My husband was diagnosed five years ago with PD. He is 75. His biggest annoyance at this time is hallucinations. He takes Sinemet, 25/100 , 2 pills three times a day. We are aware and I follow this site, that it could be caused from his medication. We have attempted twice to reduce but can only get down to 4 pills a day without other symptoms surfacing. So I have been following those that have taken Mucuna Puriens but most seem to take the powder.
I just purchased the capsules. They are 200 mg, 99.6% l-dopa. Have not started them yet. Wondering if anyone has tried the capsules? Neurologist won’t comment on this nor our GP.
I’m also aware that exercise is beneficial, but just can’t get him to do to much. No energy.
Hallucinations are a recognised side effect of levadopa. Both Mucuna and Sinemet contain this amino acid. In Sinemet it is synthetically produced -in Mucuna, as in humans, it is a natural substance. But chemically, they are identical (and therefore likely to have the same side effects). Mucuna has many fans, and may have an advantage that it is the whole plant rather than just the pure amino acid. Like eating an orange is different from taking a vitamin C pill. The vitamin C in each is identical, but there is other stuff in the orange.
Sinemet has 2 significant advantages over just Mucuna. 1) The amount of levadopa being administered will be known with considerable accuracy, whereas it can fluctuate significantly in a natural source. 2) Sinemet also contains Carbodopa which inhibits the enzyme which breaks down and wastes Levadopa before it can get into the brain. So you need more levadopa from pure Mucuna, than you do with Sinemet, for the same therapeutic affect.
So , at least in theory, you would not expect using Mucuna instead of Sinemet to help with hallucinations. The best thing would be to discuss with a neurologist whether other changes to medication would enable his symptoms to be managed with less Sinemet
My Dad went through a brief phase of suffering hallucinations on Sinemet, but seems to no longer suffer.
Exercise is trickier as you get older, and the PD progresses more, but it appears to be the No1 proactive response you can make to the disease. Ideally 20 minutes at a heart rate of 85% of maximum 3 times a week. That's one hour a week in total for the best PD therapy.
The neurologist was at a loss to suggest anything else other than a movement disorder clinic which I reminded him we did! Our GP has decided we should try Seroquel, 12.5 to start. We have them but have not tried it yet. Again was hoping not to add more drugs. Thank you for your thoughts!
Watch out for the Seroquel. Most users find it beneficial. However not true for me. I can't take it during the day...... I become too weak to sit up. I then tried only one 100mg capsule at night. Slept. great - but had much difficulty speaking the. next day and my. face was numb.
So my husband tried the seroquel, and his was 12.5 mg! Wow! All he did was sleep! The brief periods he was awake ,he did still comment on things he was seeing. Hallucinations were still there. Not excited to continue giving him this!
No-one really knows what causes dysknesia. It commonly occurs in people who have been taking Sinemet for some years. The natural concentration of l-dopa and dopamine in cell cytoplasm is zero because the decarboxylase converts L-dopa to dopamine much faster than the cell can make l-dopa. Some of the dopamine is collected in vesicles and is available to the pre-synaptic neurons when required to permit normal movement. Any surplus dopamine is quickly removed by the mono-amine oxidase type B (MAOB).
This is why the early attempts to treat PD with L-dopa were successful but the benefits were only felt for a short time. The drug companies therefore developed two substances that would inhibit the breakdown of l-dopa, and produced Sinemet Plus, l-dopa with 20% carbidopa, and Madopar, l-dopa with 20% benserazide.
The expectation was that the decarboxylase inhibitor, which cannot pass the blood-brain barrier, would prevent the destruction of l-dopa, which can. This would preserve a reservoir in the body that would supply the brain for longer.
This worked too but at a cost. Many people with PD were pleased with a reduced “off” time and an increase in the proportion of “on” time and many were prepared to put up with side-effects because they felt they were outweighed by the benefits. For others, however, who derive little direct, tangible benefit from Sinemet Plus, the consequences can range from the minor to the life-changing.
For example it is believed that the high concentrations of l-dopa and/or dopamine, in serum, relative to their naturally very low (“zero”) levels, cause, or contribute to, the onset of dyskinesia and may induce dystonia. Furthermore, at the time when the decarboxylase inhibitors were developed it was assumed that all dopaminergic neurons were located in the brain, and that carbidopa and benserazide would not affect the conversion of l-dopa to dopamine in the dopaminergic neurons of the sympathetic and autonomous nervous systems.
Now we know that at least six of these groups of neurons – for example, those responsible for making the dopamine that is an intermediate in the synthesis of adrenalin and nor-adrenalin in the adrenal medulla; those responsible for synthesising the dopamine that is the precursor of serotonin; stimulation of vascular D1-like receptors in the neurones in the cerebral, coronary, renal and mesenteric vascular beds causes direct vasodilatation and reduction of vascular resistance which results in lower blood pressure; I don’t yet know the origins of hallucinations but, from what you say, it sounds as if Sinemet might well be responsible. I was diagnosed with highly atypical Parkinsonism with MSA (dominant) in 2017. This was revised to “just MSA” in 2018. No doctor can advise or prescribe M. pruriens because there is no specification to say what it should, might or does contain.
