Internal tremors, random thought for discussion

[LAJ12345]

I’m about to propose an out of a box thought that you may all think is completely crazy ....

I apologise in advance if anyone thinks this is any way offensive or belittling symptoms so just say so if you do.

There is a lot of talk about trying to stop tremors. What medications and supplements work etc. I don’t have Parkinson’s but just care for my husband who does. My understanding from his point of view is that mild tremors are unpleasant and exhausting and embarrassing out in public. Stronger tremors are disabling but he never really gets that bad yet.

The thought is they should be kept to a minimum or eliminated if possible.

Hubby has been trying a device called apolloneuro which is supposed to reduce anxiety by producing vibrations at various frequencies which science says will regulate heart rate variability and thus relieve the feelings of anxiety. It feels to me to be rather like a cat purring. It seems to help soothe him. There are a few similar devices around that are healing at certain frequencies.

That got me thinking whether these internal tremors could be actually serving a purpose for the body. Much like a fever is unpleasant it is used by the body to get an infection under control. What if these vibrations produced by the body are actually a way of soothing and controlling heart rate variability much like a cat sometimes purrs when it is stressed. If so, does that mean it is not a great idea to try and stop these mild vibrations occurring? Are we causing more anxiety trying to fight the tremor as we perceive it is a bad symptom? What would be effect of embracing the mild tremor as the body’ way of regulating heart rate and just be accepting of it?

Are the some of the more disabling out of control tremors caused by medication side effects?

Ok, jump in and shoot this down as nonsense if this seems ridiculous. But if anyone with mild tremors wants to try a thought experiment where they try and convince their brain that the tremors are healing for the body and natural, and serving a purpose I would be interested to see if that makes a difference to anxiety levels, further reducing the tremors.

[Hidden]

My internal tremors feel like I have electric toothbrushes running inside me but not simultaneously. Or a hive of bees in my chest. I did not even know it was possible to have a tremor in ones head but I now do. They are invisible or barely visible but make me feel a bit insane to be honest. I act outwardly calm and do my best to be a loving Mom and wife but it is impossible for me to accept this it it. I would rather risk brain surgery than experience this getting worse and worse.

I try and not be negative but just being honest.

If my tremors can not be mitigated with medication I foresee FUS or DBS in the not distant future. And so I am immensely grateful to those who have undergone DBS or FUS and share their experiences as it gives me hope for a more peaceful future.

[LAJ12345 in reply to Hidden]

No that’s fine. I don’t experience it so have no idea. I was just wondering if devices that vibrate feel the same.

[Hidden in reply to LAJ12345]

In my case definitely no. But devices that vibrate offer some feeling of release. I use a foot massager that oddly calms my chest tremor sometimes.

[park_bear in reply to Hidden]

FWIW:

apdaparkinson.org/what-is-p...

"It also appears to be the case that tremor is the only symptom of Parkinson’s disease that may improve on its own — some who had severe tremors have seen them virtually disappear over the period of a decade. Tremors also rarely continue to worsen beyond a certain point — at some point the tremor will plateau. Of course, no one can predict when that will be or how severe it will be at that point."

[Hidden in reply to park_bear]

Oh Park Bear, thank you!!!I did not know that.

I’ve feared this will escalate to convulsions.

The thought they could improve on their own....I’m going to hold tight to that thought.

[LAJ12345 in reply to Hidden]

That paragraph also says “It appears that those with Parkinson’s disease whose major problem is tremor (relative to slowness, stiffness or walking problems) tend to have a much more benign course than others. They progress more slowly and probably live longer.” that is also reassuring!

[ParlePark in reply to LAJ12345]

I’ve read same LA

[park_bear in reply to Hidden]

I have gotten a bit better over the years. Certainly better than when they were at their worst.

[Hidden in reply to park_bear]

That is so great to hear PB!

[Kt088 in reply to Hidden]

Yes, this is true, my tremor, which was severe at dx, ten years ago, is practically absent most of the time, just a little in my arm or mouth at rest but chewing gum helps my mouth ones and I have been exercising for the past ten years, every day and I’ve kept moving, that’s the key.

[LAJ12345 in reply to park_bear]

Good to know!

