HELP: diagnosed 2011. done really well... - Cure Parkinson's

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HELP

cshamb profile image
10 Replies

diagnosed 2011. done really well. but now meds wearing off sooner. I take 25/100 seminet 5 timesdaily and 50/200ER at night with melotonin. Not feeling well. Is that a high dose seminet. It seems like something else couldbe available. I feel as if its near the end.

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cshamb profile image
cshamb
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10 Replies
lenamm profile image
lenamm

You might want to look into DBS or one of the FUS surgeries if you meds are not working anymore. I had a surgery called pallidiothalamic tractotomy last year - definitely worth it! That being said there are other classes of meds - amantadine, azilect, agonists to name a few.

Hikoi profile image
Hikoi in reply to lenamm

cshamb

Yes as lenamm says there are other classes ,of meds but none of them are interchangeable with levadopa (except perhaps agonists). It would be like using an antibiotic to replace an antihistamine. They have different actions and work in different ways. The options are to try other levadopa preparations such as rytary or adding a drug to extend the time levadopa works eg amantadine, azilect, entacopone

Something else available is high dose thiamine hcl.

No, your levodopa daily amount is not high. I have a neurologist reference where his max prescribed is 2000mg day.

cshamb profile image
cshamb in reply to

Did you start with intravineous b1 shots.? Where did u get the shots and what doctor would administer them?: Do u still use the intraveneous? Thank you

in reply to cshamb

No.

Capsules

cshamb profile image
cshamb in reply to

Thanks. I have vitacost so will strart with 1 in the morning

janisjose profile image
janisjose

Hi. I'm also diagnosed 2011. I stop taking Azilect and amantadine as the side effects are really bad. I solely take LAVIDA levodopa Carbidopa 3x a day 250mg and I'm perfectly fine. I take seldomly antihistamines if I can't sleep. Fighting! Live well..😊😊😊

rebtar profile image
rebtar

No, that's not a particularly high dose of sinemet, and there are other meds as others have mentioned. If your problem is wearing off, it should be treatable. Please see your neurologist or movement disorder specialist as soon as you can. You say you feel it's "near the end" -- Please don't despair and get help.

chartist profile image
chartist

cshamb,

I feel bad about your current situation, but no need to despair as your neurologist/MDS should be able to adjust your dosing appropriately in order to get you back closer to where you were, but the neurologist/MDS can't do much of anything until you fully discuss how you were, compared to your current situation.

Good luck and please let us know how things work out for you!

Art

cshamb profile image
cshamb in reply to chartist

Thanks so much for all the replies to HELP . It is such a blessing to have a group of peole that care.

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