DBS levadopa challenge. Glad its over, but it does raise a question.

[gingerj]

Just left hospital after my levadopa challenge assessment for DBS.Wow, i wasn't prepared for how I'd be after having no meds since 7pm last night. I can honestly say I appreciate my meds so much more now.

My normal day starts at 4:30am when i take my Stalevo 125mg. I'm very slow, shakey, and have some dystonia in my left side, but by 5:30 im ok to head off to work.

This morning I missed that dose, the next one which I'd take at 7am and a third one which I'd take normally take at 10am. By this time I was rigid, tight all over with dystonia, could hardly talk, tremoring all over, both legs, arms and jaw. Pain in my hips shoulders and neck.

I felt absolutely horrible.

Thankfully the assessment was relatively short and i was given a 250mg dose of meds. About 40 minutes later the exercise was repeated. I wasn't fully on, but the nurse could see a vast improvement and I was free to go.

The question that came to mind was if the DBS once fitted, for some reason stopped working. What would happen if i was driving and im suddenly dropped straight into the horrible state i was at this morning or worse?

Has anyone had experience of DBS failure?

[jeffmayer]

Yes I had mine on Mon didn't suffer anywhere near as much as you but it wasn't pleasant quite barbaric I must say the staff at Salford royal were excellent has it put you off dbs

[gingerj in reply to jeffmayer]

No. I still hope to have it. I'm pretty much maxed out on the meds so its all that's available.Yeah the staff were great at Salford. Did you stay in anu the night before?

[jeffmayer in reply to gingerj]

Yes great room

[gingerj in reply to jeffmayer]

Hi Jeff,Just wondering if you have made any progress with your DBS surgery? I've just been told that I've completed all assessments and am now just waiting.

Cheers

[jeffmayer in reply to gingerj]

Yes me too seeing the neurologist Tues can't believe I'm looking forward to someone drilling holes in my head

[gingerj in reply to jeffmayer]

Yeah but hopefully making a positive improvement to our lives 🤞

[MyGolf]

I have not had DBS

[Daisies22]

I was wondering if you could help me, I'm still trying to understand my symptoms.When you say:

'My normal day starts at 4:30am when i take my Stalevo 125mg. I'm very slow, shakey, and have some dystonia in my left side, but by 5:30 im ok to head off to work.'

Are your muscles tensed or relaxed during the time when you are slow and shaky?

I am completely incapacitated between doses of Madopar but recently discovered that the Madopar itself paralyses me. It's so bad that I can't move at all until the concentration of levodopa in my blood starts to fall. I am on seven 100/25 mg Madopar capsules per day so I experience seven time intervals when I'm completely bed bound for an hour at least. I wonder if other people experience anything similar.

Thank you in advance for any comments you might have.

P. S. Good luck with the DBS and let us know how it goes.

[gingerj in reply to Daisies22]

Hi Daisies, my muscles are relaxed in general before my first dose. However i do find that i often get dystonia on my left leg, shoulder and core muscles tense and i find myself pulled over to the left. I used to think that the dystonia was caused by the meds but now i think it occurs when my dopamine level rises or falls to a certain level, the trick is to try and stay above that level. Have you tried taking a larger dose, say 200mg and taking that dose less frequently say 4 times a day?Ask your neurologist for advice.

[Daisies22]

Hello gingerj, and thank you for your quick response.I'm finding it very hard to engage my Neurologist in any kind of conversation about Madopar and its Pharmacokinetic, and that is why I'm here learning from fellow Parkinson's people.

Taking a larger dose of Madopar makes the problem much worse. However, reducing the individual dose of Madopar by 20 per cent improves my symptoms but introduces other problems, e.g. I will have to take them more frequently which makes it difficult to have a proper meal.

I'm seeing my Neurologist in a year's time which is a very long time to wait having the symptoms I have.

Thank you again for writing.

Best wishes.

D

[Kwinholt]

ginger, I had DBS 1 year 9 months ago. The testing prior is an eye opener for sure. I am still working on finding my sweet spot with the settings, that being said i still have to take cd/ld with the DBS just not as much. I know longer have to take Azilect and Comtan as well. I will never be without meds at least for me, so if the DBS failed for some reason, I have meds. Take care. Karen

[gingerj in reply to Kwinholt]

Thanks Karen.