Increase in Carbidopa/levodopa causing constipation

[Mjm012649]

My husbands dose of C/L was increased to help tremors and stiffness. He was taking a 25/100 pill 4x a day. He started on increasing the two middle doses to 2 pills at a time. Within 2 weeks he was constipated badly enough to end up in the emergency room with an impacted bowel. Doc thinks it’s from the increase in dosage. So he is back to just one pill at a time again. Now his tremors are also back in force! It seems like he just can’t get a break. Wondering if you all have any thoughts or suggestions on this ....

[MBAnderson]

C/L causes constipation in many of us. Most probably take as much C/L as they need and apply therapies for the constipation - Miralax every 2nd or 3rd day or something similar. There are lots of home remedies that work fine for people. Each is different, though.

[rescuema]

C/L can worsen zinc deficiency through levodopa zinc chelation, and zinc is needed to regulate the potassium level where a K low level can worsen constipation. With C/L increase, your serotonin level also tends to decrease where its shortage contributes to constipation, sleep disorders, depression, etc. Also be mindful of b6 (also depleted by C/L), b12 and magnesium deficiencies.

It may be worth looking into tryptophan or a low dose 5-HTP supplement (start around 25mg and move up very slowly) along with Zinc (not too high < 35mg/day watching the antagonistic Cu level) and potassium & fiber rich foods. Magnesium should be supplemented by most in the US. Sublingual b12 and b6 (p5p) depending on blood serum test is also recommended.

5-HTP supplementation (for serotonin) must be attempted very carefully (esp with carbidopa) or through an aid of a nautropath since you may possibly depress dopamine production through competitive inhibition if not very careful.

sciencedirect.com/science/a...

michaeljfox.org/grant/5-hyd...

neurosciencenews.com/seroto...

[Mjm012649 in reply to rescuema]

Wow! Thank you so much for taking the time to answer. He does supplement B12, B6, and magnesium glycinate. I think I will look into finding a naturopath to guide us. Thanks for your thoughts and guidance.

[rescuema in reply to Mjm012649]

Yes, seeking a naturopath who specializes in PD will save you some headache.

In the meanwhile, if he doesn't suffer hypotension, try supplementing potassium citrate 1-3 times a day (99mg pills) to see if that helps, or try celery juice, along with a balanced zinc supplement such as Jarrow's Zinc Balance.

[park_bear]

Daily High-dose thiamine restores normal bowel peristalsis. It requires a week or two to take effect.

To restore bowel moisture either about 10 g of calcium ascorbate taken in drink over the course of the day and/or docusate sodium, as much as needed.

[rescuema in reply to park_bear]

I almost added B1 to the suggestion but her posts showed that she had already looked into B1 a year ago. In addition, although HD B1 seems mostly very effective short-term (to the point of causing diarrhea in some cases), it doesn't seem to keep up the effect after a while, probably due to another blocked nutrient. Any electrolyte deficiency/imbalance (including Ca overdose) can be a suspect.

[park_bear in reply to rescuema]

More than two years after starting high-dose vitamin B1, the dose limiting constraint in my case is excess bowel peristalsis. Works the same for me as when I started.

For increasing moisture, ascorbic acid works as well as calcium ascorbate. I prefer the latter because it is less acidic.

[rescuema in reply to park_bear]

That's great - it was probably your rate limiting factor. Also, I'd assume your 3hr a day Qi Gong probably takes a big part, as with any other exercises that provide similar benefit.

In my case, the B1 benefit for constipation was short-lived, and I seem to recall Hidden or other members mentioning the same.

[Leslim in reply to park_bear]

Does HD b1 good for stiffness dominant PD?

[park_bear in reply to Leslim]

I do not know. I suggest you post this is a question to the forum.

[Mjm012649 in reply to rescuema]

❤️

[johntPM]

I used to suffer from impacted bowel. I'd often go 5 days without defecating. I'd sit on the toilet for hours, unable to defecate, sometimes with the faeces poking out, but unable in spite of straining intensely to pass the stools.

I found a way that worked for me to get out of this situation. Every hour (up up 3) I would drink a pint (c 500ml) of warmed orange juice and a pint of water with a sachet of Movicol (a.k.a macrogel) mixed in it. After several hours the faeces would soften enough to pass, but it would still require intense straining.

It is better to avoid getting in this situation. I tried most normal approaches. They didn't work for me. Drinking lots of water helped, but wasn't in itself a solution for me. What does work for me is to take 1 sachet of Movicol every night. (I hate the taste of it dissolved in water, so I mix it with about 150 ml of kefir or yogurt.) Sometimes this is enough to let me defecate in the morning. If I don't feel the urge on the second day, I give myself a water enema.

I'm surprised that the increase of your regimen was to the middle two doses. Usually if one dose is increased this is to the first dose. This is because you have gone overnight without a dose, so levodopa levels are at their lowest as you take the first pill of the day. (Having said that some people report feeling well first thing in the morning before taking the first dose, presumably because natural (endogenous) dopamine has built up during the night.) Whenever you change your medication I would recommend changing the dose step by step (titrating).

John

[Mjm012 in reply to johntPM]

Thank You for sharing your experience. Every bit of information that comes from a similar situation is so helpful. It also helps us to feel we are not alone. That kind of support, in itself, is so comforting. I will def take your advice about titrating. And it makes sense to start with the first dose. Again, many thanks.

[rhyspeace12]

My husband had terrible constipation. He couldn't cut back on his C/L, but Miralax, and especially Linzess ,solved the problem.

