I recently wrote about meds that my Dr was having me try.
well since then i have tried requip and it was horrible! I was so sleepy that i couldnt function and i had some face flushing as well with it so Dr stopped it then i tried Azilect which i thought would be great but NO it gave me horrible dykenesia which i ahve had problems with since day one with the sinemet IR now taking the ER version which hasnt been controlling my symptoms as well.But cant increase it really because my Dr is afraid i will get worse dyskenesia! I am so afraid now that i wont be able to take anything that will help me in the future and i have only had Parkinsons for 2 years Has anyone had these troubles? if so what did you do? I need help here please.I already know about the B1 that is being used on here and have read alot about it but not really ready to commit to this yet. any help would be greatly appreciated
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RS313
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Have you tried Xadago? It’s an MOAB inhibitor like Asilect but is supposed to reduce dyskinesia, it has for my husband as well as extending his Stelevo so he has minimal ‘ off periods’ now 😀
Check the manufacturer's site online. They often can assist with cost. Or have your doctor inquire if nothing online. I take Rytary and Neupro; my co-pay would be about $60 each, but with manufacturer's assistance/coupons, I pay $10 for each. I am in the U.S. Don't know about elsewhere.
Frequently there are patient assistance Programs through the pharmaceutical company with reasonable parameters. you could also appeal a denial from your insurance and ask for an acception due to the side effects. Your doctor may Be asked to provide supporting documentation. Also, once you meet your max out-of-pocket medications are often covered at 100%. ( Or get to the other side of the donut hole) Depending on your insurance that could be a lot. But maybe not? I’m sorry, I don’t know what country you’re in ?? information on insurance applies to the United States
I’m sorry you are having such issues. I take Aziect ,cd/ld and Comtan . I was diagnosed 6 years ago at 49. I just now have mild dyskinesia and not on a regular basis . What dosage of cd/ld are you taking? K
Robyn, I too take 25/100 3 times a day but 2 at a time. Azilect with my morning dose . The afternoon dose I break in half each pill and take in two hour increments with my Comtan bc taking the 2 at once makes me so tired and sleepy and I work full time so I talked with my dr about my regimen and he is very supportive . Karen
To summarize, anything you do that increases your dopamine levels gives you dyskinesia. What this says to me is that you have enough dopamine. Parkinson's affects more than just dopamine. Prescription meds for Parkinson's are all aimed at the dopamine system. Non-dopamine issues are addressed by supplements. So my recommendation would be to get started with the high-dose thiamine protocol. Other supplements can also help, but one thing at a time.
My situation is similar - very limited levodopa tolerance, otherwise likewise I get dyskinesia. I used to be tremor dominant but that has switched to motor impairment. So I take very limited prescription meds, and am being helped by thiamine and other supplements.
yes i have some slight tremors too and it frustrates me that they always want to put me on new meds! I feel like a guinea pig. I have been waiting on the B1 thiamine thing because i have seen so many things tried and most are just fads that really only work short term.I am reading up on this and staying up with the many posts about it on here TY for your help and advice i really appreciate it so much!
You say B1 is a fad that only works short term. Well people's testimonies says otherwise.
Even then fact is that PD meds aren't that much better either.
PD meds do not cure PD
PD meds do not heal PD
PD meds do not reverse PD symptoms
PD meds do not slow down PD symptoms
For all its hassles and side effects PD meds only help you HIDE the symptoms
High Dose Thiamine B1 does a lot more than hide PD symptoms. But even if you are a B1 sceptic, you have nothing to loose trying, because unlike pd meds B1 has NO side effects, because its a water soluble. Excess B1 simply dissolves in water
Not trying to force you here, i'm just preaching, ultimately the decision is yours
No i said that there have been alot of things that were once things that really worked and then they fazed out(manitol for example) i have read about several things that at one time have been the "in thing" and they eventually were not a long term help.I am not bashing anyone who uses the B1 supplement and believe me i hate taking meds ,i just have to see it working for longer than a couple months to really want to try it. I am not bashing it by any means. It is something i have been watching and reading about since it came out.Ty for your input and hope you continue to do well with it,
I have been on thethiamin 2000mg andeach month brings a new improvement. Do some research, speak to your gp. Mine said it would do no harm so worth a try andtheresultsare fantastic
ParkBear do you have more information on “non-dopamine issues are addressed by supplements” as you write?
