Hi, my hubby has been going through a rough patch since before Christmas after a long period of doing very well. He was taking 3 madopar 62.5 per day. He had been sleeping well with 5mg melatonin but then stopped being able to sleep and became increasingly anxious dreading night, and had to pee 3-4 times in the night but was struggling to get in and out of the bed which was further making him anxious.
First they put him on an extra overnight madopar one and also a prostate one called tamsulosin and 1/2 a zopiclone sleeping tablet and he had been taking the occasional 1/4 clonazapam for anxiety as needed which they said to take every night. He also has 2 x 1/4 procyclidine to counter the effects of the other medications.
Something in that mix made him very confused in the night so he has since stopped the overnight madopar, tamsulin, and zopiclone which has helped him to be less confused.
The nurse suggested increasing his madopar 62.5 in the day and they gave him quetiapine for sleeping . They said take 1/2 quetiapine early in evening then 1 before bed but this made him very confused in the night to the point he couldn’t get to the toilet by himself so he was waking me up all night so he has dropped that back to 1/2 before bed with 1/4 clonazapam. He has always needed much less of anything he is prescribed as at proper doses he gets every side effect.
They put him on 2x madopar 7am, 1 at 11, 2 at 3pm, 1 at 7 pm and 11 pm. So 6 per day which is double what he was on a month ago.
Now he is having spasms in his arms and yesterday his legs too which seem to occur about an hour after his madopar after meals. You can see ripples in his muscles and twitching. He is finding it very distressing. He does find it a bit easier getting out of bed he has an overwhelming feeling of being over medicated and can seem to taste chemicals in his mouth and nose. I took him off all other supplements for a few days to check if anything was causing this and it made him feel worse being off them. He seems to be able to smell strong smells like perfume and chemicals when I might only be able to smell a slight whiff of eg my son’s aftershave. He is also highly sensitive to any noise. He can hear traffic sounds from miles away that I don’t notice and it all makes him him distressed. It is like he develops autistic tendencies after 8 at night once it gets dark. He is suicidal to the point I have had to deadlock him in at night so he doesn’t escape.
I feel like it has been caused by the increase in madopar but the nurse says he is highly under medicated! I feel like he is over medicated as he wasn’t having all this trouble with spasms before increasing his dose of madopar. But he was finding it was running out before 4 hours was up and he was freezing up. And he was having problems getting in and out of bed.
Has anyone got any suggestions or have a similar experience?
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Thanks. What do I do when the specialists and doctors do this to him every time. They always want him to take more and seem to think I am deluded when I tell them he always reacts badly to everything. They say he is a good responder to madopar but I really have no idea what they base that on as they never see him until it is critical and he is in a dire situation. They want him to build up to 8! Every time he goes to the doctor he ends up worse
I’m pretty sure his initial decline was brought on by the second dose of the vaccine, then the booster. Obviously he had to have it but he was doing so well before that. The GP agrees it is a possibility it could have caused some inflammation making him worse. Apparently there are cases of MS patients deteriorating after it.
Personally I just work with my primary care physician who prescribes my medication. She is happy when I am able to reduce rather than increase. I do not know if something like this is possible for you but that is all I have got.
The primary care one referred him to the specialist and he gave her to his nurse which is the same persons who said he had to take the madopar at the start as he was a little stiff, but fine otherwise. The GP doesn’t really know much about individual PD medications apart from his general knowledge so will always defer to the specialist
I find neurologists/MDSs useful for checking progression. They prescribe meds, but that is a very individual matter. Only the patient and the care companion can tell how much medication will make patients feeling better. You don't have to give him what the specialist prescribes and what dose. You have to observe his reaction and you must be the judge of what is good for him. Can he tell you how he feels with each medication he is on? In my opinion, he is on a lot of meds and Madopar overmedicated.
Hubby's MDS at Vanderbilt told us that "Less is more." He never pushed for meds and he was willing to work with us taking MP and supplements.
Yes that is how I feel but the nurse to the specialist who is too busy to see him keeps pushing him to take more and extra meds. I feel every time he goes to a dr or nurse he ends up worse. He just went because he was peeing too much so I wanted his urine tested for infection just in case and a prostate check. But that led to a raft of new medications and increases and a rapid decline. But I did feel his madopar may have been slightly too low as he was freezing at the end of 4 hours before the next one was due. Doubling it was a bit drastic I think and they want him to be another 2 on top of that. The specialist hasn’t even seen him yet.
Yes he was taking 2 now capsules a day first with the madopar, then later on with lunch and dinner between the other 3 doses. I feel like that was better so I think we need to go back to that and maybe just 4 madopar a day. He hasn’t tried carbidopa with it. Madopar has benserazide. He started on sinemet at the start a few years ago then it got switched to Kinson which is generic sinemet and it didn’t agree with him at all. 3 madopar he could tolerate but 6 is too much it seems.
MP plus carbidoba is what our MDS recommended. Natural levodopa and 1/2 t carbidopa for better result. If you can get a prescription for carbidopa or Lodosyn to add it to MP will be ideal.
We agree. we've found that just resting 30mins before next dose helps rather than increasing doses. The resting is more to prevent falls stall and to let time pass while is off phase
He kind of panics if he feels a dose wearing off and he fears he will freeze. Then his inclination is to stand up and test the theory and then stumbles around banging into furniture in a panic that he is being paralysed.
I am so sorry to hear about you and your husband's struggles. My husband has similar issues. The doctor here in Australia feels he is undermedicated as well, and I try to tell them he was fine before the vaccines and we had a good regime going with mucuna and supplements. As it stands now he experiments with the drs approval 1/2 madopar every 2 or 3 hours with 1/8 ts of Ldopa pure usually an hour after ea 1/2 madopar. He has severe dystonia and dyskinesia for almost a year now and he gets it at peak dose and low dose. The Dr never believes me when I tell them he has peak dose issues, since it's extremely rare apparently. I don't even know why I go to the Dr anymore. There's no good answer I feel. I told them if you saw a dog writhing uncontrollably on the floor for 5 hours you would euthanize him. What am I supposed to do when my husband is suffering? They don't seem to know. I'm just here to say I feel your pain and you and your husband are not alone and I'm hoping we get some good advice and help soon so we can get through this as best we can and in one piece.Cheers
Thank you. It’s a comfort know we aren’t alone. I hadn’t realised this affect is rare. Tonight we are experimenting with the slow release given at 3pm along with the 62.5 madopar. So far so good but the trouble usually starts around 8pm, one hour after his next 62.5 at 7pm. Last night I trialed his sun box as he seems to struggle with the artificial light and I think at least that is full spectrum. I think it calmed him slightly.
I’m also wondering if overlaid slow release madopar would be better.
Btw have a look at his genetic info below. He has high dopamine beta hydroxylase activity which they say has bad outcomes. I think the problem is his dopamine is being broken down fast into norepinephrine which creates anxiety so it runs out too quickly to an anxiety causing product. Obviously he has managed most of his life to manage it maybe with other genetic factors we don’t know about so a slow release seems like it might slow this process down
''He has high dopamine beta hydroxylase activity which they say has bad outcomes. I think the problem is his dopamine is being broken down fast into norepinephrine which creates anxiety so it runs out too quickly to an anxiety causing product. ''
The sedative effect of eschscholtzia is also related to the modulation of the level of catecholamines. The plant inhibits DOPA decarboxylase, dopamine β-hydroxylase, as well as type B monoamine oxidase, thus preventing the conversion of dopamine to norepinephrine. It indeed decreases the synthesis of adrenaline.
I found a way to increase dopamine, but block the conversion to Norepinephrine!
So, in the last week or so I have been experimenting with Beta-Alanine. Like most of you will think of Beta-Alanine is merely a bodybuilding supplement
Mebicar decreases the brain noradrenaline level, exerts no effect on the dopaminergic systems, increases the brain serotonin level, and does not elicit cholinolytic action.
Yep. That happened to my Dad in a similar scenario. Dosage increased to help him sleep through the night but the reaction was not worth it. No easy answer.
That was one of the trio that started this nightmare but I suspect it was the zopiclone or tamsulosin at fault. But have stopped all three after a couple of days and added the extra day ones and things are getting worse daily. Maybe I should try swapping the extra 7 am one for a day release . I have a big bottle of them now so worth a shot.
What I am able to say about this situation is doubling the levodopa dose of someone whose symptoms had been under reasonable control is just plain nuts. They are operating with a one-size-fits-all attitude, yet every Parkinson's patient is different. You know what is best for your husband and these prescribers evidently do not.
I don’t feel he is a good responder to levodopa. He had a lot of trouble with Kinson which is generic sinemet when he first started. So they swapped him to madopar. It seems like it hits his system all at once when it dissolves then sends him into spasms.
