I was diagnosed in April of this year. I have a dominant left arm/ hand tremor , tingling/ numbness and slight tremor in left foot, neuropathic pain, severe anxiety, lack of sleep, weak and wobbly at times and feel isolated . My husband is good but he needs time away from me so I am alone a few hours a day. I have tried to take C/L ( Sinimet) but I get so nauseous and sleepy. Also tried mucuna capsules but it didn't do anything. I feel hopeless and would rather die. I tried taking 3 capsules of mucuna and about a quarter of a Sinimet pill ( 100/25) and that was even worse than the Sinimet pill alone....severe nausea and falling asleep. I am due to see a neurologist on the 15th.
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Thanks. I can't seem to take B6. I think it makes my symptoms worse. I do take B12 and B1 Benfotamine ( but only 100 - 200 mg / day ). I will look into the Berberine.
600 mg Alpha Lipoic Acid 1x per day. ( U can get Walmart, Amazon etc.) I just started taking it. My sister has been taking 3 mos now, A1C was at 5.7, now is 5.1.
Try taking your Sinemet (C/L) with meals. This may slow absorption but you may find that you are not nauseous.
You may try DopaBoost, a rather effective Mucuna supplement. Each capsule contains about 100 mg of Levodopa, so regard it as a one to one replacement for your Sinemet (100/25) capsule.
I can also suggest supplements to address “neuropathic pain, severe anxiety, lack of sleep”, but you can use the search to find suggestions with detailed testimony and references.
Hope the neurologist visit on the 15th next is of help. Hang in there many here have encountered similar problems and have learnt how best to manage them.
Give me a shout in the chat if you need to reach out on a one to one basis 🌺
At onset she took the neurologist recommended three doses per day of Sinemet (25/100) which I now think was too much and may have also contributed to the nausea.
Dose schedule at start (was employed and had a long commute)
[5:30 AM] 1 Sinemet / Vitamin C & Quercetin
[12 Noon] 1 Sinemet / Vitamin C & Quercetin
[5:30 PM] 1 Sinemet / Vitamin C & Quercetin
Currently retired and the times are more flexible as the wake time is a little later. But the pattern remains and one more Sinemet was added a year ago.
Current schedule
[Dose 1] 1 and half Sinemet / Vitamin C & Quercetin
[Dose 2] 1 Sinemet / Vitamin C & Quercetin
[Dose 3] 1 and half Sinemet / Vitamin C & Quercetin
When DopaBoost is used it goes in on Dose 2. Here the Vitamin C / Quercertin combo is left out and Resveratrol is used instead.
Carbidopa destroys B6, so at night she use 100mg (B6 -P5P) with 200mg Magnesium Glycinate.
“Carbidopa destroys B6, so at night she use 100mg (B6 -P5P) with 200mg Magnesium Glycinate”. Given the neuropathic pain present, a warning. Dopaboost probably already meets the daily PD extra need for B6 with 2.5 mg per pill although that will vary from person to person. In that case, it seems unnecessary and even risky to take another 100 mg of B6 at night. Remember that B6 also causes the breakdown of carbidopa. This puts you in a vicious circle that provides a drug tolerance, so you need ever higher doses of C/L.
Thanks very much! But she has been on this for over three years, once we began to use Sinemet extensively. (No insurance refunds for DopaBoost).
We all have different machinery, so I do understand that that amount of B6 will not work for you.
My understanding is that Carbidopa inhibits aromatic-L-amino-acid decarboxylase (DOPA decarboxylase or DDC), an enzyme important in the biosynthesis of L-tryptophan to serotonin and in the biosynthesis of L-DOPA to dopamine (DA).
So I think it imperative that this enzyme functions to process Serotonin, that is why I supplement so heavily. Try to match 1 to 1. 75mg Carbidopa to 75mg B6.. And this is outside the Sinemet window. There is a little over at times.
I do switch out from time to time. Using a B Complex at present with 50mg B6. No B6 at night when this appears in the daily stack.
I am sensitive to B6. It seemed to make my symptoms worse so I stopped talking it. Wouldn't a teaspoon of nutritional yeast take care of all the B vitamins?
Some of us can take a boatload of supplements and it seems some of us cannot. We have to listen to our bodies.
