as long as we could but a couple of years ago tried c/l he did not have any success and it made him nauseous ... tried Rytary about 6 months ago and since has been having depression and anxiety. tried to add zoloft to the mix and boy he was a mess.... currently stopped all medication and his mental health is better. not great but at least we are not in crisis mode. going to try to start low dosage c/l again and doctor recommended adding gocovri. looks like side effects of gocovri are not great. Any advice on what people do when the "gold standard" c/l doesn't work?
parkinsons meds not working: My husband was... - Cure Parkinson's
parkinsons meds not working
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LearningAllICan
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The "Gold Standard" simply doesn't work on everyone. I'm one.
I get by OK without it.
What do you use?
Nothing.
Not to worry, tho. PD drugs aren't used by a fair number.
The upside of PD drugs not working for you is that it forces you to work harder with what is available, that is, exercise, diet/supplements, life style choices, i. e., sleep hygiene, etc, which may do something PD drugs don't - slow down the progression.
I would suggest you retry them every 6 months, or so, for a few weeks at a time. Things change.
Do you know this therapy? b1parkinsons.org
sinemet took a while to work for me. They start off on a really low dose. It wasn’t until we doubled the dose that it worked. When it’s working well I feel almost normal
At first I would go with the easiest and simplest medication route. I would try Sinemet again, not in immediate release but continued release. It does not make you nauseous.
I take a very low dose of sinemet cr. Yes, I break the 25/100 in half. It barely helps but my head does not feel right. Every time I take a whole one I feel paralyzed and stiff and feel ill. I wish it worked because I would love to feel normal. My dr added ropinerole at a low dose and I think it improved my energy level. Gocovri never did much and I stopped it. I hope he finds something that helps. Everyone seems to have different reactions.
"a couple of years ago tried c/l he did not have any success and it made him nauseous"
Can you remember what dosage he started on? Perhaps he is one of those people who require a very slow introduction to Sinemet/Madopar.
My neurologist starts new patients on the Madopar 100/25 tablet according to the following schedule:
--------------Breakfast Lunch Dinner
1st week: quarter quarter quarter (after meals)
2nd week: half half half (after meals)
3rd week: full full full (after meals)
4th week: full full full (half hour before meals)
5th week etc: (same as 4th week)
If at any stage in this process the symptoms disappear, you stay at that dosage. If at any stage in the process significant side effects are experienced, you drop back to the previous dosage and remain there (and contact the neuro).
He started very slow. Half a 25/100 3x day. Slowly up to 3 tablets / 3x daily. Never noticed any changes. He’s right arm, hand tremor is very bad. No real change with medication. We are gonna try again and add that extended release amantadine. Starting very slowly. Similar to what you wrote.
All the PD meds have side effects, my HWP doesn’t take too much notice of the written list, but tries the meds offered to se how they effect him.
He was started on a very low dose of C/L 9 years ago, and still takes low doses. Too much gives dyskinesia and too little makes him too slow. Gocovri is a slow release Amantadine which is a very mild dopamine agonist. My husband has been taking 2 Amantadine daily and hasn’t had side effects unless he takes more than that.
Advice from above to go very slowly is maybe the way to try, only adding in higher doses when the body has got used to it. Rytary has an added ingredient to make it last longer, it’s not available in the U.K. so not experienced that one.
I am in the process of gradually weening my WWP off C/L and replacing this with Mucuna as she seems to have developed dementia. As PD medication is known to be toxic and cause dementia-like side effects (amongst other side effects) this could be the reason. Mucuna has been reported to be better tolerated and more effective than C/L. Has anyone been successful in trying this?
"As PD medication is known to be toxic and cause dementia-like side effects (amongst other side effects)"
Funny ,I have never heard that in my 20 years plus with Parkinsons
please give me a link to the source of that information
thanks
The opposite seems to be the case. Research suggest that treatment with levodopa can prevent a decline in cognitive function in PD.
ncbi.nlm.nih.gov/pmc/articl...
Hi Esperanto,
Thanks for the link you sent but this is not a very high number of participants that took part in this trial and cannot be fully relied on. On the other hand, if one googles "Carbidopa & Levodopa Side Effects" you will see a number of websites, including the Mayo Clinic, WebMD, etc. that list the side effects that can be caused by C/L. These include hallucinations, confusion, psychosis, delirium all of which can be mistaken for dementia and many other side effects which indirectly could affect the mind.
As it has been reported that Mucuna is better tolerated, acts quicker and lasts longer, not to mention that it has been used for hundreds of years without severe side effects been reported, this could be a solution worth considering.
questions: 1,) have you seen. Movement disorder specialist? MDS. 2) w hat is his exercise regimen? 3) what does he eat/ not eat? These factors can make a huge difference!