His genetic test says he has a high dopamine beta hydroxylase activity which I suspect is the problem but the medical people don’t accept that as proven science yet so won’t consider it
“It seems like it hits his system all at once when it dissolves then sends him into spasms.”. I was advised to wash down with plenty of water/ liquid, and it does seem to help.
He does have the Hardys daily essential nutrients that have vitamins and minerals and trace elements. I think this is more from the madopar than a deficiency as it correlates with the change in medication dose
It has 3x 200 mg per day of Mg as a chelation compound
Question: What causes muscle spasms and twitching after meals?
Maybe the connection is not between meal times and spasms, but rather between "two madopars" and spasms?
I agree with park_bear that the spasms and twitching seem a lot like dyskinesia.
If it was me, I would try replacing the "two madopars" with one madopar i.e. a total of 4 madopars per day, rather than six. In my experience, if this is dyskinesia, the improvement should be fairly quick.
We dropped the 3pm second one yesterday and he was worse than ever after dinner. He has 2 at 7 in the morning as well but this doesn’t seem to have the same effect. It’s either dinner or night time that brings it all on too. It’s so confusing.
He only stopped taking them after they added the extra madopar. The first day the extra madopar gave him such a bad reaction we thought it might now be overdoing it so the next time he dropped the MP.
Yesterday he just took the one extra madopar at 7am, his normal 11am, then the nurse who tells him he is way under medicated told him to take a slow release at 3pm with the normal one. He was not really noticeably different than for the last few days with a reaction again after his 7pm one, until 11 pm when he took his last Mp and he was then in a bad state and had a very bad night having to wake me up he was so agitated.
So this is his schedule
7am Madopar
8.30-9 breakfast oatmeal, blueberries, stewed fruit
9 procyclidine 1/4
11 am madopar
12.30-1 lunch gluten free toast, some times egg, usually marmite or tiny smear of jam
2.30 procyclidine 1/4
3 madopar
6 dinner alternating days meat, vegetarian, fish, vegetarian plus lots of vege
7.30 madopar
10 5mg melatonin 1/4 clonazapam, 1/2 quetiapine
11 madopar
Every madopar starts a reaction after about an hour that lasts 1-2 hours. In the morning he seems to cope a bit better as he plays online bridge but after about 8pm he is a state of agitation until bed , the last night he was back up at 1 with a strong reaction . Couldn’t sit, stand, move, walk, lie down. Didn’t know what he was supposed to be doing he said. Can’t go on any longer .
This morning he is sitting with my son watching football on tv and is feeling ok it seems. He hasn’t had his spasms yet and it has be 90 mins since the madopar. He is yet to have breakfast.
He has his vitamins with meals so I have thought they might be causing it but last week he stopped them all for 3 days and felt dreadful and wanted to take them again. I have since moved them to earlier in the day as the worst is at night just in case but they don’t seem to be causing the extreme problem after lunch and breakfast and it doesn’t seem to make a difference to the night what he does,
Dinner I’ve tried even no protein , just veges , also meat and vege (no potato/rice/pasta) nothing seems to be any different.
Yes, probably why he wakes in the night. And then they told him to take 2 at 11! But he wasn't able to get up in the night to the toilet or get into bed or roll over so that's why I took him to Dr and for prostate test as he needs to pee so often. He was only taking 7am 11 and 3 pm before that so I just wanted him to take 1 more at 7pm. This started this piling on of more medication and such a fast deterioration.
"He takes 1/4 x2 procyclidine which is an anticholinergic but otherwise has just been on 3x 62.5 madopar for a couple of years."
"He [...] has 2 x 1/4 procyclidine to counter the effects of the other medications."
I'm confused. In the first quote, you seem to be saying that he has already been taking procyclidine during the period when he was just on 3x 62.5 madopar. If so, then what are the "other medications" that the procyclidine was meant to counter during that period?
Sorry to hear you’re going through all this again with your husband.
I can’t help or suggest much except that when my husband’s anxiety and depression was at its worst, he was getting up to the toilet 5, 6, 7 and even 8 times a night, and it wasn’t a prostate problem, it was his mental state. But since he was put on antidepressants, it’s usually just the once now.
The MP that he now takes is an Ayurvedic one and I don’t know if it’s the placebo effect or not, but he seems calmer. On the downside, it only has 5% levodopa, but I think the other properties within the bean help him to feel calmer. He has recently restarted back on the MP as the neuro thinks that he is under medicated as well. Luckily he is happy for my husband to use the MP, with a review in 4 months. (He had stopped using the MP some time ago as we thought it may have been adding to the nausea feeling, but I now put the powder in small easy to swallow capsules and so far so good.)
Ah, thanks. The anxiety feeds on itself doesn’t it. Leading to more symptoms then more anxiety. He has been on the antidepressant route before and he cannot seem to tolerate them. He’s tries sertraline and fluoxetine which made his agitated and suicidal. Mirtazapine turned him into a zombie and he had no energy and couldn’t exercise. Now quetiapine has made him terribly constipated and fatigued again. Clonazapam seems to be the only thing that he doesn’t overreact to. At least he hasn’t in the past but he is taking quetiapine and trying to get off that again now at the same time so hopefully it’s not the clonazapam causing the problem too.
The constipation he thinks is making the need to pee worse too. The dr didn’t do the prostate test grrrr as he said his psa was normal last time!
The long acting madopar seems to be still too strong at its peak, but runs out too soon. It’s the weakest thing that they have. Seems a weaker one taken more often might work better. He really isn’t good with madopar I think. When it is at the peak he goes so rigid he is terrified agitated and begs to die. Then at the end of it he can’t move at all. Since increasing the dose he has gone from just running low at the end of the day so he can’t move around in bed to pretty much completely disabled in about 3 weeks.
My husband was hospitalised 4 years ago with constipation that caused urinary retention.
His breakfast now consists of 2 dessertspoons chia seeds with linseeds, sunflower seeds, pepitas, soy or almond milk, plus bananas, blueberries and raspberries. Not only is it delicious, but it works like magic.
SilentEchoes explained that chia seeds pull liquid into the colon. Maybe this might help the constipation problem for your husband too.
He has a laxative now and his poop is not at all hard. It is just the almost paralysis of the bowel muscles is the problem. He has never had problems before the increase in madopar.
I’m going to trial reducing the long lasting madopar to every 8 hours instead the current 4 and at the 6 hour mark add a faster acting MP capsule .
I’ve taken graphs of the plasma levels of madopar and overlayed them and the peaks coincide with his distress. The first one of the day is ok but the tail of that is additive to the next one so he spends the rest of his day above the comfort zone of plasma levels. But 8 hourly is going to run out an hour or so before the end of the dose so will need a small hit of instant. 6 hourly would be even better but unless he wants to get up to take it at 1 pm it won’t work whereas 8 hourly will be at 7am, 3pm, 11 pm so equidistant.
"I’m going to trial reducing the long lasting madopar to every 8 hours instead the current 4 and at the 6 hour mark add a faster acting MP capsule."
An alternative would be to use a madopar 62.5 IR tablet instead of an MP capsule. This gives you the option of trying one quarter of a tablet, one half of a tablet, three quarters of a tablet, or one whole tablet. I'm assuming that your madopar 62.5 IR tablets are double scored, and that you have a good pill cutter.
We unfortunately only have the capsules of madopar which you can’t open. That’s the problem as they are even peakier than the long life. We do have some old Kinson that was 100mg but we weren’t sure about mixing the 2 products and it didn’t agree with him originally hence the switch to madopar.
Well today didn’t go any better. It turns out that even waiting 2 hours to take the second pill it was too far down the graph even after taking the MP at 4 3/4 hours which was definitely needed by then.
I’ve been fiddling with the graphs again and at least now I can see which of his symptoms correlate to which point on the blood plasma graph. The “comfort zone” at least for him appears to be equivalent to the 0.45- 0.65 nano gram/ mL . it appeared by taking the MP at 4 3/4 it seemed to hold him steady at the same point for another hour which seemed to be the equivalent of 0.15 ng/mL max.
I think by giving him the MP with the first long life in the morning and spacing by 4 1/4 hours it would reduce the top of the peaks enough but not dip as low at the bottom as it did today. But it would still bottom out a bit too low.
Ideally we could get a tablet as you say then we can cut it up because what we’ve now found is both the longer and shorter madopar capsules peak too high and low at 4 hourly spacing. It might be the best thing is a 1/4 strength tablet taken every 3 hours. We’ll get there!
But tomorrow we will go back to the original 7,11,3,7,11 for a day.
Yes indeed. Your trial-and-error approach should lead to a good result.