In the UK you cannot get a prescription for L-dopa alone, only for Sinemet or Madopar and M. pruriens seemed to be the only option. I therefore read a lot about it and then wrote a long letter to my GP, my Consultant and the Parkinson’s Nurse (PN), in which I expressed my concerns about the decarboxylase inhibitors and their possible consequences. The only response was a verbal one from the PN, basically expressing sympathy and support.
For the past year I have taken 350 mg capsules containing M. pruriens extract, equivalent to 52.5 mg L-dopa, (1 capsule at 8.00 a.m., 10.30 a.m., 1.00 p.m. and 3.30 p.m.) and then 50 mg Sinemet CR (one tablet at 6.00 p.m. 9.00 pm and midnight). I aim never to have a large concentration of l-dopa (always < 15 mg./l of blood) and never to allow carbidopa to accumulate (always < 1 mg./l of blood).
These levels are far too low for anyone with PD who has difficulty walking and a severe tremor, which I do not. On the other hand I have neither dyskinesia nor dystonia; nor psychiatric symptoms; I sleep soundly but also in the daytime; I am constipated sometimes but this is complicated by microscopic colitis. I have double-vision.
Between 2015 and 2018 I fell about 150 times, not because of postural hypotension but because of a general hypotension. When I stopped taking Ramipril (a blood pressure lowering drug) my BP rose and my falls declined by more than 50%.
Conclusion
Treat every symptom separately. Don’t look for one-size (of treatment)-fits-all or you’ll wind up chasing shadows.
Wow! That’s a lot to take in and to be honest a bit over my head. It’s sounds like your taking a lot with regard to the MP and Sinemet. When you say you were diagnosed with a atypical Parkinsonism with MSA. What is MSA? My husband doesn’t have any dyskinesia, tremors. He did have high blood pressure until he started the Sinemet which lowered it. Since we have reduced Sinemet, his blood pressure is more normal.
I thankyou for sharing your experiences and medication/supplements you are taking especially with regard to the Mucuna. As I stated before, it’s sad that we all have to figure this out for ourselves, and agree, each individual is different.
Unfortunately, the following massive sentence needs some editing because it seems like three different ideas are getting mash together, and none of them is stated completely or clearly:
"Now we know that at least six of these groups of neurons – for example, those responsible for making the dopamine that is an intermediate in the synthesis of adrenalin and nor-adrenalin in the adrenal medulla; those responsible for synthesising the dopamine that is the precursor of serotonin; stimulation of vascular D1-like receptors in the neurones in the cerebral, coronary, renal and mesenteric vascular beds causes direct vasodilatation and reduction of vascular resistance which results in lower blood pressure; I don’t yet know the origins of hallucinations but, from what you say, it sounds as if Sinemet might well be responsible."
1) Following from the previous paragraph, I think you started to say that it turns out that six groups of dopaminergic neurons ARE NOT in the brain (???) or ARE affected by carbidopa and benserazide (???). But you didn't finish that statement.
2) You are saying that something [carbidopa and benserazide?] stimulates vascular D1 like receptors and causes low blood pressure. [Wait. Reading more, sounds like these are affected by higher dopamine OR dopamine agonists, which would suggest that mucana would also lower blood pressure. Lo and behold, mucana is used as a hypotensive.]
He needs niacin for his hallucinations. Please do a search on health unlocked and put hallucinations in the search criteria. You will come up with a lot of Articles and answers to hallucinations. Other PD people have been helped by niacin, it's a B vitamin, it is like a miracle to them. I would try this before anything else, the mainstream drugs are very hard on you when you have to take them. Good luck
They are both vitamins, they are not addictive, you can stop one or both of anytime. I think I would try to niacin right away, as you are reading you you're going to have to build up dosage. You could try B1 at the same time, but different times of the day? Hopefully it's going to make a great difference. Mary
My husbands hallucinations have stop with thiamine hcl. He had to go off for a week to readjust and they came back. Now that he has started again, they are gone.
We did try thiamine but we can only get the 100mg tablets here. I know I can order them but he started them and I wasn’t sure how much to give him. Asked GP about it but he said there was no point to taking them. That’s why this gets frustrating when you can’t get them on board. Seeing a new neurologist next week. I’m loaded with all these questions so we’ll see how it goes. Thankyou for sharing.
Or 2 grams? Dr Costantini started his patients on 4 grams a day of thiamine hcl but varied this according to weight, and other factors. Then he found that many non-Italians needed half as much. Some people have worsening symptoms and have adjusted to 1 gram or less. It depends on the person.
Glad to hear that B-1 is helping your husband and awesome that B-1 has done away with his hallucinations!