Yes. His neurologist is a movement specialist. We have been to see a couple. Both highly recommend deep brain stimulation and he is not interested at all in this option. He works out almost daily and always has. He has terribly dystonia in his toes so he cannot run. This piece is killing him as he’s a runner. And he can’t run. Very sad. It’s hard to walk as well. It’s such an awful disease. He eats healthy and always ate protein away from c/l.
Interesting. Sounds like a model pd patient! I also have curling toes. Just had Botox shot in my bad foot which is supposed to relax the muscles of the toes. So far it is helping! We will see… I’m going to ask her to do the other foot . Be aware that two shots are involved. One in shin and one in bottom of foot. The second shot is painful but the pain ends quickly. Alibis suggest looking at the FOK Forks Over Knives plant based diet. It has saved my life. Additionally my doctor requires 1 cup of blueberries and 6 cups of green leafy veggies daily . I feel much better when following this diet and much worse when I cheat.
soooo interesting as my husband got botox years ago upon my insisting - doctor was not thrilled about doing it. he only put the shots in his foot. no shin, I strive for a vegetarian diet but it's hard for him. His response is all the things he reads about how good carnivore diets can be.... lol it's a hard call. I put greens and wild blueberries in a smoothie - I think i will start doing it more often... it's usually just a couple times a week.
Just one last thought . Watch to movie on prime with him called forks over knives!
Try Mucuna Puriens
Do you have a brand or recommendation ? We looked into this years ago. I think I got a powder form but not sure how much to take.
I take one scoop of powder, as a supplement, when needed - so I don't increase my dose of C/L. Any brand from a reputable health food store is fine
my husband takes mucuna powder twice daily, morning and evening mixed with a little yoghurt. The brand we use is Indigo Herbs in the UK. We used to use Atremo plus but that company stopped shipping to UK (was also very expensive)
Hi, try putting in daily exercises like walking the more you are able to do the better. Aiming for 10000 steps per day....really really helps
He tries. Walking is tough due to dystonia.
I had a horrible time with side effects of C/L when I first started. Two very cold neurologists told me that it was all they were willing to do for me and I'd basically just have to deal with it. I had extreme headaches, nausea, vomiting and diarrhea. My new neurologist saved the day by adding in 1 strraight carbidopa pill as it is a buffer for your intestinal tract. It made all the dfference in the world and stopped all the side effects I was experiencing. After about 6-8 months I was able to wean off the straight carbidopa. I currently take 1.5 C/L 3xday. I still have sleep issues (not getting enough), but I'm working on it. I hope that helps.
I remember we were gonna try that but decided on the Rytary. Mmmm. Might need to revisit that idea
i am curious, did your husband have a DAT scan? This test basically proves that one does in fact, have PD and NOT Parkinsonism. I have heard that that may be why CL doesn't work. Hope you and he can find some help either way.
Note: PD is a form of Parkinsonism.
I thought they were different. On another PD support group, I have heard that some people whom CL did nothing for, had been misdiagnosed and though the symptoms were similar, it was not a lack of dopamine that had caused their Parkinsonism symptoms.
No DAT scan and while he questions whether or not he has PD. Is it quite obvious that he has it. Right arm/hand Tremor, loss of arm swing, slowness of movement. Rigidity. …. I’m starting to see the lack of facial expressions - I can see it in pictures. Starting a left leg tremor which scares me.
So sorry to hear. I was diagnosed two years ago. Fortunately, I'm able to take CL. Has he tried Mucana? It helps my dad who also has PD
so years ago upon first diagnosis, I was under the impression that he would get the same side effects as taking c/l which we were trying to avoid so we did not do mucuna but i am going to revisit it. thank you
I see statements like that about DAT scan but I have been told by my neurologist in Canada that the test is untrustworthy and he does not use it and that you would be hard pressed to find a Neuro/ movement disorder spec, in Canada that would prescribe it. Amazing how the same test is regarded so differently in different countries.
Agreed. I had the test done and it was positive. CL works well for me so far.
This post could have.been.written.by me I'm 8years since diagnosed and on no PD meds left side dominated tremors leg and arm and jaw nuro says I'm a quandary says he's 95% sure it's PD I've tried most med.but the side effects were.worse than the tremors they were suppose to help,most lowered my BP dangerously. I'm at the.point.im afraid to try again. I fast walk eat right it's slow to progress but is progressing. Symptoms all on left side. Hope you find something that works for you. I'm at the point I may try again sometime.
would you mind being more specific with what you do to “eat right “? My husband was recently diagnosed with PD, so I’ve been doing a lot of research to figure out the best foods for him to eat. There’s so much conflicting information anb what causes inflammation that might aggravate PD, especially on dairy, whole grains, legumes, meat. I’m in a quandary!
