feeling almost good ...

[Lucal]

Things are going pretty well. Of all the things I do, maybe there's something that works and keeps parkinson's reasonably at bay. Or maybe I start to realize that a lot of what I felt was psychosomatic (for the moment at least) or maybe I'm not so sensitive to my symptoms anymore , can not say..... In recent days I spoke with a 50-year-old man who was diagnosed 14 years ago. He still plays soccer and is completely independent (after having had great problems with pramipexole). He gave me courage, I wanted to share it. Good day to all.

[Gioc]

Bravo Luca! I am happy for you!

[Fed1000]

Very well Lucal, you are stimulating us all. What are you doing with medications and supplements?

[Lucal in reply to Fed1000]

usual stuff i think. Supplements b1 , b3 , d ,c vitamins , plus garlic , turmeric , cinnamon , mannitolo , hericium ( it's a mushroom ) , bee pollen . A lot of exercise, and medicine I'm on azilect and 0,52 pramipexole

[Fed1000 in reply to Lucal]

Io take 1+1/2 cp Sinemet 100+25 which i'm trying to reduce further. I also take Mannitol. Even my dietician recommended me Hericium mushroom and B vitamins. I ordered Vinpocetina supplement which is said to be very good.

[UMass67 in reply to Fed1000]

Why are you trying to reduce your Sinemex? I am very new at this, and nothing I read seems to indicate the desirability of reducing medication. This is my first week, and I’m taking one sinemex tablet a day scheduled to increase to two at the end of the week. I already see some improvement in my small symptoms with one tablet.

[Fed1000 in reply to UMass67]

Because in the long term of continued use Levodopa causes significant side effects called dyskinesias.

[ion_ion in reply to Fed1000]

According to the latest tests the dyskinesia is caused by the PD progression and not by the long use of c/l. I'm taking 2 pills of 100/25 c/l a day plus 1.5g B1. Anyhow, it is not a bad idea to limit the use of c/l.

[Fed1000 in reply to ion_ion]

I do not agree with you ion ion, I am not a doctor but I have always known that the risk of dyskinesia is directly proportional to the increase in dosage and duration of treatment.

[ion_ion in reply to Fed1000]

Actually you agree with me at least 50%; increasing the dose is caused by the PD progression; the duration is irrelevant; some people get dyskinesia after few months, some after few years, some never.

[Gioc in reply to ion_ion]

Ion_ion,

Strangely enough after three years of b1 I recently had to reduce the dose of Ldopa by 50%, I do not know if it means an improvement or a condition of non-tolerance, but I feel better. I had a slight dystonia in my left foot at the peak of my dose.

It's too early to tell, I could easily get back to my earlier dose.

[Fed1000 in reply to Gioc]

Excellent GioCas, it is clear that it is an improvement due to B1. It would be great to stay with that alone.

[Gioc in reply to Fed1000]

hi Fed,

We must always be on guard because with these bodies of skin, bones, muscles and various organs, they will also be interesting, but there is always a new one.

I preferred robocop type, when you smash it, you have it repaired in the workshop.😂

[Fed1000 in reply to Gioc]

Very true. See you next time.

[bcowart in reply to Gioc]

How much b1 and IM or oral?

Thx!

[Gioc in reply to bcowart]

healthunlocked.com/vitamin-b1

[Juliegrace in reply to ion_ion]

This is true, but dyskinesia IS caused by levodopa, not the disease. I was off meds for almost a year. No dyskinesia. Many other awful symptoms though. I don't take meds after 6pm. After my meds wear off I have no dyskinesia for 10 hours until I take my first dose of the day.

[ion_ion in reply to Juliegrace]

How much c/l do you take daily?

And for how many years?

[Juliegrace in reply to ion_ion]

I take a total of 350-400mg per day. I've been taking it for 3-1/2 years. I've had dyskinesia almost from the start. I also get dyskinesia from mucuna.

[MBAnderson in reply to Juliegrace]

I hope everyone takes note of your comment.

[glenandgerry in reply to Juliegrace]

I would agree with you from observing my husband (PWP)

[MBAnderson in reply to ion_ion]

The sub-Saharan study is often cited as of final word and conclusive proof that it is the increasing dose, not the duration that induces dyskinesia, which makes this study a good example of why we should be cautious about making our decisions to take (Sinemet) or not to take (any pharmaceutical) based solely on a study. The fact is that some people have gotten dyskinesia on minimal dose after only a few weeks as was reported on this forum only a few days ago.

When it comes to Parkinson's, since there are many subsets each of which affects people differently, I interpret studies to mean the conclusions apply to most people, not every person and, therefore, we should pay very close attention to our own experience.

[UMass67 in reply to Fed1000]

Thanks...

[1rocketman in reply to UMass67]

Our doctor said and everything we read indicates that eventually your medication becomes ineffective... how long that takes for each PWP is individual, therefore, if you can take less medication and feel fine, you probably should.

[Kia17]

Keep it up Lucal

Kia

[ConnieD]

So happy for you !!😊

[Hidden]

I'm glad to hear this from you, Lucal!

You seemed to really be struggling for a while, so it is good to hear this news!

Art

[Toogood]

Does it calm your tremors...

[jeffmayer]

I think a positive attitude is better than any drug it definitely helps you focus combined with exercise fantastic just enjoy every day we know better than any doctor how we feel I think some of them read from a script most of the time

[glenandgerry in reply to jeffmayer]

I would also agree with you Jeff. It's just a pity that after 13 years with this horrible disease, my husband is no longer able to exercise, & he's presently in so much pain that it's very difficult for him to keep a positive attitude.