[Hidden in reply to LAJ12345]

I sincerely appreciate your solutions oriented thought process. Sincerely!

[134A in reply to park_bear]

I am coming up on four years since DX. My tremor was a lot worse two years ago than it is now. I’m not sure if it’s the medication or the fact that I’ve learned to live with it and can actually stop it most of the time now. I’ve also read somewhere that it does improve with time for some people. Now it mostly occurs if I’m stressing about something or if I’m cold. Try relaxing your jaw. I find that works for me.

[Hidden in reply to 134A]

That is uplifting to hear! And I will try and relax my jaw. Thank you. When I lay down I imagine I’m floating on water and something about that has a minor soothing effect and can reduce my tremor.

[134A in reply to Hidden]

Hope you find some relief. I know it’s terrible when there is none.

[GymBag]

Well NO

20 years in and no plateau

Internal tremors mean I am in need of medication. ( All the neurologist that I have seen (4) told me that there is no such thing as internal tremors ) coupled with external tremors it all becomes too much, muscles ache , concentration is impossible, sleep or rest is out of the question , stress builds and I chew a Levadopa as fast as I can.

Interesting theory but it will not fly.

[LAJ12345 in reply to GymBag]

Ok good to know.

[LAJ12345 in reply to GymBag]

One wonders what the body’s purpose is for the tremor. Or maybe there is just no purpose.

[park_bear in reply to LAJ12345]

I posted this some time ago and finally figured out how to locate it:

1. Parkinson's causes nerve impulses to propagate more slowly

2. The body has an automatic control system that keeps our arms where we last left them when we are not paying attention to their position

3. This system is a feedback loop involving proprioception as an input and muscle control of position as an output

4. When excessive delay is introduced into a feedback loop the result is oscillation which in this case manifests as tremors.

In my experience the tremors stop when I transfer control of limb position from this automatic system to paying conscious attention.

[LAJ12345 in reply to park_bear]

Ah that is interesting.

[Oceanwind in reply to park_bear]

That really makes sense to me! Where did you find this original source PB?

[park_bear in reply to Oceanwind]

Original source is Bear brain

I looked and found a paper that sets this forth here:

worldscientific.com/doi/epd...

" The total motor response can then be represented as a closed-loop feedback control system, where the feedback path represents sensory feedback, while the controller represents the neurosystem’s logic that determines muscle actions. Within this framework, the reaction time is simply a transport delay in the closed-loop system. ... it is obvious that a delay beyond a certain threshold causes the closed-loop system to be unstable"

[Oceanwind in reply to park_bear]

What a clever bear! ❤️

[Hidden in reply to GymBag]

The “no such thing as internal tremors” doctors.....grrrr.....for years I thought I had some weird sporadic anxiety and heart palipitation issue. I stopped going to the doctor entirely bc their input was so degrading and pointless. Gym Bag, do you think you might have FUS or DBS? 20 years is a really really long time to persevere.

On this forum very few have had DBS. But on Facebook forums with younger onset, many have DBS in order to still work.

I’m so glad you are on this forum Gym Bag. Voices of experience are desperately needed.

[Kwinholt in reply to Hidden]

Cc, my PD started with dystonia and stiffness 9 years ago. My tremors started a couple years ago and have gotten worse the last year and I understand and have internal ones too , which I do my best not to let it drive me insane. One thing I’ve found , is the more I try to control it or keep it in check so to speak , makes it worse and where’s me out. I do start the testing process this Friday to see if I’m approved for DBS. We will see. ❤️ Karen

[Hidden in reply to Kwinholt]

I think it’s exciting Karen that you are pursuing DBS. It is going to be a big quality of life upgrade. My Dad was approved for it but decided to wait. By the time he felt ready he had dementia and was no longer approved bc of the results of cognitive testing. He therefore had a more minor and less invasive surgery but also less effective with no electrodes. It is this personal experience that leads me to encourage PWP to take the opportunity of DBS while we can. He went to UCSF.

Regarding not letting the tremor drive us nuts; the only way I’ve found to calm it is to be at peace with it and not fight it. It’s like fighting it antagonizes it. That and extreme exercise like running and fast dancing.