In my case a similar approach achieved a result which has lasted for some years now. My doses alternate between one madopar 125 IR tablet and three quarters of a tablet, with a dose interval of two and a half hours.
Great thank you. It seems a similar strategy. Our problem is he doesn’t need very much so we haven’t got anything weak enough to stay in the zone as the weakest slow release is too high.
He can’t tolerate that strength of pill. The madopar 62.5 are too strong at their peak even but too short lasting. Although before the doctors put up the dose so much and added the slow release the 3 a day did seem ok, except he couldn’t get into bed or roll over by himself. So if they hadn’t mucked with it all and just added one more later in the day it might have been ok. The slow release is supposed to be pretty much out of his system completely in 8 hours and too low to be any use on its own at 4 hours. It peaks too high and runs too short. I think he is burning through it at faster than average so is getting a much higher dose at the peak than an average person.
I think I’m going to try and get the tablet, cut it in quarters and try closer together .
So if I understand you only have 2 1/2 hr gaps between doses ? So meals 5 hourly?
10.30am, 3.30pm, 8.30pm, 11pm - 3/4 madopar 125 IR tablet
about 9am, about 1.30pm, about 7pm - meal
This works for me, but as we know, won't work for your husband. It is just given as an example.
My earlier response was about your plan to try one madopar 125 SR at 7am, 3pm, 11pm, and one MP capsule at 1pm and 9pm. I simply made the point that you would have more options if you could use part of a madopar 62.5 IR tablet instead of an MP capsule.
I repeat, the only reason I gave you any details of my schedule is so that you could see a practical example of pill cutting.
Thanks! I will have to try to get the tablets instead of capsules but it’s hard to get appointments here. I can try the same with MP powder except concentration is not a known so it would be more hit and miss
Every sympathy, I am in a similar boat and concluding it is dyskinesia. Like wise symptoms worsened after Covid vaccine and I have tried to break the cycle by tempoarily reducing / fluctuating Stalivo dosages during the day (occasionally taking 100mg instead of 125mg X 5 times per day) when I judge it is OK and necessary.
I have also started taking 1 X BerbeLipid Complex 500mg capsule at start of middaymeal per day and more generally reduced the Dairy & Gluten dietry intake per day. It has made things a little easier.
PD is a nightmare; Every case is different, as indeed treatment of ill must also differ. And every day new challenges may arise.
I find I have to drink more when Pasta is on the menu & a pinch of salt added to a large glass of water helps especially in warm weather when any dehydration occurs.
One more possibility you may want to eliminate is potassium deficiency, especially since muscle twitching and spasms are often associated with electrolyte imbalance even in healthy people. In some PWP, l-dopa can cause hypokalemia (see below), so try supplementing K citrate or you might also try a balanced electrolytes formulation to see if it makes any difference from your norm observation as a process of elimination.
You have to be careful with K supplementation and divide the dose, and that's why the pills are all limited to 99mg. Try 3 times a day to start (morning, noon, and night) and then titrate up slowly as needed, but the daily K requirement is up to 4700mg per day, and most of that should come from foods.
The Hardys already has 80mg 3x per day so perhaps that is already enough? He does get a lot of fruit and vegetables every day as we are on a very strict diet. He usually has a banana which has quite a bit
That's 240mg, so no probably not enough especially if c/l is leaching K and if he's not absorbing K through foods adequately to meet up to 4700mg requirement a day.
Yesterday I made double sure we had piles of fruit and veges and used Lo salt which has some KCl as well as NaCl l in it in my cooking (I don’t usually use this) and he had the 240 mg in his Hardys. Last night he was as bad if not worse than ever. I assume Potassium is absorbed pretty fast being so soluble or would it be the next day the effect is felt?
Well...plenty of fruits also means plenty of glucose/sugar, so that may not contribute to him feeling better. Potassium supplementation can be pretty tricky because your kidney will try to excrete it as fast as it can to maintain safe blood osmolarity in balance with other minerals esp. sodium, and if also deficient in others can introduce complications. Be careful not to be deficient in salt. Also, if lacking in stomach acid, many elders tend to have problems absorbing potassium from food. You might want to try again without fruits or just try a bit of extra K. Increasing high K veg (unless oxalate/lectin sensitive) will tend to benefit nevertheless. Avocado and Squash are good options high in K. Avoid beet greens and spinach - very high in oxalates.
Ok thanks, gosh there are so many foods on the don’t eat list I struggle to know what to feed him😩. And he has lost more weight . I think potentially he is sensitive to vegetables as it’s always after diner he feels the worst, whether or not we eat meat. I tried just vege soup the other day with pumpkin and greens, leek, onion broccoli all blended in and he was just as bad.
When/if your gut barrier gets compromised via dysbiosis, one can easily develop sensitivity or allergic response to oxalate, lectin, gluten, purine, etc. I understand your struggle....
I think tonight I will trial breakfast for dinner ie wholgrain oats, blue berries. Then if the reaction is still the same it must be to do with night time not the food, as he has been taking 2 madopar at 7am then breakfast about 8.30 with only minor muscle tightening. So if he has the same meal and pills and still all the symptoms remain can it still be the food and madopar if they are the same? I’m beginning to think it is the night and the artificial light! The doctors will think I’m completely nuts.
Most Drs often think you're nuts when you think outside FDA-approved drug routes. Absolutely doesn't mean that you are. I hope you find something that works for your husband. Try pureed avocado or guacamole - may help retain weight. 🤗🙏
Yes but it’s worth looking in to Trehalose more IMHO. As a food sweetener a ton is needed. In trials for medicinal purposes, not as much. And it need not be an indefinite solution. When I asked my FM doc about it he prescribed 1 teaspoon a day.
Ok. Do you think it serves the same purpose as mannitol? He had been taking the synuclein mannitol for a long time but the guy making it stopped and I have replaced with bulk supplements one which he has had for quite a few months now. I don’t know whether it is as good as the change of brand coincided with him getting worse and I stopped giving it to him a week ago just in case it was a problem. He is worse now not on it so I guess I try it again. It may not be in any way connected as I tend to think the meds are so strong they outweigh any other effect.
Interesting. I was wondering if it was the lights. I saw a study on light that said a dose of full spectrum light in the evening can help sleep so last night I put his bright light sun box on when he started his panicky attack around 8pm and it did seem to calm him. So I left that on for about an hour. He was a bit better I think. But still a bit panicky before bed. But that is the opposite of blue light blockers as it is adding full spectrum light including blue.
Could too much D3 further deplete K? Also K can cause insomnia if taken late in the day.
I am inclined to think increasing fats could help. MCT for reduced inflammation and keeping on weight and helping address possible bacteria or viral issues?
I am highly sensitive to veges as well both from a digestive standpoint and brain function. Asparagus and cooked cabbage are my safest bet. When everything else makes me a mess that plus fish (salmon) and avocados are my safest options.
I wonder if he takes lithium Orotate as that functions from a different angle entirely. I think that could be very worth trying.
I love asparagus but I can only eat a few stalks or it causes problems, and I've heard some PWP having the same issue so it's all individual. When struggling to retain weight, I do think upping organic EVOO is a good idea, and avocado is high in healthy fat. It's not a bad idea to try LO especially if confirmed to be deficient through tests such as Hair Mineral Analysis. Whenever a supplement causes insomnia, definitely avoid taking it at night. D3 (avoid taking at night) and K2 are best taken separately.
When you say k are you talking the vitamin or potassium?
Yes, I think fats seem to be the safest. I am trying to add extra olive oil and butter to everything and last night I tried some coconut oil, coconut cream blitzed with a few cashews and raspberries as a topping to his banana for dessert. I used to make frooze balls with nuts and dates and coconut oil but dried fruit seems to have been given the down vote recently with too much sugar.
Asparagus we can only get in spring for a month usually except canned which is bad.
We had Gurnard white fish last night with cooked cabbage and kale and spinach and pumpkin, sweet potato, carrot but no improvement.
And I think sweet potato might be high in oxalates or salicylates and spinach is. But I saw peas on a don’t eat list a few days ago, nightshades rule out tomatoes which we eat a lot of in curries, stews etc, capsicum, chilli, eggplants. Beans and chickpeas and nuts have lectins,. And lentils? I don’t know. Meat, dairy, every fish except salmon makes PD worse apparently . Fruit has too much glucose, I’m almost down to drinking olive oil for calories😩
He is taking the 5mg lithium orotate, and has been for a few years. Potentially it could be reacting with the quetiapine but as it’s only the amount found in some water it seems unlikely to be a problem. Also I stopped it for a week along with other supplements and he was if anything worse not any better so I don’t think it is any of them. All his symptoms start in the evening before he takes the quetiapine anyway so it seems like it is night or madopar or food with the madopar
OMG- this is just like reading my sisters story! and we are currently at a loss because we keep saying it's the increase in the Levodopa that has done this, may be related to Covid booster but no one, like you will listen to us. They just keep adding more meds in to treat the side effects of other meds. She is now delirious/confused & anxiety off the scale. I'm a retried nurse prescriber totally against all prescribing guidelines and it's been a total eye opener and makes me so angry.
