74 and tremor dominant for last 6 yrs, right hand more than left and jaw as well. Has anyone any idea if tremors can slow down , mine mostly stable for past few yrs. Med free.
Tremor again: 74 and tremor dominant for... - Cure Parkinson's
Tremor again
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gregorio
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interested in responses-What’s your secret to staying off of medication? Thank you.
you can read some of my posts to understand me in detail, mostly B1, NAC, NADH,exorciize and diet
That's a great question. There's always side affects to medications. Intuitively I knew and I realized two things: people were waiting the last hour to take their next dose and experiencing tremors which were difficult to tolerate after having relief and the side effects were eventually worsening their condition in balance, hallucinations and rigidity... figured for now I'll just get use to tremors and didn't want to take meds that would cause more PD symptoms. My HS friend who decided to take the low dose meds for his tremors found his symptoms worsening. He also stopped. There is some recent info on melatonin in high doses for tremors. There so much that can done naturally. I'm enjoying learning about things we can do to help ourselves.
Keep me posted! I have problems on and off with the tremors. I take 25 to 100 mg of carbidopa levodopa 6 AM 10 AM, 2 PM, 6 PM. From 12 midnight to six I rarely ever have any tremors. Within a half hour of the morning dose of the C/l tremors in my leg in my hand, then i I’ll get it again for maybe 15 minutes sometimes I’ll get it right before the next medication I sometimes wonder if I have the wrong dose of medication. i’m trying to stay on his little medication as possible and I take lots of supplements. The tremor sometimes caused my shoulder to ache really bad, and I get cramping in my leg. It also intensifies when I am constipated. I just found a functional medicine doctor they’re running all kinds of tests on me. I’m hoping something else to tame the tremor down. Appreciate any advice you can give me. Good luck to you.
Thanks for the update. Since I haven't taken these medications I'm unable to give you my personal experience. However, professionals have told me about some of their patients and how meds affect them. There's so many things you can do and try. There's supplements, exercise, mindful movement exercise like FranklinMethodFellowship, Frequency specific microcurrent, methylene blue, carnivore diet, fasting... Norman Doidge begins a book about a patient with PD who "walked off PD". He did this by using his mind in conjunction with muscle activation and focus. I think this is key for any exercise. That's why I like franklinmethodfellowship.podbean.com. If you watch, cohost has PD. They teach how to use mindfulness in daily activity without saying its for PD. My personal focus now is to calm my nervous system. I'm trying to focus more on breathing and being present. I could go on and on with different therapeutic approaches that are alternative.
Thank you
Which functional doctor are you seeing? If you don't mind me asking, I know we live close to each other
Dr.David Lobur
3830 South Water Street
Pittsburgh PA 15203
412-422-5433
Thank you! We've seen Dr Martin Gerald up in Jeannette in the past, but it's been a few years. I feel like he pushes too many supplements. Hope you're doing well!
I used to see Dr.Gallagher and he helped me tremendously. I think Dr.Gerald is good but not as knowledgeable as Dr. Gallagher. It became cost prohibitive.
Does Lion’s Mane Help with Tremors?
Research suggests that could help reduce the frequency and severity of tremors. This mushroom can also promote nerve cell growth and provide neuroprotective effects that aid in the overall health of your brain, spinal cord, and entire nervous system.
forij.co/blogs/mushrooms/li...
Does that interfere with taking carbidopa levodopa?
I am trying to find information on this. So far I have just found interactions with some other meds
The comment about lion's mane mushroom is consistent with what I have read. I have even used it and I think there may be some effect but it is subtle unless you make it something that you have on a frequent and consistent basis. The idea is that lion's mane produces some amount of "neural growth factor." Lion's mane can be bought as dried powder, and also I find dried lion's mane mushrooms at my local supermarket in the health food section, I just mix it into some cold milk. I have mild tremors for the time being. Since you're not on meds yet I can't say that you should try overlapping your medications but that is what I try to do, yes.