I’m asking because I’ve benefited greatly from B1 and Vinpocetine. I do get dyskinesia from Mucuna 40% some days. I take 2-3 capsules daily. My tremor is intermittent and mild, but stress can cause it to rear its ugly head. I have the PD hallmark symptom of slow movement at times.
Four neurologist told me I was in the early stages of Parkinson’s, but I didn’t allow them to diagnose me and refused medication. I felt I wanted some time to heal or think about it, and I’ve actually gotten better in the last year. I am pretty sure I have Parkinson’s and I’m in no rush to be diagnosed when I have 20 years to think about it. Funny. My life now unlike a year ago is also completely manageable and my daily schedule near normal.
I’m just wondering what sub-group of Parkinson’s I do have.
Only what we have already discussed. The one thing I can add is that high dose thiamine shifted me from tremor dominant and levodopa tolerant to motor impairment dominant and levodopa intolerant. The motor impairment had always been present to some degree, but I noticed it less when I had a lot of tremor.
Stress will aggravate anything, especially tremors!
Rigidity and motor impairment are different - I have the latter but rarely the former. Motor impairment is the lesser of the two evils, because it does not bother us when we are sitting or sleeping.
Sadly, some PWP (I am one) suffer from dyskinesia from the start with any kind of levodopa, even at very low doses. Amantadine is recommended for dyskinesia. Search it on HU.
I have had trouble with Sinemet because it makes me nauseated. I take an anti-nausea capsule (Trimethobenzamide) each time I take Sinemet. I took Amantadine for the shaking caused by Sinemet, but had a bad reaction to it (hallucinations and loss of balance). I tried B1 briefly, but didn't notice much improvement and got tired of trying to swallow the huge pills.
I agree that exercise is probably the single best thing we can do -- and the earlier, the better. Any newly diagnosed person who is physically able should get on a treadmill at least 3 times per week and get their heartrate to 80% of maximum capacity for at least 30 minutes per session.
Ty Marc for this reply!! Of course I would never want to offend anyone on here they have all been very supportive to me and I appreciate their advice and take everything into consideration I would love to think that this B1 well someday turn out to be the real deal I would love to see something that is not so harmful for us all to take and has so many side effects actually be something that is really going to help with our Parkinson's thank you again for your reply I appreciate your honesty and advise blessings to all on here during the holiday season and thank you for all your advice and well wishes
All I can do is suggest that you go back and read that thread in its entirety, because that was all based on one persons "opinion and not on any type of study", which the original poster admitted to. That was months ago and well before many people on this forum had given updates on their results. That poster has not been back recently with any "updates" of his own. Dr. C's clinical results show the opposite at an even more extreme to the positive side.
I've been there and I'm sorry , the thing that helped me a lot was the DBA surgery and now I'm dabbling in the b1 protocol, and did I. Mention I don't take any drugs, Good. Luck and let me know if that info helps
As I look back over the thread, I see my concern has been well covered. You've made several valiant efforts to get everyone to report their results and you've emphasized a couple dozen times that if people don't work in close consultation with Dr. C, they should not expect to get the same results others are getting.
I have been 1 of those people that has not worked closely enough with Dr. C and I believe that accounts for why I have sometimes thought it may have been helpful and sometimes thought it may not have been helpful.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Has anyone had these troubles? if so what did you do? I need help here please.I already know about the B1 that is being used on here and have read alot about it but not really ready to commit to this yet. any help would be greatly appreciated 
Why would different brands of mannitol affect me differently?
Newly diagnosed with young onset PD
Can someone help me....
Hurting 