[Hidden in reply to glenandgerry]

Gerry,

Can you talk a little more about Glen's pain and what he has tried to reduce it?

Art

[glenandgerry in reply to Hidden]

Hi Art, well we are dealing with the NHS here in the UK so things move very slowly. However, last week at the hospital we saw someone who actually made sense and is getting the ball rolling (slowly). It would seem Glen's pain is due to a misaligned or degenerating disc in his spine touching or crushing a nerve. He's going to be referred to a different hospital for SI Nerve Conduction studies to see if the pain is emanating from his back or if it's due to peripheral neuropathy. In the meantime, he started taking Gabapentin today. He's also being put on a waiting list for a nerve root block injection. If all of that fails, he will have a Discectomy (but it will take at least 5 months to jump through the various hoops first).

During these past few months we have tried your suggestion of using ice packs. We followed this with a hot water bottle. We also tried rubbing ibuprofen gel into his sore foot and calf which was giving him the most trouble; and of course he takes a magnesium bath with essential oils once or twice a week. All these things help but only for a short while. He was also using the TENS machine for pain but that now seems to be making the pain worse so he's had to stop that for a bit.

He tried Sativa - the cannabis drug prescribed for MS but it made him a bit high and didn't help with the pain.

Thank you so much Art for all your helpful advice - you are amazing!

[Hidden in reply to glenandgerry]

Some people have reported using their morphine based pills and mixing them with lotion or cream, much like the ibuprofen lotion and applying it topically to the spine and other painful areas to good effect. I have not tried it myself, but it might be worth asking your doctor if this is something that Glen can try to avoid gastro issues associated with the stronger pain medications. This would also likely lead to higher local tissue levels of the active ingredient exactly where you need it. If your doctor agrees, this may hold Glen over until the surgery while giving him some needed pain relief and your doctor can have a compounding pharmacy make it up for you if it is not practical to do it yourself.

Failing that, arnica is an effective pain reliever that can be applied topically. This one seems to be fairly well rated on your side of the pond and may be helpful :

amazon.co.uk/Strength-Arnic...

As far as the ibuprofen lotion, I have applied that as often as needed to try and keep pain controlled temporarily.

I know it is more than difficult to get motivated to do anything when the pain level gets out of control!

Art

[JANVAN in reply to glenandgerry]

Hello, I don't know where you are living, but try perhaps with Cannabis...>>> there are some countries (Israel, Canada) where they already have done studies about that.

Also in Holland ( ) there are some guys who give already for years workshops how to use cannabis in all kind of forms (of course it is in dutch...).

And perhaps you can contact Ian Frizell on this Forum and check also

Parkinsons Pain

Rscott

Rscott•

2 months ago•14 Replies

I have what the Dr calls Neuropathic Pain. A burning discomfort in stomach and arms. Going to try Cannabis. Does anyone else have suggestions?

Greetings !

Jan

[glenandgerry in reply to JANVAN]

Hi Janvan, thank you for your tips regarding Cannabis. I just replied to Art about this. We did recently try Sativa (very difficult to get hold of) which is prescribed for MS but it made Glen a bit 'spaced out' and didn't help with the pain. Three years ago we were in South Africa and met up with someone who grows cannabis and makes their own cannabis oil. Glen rubbed some on his back and it seemed to help with the pain but we couldn't bring it back to the UK as we were travelling back home via Dubai! However, Glen's pain is much worse now than it was 3 years ago so don't know if it would help now. I also don't know the exact strain/type/mix of the product used 3 years ago.

I like the idea of attending a cannabis workshop in Holland (but not the idea of learning Dutch!)

Thanks for the suggestion of contacting Ian Frizell by the way

[Berylhorsey1 in reply to JANVAN]

I have been in the cbd oil which in the uk is the legal part of the cannabis. It has given me so much more energy and a reduction of pain. I then went on to 2000mg of B1 in addition and this makes monthly improvements. All good

[Xenos in reply to JANVAN]

I would - and actually did - try amitriptyline.

It is both a pain killer ( 1-75 mg), an antidepressant, and a candidate as a PD retardant. Did the job for me.

[JANVAN in reply to Xenos]

Hi Xenos ! Can you get this without prescription ??

[Xenos in reply to JANVAN]

Hi JANVAN, I'm afraid it's on prescription only and that one has to increase the dose very gradually. I did that under close surveillance even though it's a well-known molecule.

[jeffmayer in reply to glenandgerry]

Sorry to hear about your struggles take care all the best

[glenandgerry in reply to jeffmayer]

Thank you so much Jeff for your kind words

[ddmagee1]

Happy for you Luca!

[4000Nights]

It seems everyone focuses on the pros and cons of Sinemet (Carbidopa/Levodopa). You should thank your neurologist for putting you on Azilect (Rasagiline) early. It may not do a whole lot for symptoms, but it can significantly slow progression. It apparently has in both of us.

[1rocketman]

Great news! Whatever you're doing, keep it up! I started my husband on 2 g of B1 two weeks ago, he is getting his usual exercise, his doctor adjusted the timing of his Sinemet (didn't increase it, just had him take it during waking hours -- 3 pills a day.) We're not sure what is causing it, but hubby has never looked or felt better. Fingers crossed, but we will continue with the B1 for at least a month and see if we can reduce his Sinemet by 1/2 pill. Hoping to get him down to as little of the medication as possible!

Good going! Stay well!

[hindle1245]

I think you hit the nail on the head lucal, when you finally realize that a lot of it was in your head and what got me was what I thought other people thought and it came down to most people didn’t know or didn’t care so keep the good positive thoughts.

[Hidden]

And now you are up to 26 spam posts!