Parkinson's RX not helping: Shaking of... - Parkinson's Movement

Parkinson's Movement
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Parkinson's RX not helping

gl2238
gl2238
23 Replies

Shaking of Left Hand, Wrist, Thumb, Fingers, not necessarily at the same time, is resistant to RX Treatment with Mirapex, Sinemet, Rytary, Gabapentin and others. Cramping is significant problem and shake can go from severe to violent. Only modifier is Oxycodone and THC for PM use to reduce pain and help sleep. Lower jaw chatter started about 3 weeks after DR added Sinemet into the mix. Different mixes and doses have been tried. Any one else have this RX resistant Parkinsons? Diagnosed about 4 years ago but only a year ago did the symptoms really develop. Seems to be fast moving with me.

23 Replies
oldestnewest
RoyProp

Not fast moving. Normal first five year honeymoon.

I am trying C/L and 25mg THC.

1 like
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Fed1000
Fed1000
in reply to RoyProp

Are you still on B1?

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RoyProp
RoyProp
in reply to Fed1000

Four grams daily. I am most happy.

3 likes
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Acai
Acai
in reply to RoyProp

I'm glad to hear that the B1 is working so well for you. I am having a hard time finding any reputable company that sells it for more than 50 mg each capsule. Where are you finding your B1 supplement that is 4 grams/day? Thank you!

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RoyProp
RoyProp
in reply to Acai

Thiamine hcl through vitacost DOT com

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Sandmanliz
Sandmanliz
in reply to RoyProp

I have read you have to do thiamine hydrochloride, versus regular b1. Is there such a difference and I can’t seem to find on the label that one is different than the other?

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park_bear

What prescription medications are you taking, including ones for conditions other than PD?

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gl2238
gl2238
in reply to park_bear

No other RX but have tried B12, B1, D3, Mg supplements.

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park_bear
park_bear
in reply to gl2238

Hmmm. The only thing that comes to me is to suggest taking a look at this:

healthunlocked.com/parkinso...

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MarionP
MarionP
in reply to gl2238

Looking at this, assuming the mechanism parkbear showed in that article, would it make sense to look at grapefruit juice? It competes with the enzyme parkbear noted, I use it myself to slow the half-life of something I am taking.

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JAS9

I can throw some ideas at it and see if we can figure out what's going on, but first more information, please. Can you give the range of doses you've tried for some of these meds? How long were you at each dose? How experienced is your doc and have you sought a second opinion from someone perhaps more experienced?

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gl2238
gl2238
in reply to JAS9

Titrated up/down under doctor direction: 0 to 2X 3X/day Sinemet (25-100), 0 to 3X 3X/day Mirapex (.125mg), 0 to 2.7 gms/day (3X 3X/day)Gabapentin (300mg), Rytary PM only (48.75-195), Oxycodone-up to 10mg, (depending on pain). Note: Sinemet makes mouth chatter worse as well as synchronous L hand finger tremor. I seem to be better off not taking any typical Parkinson's meds. THC works wonders to help fall asleep.

1 like
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Mjm012
Mjm012
in reply to gl2238

Husband desperately seeking help for sleep. Is the THC indica? Do you smoke it or take as and edible or CBD oil? What dose do you use for sleep?

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gl2238
gl2238
in reply to Mjm012

It is Indica and the brand of oil is Alpine Skywalker. It comes in a cartridge which is inserted into something like an E-Cigarette. It contains 83% THC and 2% CBD. I inhale once for 1 to 4 seconds depending on how I feel. I can inhale for 3 seconds without getting high but enough to mellow the shaking. At 4 seconds I will feel high, a feeling I am not comfortable with. It works well with either Oxycodone or Percocet (Oxy and Acetaminophen). The THC and Oxy do more to quell the shaking than the Parkinsons RX and almost no side effects as with the Parkinsons RX.

1 like
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gl2238
gl2238
in reply to JAS9

I am now under the care of one of the only Movement Disorder Doctor in my area. This will be 3rd Neurologist in the lineup. I am also blessed with severe Lumbar stenosis as well as other Lumbar issues and global osteoarthritis.

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Bea6

Good morning I am exactly the same .. am now left with cbd as my only help. My consultant said he is moving towards it being atypical Parkinson’s possibly msa. Been diagnosed 5 years and yes mine has been fast moving my consultant agrees.

Sorry I have no words of wisdom but let u know you are not alone. Xx Bea

1 like
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WinnieThePoo

Do you mind if I ask, to clarify, have you been on medication since diagnosis, and that has worked well until about a year ago? Or have you been without medication until things got worse a year ago, and the medication you are now trying is not working?

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gl2238
gl2238
in reply to WinnieThePoo

Started Mirapex about a year after diagnosis. Things went downhill from there. I am now, feeling better, after slowly titrating off of drugs. Should be able to titrate off of all Parkinsons RX in three weeks or so. Not only was the shaking not getting better but I was falling asleep during the day.

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JAS9
JAS9
in reply to gl2238

Rather than having a rapidly progressing med-resistant form of PD, I wonder if you have PD at all? The symptoms you describe all sound like either overmedication or the result of someone without PD taking PD drugs. The only thing that might not fit this theory is if you were ever helped my the PD drugs. Of course, I'm not your doctor, but it might be something to ask.

Oops I see someone's already suggested this. I'll leave this up anyway.

1 like
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gl2238
gl2238
in reply to JAS9

PD RX never really helped. All 3 neurologists + 2 internist say PD and confirmed by definitive DAT scan about three months ago. RESTING shake on Left (Hand/Wrist/Thumb/Fingers (not synchronous) is one trademark as well as more recent lower jaw tremor. Also leg and back issues typical of PD. Having EMG on legs in a couple of weeks and PAD and Venus blood flow checks. In the AM I cannot walk without severe tightness/numbness/burning in both calf and ham strings. Started a couple of years ago in only the calves. I am in global body pain 24/7 only being saved by Oxycodone and to a lesser extent, Gabapentin. I am weathering the pain OK but the shaking, especially, when at rest is intolerable.

1 like
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Osidge

If you have no response to levodopa then you may not have PD but Parkinson’s Plus:

webmd.com/parkinsons-diseas...

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gl2238
gl2238
in reply to Osidge

Tnx for input. I have no problem with balance or walking in general other than the problems with spinal stenosis which makes my legs burn, tight especially in the PM. I do have "Parkinsons Throat", dry eyes. Also of note is KInetic tremor of the right hand which was diagnosed even before the Left hand/wrist/finger symptoms started.

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kathypab13

I started with generic Sinemet after initial diagnosis. I was having some of the same symptoms a few years after being diagnosed. I started taking brand name Sinemet. Worked great for a few years and then started having some difficulty again. Added Amantadine and have had pretty good luck with that mixture myself.

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