[Blackfeather]

I am in rapid decline both physically and mentally. My dystonia is unbearable now, a product of Parkinson's. I gave it my best effort but can barely function now. Can't use the keyboard any to peck out words anymore. If I can endure I will check in when I can. Either way good luck with this illness. I love you all

[made it up]

Originally Posted by Blackfeather

I am in rapid decline both physically and mentally. My dystonia is unbearable now, a product of Parkinson's. I gave it my best effort but can barely function now. Can't use the keyboard any to peck out words anymore. If I can endure I will check in when I can. Either way good luck with this illness. I love you all

Blackfeather,
Your post concerns me.
Ive had PD a long time and would like to help you but need to know some facts that have come from a neurologist who treats P.D.
Have you been given a firm diagnosis of M.S.A.?
Are you taking any anti parkinson meds e.g. levodopa?
if so how many mgs and how often?
Dystonia is in my opinion the most uncomfortable and distressing of all the symptoms that P.D. presents with.
I no longer have it and am happy to help but I must let you know I follow evidence based and peer reviewed studies for my treatment.
You having had P.D. for what 5-6yrs by now you should have some sort of drug regime that some of us here can help you out with.
Best wishes.

[Blackfeather]

Originally Posted by made it up

Blackfeather,
Your post concerns me.
Ive had PD a long time and would like to help you but need to know some facts that have come from a neurologist who treats P.D.
Have you been given a firm diagnosis of M.S.A.?
Are you taking any anti parkinson meds e.g. levodopa?
if so how many mgs and how often?
Dystonia is in my opinion the most uncomfortable and distressing of all the symptoms that P.D. presents with.
I no longer have it and am happy to help but I must let you know I follow evidence based and peer reviewed studies for my treatment.
You having had P.D. for what 5-6yrs by now you should have some sort of drug regime that some of us here can help you out with.
Best wishes.

Please help..with dystonia. I just started c/ l 25.100. Can't sleep so takin ambien.cr. send info as quickly as possible. Great pain . need help and hope. Tried botoxv didn't help

[Jomar]

You just started the Carb/Lev?
How many times a day, or how far apart are your doses?

My dad takes 2 c/l pills 5 times a day.
He was taking it only 4 times a day, but had to add a middle of the night dose last spring.

Are you keeping in contact with your doctor?
The dr should adjust meds per your report of symptoms and lack of improvement..
Sometimes a second type of med is needed or a different med, communication with your dr is very important..
Sometimes it takes a while to get the best meds figured out for you.

Also protein eaten about same time of c/l will hinder absorption..

[made it up]

Originally Posted by Blackfeather

Please help..with dystonia. I just started c/ l 25.100. Can't sleep so takin ambien.cr. send info as quickly as possible. Great pain . need help and hope. Tried botoxv didn't help

Hey Blackfeather,
Let us know how often you've been taking C/L 100mg.
If you're on it at a strict regime perhaps be a bit flexible with it and for now don't rely on alternative treatments to help your dystonia till the dystonia is sorted.
Do you have P.D. or M.S.A?
If its P.D. you have try increasing your dose of levodopa right now.
you've been prescribed 100mg tabs but how often? 3 hrly? 4hrly?
i'm guessing right now so if anyone else has ideas that work for dystonia please assist Blackfeather.
Before I had DBS my dystonia could be excruciating if for instance my MDS wanted to see me off meds for 12 hrs beforehand or I simply didn't take as much Sinemet as I should have it would be very distressing and was in my neck, shoulder blades and feet
Jomar is right you need to watch what and when you eat as that definitely makes a difference but for now definitely try 50mg (1/2 a tab) every hr till you find it goes.
Hopefully it should only take 1 or 2 doses of 50mg an hr apart to bring you to an 'on' state and feeling well.
Dont pig out on levodopa with a big dose but titrate up slowly.
I'll check in a couple of hrs if you replied.
Take care.

[Blackfeather]

Just started cl. Dystonia from PD. Had PD 3 5 years diagnosed but. Much longer. Hands are crippled. Thanks for help. Taking cl 3 times daily.

[Jomar]

3 times a day might not be enough in your case.
C/L usually only lasts 4-5 hours per dose, and sometimes less than that depending on a person's specific symptoms...

Can you call the drs office and tell them what is happening, and ask if you can take it more often?
Is your doctor a PD specialist ?

Is that 35 yrs or 3.5 years?

Is it 1 pill at a time or 2 at a time?

Sorry for so many questions , but it helps us give better replies to you.

[made it up]

Blackfeather,
I agree Jomar thats not enough.
When did you see your Neurologist last?
Ridiculously small and inefficient dosage.
Like I said before try small amounts i.e. 50mg at a time but more frequently than 3 times a day and def. see neuro asap.
Has the dystonia gone now?

[Jomar]

PD meds info-
http://www.pdf.org/parkinson_prescription_meds

https://www.patientslikeme.com/psp/p.../1036#overview

Are you taking any other medications for anything else?
Some can interact in negative ways..

[johnt]

Thank you Jo*mar and made it up. The care you've shown for Blackfeather has been outstanding.

Now, nearly 11 years post diagnosis, I'm beginning to get dystonia. So far, it always goes away when I take levodopa and rest.

John