Does anyone experience "chronic" nausea on their carbidopa/levodopa...my brother has been on meds for 5 years now....and has had chronic nausea for about 3-4 years. It's terrible.
One of the symptoms is the yucky, stomach feeling that probably comes from the meds which is there pretty much all the time, and the other is pain in the stomach that can be terrible - probably related to gas as there is a lot of burping and passing gas...perhaps from the slowing of the intestines...but it's so bad that it seems to cancel the effect of feeling good with the meds. He is taking Rytary 36.25 (145 mg.) , but neurologist is titrating down to one pill every 3 hours to get to the bottom of the nausea - We were at 3 pills every 3 hours...17 pills a day (2 pills in the middle of the night)... this week is 2 pills every 3 hours and nothing at night, ...next week will be 1 pill every 3 hours... so far, the nausea is still there, and seems just as bad...but now, walking slowly, head bent looking downward, no energy, feeling sick, likely to fall without a rollator, nausea, eyes are bothering him...but they want us to continue if we can- I understand why, to back up and take a look at what is causing the nausea- perhaps he was on too high a dose, but he feels terrible right now.
Any input? Thank you!!
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My husband has a constant stomach ache and the doctors think it is caused from anxiety. It goes away sometimes if he thinks of something else,but mostly he is hardly ever free from it. This has been going on for two years. No medicine changes have ever made any difference. He had a hernia repair, that didn't help. He is seeing a therapist now to try to help him breathe in a way that will fight his panic. He takes Rytary, but had it with Sinemet also.A lorazapam helps to calm him down for awhile.
Interesting but you mention anxiety because someone mentioned that it could be from anxiety. His anxiety is extremely high if something is put down on the counter that is a little noisy, it can really upset him..high sensitivity to noise. It's just so hard to believe that anxiety can cause stomach pain but I guess it's the nervous system causing Havoc. I will say his nausea is worse when he's low on meds. Thank you!
Yes, chronic problem for my partner on Rytary and when on Sinemet. His gets worse when the meds are wearing off or doesn’t seem to have enough medication it seems. It sounds like with your husband symptoms getting worse cutting back on the medication has made the Parkinson’s symptoms worse so seems he needs more or more dopamine. I can tell you the days that he is up and doing some form of exercise early whether it walking or biking those days the nausea is minimal. So it goes back to the fact that exercise exercise exercise is the key to Parkinson’s control. It realizes natural dopamine to control the symptoms. I know that’s very very hard to do when you don’t feel good but you have to or you’re miserable, and it continues to progress faster. Try going to Physical Therapy to get a good exercise program started.
After multiple test it was determined the nausea was related to the medication and Parkinson’s. The only thing that helps other than exercise is using CBD oil With THC. The vaping works the best but oil drops or in a gummy candy helps also but takes longer. We were dead set against medical cannibus but I can tell after researching and trying, it is a godsend!
Also what helps him between regular medication is natural L-Dopa pills if needed. You can find them at health food stores. I do think other supplements like B1 helps as well. You need to start experimenting what works best for him, sorry to say but the doctors will not recommend ‘non pharmaceutical’ or anything not fully proven but alternative supplements to Parkinson’s meds do indeed help. You just have to find what works for you!
You are absolutely right, exercise is the best medicine for him. He has to walk once or twice every day..we also go to the power for Parkinson's exercise classes that are in our area, but we need to do more of it. May I ask you where you get the l-dopa pills? We have mucuna pruriens in powder form, but it didn't seem to really help much, although I didn't give it a real chance either. Is that what you're referring to? If you have a brand that you would recommend, I'd appreciate the name. As far as the cbd with thc, I'd have to get a prescription for him...we live in Texas... probably the last state to make cannabis legal! Thanks
You can get CBD online easily. There are lots of bad ones tho. I use Cryptotherapy by nature’s script. (Careful...other products use that name so check the NS part to be sure you are getting hemp extract.)
Also Blue Bell rated by ConsumerLab as one of the best.
Oh thank you. .. but regarding the levodopa pills, is there a certain brand that you use? Mucuna pruriens is that what it is? We did get some CBD oil without the THC didn't really seem to do much but I will look into that further. Thank you so much for your input it really helps.
