DBS levadopa challenge. Glad its over, bu... - Cure Parkinson's

Cure Parkinson's

26,491 members27,905 posts

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

gingerj profile image
12 Replies

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?

Written by
gingerj profile image
gingerj
To view profiles and participate in discussions please or .
Read more about...
12 Replies
jeffmayer profile image
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 profile image
gingerj in reply tojeffmayer

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 profile image
jeffmayer in reply togingerj

Yes great room

gingerj profile image
gingerj in reply tojeffmayer

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 profile image
jeffmayer in reply togingerj

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

gingerj profile image
gingerj in reply tojeffmayer

Yeah but hopefully making a positive improvement to our lives 🤞

MyGolf profile image
MyGolf

I have not had DBS

Daisies22 profile image
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 profile image
gingerj in reply toDaisies22

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 profile image
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 profile image
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 profile image
gingerj in reply toKwinholt

Thanks Karen.

Not what you're looking for?

You may also like...

DBS switch on news.

So gang. I was really off when I turned up, not having had meds for 4/5 hours? Whole body dystonia,...
jeeves19 profile image

DBS for Non-Tremor PD?

Has anyone here with non-tremor dominant PD undergone Deep Brain Stimulation? Did it help w/...
Motal profile image

DBS does it help to stop progression

I'm considering DBS I'd like to know if it stops progression of PD does it help in all areas of PD...
Yhae profile image

DBS should I or should I not??

I'm sure everyone goes through this question over & over again!! Ten times, or more like 100 times...
MARC1 profile image

DBS - does it wind back the movement clock??

On 17th April I'm having DBS. My neurosurgen, says an average result is to straight line my 'on...
CharlieMadge profile image

Moderation team

See all
CPT_Aleksandra profile image
CPT_AleksandraAdministrator
CPT_Anaya profile image
CPT_AnayaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.