And in some instances it may be the quality of the supplements rather than quantity that causes the trouble. And if such is the case go for high quality brands.
But Magnesium and B6 are important for us all, and Parkies in particular.
In the final analysis take the quantity that does no harm. Link here to 7 Surprising Benefits of Taking Magnesium with Vitamin B6
Recent work on the entire question of serotonin. This debate has been brewing for a couple of years and lately a number of researches, based on some work they've been doing, are asserting that more and more there are serious questions about modifying serotonin. I think anyone should read this for a start.
You're welcome. As you may have noticed, I am more of the adage, enough is enough. With the unpredictable additional need for B6 in PB, between 2 mg through a teaspoon of yeast or 75 mg as the equivalent of the same amount of carbidopa (Method Park_bear) is a world of difference. After age 50, the recommended daily amount is 1.5 milligrams for women and 1.7 milligrams for men, which you get through a normal diet. You can only find out what suits you by getting your B6 level tested from time to time. Just do it! If you don't, at least make sure you're taking the active B6 form P5P. This is not the case with most B- complexes and multivitamins… 🍀
Dopaboost is a Great suggestion but it’s 2capsules that equals 100 mg. Not so! Please check the Supplement Facts. One capsule contains 127.5 mg of Levodopa. 🌹
Did you try taking half a pill? also, how much l-dopa in the mucuna capsules that you took? Three capsules is a lot and the quarter tablet of c/l p probably did not have enough carbidopa to eliminate the nausea. Mucuna should work the same as c/l. It sounds like your anxiety and depression are overwhelming you. I have more to say but this is the fourth one time I have attempted to write this reply.
Thanks. The mucuna capsules are 400 mg. 15% standardized which is 60 mg L Dopa. I was told by someone that this only equals one quarter of a 100/ 25 sinimet pill .This person told me to take 4 capsules but I took 3 instead..it's a good thing considering the reaction I had.
start with on c/l sinemet with one mucupa capsule and if you can tolerate it then add another capsule.
Also, try to focus on your anxiety, try to meditate (headscpace has good videos for starters in Netflix) , also seeing a psychologist helped me a lot. It is a big shock to get the news, but for me anxiety made it all way worse at the beginning. After getting it in control, now I feel much better.
Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug, is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2024. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.
According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.
South Korean researchers have learned how to dial our cells back to stem cell stage -- and are now administering monkey stem cells to parts of their brains that are short on dopamine producing cells -- with the hope they will fill in and take over the job.
Started this before with stem cells from other monkeys and had some success I think until local immune systems attacked foreign cells.
I'm still fairly new, couple years in. I've also struggled with the medications, including C/L totally disrupted my sleep patterns and created symptoms.
There are other medication options. A much broader array than there used to be. My doctor suggested neupro patches and they're working for me. But it took a while to regain stability. Sleep makes such a difference. And sleep is what got totally turned inside out.
So if you can hang in there. Try to figure out the patterns and fixes, you should reach a better plateau point.
If you're taking rasagiline, It's important for most people to take it in the morning. It can disrupt sleep. Even if it's not evident that it's going to.
Take it easy my dear...PD is not the best diagnosis to have but it's not the end of the world,;)..There is many ways how you can manage your symptoms and your obvious anxiety is making it really worse..For meds takes time to start working , your body needs to get used to it... Accept your diagnosis as something you have to live with and learn new things from it.Increase your magnesium intake,it should help...
you might just be taking too much levodopa at once . Try taking 1/2 a 50/12,5 sinemet tablet instead of the 100/25 and take one mucuna with it, about 3- 31/2 hours apart. Then increase slowly if it doesn’t seem enough
I’m so sorry that you are going through this We’ve all gone through it and it’s miserable.
My advice would be to get a good Movement Disprder specialist EXCERCISE(it’s the only thing that we know can slow down ) take a deep breath and live as best as possible for as long as you can!!
