01/11/2020 neurologist appointment - Parkinson's Movement

Parkinson's Movement
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01/11/2020 neurologist appointment

RoyProp
RoyProp

Recommends again DBS for tremor. Says to qualify you must first show good response with medications. In my case that is carbidopa levodopa.

Increased, for effort to control tremor, my CL dose interval to two hours. Doc.- “...we might be able to consolidate those doses into a longer acting form such as Inbrija...” Doctor doesn’t appreciate extended release 50/200 extended release CL.

Recommended that I take melatonin at six p.m.

34 Replies
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Roy, how many years have you had Parkinson’s. They wanted me to DBS I was told movement specialist I would get four more years to control tremor and probably still have do my meds. My oldest Sister had DBS about 4 years ago. and said she wouldn’t have done it. I think she has the Boston Science or something like that. They did it for free because they were trying to get it FDA approved in USA.

RoyProp
RoyProp
in reply to Fishaholic

Diagnosis 2012. Five years in I was disabled by multiple symptoms. That all reversed when I started high dose thiamine hcl. Four grams daily. It was not a cure but now I do not need so much help doing simple daily tasks.

Which way are you leaning re DBS?

RoyProp
RoyProp
in reply to MBAnderson

I will try to avoid it.

pvw2
pvw2
in reply to RoyProp

My understanding of DBS is it's recommended only after meds no longer work. This article claims intense exercise has similar effects to DBS.

Quote: Some of the results were similar to patterns of activation during deep brain stimulation of Parkinson's patients, which is a costly and invasive treatment for late stage disease.

medicalnewstoday.com/articl...

However, once a person needs DPS it's probably difficult to do intense exercise. One needs the meds to work.

mktbob55
mktbob55
in reply to pvw2

My research and talks with neurological staff says better to have it early and don't wait till meds don't work

Roy, have you read the posts regarding Focused Ultrasound? Maybe you are a candidate for Focused Ultrasound instead of DBS.

RoyProp
RoyProp
in reply to jimcaster

I am aware.

Hi RoyProp. This is what I know about Inbrija.

1) Expensive

2). Because you inhale it, coughing is a problem

3). Works within 10-20 minutes, but I don't believe it's long acting. It's made more for getting you thru to your next dose.

4). Can only take 3-5 doses a day

5). Your neurologist can get free samples for you to try it

One more thing, my neurologist put me on GOCOVRI & it works great so far. I've been on it 3 weeks. After 2 weeks, my symptoms were less & my off & on times were a smoother transition. It's also expensive but they were able to get me financial assistance. It normally costs approximately $2,700 and I pay $20 per month. You should also be able to get samples of it. You start with one pill the 1st week & go to 2 the 2nd week & that's when it kicked in. It's an extended release amantadine.

Mezzomom1
Mezzomom1
in reply to laglag

Were you on regular amantadine before you tried the extended? I’m on regular now and find that the dyskinesia comes back in the evening. I’m curious about the extended version.

laglag
laglag
in reply to Mezzomom1

Hi. Yes, I was on regular Amantadine for around 8 yrs. I took 1 in the morning and 1 in the evening. It worked a little the first few yrs. This ER works really well. So far no side effects.

So you have to do well w meds to DBS????

If you do DBS you are no longer a candidate for ultrasound.

pvw2
pvw2
in reply to Sandmanliz

It seems you wouldn't want to do either if you meds still work? Not only may new alternatives arrive, but both of these are improving over time. I know DBS has.

My DBS story is a success from my position. PD since 2003.Had procedure in 2015 reduce meds from 14 x Day to 6x, tremors completely gone. Rigidity, bradykinesia minimized.

How much Melatonin do you take? Also, how long before you go to bed after you take it at 6 p.m.?

RoyProp
RoyProp
in reply to mktbob55

I will start tonight. 10mg ER

Why ER? From what I understand, IR melatonin helps with falling asleep. ER if your problem is waking during the night. I've heard (don't remember if on this forum or somewhere else) that if you can fall asleep OK but wake up, it's better to take IR when you wake up during the night. I don't remember the why. Will try to find it.

RoyProp
RoyProp
in reply to rebtar

It’s what I found on the shelf in that size. Good information

rebtar
rebtar
in reply to RoyProp

I take 12mg IR at bedtime for REM disorder. Works great.

I feel like the doctors try to sell the dbs like used car sales men ....