I've read lots of information about side effects of the vaccine and I've chosen not to get the vaccine for those reasons hope everything turns out well for you.
Thank you. It is comforting to know others are facing the same and that I’m not on the wrong track. He has cut back now to 5 and will reduce back to 4 in a few more. I swear they layer more and more drugs until they have stunned a person into a catatonic state so they can’t kill themselves then they think their job is done. Makes me cross.
Btw what meds is your sister on? He found zopiclone , quetiapine confuse him I think. Clonazapam is the only thing that seems to calm him without making him very confused and suicidal. He’s previously been on sertraline, mirtazapine and fluoxetine. Mirtazapine made him into a zombie who wouldn’t move or get up from his bed and I think it started off his pd symptoms. The other 2 made him hyper compulsive then suicidal. I feel the doctors think I’m being melodramatic but I had to get deadlocks on the door so he doesn’t escape in the night. I’ve found anything that a normal person takes one of I cut back to a 1/4 and it seems to have enough effect. But medical people get cross with me and say he is under medicated and their answer is to keep doubling.!
Sorry only just seen this reply. It was Opicapone that caused the confusion but it hasn't settled and like your PWP she is very sensitive to medications. They have been increased from 3 Levodopa to a total of 13 tablets daily in less than <3mths with no checking for side effects after each addition( ie stop see if symptoms resolve then if started again return) , as you say just lets add some more in.
“Opicapone (OPC) is a third-generation, once-daily COMT inhibitor developed to fulfill the need for a more potent, longer-acting COMT inhibitor, with a well-established safety profile (17–20). OPC has been shown to be generally well-tolerated and efficacious in reducing OFF-time in two pivotal trials in patients with PD and end-of-dose motor fluctuations (BIPARK-I and -II) (21, 22).”
I have suffered greatly from muscle seizures and tension and feeling 'out of control' after taking my scheduled Sinamet, midafternoon, I have discovered it is directly linked to how much food is in my stomach, and whether I have eaten meat. I am now very careful not to eat to the point wwhere I feel full. After my last dose at night before bed, I sometimes, instead of switching 'on' I begin shaking and then I enter a full on seizure experience which I cannot stop, it can go on for hours. So I have become very disciplined with the amount of food I consume, it helps, Also I have a few small spoons of Probiotic yoghurt following my meds, which settles my stomach. Also found that eating a whole banana in the evening stops morning anxety, which was crippling, try it. Hope these tips help somebody.... I'm dx since 2011.
Thanks , certainly worth a try. The whole nighttime routine for an hour after dinner to before bed has turned into a complete nightmare now. I will try your tricks.
Hardys has all vitamins and mineral and trace elements in a balanced format so hoping I have all of them covered.
Forgot to add that I have recently started taking Amantidine which is helping quite a lot, I was initially sceptic, but am pleased with its help. Dyskinesia is so ghastly !
“Amantadine is an antidyskinetic medicine. It is used to treat Parkinson's disease (sometimes called "paralysis agitans" or "shaking palsy") and its symptoms, including dyskinesia (sudden uncontrolled movements). It may be given alone or in combination with other medicines (eg, levodopa) for Parkinson's disease. By improving muscle control and reducing stiffness, this medicine allows more normal movements of the body as the disease symptoms are reduced. Amantadine is also used to treat stiffness and shakiness caused by certain medicines that are used to treat nervous, mental, and emotional conditions.
Amantadine is also an antiviral medicine. It is used to prevent or treat certain influenza (flu) infections (type A). It may be given alone or together with flu shots. Amantadine will not work for colds, other types of flu, or other virus infections.”
Interesting it can be given with flu injections, I wonder if it helps with covid injection too? Is it because they know the vaccine creates these symptoms?
It looks like there is research being done to see if it improves outcomes for covid. Interesting
My doctor prescribed Amantadine for my dyskinesia (after less than 2 years on Levodopa). The side effects were worse than the dyskinesia: anxiety attacks, diarrhea and swollen ankles and feet. My ankles and feet were extremely swollen (could barely walk on the left foot). It has reduced but 4 - 5 months later is still very swollen (increases randomly) and I can't wear most shoes, only slippers. I only tried Amantadine for a month and really regret it.
So sorry to hear about the difficulties with your husband. It’s extremely hard to get the balance right with Madopar. My HWP has been taking it from dx. He used to take 4 x 125 mgs per day but after 4 years plus the dyskinesia’s came on and all our Neuro kept saying was you’re under dosed! He’d have been dancing from the ceiling with any more. We lost confidence in him and changed Neuro. He added in Rasagaline, a MaO inhibitor, and Amantadine.
Now he is still experimenting with doses of Madopar the half doses, which your husband is taking, he has up to 5 or 6 a day. Never has had freezing but it’s the dyskinesia he seems to fight and get fed up with. Toe curling and mild dystonia isn’t too bad.
The Neuro still insists he is under dosed but accepts this may be more acceptable than the dyskinesia. Last visit he asked about sustained release Madopar which he thought might help with fluctuations but Neuro isn’t keen. He ll try again next visit.
You’re so right when you say the ‘experts’ don’t live with the day to day issues so their advice is after a one off visit. It’s so frustrating! I wish you all the best in finding what will suit your husband.
Some of his problems started in the bunch of new meds a few weeks ago. One of them was the slow release which they told him to take over night. So we are a bit scared to try that again. But equally it could have been the zopiclone sleeping pill or tamsulosin prostate pill he started at the same time.
Hi LAJ, when I first read your post I thought gee that’s a lot of meds considering your husbands sensitivity to medications especially psychological meds. I have read most of your posts over the years and know the work and love you have put into overseeing all aspects of your husbands care. I know what you mean when you say they will just prescribe and then prescribe some more. When my hubby goes to the Dr we sort out what we are going for and what we will and will not accept or be talked in to, he has been once without me and was prescribed three extra meds on top of what he already was on even though they were contraindicated (this was not his usual Dr), hence when we saw his usual Dr weeks later she was surprised too as to why the other Dr prescribed them (he never took them) .My husband takes 1.5 sinemet with 1 Now 4 x day and 2 Madopar ER at night, and (medicinal cannabis) Tilray 10/10 before bed and at 3am when he usually wakes. He also takes CBD 2x day for dystonia and general well-being, this works within minutes. He hasn’t seen his neurologist for nearly 4 years as when we left we always felt dreadful and fobbed off. His usual GP has been more helpful to him PD wise over the last few years. He has shoulder surgery in a weeks time and has stopped all supplements ‘incase’ but has resumed taking the Now with the sinemet as it gives it a ‘longer smoother ride’ and he could tell when he hadn’t had it. He has had all of his covid vaccines and has felt ‘off’ a week or so after each one, even ending up in ED with chest pain after the first, chest pain and leg swelling after the 2nd (refused me calling ambulance) and unwell PD wise with all 3 of the doses. He is really well at the moment, we have even been to Australia to see our daughters and grandkids and he looked and felt better than he has in years, this he says is due to his medicinal cannabis giving him great sleep, his PD meds which he has worked out what suits him and when to take them , a big walk every second day and stopping work last year. There will be something that you’ve changed or introduced recently , likely those extra meds or too high a dose Madopar, or a combination of both ? Sounds like something is just too much for his sensitive system to handle, which you have also come across in the past to I believe . Best wishes.
Thank you for writing all that. It is very helpful to see we aren’t alone.
Yes, I am very reluctant for more meds but we had gone to ask if we should add one more madopar as they were wearing off and he could not get in and out of bed during the night and he was needing to pee several times in the night and wondered if he needed his prostate checked. And he was so worried about going to bed the melatonin wasn’t working so he was waking me up every few hours for the toilet because he couldn’t get himself there. So that led to the slow release madopar, and the tamsulosin and the sleeping pill which led to all the other problems. It seems churlish after asking the doctor for help not to trust them and try the remedy but I should have known it would make him worse as it always does.
On the up side he can get up and back to bed now after we dropped the zopliclone and tamsulosin after 2 nights of hell and added the extra day time madopar instead of the slow release. They swapped the quetiapine to help him sleep and I reduced it from their 1 1/2 which made him so confused he didn’t even know what was going on to just half which makes him drowsy but not so confused. I don’t think it is that causing the problem as he only takes it half hour before bed and by that stage the symptoms are well under way. Unless it is the wearing off of the previous dose. Must look up the half life.