HI. DON'T GIVE UP. YOU'RE EXPERIENCING SYMPTOMS FELT INITIALLY BY MANY PWP (PEOPLE WITH PARKINSONS). IT'S QUITE NORMAL. THE WAY TO GO, I BELIEVE,IS TO FIGHT THE ILLNESS ALL THE WAY AND TO READ EVERYTHING YOU CAN ABOUT PARKINSONS. I PERSONALLY TAKE MANY VITAMINS AND SUBSCRIBE TO THE HIGH DOSE THIAMIN PROTOCOL. I FIND IT HELPS ENORMOUSLY. REMEMBER YOU ARE NOT ALONE AND THERE ARE LOTS OF GOOD FORUMS OUT THERE WITH LOTS OF ADVICE. SOME THINGS WORK FOR SOME BUT NOT FOR OTHERS. REMEMBER CO CARELDOPA (SINEMET IS A BRAND NAME FOR COCARELDOPA) DOES NOT WORK FOR AT LEAST 2% OF PWP BUT THERE ARE ALTERNATIVES AND THERE IS AT LAST SOME PROMISING RESEARCH HEADING IN THE RIGHT DIRECTION. MY ADVICE IS TO JOIN A LOCAL PARKINSONS GROUP, EAT CORRECTLY, TAKE PLENTY OF VITAMINS C AND D3 LOOK AT OTHER RELEVANT VITAMINS AND EXERCISE REGULARLY. AS YOU CAN READ ON THIS SITE THE GUT AND BRAIN ARE VERY STRONGLY CONNECTED. CONCENTRATE ON CHANGING LIFELONG HABITS AND CHANGING YOUR BRAIN PATTERNS. IT CAN BE DONE!! GOOD LUCK AND REMEMBER: FIGHT FIGHT FIGHT THE ILLNESS IT'S NOT UNBEATABLE.
Danasr’s advice is the best. A good movement disorder specialist will help a lot. I bet all the advice so far, although well meant, is making your head spin. If there is an exercise group near you, join it. C/L made me very sick for a while until my doctor-daughter gave me Domperidon. That helped. Keep smiling. It seems awful right now, but honestly it isn’t the end of the world and you have lots of good life ahead. Put some music on with a good beat and dance. There are loads of free videos on YouTube. Try Reps to the Rhythm. PD Warrior helped me as well.
Welcome! As you can see plenty of advice from this club! 🙂 Let me add something to that. My alarm bells ring when I see the combination of neuropathic pain and PD. Many doctors do not make that link and as I have already informed you in a response to another post, an imbalance in your B6 level may be a cause and perhaps also for the problems with the Sinemet. Given your dietary supplementation with yeast, I don't expect a deficiency, but rather an overdose. Worth checking this out? 🍀
So sorry to read your story, but there may be solutions to help with the nausea, which my wife experiences too.
Ask your medics about Omeprazole, which can be taken twice a day.
You may also find that Famotidine may help with the nausea. Again, your GP should be able to advise you about that.
I would question the advice someone has given you about taking Sinemet with food, because this is most likely to block its efficacy, which is the last thing you need. If you are fortunate enough to have access to a Parkinson’s nurse, they should be able to advise you about this and your nausea issues.
Good luck! There are solutions, which may not be perfect, but which can make life more tolerable and allow you to enjoy the things that make you happy.
Try some ginger capsules for nausea. Very effective and even available to buy on cruise ships. Can make a ginger tea or use fresh ginger in whatever manner you prefer.
Hello, I know exactly how you feel. But I’ve found that focusing only on meds makes you way worse mentally and physically. Your emotions is way more powerful.
Gratitude for the millions of great things you have in your life. Forcing yourself to see the magic in everything. Being with those you love, doing things you love, eating and drinking in a way that makes you feel whole. Get into reading and doing things that bring a smile to your face. Remember, we are only energy, so the higher your vibrational level is the less illness you will have. It’s a journey but you can make it beautiful even with the bumps: loads of love and best wishes, Colin
Poor you! I'm a newbie as well and have trodden the same path as you. You must not give in. Do try and find some help. Your symptoms can be treated. Hopefully your Neurologist is switched on. I've just started the Thiamine/Vitamine B1 protocol and it seems to be helping. Look up Daphne Bryan's YouTube Video. It's very motivational and it certainly helped me. The first goal is to find a way to be positive. The rest will follow. Good luck,
Lots of good advice here. The anxiety is the worst symptom especially after receiving the diagnoses. Give yourself time to navigate and learn. The anxiety makes the symptoms worse. They will calm down when you can find the space to do that yourself. Nausea is very common and can take up to a month or more to feel the benefits of sinemet without the nausea. Start slower... and take with crackers or bread... Vit C as mentioned is good if tolerated. Hang onto the the positivity in this group and find the strength to do your best. Wishing you well...
first of all are you seeing a movement disorder specialist? If not that is a must! They will get your meds right. It appears you’re a grandma Aren’t they worth living for? My grandchildren motivate me. Try yoga to relax. This is your only life. Enjoy it best you can!
