experiencing invisible tremors

[olpilot]

I have for the most part invisible tremors,it took longer to get a dx, but the tremors are every bit as real, and are starting to move out. I take requip three times a day, azilect once a day and amantadine twice a day. It helps a lot but the tremors are strong in the morning, anyone else have much experience with invisible tremors?

[ivyanne]

I have resting tremors. They only show up when Im not active.. sitting etc. Requip brings out compulsive behavior in me ( not the good kind..lol) and Amantidine causes nausea but when my Sinemet is on... no tremors...

[fishinggirl]

Are you talking about tremors inside your body? I get those and thought something was going on with my heart or sugar levels. Amantidine is great for that. I only notice them when I'm not busy but they are there is I haven't had my meds.

[Court]

These are the worst kind of tremors to get as they are real but do not show themselves. I told the Consultant and she said they are quite common. I also suffer from tremors that are visible and they both feel the same to me. Must mention Amantidine on my next visit.

[jillannf6 in reply to Court]

hi sue

hyes but i tried amanatadine for thne fallign

and got the dos eup so tha ti was takign it twice a day

but you hagv eto be careful when the second dose si taken as it can cause hallucinations

not nice

i stopped tkaiagn it as i twa snto helpig the \psp

lol Jill

[Court in reply to jillannf6]

Hi Jill

Hope that you are keeping ok. Maybe I will keep the same meds at least until after my holidays. I am not too bad, still having off times and pains from hips downwards, but we keep going, don't we?

Hope the work on your new apartment goes well. It will be lovely when finished, I am sure. Any opinion on P.D. Junction site?

Lol Sue

[Jocee]

I've had pd for 25 yrs and I don't know what invisible tremors are.... please explain.....thanks

[olpilot]

you feel the tremors in side of you, mine are in my shoulder mostly, and when I lay down to rest. It feels as though if you were looking at, or feeling them they would be there, but there not. I feel them, but there is no external evidence. Sometimes they lasr for hours, makes my shoulder of arm very tired, like I'd be weight lifting. My contol of the arm and shoulder is affected, by being much less controllable, seems ti miss a lot when I reach for things. I've read about them, about 30% of PWP don't have tremors, and I'm wondering if this kind of replaces them for those folks. I have also read PD advances in people with out tremors.

[tmhiggs in reply to olpilot]

yep, PD progresses quickly in patients w/out trermors and is more severe i am one of the unfortunate ones bec i have no tremors.. i was diag at 40 and now 43. had to quit job, cant drive take meds every 2 hrs and don't always work and when they dont work i feel almost paralyzed, cant hardly move or walk and some i need assistance like getting dressed, things of that nature. thank god for a wonderful husband. this really sucks big time. it is like that for me every day up n down.

[Rather in reply to tmhiggs]

Have you ever tried high dose B1?

[JCRO in reply to Rather]

this thread is a decade old!

[PatV]

I don't have tremor but painful dystonia foot dragging & now after 6 yrs on sinemet dyskinesias. Fun.

[shetawk in reply to PatV]

Have you tried blue glasses? youtube.com/watch?v=OrcO2oR...(Not working as expected?)

[olpilot in reply to shetawk]

????? only if it were so easy..................

[olpilot in reply to PatV]

I have dystonia in my legs and feet, if I don't have shoes on it feels like I'm walking on the side of my feet, cramping too. Amantadine does seem to help both invisible tremors and dystonia. With the requip and azilect things aren't too bad most of the time, but it does seem to be getting a little worse.

[silvestrov in reply to PatV]

For dyskinesias try taking 2,000 mg of omega-3 per day (distilled at a molecular level to remove toxins). High quality salmon oil is great because it also contains astaxanthin (a powerful antioxidant) and omega 3s have been and are being tested to see if they reduce dyskinesias:

Docosahexaenoic acid reduces levodopa-induced dyskinesias in 1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine monkeys.

ncbi.nlm.nih.gov/pubmed/164...

Reducing Dyskinesia in Parkinson's Disease With Omega-3 Fatty Acids (RLID-PD)

clinicaltrials.gov/ct2/show...

The only real concern with fish oil of any type is it has a blood thinning effect and should not be taken with blood thinners like warfarin.

[shetawk]

I felt for a while that there was a butter churner running down the center of my body but it didn't show on the outside. Ativan and toprol help calm things.

[olpilot]

Thank you all for your responses, it helps to know I'm not imagining this, hard to convince anyone else when to most "seeing is believing".

[olpilot]

Internal tremor in patients with Parkinson's disease.

Shulman LM, Singer C, Bean JA, Weiner WJ.

Source

Department of Neurology, University of Miami School of Medicine, Florida 33136, USA.

Abstract

Although sensory symptoms were not originally described in Parkinson's disease (PD), in recent years it has been increasingly recognized that painful sensations and paresthesias occur in approximately 40% of patients. It has been our observation that PD patients often describe a sensation of internal tremor, a feeling of tremor inside the chest, abdomen, arms, or legs that cannot be seen. We investigated the prevalence and characteristics of internal tremor by administering a questionnaire to 100 consecutive patients with PD and 50 age-matched controls seen in our movement disorders center. A sensation of internal tremor was present in 44% of this sample of PD patients and in 6% of the control population (p < 0.0001). The presence of internal tremor was unrelated to Unified Parkinson's Disease Rating Scale score, Hoehn and Yahr stage, duration of disease, or the presence of observable tremor. The frequency of other sensory symptoms (aching, tingling, burning) was higher in the PD patients with internal tremor (73%) than in those without (45%; p = 0.005). Internal tremor is associated with anxiety in 64% of patients (p < 0.0001). It was described as uncomfortable and was unrelieved by antiparkinsonian medication in three quarters of patients. A sensation of internal tremor is commonly reported by PD patients and should be recognized as a useful diagnostic factor in PD

Dated 1996, why is it so hard to get drs to listen?

[PDWarrior1900 in reply to olpilot]

I see you wrote this 10 years ago. Today it is 2022. I visited my MDS in September and even HE dismissed my complaint of "internal tremors."

[turtledovemom]

Is this like the feeling that your phone is on vibrate, but you're not wearing your phone (best way I can describe this)? I have those almost constantly. Thank God, the visible tremors in my back and legs were actually witnessed, once by an e.r. doc and frequently by my husband.

[olpilot in reply to turtledovemom]

some what like thaat, with mine it is as if my arms and hands really are moving, I feel it but when I lok they are still, but I still feel the movement. I have the same trouble trying to do anything with my hands, but I just look bungling and inept, careless even, but no shaking. The pain and fatigue is very real too. Amantadine does help with it just like in visible tremors.

[jeaniegal]

Propranolol helps my internal tremors.

[chukashtamoa]

my treatment though unintended by my medical team, this because of acute lower back pain, is 3600mg gabapentin and 1.5 mg of alprazolam administered as I/3 3 times a day and like yours its worst in the morning the only difference is that if left untreated they become visible including head shaking no...no... manifestation.

[PDWarrior1900]

I see this post is 10 years old, sir. I have a similar condition to yours. May I ask how you are doing?