Very Frustrating battle: Hello my friends... - Cure Parkinson's

Cure Parkinson's

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Very Frustrating battle

RS313
RS313

Hello my friends,

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

37 Replies

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 😀

RS313
RS313 in reply to ruff1

i HAVE HEARD OF IT BUT IT IS STILL TOO EXPENSIVE MY DR SAID SINCE IT IS STILL FAIRLY NEW :(

ruff1
ruff1 in reply to RS313

Yes it us new fortunately here in U.K. the Parkinson’s nurse can prescribe it x

PDGal4
PDGal4 in reply to RS313

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.

Livin_MY_life
Livin_MY_life in reply to RS313

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

RS313
RS313 in reply to Kwinholt

I take 25/100 3 times a day of the ER i still get dykenesia even with the ER but not as bad as the IR C/L

Kwinholt
Kwinholt in reply to RS313

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

Kwinholt
Kwinholt in reply to RS313

And also B1 thiamine isn’t for everyone. It didn’t work for me but it’s worth a try and it might be amazing for you. Take care

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.

RS313
RS313 in reply to park_bear

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!

Grumpy77
Grumpy77 in reply to RS313

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

MGP201
MGP201 in reply to Grumpy77

What dose of thiamine every day?

RS313
RS313 in reply to Grumpy77

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,

Berylhorsey1
Berylhorsey1 in reply to RS313

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

Hidden
Hidden in reply to Berylhorsey1

Berylhorsey1,

Congratulations to you! It's good to hear you are doing so well on HDT! Please keep us updated on your progress!

Art

Cons10s
Cons10s in reply to park_bear

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.

park_bear
park_bear in reply to Cons10s

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!

Grumpy77
Grumpy77 in reply to park_bear

do you prefer motor impairment to tremor (the lesser of the two evils)?

if so does that mean rigidity dominant PD is more tolerable than tremor dominant PD?

park_bear
park_bear in reply to Grumpy77

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.

Despe
Despe in reply to sleezy

You could try B1 injections. Contact Dr. Costantini (I am sure you have read about him here on HU).

sleezy
sleezy in reply to Despe

Thanks for the advice. The shots would be expensive, but I will give it some thought. Thanks again.

hello Robyn have you tried levedopa dispersable ? they control my symptoms but i do take 10 per day =2x5 ask your GP and let me know how you react

RS313
RS313 in reply to mckchart

mckchart Dispersable? I have never heard of that.can you elaborate?

Sorry about your battles after such a short timel I am 6 years in diagnosed at 51

I take 9 sinemet sinemet cr and saphinamide I do get mild dyskinesia but bearable good luck

Is your doctor a neurologist who specializes in movement disorders? Have you gotten a second opinion?.

RS313
RS313 in reply to TazmanianDevil

Taz Movement disorder specialist.She is very nice and is really trying to help me but i guess i am a hard case.Hope she doesnt give up

Hi there- excersise is most important. I was diagnosed 3 yrs back and went for Ayurvedic treatment in India. The progression has been relatively slow.

jimcaster
jimcaster in reply to Prakash1

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.

iNizza con vit. B1. Contatta dott.Costantini.

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

MBAnderson
MBAnderson in reply to RS313

Robyn,

None of your comments would offend anyone.

Hidden
Hidden

Marc,

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.

Art

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

Art,

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.

Dr. C, here I come.

Marc

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