I’m truly excited for you Karen! Have you corresponded with Ann Marie Baird? She has done it and is open to discussing it. ❤️

[Kwinholt in reply to Hidden]

Cc, When my dr first approached me about DBS and after talking to several people and doing webinar classes I first said no, because I was scared. I know there’s only a window of opportunity with this disease to have it done and I don’t want to look back and regret not taking the chance. Thanks for your support. ❤️ Karen

[GymBag]

What is the purpose of PD ? What is the purpose of virus ? I do not think that the universe works that way. A butterfly requires no justification to exist or explanation for its beauty of colors and any purpose served is only in the eyes of the one benefiting from its existence be it a bird for food or a child watching in wonder and joy .

[KERRINGTON]

My tremors make me want to pull may hair out, 16 plus years...but keep thinking out of the box, we need that more than anything !

[LAJ12345 in reply to KERRINGTON]

Ok. My brain does tend to go off on these tangents sometimes🤣

[DEAT]

Internal tremors are so uncomfortable. You dont encourage them lol

[LAJ12345 in reply to DEAT]

Oh no, I wasn’t suggesting encouraging them, just wondering if the body does it on purpose for some unknown purpose. Eg like a fever is horrible but kills bugs.

[TiredNRetired in reply to LAJ12345]

It's neural loss in dopamine cells that controls movement. It's not a compensation strategy but one of many outcomes from neurological disease.

[OAFC]

I have severe tremors of my left hand and left foot which seem to be getting worse every day and drive me absolutely mad..I also suffer from severe painful Dystonia in the same areas resulting in my toes cramping and curling in on themselves likewise with my left hand..I also have severe arthritis of my left ankle which is very painful to walk on which in turn I believe make my tremors even worse..I believe side effects of certain meds cause the Dystonia and I wish it was just my body healing itself but even though I understand what you’re saying I doubt it very much..Although I also believe stress,anxiety,depression etc can also contribute to making the tremors worse ..I was diagnosed in August 2017 and over the last 18 months for some reason my symptoms have gone through the roof especially since I had a debridement operation on my ankle last November which I’m convinced made my symptoms worse..I hope and prey that the tremors could possibly hit a peak then calm down or even stop but I doubt it very much..It’s so frustrating 😞😞 I have tried lots of alternative natural treatments suggested on here like high dose B1 etc but to no avail..I have been taking a natural clean mucuna L-Dopa pill from British Supplements for over 6 months now one in the morning as soon as I wake up with the tremors/Dystonia and I can honestly say it is the only thing that completely stops my tremors and Dystonia for anywhere between 2-5 hours and makes me feel completely normal again which is amazing and has worked far far better than any synthetic drug I’ve been prescribed..It says to only take 1 a day but I’ve recently started taking another one in the afternoon with the same results but the only negative thing is that the 2nd dose spaced me out and makes me feel very sleepy and relaxed that I have to lie down until it wears off then unfortunately the tremors/Dystonia return…I mentioned this to my Neurologist and PD nurses who never believed me and even said there’s no way it will work better than any synthetic drug so I sent them a before and after video to prove it and they looked into the supplement on there website and are now happy for me to take it saying “if it works for me then carry on” It may not work for everybody because we are all different and react differently to meds..

..Anyway sorry for the long winded reply and good luck with caring for your HWP with this horrible,life changing,godforsaken,unforgiving disease..

[LAJ12345 in reply to OAFC]

Thanks for our reply. That l- dopa sure sounds good.

[JMSL in reply to OAFC]

Fascinating info about how the mucuna has helped your dystonia! Could you provide details as to what brand and dosage? Or what you looked for when deciding to take that particular brand? I'm in the USA so British Supplements is probably not my best option. I know all of us PwP differ in what works & what doesn't, but a worsening & often uncontrolled type of dystonia has become my worst issue and I'm becoming convinced that it's a side effect from the synthetic med (generic sinemet) rather than a symptom of PD itself because it's different than the toe curling that was my initial motor symptom. I'm interested in trying an alternative such as the one that is helping you.

[OAFC in reply to JMSL]

Hi JMSL Hope you are well as can be I found out about British supplements by googling “ natural L-Dopa to buy” and also a few people mentioned using it on here so I thought I’d look into it and look at there website..

