DBS and Sinemet

[DeanGreen]

I had the DBS surgery last October. After DBS, Sinemet made my PD symptoms worse...especially balance (It's like I am constantly falling forward and my legs are trying to keep up). I told my neurologist about it and she thought is odd that Sinemet would do that. I feel better without the Sinemet. She said that I need a bit of L-Dopa for my non-motor issues, so I should continue to take it for a while. So, has anybody else with DBS have the same phenomenon? i also have a diphasic response to Sinemet...if that is any clue?

[CaseyInsights]

…She (neurologist) said that I need a bit of L-Dopa for my non-motor issues

Just curious, as my understanding is that most of the non-motor symptoms do not respond to the treatment by L-Dopa.

So just which non-motor symptoms does she hopes to fix? 🤷🏽‍♂️

[DeanGreen in reply to CaseyInsights]

Hyperhidrosis (excessive sweating).

[CaseyInsights in reply to DeanGreen]

L-Dopa was not able to fix that issue - excessive sweating - with my spouse. If you do not experience any relief, may I suggest the following combo -

Optimox Iodoral 12.5 mg & Optimox ATP Cofactors & Seeking Health Trace Minerals

Iodine

amazon.com/Optimox-Iodoral-...

ATP Co-Factors

amazon.com/Optimox-Cofactor...

Trace Minerals

amazon.com/dp/B004JGTKX4?re...

My assumption was that thyroid dis-regulation was the key factor in this issue, despite Thyroid Stimulating Hormone (TSH) reading within range and my spouse neurologist saying there was nothing he could do about it.

Of course your mileage may vary. But I have done at lest six 90 day treatments over the last three years.

Notes: This is high dose Iodine treatment. ATP Co Factors (B2 & B3) are crucial in the “organification of iodide”. So too Selenium in the treatment (I use a multi mineral supplement suggested here to ensure I obtain this nutrient as well as others like Zinc, which plays a role in the production of thyroid hormones.) Another cofactor in my stack is Tyrosine, which is part of the DopaBoost capsule.

In short my stack has all the cofactors Iodine works with for thyroid hormone production.

[DeanGreen in reply to CaseyInsights]

The Sinemet relieves some of my coordination issues when I type.

[limcheeese22]

mind asking what diphasic response u have? Dyskinesia? I have balance issue as well, levodopa also causes some neck dystonia . I have DBS closed to 3 years. I feel better off at night when I am off from levodopa

[DeanGreen in reply to limcheeese22]

I also am better off in the evenings and mornings w/o any Sinemet.

[CaseyInsights in reply to DeanGreen]

If you are better off without Sinemet then do without it. Falls are dangerous 😵‍💫

[limcheeese22 in reply to CaseyInsights]

but daytime without C/L causes weakness...

[Juliegrace]

I have not had DBS but c/l definitely affects my balance.

[TL500 in reply to Juliegrace]

Does c/l make your balance worse?

[Juliegrace in reply to TL500]

Yes.

[TL500 in reply to Juliegrace]

I think so too, when it's wearing off

[PixelPaul in reply to TL500]

If your balance issues get worse as the C/L is wearing off, wouldn't that indicate that it's working?

[DeanGreen in reply to PixelPaul]

It gets worse when I'm "ON".

[TL500 in reply to PixelPaul]

I can't explain how it is, but when I first started meds, after 2.5 hrs or so the meds made my body pulled either to one side or forward and very uncomfortable whereas when I hadn't started meds my balance wasn't like that.

[Pauldmd]

I had a very similar experience after DBS surgery, although I was not taking any meds. What I discovered was that I was particularly sensitive to the DBS stimulation and turning down the level of stimulation resolved the problem. Everyone is different but even 15 years later my DBS settings qualify as barely therapeutic.

[JeanieBeanie]

My husband had DBS in 2005. It affected his walking immediately. Was worse than before but was so good for his tremor. He switches himself off if he needs to walk any distance. His remote went kaput whilst we were on holiday abroad a few years ago and it took about 10 days for the new one to arrive. What I did notice was how much easier it was for me to get him around when he is 'off'. No surging forward. Less is more as in not too much medication. It affects his balance and speech. Experiment with your settings. His have been changed several times over the years by his specialist nurse. There are various pulse widths etc.

[NRyan]

My good friend had DBS surgery and his balance became terrible. They thought it was related to meds, but I believe they never looked at Sinemet as a culprit. He fell, struck his head, ended up in the hospital, sent to rehab, went downhill and needed a g-tube, got an infection and died all in about 3 weeks time. I hope you work out what is causing your balance issue. I am forever put off of DBS after watching his results.

[Sherry1960]

I had DBS surgery in June 2022. I was told it would not help with balance, freezing or excessive seating. I had it for the painful dystonia in my feet. Maybe your setting needs to be tweaked.

[horsplay]

I've had dbs and suffer from excessive sweating. I take glycopyrolate for the sweating and it makes all the difference in the world. 1mg twice a day and the sweating/heat intolerance is controlled.

[florence9]

Hi I've just read your post, I've recently had DBS and am finding walking difficult how are you now?