Unfortunately it has now sapped all his energy so he is struggling to walk as far which was what was calming him down before. This is what mirtazapine did to him before he was ever diagnosed and I feel it cause the onset of pd so it’s a worry.
It seems to me, like your hubby could be over medicated. Perhaps a movement disorders specialist could sort this out. My neurologist is very careful to only have me on the Parkinson’s medicines, with no sleeping pills, or anxiety pills. Of course, each person’s treatment plan needs to be personalized. Drug inter reactions are possibilities. I have sleeping problems etc. too. I hope you can get this all sorted out, with a medical Doctor specialist! I’ve had the depression, anxiety, sleeplessness, muscle spasms, pain and twitching too, and understand only too well, what your hubby is going through. My specialist has me on Sinemet, and has had to adjust dosage several times, over the years. It has been my experience, that Parkinson’s is a very complicated disease, that affects everybody, who has the misfortune to have it, in different ways, very much dependent on where in the substantia nigra, and other areas of the brain, neurodegeneration occurs. It’s like it’s, perhaps, a number of disease processes in one. Since my PD has progressed over the years, nearly every system in my body has been affected, slowly, gradually. I have problems with walking, balance, swallowing, digestion, urination, constipation, muscle spasms, stiffness, freezing in place, hearing, eyesight ( blurriness and double vision ), peripheral neuropathy, foot dystonia, toes curling, pain, headaches, autonomic system ( temperature control, heartbeat irregularities, situational awareness ). Enough of my complaining! Importantly, I concentrate on what I can do, not on what has become very difficult for me. I do specific exercises for Parkinson’s each day, given to me by my local Parkinson’s association. I am on a Mediterranean diet, and take vitamin supplementations. Best wishes to you and your hubby!
Thanks! I do all I can with the diet and supplements but it’s hard to get him to do useful hand and arm exercises. Walking has never been a problem.
He has developed a very negative outlook too recently about what a burden he is and how everyone would be better off without him. This is particularly bad in the evenings. All the family tell him it’s not true and we need and love him but he won’t be convinced. Probably why he is so set on ending it all which is quite frightening for us all. I’m pretty sure the meds are doing that to him.
I noticed you mentioned he’s on clonazepam and you haven’t noticed problem and thinking about increasing the use. However this drug is well known for causing psychological changes including the below-
“Clonazepam can increase the risk of suicidal thoughts or behavior (thoughts or actions of harming oneself). A person should tell their doctor if they have worsening depression, suicidal thoughts or behavior, or any unusual changes in mood or behavior.”
Yes, but of the things he has tried it has in the past been the only one that calms him and doesn’t seem to cause agitation or suicidal thoughts. He has tried SSRIs sertraline and fluoxetine which made him manic, agitation, compulsive and suicidal
Mirtazapine that made him so sluggish he would not get up or do anything
Zopiclone for sleep made him so confused he didn’t know what was happening
Quetiapine seems to be doing the same as zopiclone though not quite as badly.
Clonazapam just seems to calm him. He only takes 1/4 to work and the doctor said he could take 2 x 3 per day which is 24 x that dose but he only ever needs 1/4. He is an extreme reactor to meds.
He has previously tried various herbals none of which seem to stop the anxiety. Eg kava, passionflower, St. John’s wort seem to cause agitation so I guess they act like ssris.
Im not sure what else to try as not taking anything is causing suicidal thoughts too
Have him switched from tamulosin to one of the other zosines They say that the other zosins don't make things worse in PD compared to tamulosin. jci.org/articles/view/145112
The gp has referred him to a urinologist now so he is waiting for his appointment. He only took 2 of the tamsulosin in the end as he was feeling so bad.
Depression can also, be a symptom with Parkinson’s Disease. B1 vitamins and COQ10 supplements seem to help me. Importantly, your hubby needs to feel that he is not as much a burden, as he thinks he is, to the rest of the family. When I start feeling that way, I challenge myself to do more, than I realize I can do, to help myself. Not everybody can do that. It takes motivation, and with apathy being a symptom for many of us with PD, getting motivated can be very difficult. Having something to look forward too in life is of utmost importance. Somehow, you need to find a way to encourage that. It is a basic need for well being, according to the Maszlo hierarchy of needs. I realize it’s incredibly difficult for one to feel good about oneself, when their body seems to be ‘ falling apart’! PD is very difficult for many people, who are debilitated with movement/motor symptoms, and, as it progresses, it becomes disheartening. I see a lack of support, from medical professionals, in helping Parkinson’s patients, navigate living with PD, in many cases. Neurology/Movement Disorder clinics, at some medical institutions, addresses these issues. Patients benefit from the clinic approach, but, unfortunately, they are few and far between. Again, I would recommend seeing a movement disorders specialist, who could do a complete re-evaluation of your hubby’s myriad problems, a physician who would address your husband’s apathy and depressive feelings about not wanting to be a burden and may not see reasons to keep on keeping on, in life! Good luck!
Thanks, he has been on B1 and other b vitamins and ubiquinol for a few years plus other things and all was well for ages. His hands don’t work and he can’t sit still so can’t do many things he used to like. He never had many interests to be honest, just an obsession with bridge and he now can’t go as he can’t sit still or hold the cards so he is always playing online now which certainly cannot have helped. He likes watching sport but can’t sit and watch tv without being agitated. He has nothing to look forward to it seems and doesn’t get enjoyment out of anything except eating and that is curtailed slightly because he isn’t allowed things he wants to eat and has to eat what’s good for him. The have an occupational therapist on the case now but haven’t met her yet. Also he is booked to see a psychiatrist but not sure how much help that will be. He is not into discussing himself we’ve tried that before and he didn’t enjoy it. And the drugs make him worse. In NZ services appear to be very sparse.
1. Your dedication and resolve are absolutely admirable. You may well diminish your efforts because you think "of course I would do all this, I would do anything i can for him until the day one of us dies", but know that many spouses of PwPs have struggled to step up to the plate in the fashion that you have. Some just can't do it. So it's a bigger deal than you think and I hope you have people in your personal life that recognise that.
2. Have you considered stripping back everything he is taking and starting again from scratch? And I don't just mean meds. Supplements also? Obviously your doctors should be involved in this process because it may be dangerous, especially regarding prescription medication, but reading your profile and your comments, I can't help but think that he has been on a decent number of things at any given time and tracking interactions/efficacy/side effects would he very difficult if not impossible. There's also the snowflake aspect of PD. Just because some PwPs have reported a benefit from taking [x], does not mean that other PwPs won't actually experience a detriment from that very same thing. Levodopa is a good example: some report close to 100% symptom alleviation and no sides whilst others report only unpleasant sides and therefore stop taking it.
3. I'll preface this by saying that
park_bear has some high quality information (sorry i don't have a link handy) regarding the risks surrounding what I am about to ask about and you should absolutely absorb that information before you proceed down this path because your doctors probably won't cover the topic adequately.
Has your husband ever taken a dopamine agonist? I had a look at your profile and couldn't see any references. They reason I ask is that there's reasonably high quality evidence that suggests that DAs are effective at treating PD related depression and apathy.
They are serious meds and come with genuine risks but at the moment your husband's situation sounds equally serious with the suicidal ideation you describe and what sounds like a general level of misery.
Hi, I have several times reduced and removed and varied supplements and recently stopped all of them again for a few days to see if it might help as I’m always concerned I might make him worse but it always makes him feel worse not to take them so he quickly wants to take them again. The ones he has been on for a while seemed to be working like magic for most of last last year then he started going downhill late last year which is why I think it might have been the vaccine bringing back the inflammation and then the anxiety. Then the current situation seems to be adding the additional meds and increasing levodopa. He hasn’t tried a dopamine agonist. He takes 1/4 x2 procyclidine which is an anticholinergic but otherwise has just been on 3x 62.5 madopar for a couple of years.
Looking at his genetics I can see why it doesn’t work and why ssri don’t work. He has high dopamine beta hydolylase activity which I think means dopamine is quickly converted to norepinephrine which creates all the fight and flight symptoms, and other toxic biproducts. That’s why I don’t think more is helpful. So maybe an agonist might work if it slows the breakdown of dopamine? Is that what it does?
I think I really need to get him off the quetiapine as it is making him sluggish all day so he struggles to walk and that has always been what calms him down. Clonazapam hasn’t seemed to have bad effects on him so far so I might try and phase out the quetiapine and replace with clonazapam. Again he takes such a tiny bit doctors reckon it shouldn’t work but it does seem to.
I am a bit worried about anything that cause obsessive behaviours as he already tends to obsession. Fluoxetine and sertraline made him manic ie he wouldn’t stop eating , took money from our credit card to gamble, was speeding when driving and trying to overtake everything in front of him . Then he became suicidal before he came off them. He is already obsessive with bridge playing online. And has ocd tendencies, always has.
