What to expect when CL stops working?

[Gallowglass]

I’ve tried everything exercise, diet, CL, DBS. Cl does not help at all. DBS does not help. I have dystonia on my right side. Constant pain in my shoulder, hip, and feet. This is the end. Don’t tell me to think positive!! I’m begging God to take me now. My poor hubby and kids (adult). What can I expect?

[Bolt_Upright]

I'm so sorry you are going through this. I believe you only recently got DBS.

DBS is not helping? I understand that it can take quite some time to get DBS tweaked for maximum benefit.

Good luck and may God bless you.

[Sherry1960]

If you had the DBS within a few years ago, the closed loop technology adaptive was in place. It is being approved by the FDA to be turned on. My neurologist said by May your neurologist should be able to assist you. Hang on! Your DBS will be able to give you even more relief!

[Gallowglass in reply to Sherry1960]

Thanks! Adaptive sounds good but I don’t have tremors.

[qazwsx11 in reply to Sherry1960]

Also adaptive is only for Medtronic.

[gingerj]

Your DBS was switched on a month ago similar to me. It sounds like you're having the same problems as me. I was ready to go to A&E yesterday with the pain in my left hip and leg. Not even the strongest painkillers were helping.In addition I have been having terrible Dyskinesia and dystonia mainly on my left hand side.

This has been getting worse and worse since switch on.

Yesterday I switched the DBS off. Its been 12 hours and so far the pain and the dyskinesia has gone.

Yeah my tremor and other PD symptoms are back but im leaving the DBS off for the weekend to be sure.

Its up to you but,if you're able to I'd recommend you try it.

I wish you the best of luck. There is always an answer, sometimes we struggle with finding the question.

[DogsWoode in reply to gingerj]

Ah ginger I'm so sorry to read this. What a let down for you after all the excitement and anticipation of the DBS. So it continues to be an issue of tweaking it to your particular physiology do you think? Bloody PD. I hope they get it sorted for you soon after all these growing pains.

[gingerj in reply to DogsWoode]

I guess so. I'm thinking that i will try a low stimulation just my right side next week to help with the tremor and if that has no ill effect try a much lower left hand setting until pain returns. But for now i need a pain free weekend to confirm things.

[Gallowglass in reply to gingerj]

Thanks. It’s nice to know I’m not the only one, but I wouldn’t wish this on anyone ! There are reasons for hope, but if this is it for me I’d like to know what to expect. Hope doesn’t help me plan responsibly for the future.

[Gallowglass in reply to gingerj]

thanks! I did turn it down but am still struggling

[LagLag37 in reply to Gallowglass]

How many programming sessions have you had? My programmers said I need to take it slow on the programming. It can take some time to let the new programming to completely kick in. My surgery was 12/17/24 and I've only had 3 sessions so far. I'm only allowed to change the stimulation by 0.1 up or down. I have 3 programs I can change it to.

[gingerj in reply to Gallowglass]

I must say i tried turning mine down first. The thought of it being off was a bit worrying, but it wasn't until it was off that i noticed the difference. If you can then give it a go just to see.

[gomelgo]

this sounds horrific, and I am so very sorry you are going through it, yet grateful that you are sharing here with us and reaching out for support… how long has it been for you? This horrible condition is creating such agony. I send you light and love and the strength to do what feels best for you.

[Gallowglass in reply to gomelgo]

Diagnosed 4 years ago. But had it for at least 10 years. Just need info so I can make good decisions.

[mitochondria]

Hi Gallowglass

So sorry about what you are going through.

Sharing the DBS article by Dr Matthew CL Phillips here (clinical researcher of world’s first ketogenic therapy randomized trials in Parkinson’s/Alzheimer’s/Glioblastoma). He mentions – “Neuropsychiatric complications often appear within the first year after the operation and include post-surgery depression…”.

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Many a times, the side effects are not explained well or we don’t understand the extent until it happens (speaking from my experience of about one year of dopamine agonist Pramipexole).

Hang in there!

You can check with your neuro about Ashwagandha – helps with mood, sleep, inflammation, pain and muscle growth (Eastern Ayurveda practice combines Mucuna which is Levodopa and Ashwagandha for PD). Keto coffee with MCT oil may help with pain too.

[Esperanto]

I’m truly sorry to hear about the immense pain and struggles you’re facing. It’s completely understandable to feel overwhelmed and hopeless at times. While I know you might not want to hear it, cultivating a positive and realistic mindset can be essential for finding some relief… It seems like the absorption of levodopa isn’t working well for you. In a previous post, you also mentioned your issues with peripheral neuropathy, which could potentially indicate a vitamin B6 imbalance.

healthunlocked.com/cure-par...

Have you recently had your B6 levels checked? It's often not included in a standard blood test. In any case, best of luck with your search!

[Gallowglass]

thanks. Will check out the. B6 tip. I do take it daily in B/complex source naturals .

[estubbs79]

Mindset is everything. I have dystonia with Parkinson’s I rely on Mucuna More than CL

[Gallowglass in reply to estubbs79]

How much of each and when? What kind of mucuna? Standard CL 25/100

[estubbs79 in reply to Gallowglass]

1/16tsp Nutrivita Mucuna and 1/4 tablespoons CL 25/100 every 2-3 hrs

[Boscoejean]

I am sorry you are having such a difficult time.

[SunnyMaui]

Taking too much vitamin B6 can interrupt carbodopa absorption which in effect makes Levodopa harder to absorb. And make sure if you are taking vitamin B6 that it's the P5P version and not the pyridoxine form.

[Meg024]

I'm so sorry. My symptoms aren't as bad as yours but I feel for you wanting to make a plan. It is ridiculous suffering - torture. I asked Copilot your question and I think you will get the answers you are looking for if you ask AI. If you want to try Mucuna, here's what I take per dose: 4 caps Dopa Mucuna, 1/2 C/L tablet (for the carbidopa), 500mg Vit C (to speed up absorption). That comes to 290 mg l-dopa.