Parkinson's late stage meds

[fordy40]

I take stalevo every 4 hrs 6x daily. It is gone in only 2 hrs. and I am left paralyzed, with a hard tremoring. I can't breath, I can't move, very weak, so I just lay on my bed for 2 hrs. until next dose. I need to take something in between or every 2 hrs, so I don't keep hitting rock bottom. This is exhausting. I was hoping someone out there could help suggest something. I can endure dyskenesias easier than the constant hard tremoring. And at this late stage I am ready for God to take me home.

[Xenos]

Sorry about your situation Fordy.

There is certainly some kind of help, to discuss with your neuro.

Comes to my mind :

- L-dopa pump (also called duodopa pump)

- DBS (Deep Brain stimulation)

[Astra7]

Sounds very distressing. Can you try controlled release meds? I have no experience with them but people in this site talk about them helping.

I hope you find some relief.

Just a random thought as well, try some nurofen.

[sharron2]

Some medications are suitable to cutting in half and taking every 2 hours. This sometimes keeps the off periods shorter. You could discuss this with your movement specialist.

[Angora12]

Try canabis oil they say it stop sezures

[Joynb]

Maybe talk to your neurologist about taking a lower dose more often? Stalevo pills cannot be broken up- the entacopone needs to be taken in the set amount.

[alaynedellow]

I know in UK some PD meds are available in patch form- primarily for when swallowing is difficult but these may help rather than pills every 2 hours.

I very sorry to hear that you want to submit may God give you grace and comfort.

[christymw]

I take 1 100/25 sinemet every 2 hours. Even with DBS I can't manage without this frequency. I also take amantadine twice daily which limits the dyskinesia and makes my gait and movements smoother.

Perhaps trying a lower dose of sinemet at shorter intervals may be something for you to try.

[Donzim]

Suggest you talk to your doc about changing meds. We had 8 hour relief from Rytary but your doc MUST learn how to give it...it’s different from other meds. A simple call to the manufacturer will inform him.

It is expensive however and there is no generic.

[Maja54]

Hi I am on meds g 3hr 7x a day. I understand haw you feel. My neurologist recently prescribe Endocapon 200 mg 3x daily . I take it every other dose, It deleite the off time prolongs the meds, So u feel good longer. It works for me.

Maja

[Bailey_Texas]

What tablet are you taking and how many. I take 2 25/100 carbidopa levodopa ,

and 1 50/200 carbidopa levodopa ext release every 4 hours (6 times a day) and 2 6mg Requip 24 hour release 1 time a day.

[Smalltownguy]

Fordy, we all feel for you! I have to agree with others who have suggested you see your neurologist about this. And, don't be afraid to change to another if you're not getting good advice. Partnering with good medical personnel is absolutely critical. They know things we don't...and you know things they don't...you're the only person in your skin! Proper med changes have been huge for me over 15 years with PD.

I don't have info on your age or how long you've had PD. In my case I've been blessed with a miracle through DBS (I'm now 62, PD 15 years, DBS little over 6 years ago). DBS reduced my PD meds by about 60-65%. My worst symptoms were stiffness, slowness of movement and dystonia. If I turn off my stimulators for 45 minutes (which happened 6 months ago for an MRI)...I virtually turn into a hunk of granite. Can hardly move a muscle in my body.