““We examined polymorphisms in genes encoding the catabolic enzymes catechol-O-methyltransferase and monoamine oxidase A. Subjects with monoamine oxidase A G/T polymorphisms (rs6323) coding for the highest activity form of the enzyme (G or G/G) had a significantly lower magnitude of placebo response than those with other genotypes.” – J Clin Psychopharmacol. 2009 Aug;29(4):372-7. PMID: 19593178
This was a huge find! It basically proves that anyone with MAO-A rs6323 +/- or +/+ for the T allele has slowed activity of the enzyme (if you don’t have a G allele, then your MAO-A is slowed down). This means conversely that those with MAO-A rs6323 -/- on the variant report have the high activity enzyme – aka the normal enzyme and the G/G genotype. MAO systems exists outside the brain in cells like RBCs and thrombocytes. But in the brain the MAO system is inducible. Anything that injure mitochondria such as oxidative stress, toxin exposure, and the aging process in general will cause an increase in MAO activity regardless of genetics. That is what inducible means, it can increase due to environmental signals regardless of the genetics – a key point to remember!
Aging is equivalent to DNA damage and as mitochondria are destroyed int the brain from toxins/stress/malnutrition then we are effectively aging faster. These effects plus SNPs cause increases in enzyme speed of the MAO system, esp. MAO-B (less clarity when it comes to MAO-A but likely same pattern since molecularly almost identical). Repeat: aging, inflammation, toxins or anything else that hurts the mitochondria will INCREASE the speed of both MAO-A and MAO-B. MAO-B is found mostly in the brain and therefore is more important with neurological issues like Parkinson’s disease, where it has long been known that MAO-B is sped up! The take away is that its all about MAO system going too fast and causing problems.”
Ok, we haven’t tried matcha. I have allimed which is allicin concentrate he has had before. He used it with berberine to great effect to get rid of roseacea and acne. We do have garlic most days in food.
Oh, matcha is green tea? There is green tea extract in restore gold. He takes 10/16 of their dose so 250 mg per day.
Obsessive behavior, rumination, anxiety, and some of what you describe may indeed be related to his elevated norepinephrine level. Here's a thought worth trying. I don't know when he's taking all his supplements, but have him take them during the earlier half of the day as much as possible, especially if above the RDA amount. D3 supplementation should definitely be in the early half of the day, ideally with a fatty meal to increase absorption or it may trigger insomnia.
Look into adding L-Theanine which may help reduce norepinephrine level, but discuss using it with your husband's Dr although it is a safe OTC. Take it before bed empty stomach, at least 2 hrs after a meal at 200mg.
Hi yes he takes his supplements early in the day. Yes I agree the dopamine is converting to norepinephrine too quickly. His genetic profile says that’s what will happen and it does . All his symptoms agree with that. But try talking to nurse or doctor they don’t seem to know about the mechanics of it. They seem to just scattergun try drugs until something works with no science. So frustrating.
I have some theanine 100mg I bought a while back that I haven’t tried yet. He has taken inositol in the past and that worked for a while. Asking the doctors is pointless. They have no knowledge of supplements so I might just try it.
I am going to try the light again tonight. I feel like night is a trigger so last night I put on his sun box when his panic started and he calmed down enough to sit down for an hour although he said he didn’t feel any better he certainly appeared to be feeling slight calmer. The night sleeping pill set him off again though..
Actually it says it affects seratonin and dopamine pathways so I might just start with 1/4 capsule and see if there is an effect just in case he has a bad reaction
Yes, it's smart to titrate up to see the reaction just in case. The lowest dose shown to increase calming alpha brain waves is 50mg. A cup of tea will have around 25mg of L-theanine.
He takes restore gold the Parkinson’s formulation and it has green tea so I wonder if he is getting some already. He only takes 10 instead of 16 so I that’s 250 mg green tea extract a day.
I'm not qualified to comment on these issues and have no experience at processing this information. Regarding your fear about drugs that may drive impulse control issues I am similarly unhelpful because I just don't know enough about the possible range of causes and whether one thing may work even though it seems like it shouldn't. Sorry 😔
SharonCrayn might know these things. She is an efficient communicator to say the least. She doesn't post much anymore but if you PM her she may try to help out.
Yes it’s in the Hardys 3x6 mg plus he has a bottle of water each day with an extra 25 mg. Interestingly his genetic profile says avoid methyl as he is in danger of methyl trapping. But the folate is methyl folate and calcium foliage in Hardys.
I’m suggesting B2 at hundreds mg up to 400mg, not just a few mg around RDA. Does your husband have very dry/cracking lips? Try high B2 and see if it helps.
Edit: I see from the posted photo report that it's homozygous rs6323. He would benefit from TMG or SAMe (also helps with mood) supplementation for methylation support, especially when dosing extra B3. It's possible that he's undermethylated, and be sure he's not deficient in B12 by supplementing sublingual B12 to bypass intrinsic factors to avoid methyl trap.
Ok that is a lot of b3. I think I have a 100 mg tablet. I could try that. The printout of what to avoid from opus specifically says avoid methyl so I was thinking TMG would not be suitable? I did buy some ages ago but didn’t give it to him for once I got the report.
There is b12 in Hardys 1200 mcg per day but it is swallowed so perhaps it isn’t getting in. It is in adenosyl, methyl and hydroxy combo. His last b12 test he was right at the upper end but he hasn’t had one for a while. He has never had dry lips.
I have got some 1000mcg methyl and hydroxyl b12 subliminal in my cupboard. How much is too much?
I’m actually thinking it’s more the fast dopamine beta hydroxylase that is his problem, making noradrenaline out of the dopamine too quickly and dumping it all at once. But also he seems to be losing more weight even though He appears to be eating plenty so I’m wondering if he isn’t even digesting properly.
B2, not B3 you mean. Yes, for MAO SNPs, you could benefit from high dose B2 200-400mg, and of course, continue other B-complex, ideally separated to avoid competition. TMG will utilize the alternate BHMT pathway for methylation support. Also, try increasing foods naturally high in choline (not choline bitartrate sup) in addition to increasing fat to help gain weight. If his renal health is good, then you can also try supplementing creatine. for extra help. Ubiquinol can really boost renal function as well and most elders will benefit from supplementation. Sublingual b12 tablets are easy to cut in pieces, so try splitting them or 10K should be ok. You just need to be cautious of folate, but he probably needs methylation support, especially with his homozygous rs6232,
Great thanks. Yes I meant b2 sorry. He takes ubiquinol. Wow that is a lot of the vitamins. So choline would be eggs? Meat or fish we have every second day. Eggs a couple of times a week. I’m always torn between giving enough protein and too much. Maybe he needs more.
Do you think it is this gene causing problems? His last blood tests were a couple of years ago and all normal . If this gene was malfunctioning what would be the signs?
It might not be this. He has been taking the Hardys daily nutrients for 3 years now and after that all his bloods have come back normal for folate, b12, inflammation but maybe he needs to test again as I think the vaccine has knocked him out of kilter. I think his main problem is the dopamine beta hydroxylase activity being high . I think this turns dopamine into norepinephrine too quickly which creates agaitation. Does the rs 6323 play a part in that?
Their comment “high dopamine beta hydroxylase activity” bad outcome
Certain genetic defects can certainly exacerbate age-related degradation faster than others, and I would definitely take note of homozygous results. His genetic SNPs certainly don't help, but also tend to be cumulative factors for most people with lifestyle choices - diet, exercise, alcohol use, etc. Yes, try to increase eggs to put on weight (1-2 eggs at a sitting) since his choline requirement may be greater than others and will also contribute to methylation.. Also consider brussels sprouts, cauliflower, etc.
Noticed your edits. Yes, I would consider at least checking his homocysteine level along with bloodwork.The rs6232 homozygous defect means he does NOT degrade catecholamines well and is associated with heightened aggression, drug addiction (nicotine as well for AADC defects), and mood disorders.
Here is an organic acid analysis he had done a few years ago when he first felt bad before any treatments or supplements. I suspect he now has the same issues but can’t afford testing again. He has low homovanillate.
Just looked up DBH on wiki and looks the two pathways dopamine can be broken down lead to norepinephrine, or 3-methoxytyramine which breaks down by mao to homovanillate.
Am I right the Maoa fault is leading to slower breakdown of seratonin , dopamine and norepinephrine hence the need for b2 and his Maob fault also leads to slow break down of dopamine? Increased Maob leads to age related decline so I guess we don’t want to inhibit either of these as they are already slow but slow maob seems to be a good thing so do we really want to speed them up? It’s quite confusing.
