Recently, my husband experienced a distressing episode of extreme stiffness. He described it as a sensation of having someone squeeze him at the base of his brain (he had DBS in 2022), causing him to feel extremely stiff in his head, shoulders, neck and arms. In general, stiffness is his issue, but this was an extreme case of stiffness and numbness. This happened several times a day over the course of a week. We couldn't figure out why this was happening because we haven't changed anything with medication or setting on his DBS device. We called his neurologist and she recommended adding Azilect. Finally it dawned on me that for a week, I started putting Vital Proteins collagen powder in his morning coffee (thinking it would be beneficial to get protein in his diet and because it was liquid as opposed to a solid, it wouldn't interfere with his medication, which is Rytary and C/L time release formula). It was the only thing that changed, so I stopped giving it to him, and lo and behold, he had one last episode that afternoon, then nothing since. It has been about 3 days now and that frightening sensation has not been back. I cannot find anything on the internet about collagen protein powder causing severe stiffness and pressure on the brain. We are baffled but grateful he is back to himself. Has anyone experienced this? It's so odd... since he is back to himself, we decided not to add the Azilect.
Collagen powder and increased stiffness? - Cure Parkinson's
Collagen powder and increased stiffness?
Good detective work!
hydroxyproline is an amino acid in collagen powder. It converts to oxalates. Oxalates are found in many foods in varying amounts. Oxalates, in addition to causing kidney stones, can cross the blood brain barrier. Going on a low oxalate diet is a good idea imho.
Stay away from almond flour!
Thank you for your response. I will definitely research more into the info you provided! We have been eating some gluten free products, which means almond flour, so I’m going to stop that and see if that gives him some relief. He drinks primarily almond milk, so I wonder if that contributes to his stiffness…. I guess we’ll be going back to a Mediterranean diet! I so appreciate your input; it gives me a direction to follow.
I would definitely omit the almond products. And Gluten is a lectin. Eating gluten free is very good based on solid science that your GP and most nutritionists are oblivious to but replacing lectins with high oxalate foods is creating a new problem.
I recommend based on research and personal experience increasing healthy fats like olive oil, MCT oil, and an excellent quality fish oil like Nordic naturals liquid. This may help with stiffness and certainly has other benefits.
For stiffness, I highly recommend NAG, N-Acetyl Glucosamine which has other benefits as well and had a little study for PD.
A good magnesium is important and will reduce or eliminate cramping. But do not combine with pharmaceutical blood thinners.
Great information! Will definitely take this to heart. Thank you so much for your valuable input!
my husband had that symptom when he tried the slow release madopar. It was way too strong for him. Maybe the collagen is somehow enhancing the effect of the levodopa drug somehow giving him too much at once.
That’s also what happened to me too
Parkinson's is a maddening disease, just when you have hope something will help, PD will dictate otherwise. My dear husband trusts me so much, he will take anything I give him, or follow any protocol I suggest. Thank goodness I remembered I was giving him collagen powder. It's been a week and no more episodes.
Certainly is. Definitely good to write things down ie when a new thing is introduced, as it can take days or weeks to cause effects, good or bad.
Just remember when you have self doubts that the doctors just do trial and error on a range of drugs then don’t see him for ages. You are there monitoring all the ups and downs and he is your only patient! They have hundreds. It is scary though to be responsible as if something works well they will think it is placebo or the drugs working but if he worsens you can feel it is your fault. But it could just as easily be something the doctor gave him.
In your post you mentioned that because the collagen was a liquid and not a solid that it would not interfere with his medicine. However, any protein can interfere with medicine. Basically, only a limited quantity of protein is allowed to cross the blood/brain barrier. Any protein from food or liquids could reduce how much medicine (which is a protein) actually gets to the brain, where it needs to be in order to be effective.
I should clarify that it's actually the amino acids that are crossing the blood/brain barrier.
I was wondering about that. Thank you so much for clarifying.
Thank you for your information! Indeed, we learned the hard way that protein, liquid or solid, can interfere with his medication. I appreciate your input.
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