Oh gosh. Good luck to you. Prayers
i had nausea in the beginning but eventually eased off
What about trying rasagiline, or mirapex? if your nuero hasn't presented these as options you need a different Dr,
yup. It’s been suggested. So worried about side effects and now more than ever since he’s had some anxiety and panic attacks.
I think the rasagaline is fairly innocuous, but yeah would need to watch out for the compulsion to become a compulsive gambler or stripper on mirapex 
Has he tried propranolol for anxiety? I take it as needed for anxiety, stress or caffeine related tremors.
he has propranolol doens't help much.... interesting you you have caffeine related tremors? are you sure it's the caffeine? I read good and bad about it...
Unfortunately, what works for some doesn’t for others, so it turns out to be somewhat of a trial and error situation. I have been lucky because the c/l works for me. I have learned that adding carbidopa can help with the nausea. I also discovered that the extended release works best on me and I need one right before I go to sleep for better sleep. Good sleep hygiene has been super helpful to me. Protein totally counteracts with the l/c so I intermittent fast and try only to have protein for dinner at around 6 and no pills 2 hours before or after. I have also heard one of the biggest problems is under medicating, so finding the dose for each of us individually at the stage we are at and the tolerability is important. I also take gabapentin which is like lyrica. Helps with pain, numbness, tingling and may have a bit of mood leveling component. Lastly, get at whatever exercise that works personally. I have 10 years experience with PD since diagnosis.
So interesting …. I’m gonna look up the gabapemtin as he has tingling, pain and numbness as well. Thank you !
I eat a THC gummy in the evening and it helps tremendously with my symptoms so that I can relax. The one I take is 25 mg CBD/ 5 mg THC.
We need to find the right dose that works. Does it help you sleep ?
Yes! I sleep so well . Remember that it takes a while to work. Usually it hits me in about an hour to an hour and a half after taking it.
My husband also has the 2 mg Neupro patch ( Rotigotine ) added in a year ago to help restless legs, and dystonia alongside his low dose C/L.
It definitely makes a difference, as the pharmacist made an error on his supply a few weeks ago and he went 6 days without it! We both noticed the difference in symptom relief.
It might also be one to start on as it bypasses the stomach as it is ingested through the skin. You could try a low dose and see how it goes. My husband has not had any compulsive disorders through it.
so neuropatch gave him anxiety as well.... tried this before c/l
I have had PD since 1992 and nothing worked for me. My late wife persuaded me to join her in doing FAST WALKING, which I did and within two years of doing fast walking, every second day, for one hour, I became PD symptom-free.
I travelled all lover the English-speaking world and demonstrated the walking to everybody and there was nobody who was unable to do it.
Hundreds, if not thousands of PD patients do this now and it works!
I have followed you through the years. My husband struggles with walking - particularly fast walking - as dystonia kicks in and his toes curl making him stop in his tracks. How are you feeling these days ?
Has he tried binding the toes with a hard thin surface material? That would prevent them from curling up.!
Yup. Nothing we have tried has stopped it from curling. We have tried lots of things. Including listening to music. Different frequencies. Tape, toe separators , different sneakers. It seems that as soon has the walk turns into a “walk with a purpose” it curls immediately. Sometimes walking backwards stops it but that seems to no longer be the case.
has he tried Botox? My friend's sister has had some relief for that in her feet.
Yes. With little success. I want to try again
So sorry. PD sucks.
I think I would tape my toes down, when I walk, if I had that problem!
I had no symptomatic improvements only got sick and sleepy from C.L.. I. was tested and treated for H-pylori and tried CL again and I got back 90% of my life
How were you treated ?
Actually it takes several weeks or even the months to feel the full effect of C/L . I had to start several times over and over till it started to work for meSo try to stick on it, and you will be surprised how much your symptoms will be relieved...
Hi, I wouldn't give up on the c/l just yet, from my personal experience. Regular exercise, keto diet and a very serious sleep schedule with nicotine gum gave my husband some relief. The anti depressant route seems to be pushed a lot, because PD patients "look" down but are not necessarily depressed or could just be "off".
thank you for your comment. He is for sure depressed and filled with anxiety. He stopped all medication and is feeling better. It will only be a matter of time before we reintroduce some medication again. It won’t be anti depressants though. They did not help him at all. They scare me.
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