Hubby was feeling very bad earlier in the year from what turned out to be overdosing of levodopa when they changed him to the ER madopar. This caused severe rigidity even in his throat, agitation and sundowning in the evening, and eventually he kept trying to escape in the night to try and kill himself. He got constipation and insomnia and they added zopiclone to sleep and laxative. We went back to the low dose 50/12.5 madopar and asked for the tablet instead of the billious blue capsule as who needs to eat blue? He came right pretty quickly and has been very good for months now.
thanks. Summary in English - don’t go to emergency room with Parkinson’s as they will likely make you worse thinking it’s something else.
Parkinson's patients may experience "off periods" characterized by a sudden worsening of symptoms and reduced mobility.
Off periods can be distressing for patients as they fear the on state will not return.
Unpredictability of on and off periods can lead to frustration for both patients and caregivers.
Sudden worsening of Parkinson's symptoms should raise suspicion of other medical conditions such as infections or non-neurological problems.
Emergency Room doctors may mistakenly suspect a stroke when presented with sudden worsening of Parkinson's symptoms, leading to unnecessary hospitalization.
The hospital environment can disrupt medication intake, sleep, and daily routines for Parkinson's patients.
It is important to contact the patient's neurologist for problems related to Parkinson's disease or cognitive issues rather than seeking immediate help from the Emergency Room.
General Practitioners and neurologists should serve as reference points for Parkinson's patients.
Up to 45% of Parkinson's patients visit the Emergency Room each year for various reasons, including emergencies directly or indirectly related to the disease.
In some cases, turning to the Emergency Room is necessary, and it is crucial for the staff to have adequate knowledge of Parkinson's emergencies.
The SOS Parkinson service in Italy provides an emergency telephone service staffed by doctors experienced in Parkinson's disease for patients to seek expert advice during challenging hours.
I was so afraid the doctor would want to admit me to the hospital today. I have lost 15 pounds in about five weeks and am worried about my heart from lack of sleep. My mom also has PD and has been hospitalized with UTIs and it has been terrible for her.
have you tried clonazapam for the anxiety? The anxiety about being worse can make it worse so I think the clonazapam helped him by providing a break in the anxiety and then the cycle of anxiety leading to worse symptoms wound back.
He has a 1/4 of a 0.5mg one 4 times a day. It takes a few days to reach equilibrium so you can start with a couple of whole ones for a couple of days to bring blood level up then go onto a low maintenance dose. He takes 2 of the quarters before bed with the melatonin and it helps the sleep. They said he can take up to 6 per day but we have kept it at 1 so it doesn’t make him sleepy the next day.
Just tried clonazepam and it didn’t help. I occasionally use Ativan but it increases the possibility of falling. And other than recently I generally do not suffer from anxiety. I tried the clonazepam hoping it would knock me out at night when I go through my vicious wearing off phase with horrible dystonia and other miseries. Tomorrow I will pick up new prescriptions for baclofen and ambien to try separately, of course. Hopefully one or both will help at least a little.
consider trying each new thing at a much lower dose than prescribed then slowly increasing until you feel an effect. Hubby has a gene that means his liver doesn’t clear drugs as fast as a normal person. Also one that breaks down dopamine to noradrenaline too quickly. I think that is why he has unexpected reactions. So by reducing everything to small amounts and adding entacapone to slow down the dopamine breakdown it lasts longer and he doesn’t get that burst of noradrenaline than gives him that agitated feeling.
baclofen knocked me out (sleep-wise). However, it is an anticholinergic,apparently some people feel the effect more strongly than others, and also acts on GABA receptors, but GABA B rather than GABA A like benzodiazepines. I’m not sure if it could contribute to falls, you may want to ask? It’s used for muscle spasms so it may be the right choice for you.
It helped me with sleep for a while, but less so after a couple of months, but messed with my short term memory, even though my dose was small (10mg,) so I’m tapering slowly. Despite my neuro telling me I could just stop taking or stop 1/2 per week, I find that even small reductions give me no or poor sleep for a few nights. So be judicious with this drug. It’s a strong one.