Hy Roy, I understand that B1 no longer works, but it has helped you for seven years.It's true? Are you still taking 4 gr.? Dr. Costantini told you it's the maximum dose?

RoyProp
RoyProp
in reply to Fed1000

4g does work. Going on three years.

Hikoi
Hikoi
in reply to RoyProp

Does work, but you are considering DBS? How does b1 help you Roy?

RoyProp
RoyProp
in reply to Hikoi

B1? See my profile

Horace99
Horace99
in reply to RoyProp

Your profile says it stops progression. Is that right?

RoyProp
RoyProp
in reply to Horace99

See my profile. A reversal is better.

Horace99
Horace99
in reply to RoyProp

It seems like the B1 provides you with some symptom relief but doesn't stop the progression.

it is not true that to be a candidate for DBS you must have stopped having any improvement from medicine. But it’s true it is a good option for those who have starting to have downtime from their meds.. I just had DBS and I’m so glad I did it! I no longer have to go to the bathroom in the middle the night and have to hold onto furniture to get there. I can walk 24 hours a day. II also was able to reduce my medicine so far from 5/to 4 L/D a day. I’ve had PD 10 years. And only six weeks out. I don’t feel like I’m gonna turn into a pumpkin before 10 o’clock at night now. It is the miracle I’ve been looking for. My dyskinesia is completely gone. The first month is not easy I admit, but after you get turned on it’s nothing short of a miracle. Don’t do guided ultrasound. If they miss the spot it’s permanent!

pdpatient
pdpatient
in reply to Jebbie12

Hi Jebbie12, glad to hear that you have received great benefit from DBS. Which brand did you get? Can you please elaborate on the reduction in medication? Was it Sinemet? Or a combination of medication?

I saw this review re Neuro-Mag helps with Essential Tremors, don't know if it helps with PD tremor too:

Posted on March 29 2013 from iherb.com, approx page 351-360, first review of the page "Essential Tremors":

au.iherb.com/r/Life-Extensi...

Hope it helps!

RoyProp Yes. I am taking Inbrija and instructions say continue regular meds as scheduled and take up to 5 doses daily or none. So my 1st remarks are that each dose = 2 capsules 43 mg each. Within 15 minutes no brain fog and helps me when I feel that "Levadopa Withdrawal " feeling in the early am hrs. During daytime Inbrija will give quick assist in off time episodes which for me are "freezing gait" can't move gosh darn (can't publish) and 10 minutes or so later and depending on other factors like amount of sleep and sticking to my dietary do's & not to do's I find that I take less Rytary each day. I have more to share. (My Med Schedule: 2 Rytary (145mg each) 5 X daily; 9mg Ropinirole daily, 1 mg Rasagiline take in Morning along with Eliquis 5mg twice daily ( blood thinner) Metoprolol 50mg, Lisinipril 5 mg twice daily.( Afib and PD and high blood pressure) Just want to share with you my experience beginning Inbrija. By the way if we could afford a ticket and accommodations to Swiss DBS technology and for me success in motor improvement "these boots are made for walking" well they seem to be steps ahead in making refinements to a highly unpredictable outcome here in the US. Will it or will it not work for you or me? My visit to a specialist well it was I believe an accurate truthful assessment: we cannot promise help with MOTOR symptoms but you will notice less rigidity and other NONMOTOR symptoms. My brother's DBS was successful. Ciao Lucy B

RoyProp
RoyProp
in reply to Ruffinglgo

Ruffinglgo? A good name for a furniture polish.

After five years I was disabled. I could not brush my teeth, cut my food, open a jar, and more as you know.

I found a news story about Doctor Costantini’s work with Parkinson’s. I am grateful to this day.

He does not sell medicine, book, workshop or charge a fee for his online consult with patients that do not want to travel to his office in Italy. His office visits do charge fee. He is currently in recovery from severe heart issue, not available.

I adopted his treatment advice just from what I read. Good results and I then emailed. He corrected my dose and I continued to have relief.

I wanted others to benefit so on my own I formed a Facebook group. Parkinson’s thiamine hcl

Roy my rough draft did not take so I will check again just wanted you to know that B1Thiamine is amazing and many thanks for spreading the word. I take with Rytary and it definitely speeds up absorption of c/levo. I start each morning with Mucuna and before bedtime. Melatonin at 6pm? Yes. I take 5mg CR Melatonin 4-5 hrs before sleep. Lucy b

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