All there supplements are completely clean with no binders or fillers etc added..I couldn’t believe how much faster and better the product worked for me so much better than prescribed meds..It took a long time to convince my Neurologist and pd nurses how much better they worked for me..

I’ve had a torrid time on most of the synthetic meds which definitely do cause Dystonia and other horrible side effects so I’m only taking 2 types of prescribed meds now and the natural one..

The dosage advised by them is 1 a day which I take on a empty stomach as soon as I wake up and It kicks in around 15 to 30 minutes and like I say it feels amazing for However long it lasts..

I tried another one in the afternoon with the same results but it made me more relaxed and a little spaced out so I had to lie down and chill..

I’ve read a post on here of a woman giving her hwp up to 4 a day which works well for him..

I’ve sent a email to the company to see if they export to the USA and will let you know if they do..

There’s plenty of companies in the USA who sell natural L-Dopa in powder form and there are plenty of stories on here regarding the use of Mucuna (L-Dopa) either on its own or alongside there prescribed meds

Keep fighting and stay strong in your fight with this terrible illness😀

😀

[JMSL in reply to OAFC]

Thanks so much for all of that info! I know I can find that natural option on Amazon but since supplements are not regulated in the USA, I am a bit leery of their validity and quality. So it's always nice to get a more personal recommendation!

[LAJ12345 in reply to JMSL]

Thanks you! I wonder if they ship to NZ.

[Manypony in reply to OAFC]

I use 1 capsule at 4 Am, 10 Am and 4 Pm

[OAFC in reply to Manypony]

Hi Manypony Thanks for the info.Do they stop your Tremors all the time and do you take any prescribed meds with them to ??

[Manypony in reply to OAFC]

It takes the edge off tremors, I don’t use pharmaceuticals

[OAFC in reply to JMSL]

😀👍

[LAJ12345 in reply to OAFC]

Oooh it’s got pepper, cumin and ginger in it! Interesting. I wonder if that helps?

[OAFC in reply to LAJ12345]

Yeh they use them as a uptake blend so the L-Dopa can cross the blood brain barrier….Synthetic prescribed meds use something else with nasty side effects

[LAJ12345 in reply to OAFC]

Looks like they don’t ship to NZ. I wonder if those carriers added to lesser brands would help them. Mmmm.

[OAFC in reply to LAJ12345]

I will look into sending you some myself if you like

[LAJ12345 in reply to OAFC]

Oh that is very kind. I imagine postage might be outrageous though if I have to be buying on an ongoing basis. That’s the problem getting from overseas and why I get lots from vitacost as they seem to subsidise postage a bit.

[OAFC in reply to LAJ12345]

This is what I’m on at the moment The benserazide is what’s used so the dopa can cross the blood brain barrier

[Manypony in reply to OAFC]

I also use mucuna 🙏🏻

[Tribselyov]

In part, accept.. Don't try to treat to perfection

[Oceanwind]

Really interesting thought. My neurologist told me about a year ago that people with tremors usually fare better than people with rigidity (like myself.) I asked him why that was. He told me that they believe that the tremor is a way of releasing energy, and it calms the body down, Or something to that effect.

I would like to believe the body is designed to heal itself and it has amazing ways of doing so that are not entirely understood by doctors yet.

[LAJ12345 in reply to Oceanwind]

Ah, well that was kind of what I was wondering. Like a cat purring does. I guess even if something is really unpleasant it doesn’t mean it isn’t serving some purpose for the body on a global level. And can some of the unpleasantness be the stress of worrying it is getting worse making a bit of a loop of worry about the tremor getting worse worsening the tremor?

Perhaps that is the initial purpose very early in the condition with medication side effects and progression meaning it can get out of control. Like a fever if it gets out of control it must be treated.

[LAJ12345 in reply to Oceanwind]

Actually I wondered if people with minor occasional tremor try to tell their mind the vibration is like one of these vibrating devices and try and imagine it is healing them can the anxiety be reduced preventing it getting worse? Obviously as people above have said once it gets to a certain level it is not going to be possible as it is so unpleasant.