If you find you're able to tolerate high dose thiamine then I think I would continue with that, the idea between HDT is that it slows onset, I think if you research hard you may find some people who say it has helped to reverse some symptoms if they were early in there disease course but I'll leave that to somebody who knows more about it, there are people here who very possibly go back to when Dr Costantini was alive and I think you will find research still here in HU regarding his accumulated experience in some of the things he said. I'd try to use the search engine using costantini as the search term, HDT as another search term and of course using both of them together as a search phrase.
go to HighDoseThiamine.Org. Dr. Constantini’s work is there.
There is also a FB group with a lot of documentation on High Dose B1, based on Dr Constantini'Constantini's methodology. Parkinson'Parkinson's B1 Therapy
Yes but they admit that tremor is least helped by B1.
Now on top of what I mentioned earlier, there are some new medications that are based on mildly stabilizing the anti-dopaminergic effects of antipsychotic medications, for example Deutetrabenazine I think. But that's if you're at the point where you're willing to look into adding a little bit of medication, and this is a bit of a creative suggestion on my part but call it an educated guess that it could have a role. In psychotic disorders, dopamine detention is actually the effect you want to have, whereas in Parkinson's it's the main problem. So it makes some sense that activity in the realm of dopamine is common to both of them, and therefore so could some of the substances and medications involved.
You could discuss the possibility of very slowly very gradually introducing very small amounts with a lot of close monitoring with your neurologist. It's initial use was developed and approved as a supplement that would help control tardive dyskinesia.
Welcome to the world of dopamine in larger view, which is signally involved in psychotic mental illness, and dopamine blockers and sometimes dopamine agonists can be responsible for tardive dyskinesia, including possibly some tremors, as side effects of disturbing the delicate balances of cns dopamine... Just like loss of dopamine producing cells is a linchpin of PD. Both diseases are concerned with disturbance of dopamine functioning... And of course there is a third function of dopamine functioning broadly, which is it's one of those pleasure brain chemicals.
All of these crossovers make "dopamine people" very very complicated to help. Part of the key in using what is available has to do with focus and experience in the differential effects of the various different dopamine receptors, there is a number of them (D1, D2, D3 and so on) and they're chemically somewhat different and respond to medications each somewhat differently, which researchers have been able to measure, and if you have a neurologist who is really interested in tracking research and medications on such things, or maybe somebody who likes to spend time talking to psychiatrists, I bet you find the more sympathetic practitioner in the neurology area. They each have their own different sets of experience knowledge and interest with things dopamine.
So if you have the opportunity and the means I think it would make sense to talk to not only a neurologist, but a psychiatrist as well, and ask them if they are willing to talk to each other as well. As a former practicing psychologist specializing in mental health and their medications, though I've been retired for quite some time now and before some of these brand new recent additions to the stable of medications that help with tardive dyskinesia, I'm very serious about this... Neurologists and psychiatrists are sort of like a left hand and right hand of things dopamine, and left hand doesn't often talk to the right hand etc.. but you could help that if you could become patients of each and then lean on them a little bit to actually make a new friend "across the aisle" as it were. I actually have both a neurologist and psychiatrist, as I've had treatment resistant depression for many years and the medication that is finally worked well is something that keeps my natural adrenaline and noradrenaline from being reabsorbed too quickly... and as it turns out both noradrenaline and adrenaline are two of the three so-called "catecholamines" that are bodies and brains produce... the third of which, which I find really fun in ironic, is dopamine... yes they're all siblings...and it really is true that just like some of the chemicals and mental illness and Parkinson are the same ones or at least in the very same biochemical complex, so it is with psychiatrist and neurologists: their training and experience and what they know and focus on really are different, even if to me it seems like they should be at the very least "cousins." Or distant cousins anyway.
my leg tremors went away with C/L
how much CL did you take?
I have right side tremor, hand and leg, also med free as nothing works. 76 and tremor since 2018, v steadily almost imperceptibly getting worse commensurate with DAT scans. More problems developing include loss of strength in core, arms and legs, dragging right foot and memory problems. Just upped the physical exercise training as that gives most relief. Latest "lets try this" therapy is apomorphine, then possibly DBS or MRgFUS. Good luck!
dragging my foot a bit as well, keeping reasonably fit so far, walking 3 games of golf a week and cutting carbs. each day as it comes.
Hi, I had benefit for right leg dragging by taking 2 cpr of B1 300 mg daily
Thanks to everyone for sharing!
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