As it is it seems everything is going down the norepinephrine pathway which turns into adrenaline using PNMt (Phenylethanolamine N-Methyltransferase is the enzyme that catalyzes the transfer of a methyl group from S-adenosyl-L-methionine (SAM) to norepinephrine) then do we need to speed up the mao to convert some homovanillate to excrete through the urine? As far as I can tell his COMT is normal but if the DBH is fast but it’s getting bogged down at the mao I presume it’s shooting it all down the adrenaline route?
Not sure if the DBH can be slowed or if the mao went faster whether some more would go down the homovanillate route and be excreted?
Wiki says “Unlike many other hormones adrenaline (as with other catecholamines) does not exert negative feedback to down-regulate its own synthesis.[84] Abnormally elevated levels of adrenaline can occur in a variety of conditions, such as surreptitious adrenaline administration, pheochromocytoma, and other tumors of the sympathetic ganglia.
Its action is terminated with reuptake into nerve terminal endings, some minute dilution, and metabolism by monoamine oxidase[85] and catechol-O-methyl transferase.”
so there is the slow mao causing it to build up again and comt dealing with it all?
Or am I completely confused😅
Ps I can see vanilmandelate is high so can dopamine be converted to this instead of the homovanillate? It wasn’t on the first diagram I looked at but wiki says it is the primary metabolite of dopamine
(“Vanilmandelate (VMA)
Vanilmandelate (also known as VMA) is the primary metabolite of norepinephrine and epinephrine (adrenaline). The adrenal gland makes cortisol and DHEA as well as norepinephrine and epinephrine. When adrenal hormone output is generally low, VMA levels may be low. If HVA levels are significantly higher than VMA, there may be a conversion problem from dopamine to norepinephrine. This case can be caused by a copper or vitamin C deficiency. The enzymes COMT (methylation) and MAO are needed to make VMA from norepinephrine. If these enzymes are not working properly, VMA may be low when circulating norepinephrine and/or epinephrine are not low. Low levels of norepinephrine and epinephrine may be associated with addictions, cravings, fatigue, low blood pressure, low muscle tone, intolerance to exercise, depression, loss of alertness. When the body is under physical or psychological stress, VMA levels may increase. Because dopamine gets converted to norepinephrine and ultimately to VMA, the list of medications and supplements that increase HVA may also increase VMA. Elevated levels may be associated with feeling stressed, aggression, violence, impatience, anxiety, panic, worry, insomnia, paranoia, increased tingling/burning, loss of memory, pain sensitivity, high blood pressure and heart palpitations.
If VMA and HVA are both extremely high, it may be necessary to rule out a neuroblastic tumor.”
Seeing the high a-Keto-b-Methylvaleric, I encourage you to definitely try increasing the B2 to a high dose to support methylation and possibly add ALA to help the dehydrogenase activity.
Try not to overthink this - there's no way to know exactly what's going on from a few SNPs while there could be compensating genes and without testing the neurotransmitters, and even if you do, you cannot easily alter brain chemistry.
Since his VMA and HVA are not both elevated, I wouldn't worry about neuroblastic tumor. When VMA is high, it usually means he's in mental or physical (toxin) stress. Do you think he's digesting his foods properly? Any signs of GERD? - #2 shouldn't show too many undigested bits. Is he eating enough proteins for adequate tyrosine?
For digestive help, look into Betain HCL supplement such as below.
Also try to see if you can offload any excess supplements that may not be needed and reduce any overlap between multiple products such as Retore Gold, Hardy's, etc. Perhaps you can simply replace Restore Gold with Tudca such as below? It may prove more economical while offloading his liver/kidneys.
Ok thanks. I enquired about any sign of undigested food and he says it looks normal now his constipation is cleared.
I asked the companies that make restore gold and Hardys if there is an overlap problem when he first started taking them at full dose and it seems they fit together quite nicely. Hardys has some of the same things in its proprietary blend but they are in quite small amounts. There is 1g per day of the proprietary blend that has some ALA,acetyl carnitine, NAC, grapes seed but also many other things so the double up is small and he is only taking on 10/16 of the restore gold so probably over all he is getting less of them than just the restore gold full dose would. Maybe that is then not enough tudca (750 mg) and tyrosine 1000mg.
Restore gold 10/16 dosage has 250mg ALA. how much does he need?
Protein we eat meat or fish every second day (160g) and beans, lentils or chickpeas or paneer, eggs every other day. Is that enough?
I have digestive enzymes but he keeps forgetting them. Would they be helpful? It has beating hcl 200mg each serve. (NOW super enzymes)
Other supplements are mainly extra of the b vitamins on genetics report that are recommended and liposomal c, And ubiquinol with pqq, fish, krill and hemp oil. Citicoline, umPEA, 5mg lithium orotate, citrus bioflavonoids, astragalus root 500mg(1/3 dose). Any problems here?
I have TMG too but nervous about methylation issue
OK, those are more than enough. If he doesn't have GERD, is not constipated and #2 is fine, then that sounds fine.
For his sluggish MAOA, look into Ashwagandha, Ginko Biloba, and avoid too much asparagus. Korean Ginseng may also help.
For every mg of B3, you should supplement equivalent TMG. I don't believe he should avoid methyl donors and is probably not schizophrenic so no need to avoid them. HD B2 will help mitigate potential overmethylation issue.
Does it seem he falls into this category? If his rs6323 ++ means mao is running slower is he a ”patient in whom sympathomimetic amines are contraindicated”?
Should he add more b6? Maybe it’s being degraded even further by the madopar?There is 3x 20mg in the Hardys per day as pyridoxine - 5- phosphate and pyridoxine hcl
Ok. I tried one myself yesterday and they are pretty foul with a peppermint overlay . Will try and persuade him. Yes, I am worried about the madopar destroying all his b6 needed to function. The drug sheet says b6 isn’t an issue as the benzaramide destroys it so it doesn’t interfere with levodopa. No thought of how body works then with no b6!🧐I have seen study on too much b6 causing neuropathy but also preventing it in lower doses so a bit worried about overdoing it. His hands don’t work very well, haven’t for years, so could that be b6 issue? Maybe b12? Or is it just a case of him never having done anything in his life requiring manual dexterity so brain deciding it’s an unnecessary function it can get rid of?
I use this brand and it tastes good, but currently out of stock it seems. Look out for it. You can easily halve or even quarter it. amazon.com/gp/product/B00VX...
Is his second toe longer than the first? Morton's toe is also a phenotype for b6 enzyme deficiency.
Any thoughts on Ceylon cinnamon ? Rhodiola rosea? He was taking rr when he was feeling good but stopped when started sleeping pill / clonazapam as didn’t want to risk interaction. Not feeling as much energy now, legs like lead weights.
I've been using Ceylon cinnamon for years, but don't take it daily but rather use it in cooking, and in fact, just used it tonight for dinner. I believe in cycling spices as much as possible. Rosemaries, oregano, cloves , parsley (apigenin to help NAD recycling by CD38 downregulation), etc., - all good. You might want to rethink Rhodiola for your husband since it's a potent MAOA inhibitor, but then it has adaptogenic properties so you should go by how he feels with it.
Ok ,well he was feeling very well on it for about 9 months, he seemed to be getting even better by the day until this rather rapid decline so he hasn't taken it for more than a month now as a precaution. Maybe he is missing it now. .But if it is an maoa maybe better not
OK, I see he is homozygous for C677T A/A here, with severely affected gene function for MTHFR. So as discussed, yes he would benefit from extra choline from foods as well as TMG. SAMe and Creatine are also options as mentioned before and definitely check for homocysteine regularly. HD B2 will help mitigate the issue for overmethylation. I would suspect that he's been severely undermethylated more than not, especially with B3 supplementation. I would not worry about other heterozygous results since he just might be a carrier, but if you haven't already you should definitely test for the vitamin D test to verify adequate serum level.
Ok thanks. Last time his d was tested he was over the top of the “normal range” compared with very low before he started on the Hardys so I think it is/ was topping him up previously. But he hasn’t had those bloods tested for a while . The doctor seems reluctant to send him for tests for things that he tested normal for last time but I might need to get insistent. It’s free if the doctor prescribes it but pretty expensive if I get them privately. Insurance won’t cover these I think but I will have a double check. I think they should do another full bloods again. I suspect health budget is stretched here and they’ve been told not to do too many tests.
Yes 5g or less is a good start. Just be sure he drinks enough water.I agree that homocysteine should be tested regularly for PWP, and you should insist on it.
Rescuema, if he has MTHFR, should he make sure to avoid folic acid added to many foods? Maybe his diet is so clean that is a non issue. And would supplementing with phospholipids be possibly good? It’s fascinating to read this exchange. This change is so sudden. What a mystery. How?