What eventually helped with my sleep was working with a Cognitive Behavioral therapist for Insomnia (CBT-I). Setting a regular time to get up no matter the amount of sleep, getting bright light immediately from a light box. Also a regular bedtime. That wouldn’t help with the dystonia of course.
Now I have a lot of slow tapering to do, as my psy-doc layered several sleep meds to get me sleeping again. Unfortunate. I could have benefitted earlier from CBT-I.
The Parkinson's Foundation offers a Aware in Care kit. The kit includes a bracelet "Parkinson's Disease Alert" bracelet (its a silver tag on a string). When my hubby was in hospital (not only in Emergency but then admitted to a hospital bed) I just about wanted to write on his forehead "Parkinson's" patient!!
Includes a magnetic card stating "I need my Parkinson's medications ON TIME, EVERY TIME. Includes a packet of Fact Sheet for Nurses and more.
The Parkinson’s nurse was the one that made him worse by adding medications and overdosing him. We have been to the emergency department for chest pains which turned out to be indigestion a few times now and they made him wait hours in a room full of sick people until 2am then sit for hours hooked up to machine. That didn’t help his Parkinson’s. It showed weird heart pattern but turned out to be caused by tremor . Luck the dr on duty had seen it before so he realised it was just the PD.
Dear Lynn, you are such a champ. Your husband is so blessed to have you researching everything and being alert for all possibilities. God will give you the strength for every new challenge.
LAJ my good friend, Im looking at the multitudes of supplements you are giving hubby and I cant help but notice some redundancies that you might have there.
First of all, youre giving mucuna with Madopdar. As Im sure youre aware, Mucuna contains a lot of L-Dopa, or Levodopa, as does Madopar. Madopar contains benserazide, which I believe limits the peripheral metabolism of L-Dopa to convert to Dopamine and lets that happen in the brain. Perhaps there isnt enough benserazide in the Madopar to handle all the extra L-Dopa you are supplementing and thus its getting peripherally converted to dopamine outside of the brain. And you have the entacapone, which makes the dopamine hang around even longer. Something to consider. I would wean him off the mucuna gradually over a few weeks, personally.
Also, you have fish oil, hemp oil, krill oil. In my opinion, you dont need all three. Maybe just go with the fish or krill.
next you have restore gold. there is tyrosine in that, which is also a basic material in the synthesis of Dopamine, adding to the excess dopamine again. Also, resotre gold has ALA and NAC, which as you know are good precursors for glutathione. So you may not need to supplement with the other glutathione as well. And youre getting ALA and NAC in Hardys, too. Both Hardys and Restore Gold also contain Acetyl L Carnitine and Grape Seed Extract, so youre getting doubles there too. And guess what! Hardy's has Lithium Orotrate too! So you can probably stop taking extra of that. Riboflavin, aka Vitamin B2, is another redundancy youre getting in Hardys.
Look how much money Im saving you! But wait, there's more!
Ubiquinol is the same as coenzyme Q 10, Im pretty sure. No need to double up on that. And thats pretty expensive stuff.
you may be able to cut down on your B1 by switching to sublingual. I went from 4000mg of vitacost B1 a day to 100mg once or twice a week with such great results, I was able to get off all blood pressure medications. Something to consider. Perhaps try half of a 100mg sublingual once per week instead?
Full disclosure, I am not a doctor or even a witch doctor, I dont even play one on tv! These are just my opinions and of course they arent worth the paper theyre printed on. But just some thoughts for you to consider discussing with a real doctor. Youve been my good friend for a long time and I know your hubby is the luckiest guy to have someone like you that takes such incredible care of him! In my experience, I have been on just as many supplements while I was struggling to get through the days at work. All kinds of things like Mucuna, Dopamine enhancers, vitamins, herbal concoctions, etc. I have learned that if you lean too much on one neurotransmitter, dopamine, you throw other ones out of whack and then you wind up with more problems. I cut down to just Sinemet, Magnesium, B1 and lithium orotate. I watch what I eat, I make it a point to get decent sleep as best as I can. I feel a lot better than when I was going crazy with the supplements. But of course, Im not your hubster and everybody's different, so what works for me might not work for him. All my best to you and your family!