If it is at all possible, I was wondering if you would write a brief description of the effects that you both feel B-1 has had on his symptoms along with a little of his history and anything that you think would be helpful for someone who is considering testing B-1 / HDT into the following thread where other members are posting and updating their B-1/ HDT results? Here is the link to the post, it takes a while to load because it is big :
I can also go to that site but was wondering if anyone has found that after taking B1, a bit of confusion happened?? Started my husband on the B1 and he seems a bit confused shortly after which is unusual.
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Dr C has mentioned frequently that any worsening of symptoms is normally associated with a dose that is too high, but did this happen to your husband after his very first dose or was it after several doses or several days or weeks of doses? Actually it is more common for people to mention that they feel their brain fog is lifting and allowing clearer thinking to prevail.
Art
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After his second day!! I’m only just attempting to start some suggestions I have read. He’s only taking 2 100 mg tablets. Today I only gave him one and he was so confused. Did not give him the second one.
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No one has reported such an effect after only just one 100 mg capsule of B-1.
Check out Dr. Abram Hoffer's. protocol for high dose niacin, I think it should be accompanied with vitamin C.
NOrm1025,
I think you may find the following incomplete article interesting and possibly of use! It discusses the use of melatonin for hallucinations in a PD patient.
Mucuna Pruriens (MP) is natural levodopa WITHOUT the side effects of synthetic meds! Whatever form of MP you and your husband decide to take, make sure he takes it with green tea or green tea capsule and grapefruit juice. They both act as carbidoba which inhibits the enzyme which breaks down and wastes Levadopa before it can get into the brain. Many PwP switch from synthetic meds to natural levodopa which is also neuroprotective whereas meds just treat symptoms without any neuroprotective qualities!
Intense exercise a few times a week is the NR. 1 antiparkinsonian medication.
Search this site "Mucuna Pruriens" and you will find a lot of information.
According to the posts on grapefruit juice by wriga, not everyone should try it, especially because it can have negative or dangerous effects on other medications.
I take dopa mucuna from Now Foods. 1 capsule is 400 mg = min. 15% L-Dopa = 60 mg levodopa.
I take it 3 times with my madopar because of the carbidopa/benzerazide. I use less madopar then. For lodosyn I need a receipt from my neurologist or GP.
Research would seem to indicate that cognitive impairment may play a part in these hallucinations. This is something you should discuss with your Neurologist.
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We’ve spoke with the neurologist we always see and I at one time asked him if he though my husband may have Dementia. He dismissed that right away. We are seeing a new neurologist next week so am gathering info to discuss with this one before we do anything.
I'm addicted to gardening. There is always one more flower I haven't tried, one more vegetable I need to grow. Over 300 hydrangeas-80 varieties and I still want more. Each one is so beautiful and calming.
I got them off amazon. They are called Health Factor. L-Dopa Mucuna Pruriens 99%. No stearates, No Filters, No Gluten, No Wheat, Veagan, Kosher. 200 mg/30 capsules.
In their questions answered section, they admit that the capsules contain only 15% L-Dopa, like the typical MP capsules, so the placement of 99% on the label seems to me a deliberate deception.
Hi NOrm1025. I get lots of criticism for talking about an alternative to levodopa drugs on this website. I feel sure that you would like to hear about an alternative to levodopa if your husband is having
hallucinations, which are probably caused by one of the drugs.
If not than please forgive me!
If you are interested then look at my website - reverseparkinsons.net and contact me. I do not charge anything .
Hello! I began taking Mucuna Puriens powder just after my diagnosis. I was not put on big pharmacy drugs the first year and supposedly had PD 5 years upon diagnosis. I took the powder 1 tablespoon in my cranberry juice enough to gulp down due to the unplesant taste. I was still working full time and into the second year of working I decided to stop the powder and take the caplets. I take azilect (1 first in morning with first sinemet) and 3 Sinemet per day now but 2 hours after the sinemet I take 1 Mucuna caplet. I take 100%pure form organic Mucuna with very little progressive symptoms. My movement disorder specialist is very impressed at my lack of symptoms. DaTscan results showed 50% dopamine loss in 2015. I do not fall I do not experience hallucinations I sleep like a baby and Have energy and stamina which surprises most. I am 69. I had to retire due to open heart surgery which did progress my movements to be much slower. Anesthesia messes with the brain functions which are already messed up due to PD, I like to say. I am prescribed 3 sinemet per day and I take 1 Mucuna Puriens caplet between 2. I drive a car and a boat and enjoy my life. Research all you can! It has been used in India, Pakistan and China and other countries for many decades. I totally believe Mucuna gets part of the credit for my slow progression. I believe the powder is the best way to go but it is pretty gross. Just saying. I hope I have helped.
God bless you and enrich your life with each passing day.
Thank you so much for sharing your personal information! We haven’t started the mucana yet, because I have been concerned on how much to give my husband. He saw his neurologist on Saturday and he has changed the timing of his doses and we see some progress in his movements. I’m curious on the strength of sinemet you are taking? My husband takes 25/100.
Again thank you so much. It’s helps when others share their journey and how they get there!!
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