My neurologist started me on Azilect in the beginning which helped quite a bit with stiffness and my mood as well. About 10 months later he added Amantadine which was also helpful. Then after about a year and a half he added Sinemet which I struggled with; nausea, dizziness,etc. Thankfully I came across posts on this site which talked about taking it on an empty street an hour before or two hours after eating. That seemed to resolve many of the issues but after 6 years it wasn’t lasting long enough. So he switched me to Rytary which lasts around 4 hours and has what I can describe as a much smoother transition. I know many insurance and Medicare plans don’t cover it but I am lucky enough to have one that does.
Good luck to you on your journey! It’s a lot of trial and error and all of us are very different in our reactions to these meds.
It certainly won’t hurt you and it might help, but he can’t prove it because no one else has been able to duplicate his success. There is significant doubt as to whether JP ever really had PD. He is dogged in his belief though and not shy about preaching it.
Thanks everyone for all your advice and your words of encouragement. I woke up this morning in sweats as I do most mornings and neuropathic pain in my arms and hands. I have to splash cold water on myself till it calms down. It's extremely hard to face each day. Today I think I will try 1/2 Sinemet plus 1 capsule of 15 % mucuna . I will take it with ginger.
My first year was the worst. Adjusting to the news and then tweaking and figuring the things that worked for my symptoms. Exercise was key for me. I golf (badly) but the miracle of golfing is that it takes up time, it is social and it requires your brain so you can’t get into your feelings. You will find your new normal and things will look up. Adjusting takes time. Best of luck to you!
YOURE VERY WELCOME. I'M 78 YEARS OLD N DX'D WITH PD ON 20/04/21. I WAS IN DENIAL FOR 6 - 12 MONTHS [AGAIN THIS IS VERY COMMON). I HATE THE ILLNESS WITH A VENGEANCE!! BUT I WON'T GIVE IN TO IT. I ALSO THINK THAT PD CAN BE CAN BE STOPPED AND REVERSED. I FIRMLY BELIEVE THAT PD STARTS IN THE GUT AND NOSE. MAINLY DUE TO TOXIC CHEMICALS IN THE AIR AND SOIL.THE OLD MEDICINES HAVE BEEN FORGOTTEN AND GP'S AND NEUROLOGISTS RELY ON MEDICATION WHICH ALL HAVE SIDE EFFECTS!! I HATE MEDS AND TRY TO USE VITAMINS/NATURAL PRODUCTS WHEN POSSIBLE. I RECENTLY HAVE STARTED USING ASHWAGANDA AND BACOPA FOR MEMORY AND OVERALL WELLBEING. SO FAR SO GOOD. IF IT'S A PLACE
BO EFFECT I DON'T CARE - IF IT HELPS I'LL TAKE IT. ANYWAY I'LL STOP PONTIFICATING AND WISH YOU ALL THE BEST AND REMEMBER FIGHT FIGHT FIGHT FOR ALL YOURE WORTH.
For those using Macuna, I suggest reading "Mucuna versus Parkinson: Treatment with Natural Levodopa" by Dr. Rafael Gonzalez Maldonado, Neurologist. It is a concise by comprehensive overview of Macuna and treatment guidelines.
Hi grandma - the solution is very easy - exercise daily with at least 30mins of intense exercise. Walking is the best but you’ve got to put it in! Mix it up with some resistance training and also stretching. Throw in some Tai Chi for balance and brain training. And of course carbidopa/levodopa - start with the lowest dose and persevere. You will slow progression and get your life back on track! Good luck!
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We’ve all gone through it and it’s miserable.
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