Yes, it is a lot of supplements and I would love to save some money and yet hubby is better now than he has been in years!
I carefully look at all the ingredients in each product and check for duplications and interactions. You are right, there are products both with the same things but combined they make up an amount which is at the levels some trials have been done at and by themselves they are less than that.
The mucuna with the madopar (which is 50/12.5 so in itself a half dose) means the peaks of levodopa from different sources occur slightly offset from each other. He tried the 100/25 madopar and that didn’t go well as you probably read. We nearly lost him to suicide.
He has the extra mucuna and entacapone with the early doses of the day and not late in the afternoon as that was where the problems of overdosing of levodopa were the greatest on the ER madopar 100/25.
Yes, he has extra of tyrosine etc as they are the building blocks of dopamine so I want him to have as much of a chance of making his own as I feel if he can still make himself some over night he is better off than taking extra madopar which seems a lot harsher on his system.
Lithium the Hardys people said it’s fine to take the extra capsule. I think theirs is part of the proprietary mix and is in the great salt lake mineral they put in so I don’t think it is much. The NZ label doesn’t even mention it separately.
The oils all have different things in them and he takes each at less than the full dose of each.
1 Krill capsule has 350 mg phospholipids, and only 60 EPA, 30 DHA (very expensive)
Synergy super EPA 1 capsule has 600mg EPA, 150mg DHA
Healtheries fish oil has 1 capsule has 270 EPA, 180 DHA (it’s cheaper)
Hemp oil has 213mg omega3 as alpha linolenic acid, omega 6 548mg, omega9 82 mg plus other cannabinoids (not thc or cbd)
So if I got rid of one it would reduce variation of omega 3 and he would have to take more of another so no savings. I am trying to increase the ratio of EPA as that seems to be better for the brain and cheaper oils have lower EPA.
Ubiquinol and coq10 he takes 10 mg of each and if he took one it would be 20 mg of the ubiquinol so no savings.
The double up of the Hardys and restore gold ingredients - I talked to Hardys about that. They don’t have a clinical dose in their proprietary mix so they said taking it with restored gold is fine as together they are around the doses recommended. Restore gold has the tudca which to buy separately is the biggest part of the restore gold cost anyway.
Riboflavin he takes during the day and was recommended by the gene analysis to take large quantities of it as many of his genes need it to function.
Pantethine is for his skin and helps processing fatty acids which I believe caused his pd smell and acne and rosacea which are all gone. His gene analysis recommended high doses of this too. I add extra of the vitamins that the gene analysis recommended where Hardys doesn’t have enough.
Together all the bits are working together to give him seemingly the right dose at the moment - well he certainly is feeling very good, lots of energy to walk for hours, playing bridge at the club, driving again, laughing and making jokes (often at my expense😅) arranging our social life , movies, weekends away etc. and his anxiety and depression is completely gone. He doesn’t smell of pd , his sense of smell is coming back, and his arms seem stronger. Apathy is gone. We went to mid winter fire works the other night, his idea, and he coped with all the crowds.
He has still got annoying symptoms that his hands still don’t work well, his need to pee is annoying for him, and the old erectile function is still not functioning despite the initial success with hgw.
we have just started trialling him having the weekends off supplements which he has done twice now and dopamine levels seemed fine so far. Hopefully his gut has sorted itself out too so I will look at slowly trying reduce the Hardys and restore gold on the other days but as he is feeling so good at the moment I am reluctant to jinx it by changing much fast. He has in the past had bad crashes. They used to be 6 weekly at the start like some kind of rhythm but he has gone 5 months feeling really good and since it’s winter now that is a big improvement. I want to see him go a whole year feeling good before I try changing anything else as otherwise it’s hard to see whether it’s a normal crash or the effect of changes in supplements.🙂
oh well, at least we chanced upon a combo that seems to work for now, not sure if I totally know what’s going on! (BTW the weekend off supplements doesn’t include the mucuna as I count that as part of the levodopa dose).
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Mucuna dosage question 
Ongentys this medication WORKS!
Looking for people who have phased out Carbidopa/Levodopa in favor of an all-mucuna program
Sharing my recent journey with Parkinson's-induced insomnia