My husband was originally on macuna and it helped but had to be replaced by sinemet as the disease progressed. He then went on Rytary. They are all sources of l-dopa. I found the Rytary by far the best but the most expensive.
CBD seems to be a highly individual substance and dosage directions are scarce. I doubt that it will do anything for the movement issues of PD but it may help with anxiety. I take it for arthritis and was told to use one drop under the tongue 2x daily am and pm. It certainly helped but I have found that I need more. I now take 1/2 dropper 3-4x daily...that’s 25mg per dose(about 1/2dropper/1/2 ML)...since the efficacy Time is 2-5 hours, it didn’t make sense to not take during the day. Called the mfg and learned dose is weight dependent, then figured based on my weight, that amount would be about right.. Directions on bottle often refer to mL but that only refers to the amount in the dropper, not the mg. It doesn’t tell you how much extract is in the solution. One thing I learned is I don’t have to fear taking too much. Cancer patients use it in enormous amounts with no side effects.. as I said, there are good and bad mfgs. When you decide which one, call the company and discuss dosing.
i just added mucuna extract to my daily routine. i am taking mucuna extract by Protocol for Life Balance......400mg mucuna extract.....nervous system support..... 15 %
Natural L-Dopa.....90 veg capsulules. i was not sure of how much, and didn't have the desire to check it out, so I followed the instructions on the bottle - take two capsules a day. Have taken it four days - i feel fabulous. More energy, mind feels good, and and finger dexterity is slightly improved ( I am typing with three fingers this morning instead of one!) If you have interest call Wellness Rresources in Edina, Minnesota. 7155 Amundson Avenue Edina, Minn 55439 800-717-9355 952-929-4575 WellnessResources.com They also have with whom you can consult. I like this product because I don't want to use a powder, nor do I want to worry about %....and these are easy to swallow ( not too large ).
My husband had this but probably not from meds...from anxiety common in PD. Any excitement, even just having a visitor, even a little exercise would bring it one. He kept feeling like he was going to vomit. Terrible! Gingertrips helped a lot. Also GasX or Phazyme for the gas. Best overall to treat source...l-theanine, an amino acid, started at 100mg every 3-4 hrs titrated up in his case to 400mg every 3-4 hrs. (He and all his family were people who needed a bigger dose than normal) Calming. Also calming: oral lavender caps...made by Integrative Therapeutics. Wonderful. Troubles with stomach motility (food staying in stomach due to slow movement out into gut) are common in PD. l-glutamine, another amino acid, powder or cap. Wonderful for gut problems in PD or anyone for gut health. Better than laxatives. Docs used to say he was the only PD patient they had seen who wasn’t constipated. Fought this anxiety for 15 years, nausea for three years until was advised by alternative dr to use above. Also DMG is a chewable which stimulates stomach to produce mucus to coat the stomach which often thins out with age or illness. Chew 20 minutes before meals.
Hope this helps. It certainly changed my husbands life. He was on Rytary as well and it was a great med.
I am going to try the Donzim mentioned. I m giving my husband l-theanine but only 200 a day, I am going to up it. He has hemp oil, but it doesn't seem to help. We grow a little marijuana (legal in CA) and I ground some down and put it in chocolate and it calms ME down like Librium when I get overly frantic over being a caretaker. It doesn't seem to help him.
MY husband, who is gong to be 80, had awful psychosis which was treated successfully, but he still has the anxiety.
It helped him as an engineer to focus extremely , but now the focus is on his stomach and it is misery.
We went to a picnic with a social group last week and he suffered for days after that, having to talk to so many people. He can't handle any stress.
Wow, I'll have to print that out...lots of good and helpful info...thank you so much. We use l-glutamine and it really helps...l-tyrosine also...and for the nighttime, magnesium powder in warm water and it helps...and we do use gasx pills...but nothing is full proof and sometimes its hard to keep the nausea at bay...a full gut is a problem with him too....the motility issue as you mentioned. Nothing even tastes really well these days.
He's only 67, and always been health conscience. Its difficult to see him in so much discomfort, but his impaired cognition makes things even more difficult.
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