[Kitefli]

Bitter Melon pulp about an 1/8cup with rest of the cup with room temp water every morning as helped my constipation. U can buy fresh BM at Chinese or Indian store or Farmer's mkt.

[windhorsepixy in reply to Kitefli]

Cooked or raw ?

[Kitefli in reply to windhorsepixy]

Raw and seeded. Pulped in Vita mix or other blenders.

[alexask]

A level teaspoon of Mannitol once a day keeps me regular. Vitamin B also helps

[Smittybear7 in reply to alexask]

What is. Mannitol?

[alexask in reply to Smittybear7]

A sugar substitute, an osmotic diuretic, which has helped some on this forum.

[Mjm012649 in reply to alexask]

So you use the mannitol in coffee or on cereal? And how much?

[alexask in reply to Mjm012649]

I take one level teaspoon in coffee. Others take a bit more. Search this forum, there is a lot of information on this

[Mjm012649 in reply to alexask]

Do you still take Carbidopa

[gwendolinej in reply to Smittybear7]

I don't think mannitol has helped my husband with constipation, but it's worth a try. He has prunes on his cereal, a glass of prune juice during the day and a protein powder. He also has a high fibre diet. It's all trial and error and very frustrating🙄

Mannitol is often referred to as a supplement, but Mannitol is used in hospitals for brain injuries and brain surgery and has been since at least the 1960s.

More research and is finally being done now. A big trial is taking place in the US into mannitol and Parkinson's.

It turned my husband's life around. His neurologist was so pleased with his improvement when we saw him last week that he has decided to cut down on his meds, which haven't been doing much for some time.

Good luck, something will work.

Gwendoline

[Mjm012 in reply to gwendolinej]

Thank you. That helps to clarify that the usual dose of Carbidopa is continued and mannitol a supplement. Do you start out with a very low dose of mannitol, like 1/2 teaspoon? How soon do you increase the dose? How long until you expect to see results? What symptoms/ issues would you see if the dose was too high?

[gwendolinej in reply to Mjm012]

Hmm.. My husband took 1tbs., as suggested in the information on the Syncolein site (and getting our wonderful pharmacist to check the research), but others have started with 1tsp. and got results. The pharmacist said that you shouldn't go beyond the 1tbs. dose.

We saw results within days and they were very dramatic. But others have been taking it for much longer before they see results. For some it has no effect.

My husband had extreme apathy and as on the bed most of the day. Within days, he was off the bed, communicating, reading, doing crosswords, his dizziness and fuzziness gone. He's kept improving. Of course, he's fitter now too. He's able to go to PD exercise classes. The dizziness stopped him before. His neurologist, who we saw this week, is very pleased with his movements, walking etc. , and his pull test also showed better results.

Good luck, keep us in the loop

Gwendoline

[Mjm012649 in reply to gwendolinej]

Oh!!! You give us help. Thanks for taking the time to reply. I may pick your brain again sometime😊

[gwendolinej in reply to Mjm012649]

Feel free to pick my brain, such as it is🤣. We owe so much to this site. If we hadn’t discovered it, my husband would be being treated as having dementia by now, which is where we we going before discovering Mannitol on this site. I feel obligated to pass on our experience.

Gwendoline

[Mjm012649 in reply to gwendolinej]

❤️

[LAJ12345]

You could try Hardys daily essential nutrients. It has a wide range of vitamins minerals and trace elements and other helpful compounds. It helped my husband.

[Rhyothemis]

I don't know what's wrong with me and I don't take C/L, but I had really bad constipation for quite a while and what has helped me most is teff porridge - a big bowl everyday. There is a downside - in California they put a Prop 65 warning on teff products meaning it has high levels of some type of carcinogen but they don't tell you why (what substance, how much of whatever it is). I'm going to keep eating teff since the constipation was becoming so bad I was becoming incontinent.

I still do miralax, broccoli sprouts, and benfotiamine (just 150 mg - I can't do HDT as it give me a rash) - they help, but they don't really fix the problem without the teff.

[CaseyInsights in reply to Rhyothemis]

Very interesting: the use of Teff for constipation📌

It is an ancient food, which has its origins in Africa, Ethiopia to be exact. It seems ideal for constipation as it is high in resistance starch - 20-40% of the carbohydrates in teff are resistant starches - ‘a type of dietary fiber that can benefit blood sugar management, weight control, and colon health’. It is also high in calcium and magnesium.

You really need to investigate the Prop 65 warning. However a noted health brand ‘Bob's Red Mill’ sells Teff.

Additionally ‘many of Ethiopia's famed distance runners credit teff for their endurance, and it's long been an important element in the traditional diets on the Horn of Africa’

Thanks for the find 🌺✌🏾🌺

[Rhyothemis in reply to CaseyInsights]

Right now there doesn't seem to be much Bob's Red Mill teff grain available (very expensive on Amazon, not available on Vita Cost). There is a prop 65 warning on Bob's Red Mill teff flour - but perhaps this site is in error since I don't see it on other sites:

webstaurantstore.com/bobs-r...

I had a high fiber diet before (even seemed to make things a bit worse in a way as the bulk would just accumulate) and I tried to eat a lot of resistant starch - cooked, cooled beans and grains, cold potato, etc. I don't know what's special about teff.

[CaseyInsights in reply to Rhyothemis]

What do you use to make your porridge - the grain or the flour?

Your link is to the flour, I had assumed the porridge was made with the grain.

Pray tell 🤓

[Rhyothemis in reply to CaseyInsights]

The grain; but I'm assuming they use the same grain to make the flour - but I could be wrong - they might use cheaper stuff for the flour.