I am very careful to avoid folic acid for this reason and we have pretty much nothing processed except gf bread and vitasoy protein extra soy in coffee which has the least additives I could find, Maybe he has an unrelated other disease or the vaccine
From what's been mentioned, the change came on after the Covid vaccine, and I wouldn't doubt it but rather not digress... Yes, supplementing phosphatidylserine can be helpful but I think HD B2 will help for methylation support (methyl acceleration will deplete b2) as well as sluggish MAO, ideally divided 100mg doses up to 400mg, and the benefit should be noticed in 2-4 weeks if not faster.
I had forgotten that was the root cause. Thank you. I believe Covid increased my symptoms to the extent that I was diagnosed with PD. Thank you for clarifying. Since he is such an extreme responder and averse to anything perceived as woowoo like meditation, I wonder if Brain Tap would be sufficiently not woowoo. It is used by corporations and schools.
Interesting. I will look into it. At the moment he is hyper sensitive to noise light, warmth, (almost like autism traits) so would not enjoy it at the moment but it might help once he is back on the level.
I am not sure if the vaccine did do it, maybe it was something else. Stress from teenagers being noisy and reckless maybe but who knows.
I’m wondering, have you researched sundowning? You can have sundowning without having dementia. Causes are not fully understood but lifestyle factors can help reduce it. Would he be willing to try yoga nidra (not yoga and recommended by Dr. Andrew Huberman of Stanford.) additionally, he recommends an ap called reverie
I have read a little about it. It does feel the night brings it on. Or dinner. During the morning he plays bridge on line to take his mind off it but at night he can’t sit still or get comfortable in any position. He is very resistant to any therapy or new thing he has to do for himself. We did qigong on line for a while but then one day he point blank refused to do it any more. I will look up that app thanks. Problem is any kind meditation type activity he will not give a chance and says it won’t work for him. Also therapy, CBT etc . He went on a course and dropped out after a couple of weeks.
Ok, looked at reverie. I will ask him but I am pretty sure it will be a very emphatic no. He is a very black and white person and never had time for “airy fairy” (in his mind) types of activities and I’m pretty sure he will class this as one! Probably half his problem to be honest as he bottles emotions and won’t talk. They are sending him to a psychiatrist since his suicide intentions have become very intent but he has no time for them either so not sure what it will achieve.
Oh wow , no he is on 12.5 mg. But being such an overreacted it might still do the same thing as I think he doesn’t clear drugs well through his liver so it could well build up
Is it just me or is there anyone else out there who thinks these drugs are actually bringing on the PD???
My Dad had a very very bad period that coincided with taking quetiapine. He was very depressed so he was prescribed it. Once on it he became violent. When we took him off it, he went back to his prior state. Nothing else was changed in his care during that time.
Last night after trying to get some advice on what to do next and having no reply from any one medical I decided to try changing onto just the slow release madopar. It could not be worse than the current regime. So I gave him the SR at 3pm, 7pm, 11pm then 7am. I was not sure what the correct dose would be but he seemed to need something at 7pm and the reaction time is supposed to be much slower on the SR and it went very smoothly compared with the normal roller coaster ride. Around 8.30- 9 there was a moment of panic with neck tightening which scared him but it passed quite quickly and he got through the night with no panics and without waking me , hoorah! This morning a team of 3, a dr, intern and nurse rang at 9 saying they were coming at 10 and they stayed until 12.30. My endless texts to the specialists nurse finally must have triggered someone into action! They listened to everything and agreed to change the script to slow release only , 5 a day every 4 hours. Now that is an increase from the 3 a day and even the 6 he was supposed to increase to which caused all the grief but he hasn’t had such a bad reaction to it as the instant release so still nervous, but the terrible peaks and troughs have been ironed out at least with only a short period of discomfort. So we will wait a few days before we know if it is still ok. Not perfect but ok.
I discussed the genetic tests with them. The young intern seemed interested and they didn’t dismiss it out of hand but I’m not sure if I’ve now got another crazy star next to my name on their list!
Yes. So in total seems more than before so hopefully doesn’t ramp up into too much once it gets to a stationary state but if it does I guess I can lengthen the time between if necessary.and I have the mucuna capsules I can divide into smaller amounts as an instant booster if there is still a bit of a trough because the slow release still has peaks but they are lower and more spread out . Hopefully we are on the right track.
He is scheduled to see a psychologist so hopefully just for talking not prescribing, and urinologist and I asked them to suggest that if there is a non drug solution for the prostate with his history he should have that as he has so many side effects from medication. I hope they suggest the laser treatment someone suggested the other day as a one off procedure with no drugs.
Compared to the 3 Madopar 62.5 IRs per day that he was taking until recently, 5 Madopar 125 SRs may seem a lot, but there are many PwPs who take more than that. I'm taking 6 Madopar 125 IRs per day, and have been for about 6 years.
I have not had the same reaction to Madopar IRs as your husband had. I get some dystonic dyskinesia if I take a dose greater than one Madopar 125 IR.
When pondering the cause of your husband's reaction, I think it might be important to consider the possible contribution of the Mucuna capsules he was taking up until the Madopar was increased. Stopping the Mucuna capsules does not immediately stop the effect that they have, as there is something called the long-duration response to levodopa (LDR), which can continue to have some influence for days (or even weeks) after a change in levodopa dosage. [1]
There is also the issue of exactly how much levodopa each Mucuna capsule provides, and how much gets to the brain without carbidopa/benserazide to help it.
[1] "While the short-duration response [to levodopa] (SDR) is closely related to levodopa plasma pharmacokinetics, the LDR seems to be associated with more complex pharmacodynamic mechanisms that take days to build up after levodopa initiation. It has been suggested that the magnitude of motor response to levodopa results from the combination of the LDR plus the SDR plus endogenous dopamine production by residual dopamine neurons."
The now mp has 60mg levodopa per capsule. I think less would be available to the brain due to the breakdown in the gut? Yes, so it could be like another 2 instant release per day? Good point.
Today with just the slow release he is feeling extremely fatigued and unwell and since the medication change s over the past 2 weeks he feels he has lost a lot of strength in his legs. Is that the quetiapine or changes in madopar do you think?
He is still getting some of the same side effects as the IR like stiffening at the peak and freezing as it wears off but to a lesser degree
Yes he needs them to do something with the prostate so he is on a list for a urinologist but it might be a couple of months.
He is feeling very unwell tonight. Did the slow release do that to you? The only other new thing is the extra b2 . He had 100mg yesterday and 200mg today extra. Hardys has 18 and he normally takes 25 mg in a water bottle over the day.
Regarding madopar: I've only ever used the immediate-release version.
Regarding prostate: Despite my having an enlarged-prostate diagnosis, urinary issues in general improved considerably when I stopped taking mannitol.
Regarding b2: Although I know nothing about b2 (see my list of supplements in my profile), I don't understand why you made this change, so soon after a major madopar change.
He was taking mannitol but I stopped that when he was not feeling well before visit to dr . I had run out of the synuclein one and it isn’t available now. He changed to bulk supplements one a few months ago which was the only one I could find so I had wondered if the different brand was a problem Stopping it didn’t seem to make much difference.
B2 is listed as a required supplement for nearly all of his gene SNPs. It says on bottle you can take 400 mg and studies say it is safe long term even for kids so hopefully not causing the problem.
So you haven’t had to have any prostate treatment?
Tonight he is very sorry for himself, still wanting to die. So unless this improves I’m not convinced madopar is the right thing for him.
I've not yet taken any action regarding possible treatments (drugs or operation) for enlarged prostate, nor for over-active bladder (drugs). I think it comes down to a personal choice based on an individual's perception of severity.
Regarding mood, it would be unfortunate if the major madopar change did not get a decent chance to stabilise, but it is what it is, and I realise that you have to take into account much more than just that.
It is always worse after dinner and last night dinner ran a bit late so his gap wasn’t big enough and it was awful. Other doses in the day are less of a problem. So I think we are going to have to change dinner time to an hour earlier to see if it helps
I am thinking about Green Light or Rezum outpatient procedure. A forum member mentioned that her husband (PwP) had the TURP procedure, if I remember right. His QOL improved significantly. My husband's main symptom is Nocturia and so far nothing seems to work.
Yes, he has tried different meds. Terazosin caused ankle swelling and he had to stop it. The doctor put him on another similar medication, but with no success. He is on Montelukast now, but that doesn't seem to work either. He gets up 6-7 times every night! He is tired and wound up the next morning. No constipation though so far. . .
His urologist's wife has PD, and he is very understanding. Hope he will solve hubby's nocturia. This procedure is his last resort to improve QOL.
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Night time medication
Is there anyone with DBS taking Madopar or Sinemet and then added Azilect?
