What’s the treatment

[Zubeda60]

Hi my mom is experiencing tremors since two years it’s increasing day by day she’s having side effects with the medicines it’s painful to see her suffer cand anyone help me with this should I consult a neurologist again my siblings say medicines won’t help but I need to know the treatment diet life expectancy etc

[Hidden]

Hi Zubeda60:

Levodopa can completely stop tremors in most Parkinson's patients.

What meds are she currently taking, and what side effects is she experiencing?

[Hidden in reply to Hidden]

My four tablets (25/100) a day do not stop tremors. What do you recommend?

[Hidden in reply to Hidden]

Hi Roy,

You need to experiment with dose amounts and dose intervals...

As a start, try taking 1.5 tabs as your first dose of the day, on an empty stomach...

See if that stops your tremor.

If not try 2 tabs...

If your are willing to try it, let me know, and I can try to help you further...

[Hidden in reply to Hidden]

Note, if you have never tried 1 tablet as your first dose on an empty stomach, you should try that first.

Also, with each experiment time how long it takes to wear off (ie, from the time you took the dose until the time your tremor comes back)...

FYI, the first dose is very important!

[Hidden in reply to Hidden]

First dose has been on empty stomach

[Hidden in reply to Hidden]

Why is the first dose important? I haven’t heard that before.

[Hidden in reply to Hidden]

This has more to do with PWP whose PD "honeymoon" is over... staying "on" continuously becomes the challenge and gets more difficult... and going "off" is much more of a bother...

If the first dose is inadequate to span the planned first dosing interval, you will likely go off, or start to go off, at the end of the first dosing interval, and the dose intervals which follow will likely be impacted, potentially messing up your whole day...

Also, it is the easiest dose to get "right", since most of the time your stomach and small intestine will typically be empty and there will be nothing to hinder absorption...

[Despe in reply to Hidden]

State at the end of your post that you are not a doctor! Instead, write about your personal experience.

[Hidden in reply to Despe]

Hi Despe: IMHO, everyone who posts on HU need not announce they are not a doctor... I actually am not aware of a single doctor on this site... Kaypeoh is the closest I know of. I understand he was a vet.

And if anyone should be announcing they are not a doctor, maybe it should be all of the people pushing unproven alternatives to conventional meds... (TIC)

Lastly, it goes without saying that all changes to a forumite's Parkinson's treatment should be discussed with their Neurologist...

Anyway, thank you for your suggestion, and if you think that I have violated any of the community guidelines, please let me know...

[Despe in reply to Hidden]

Levod, I personally enjoy and have learned a lot from PwP regarding their therapy protocol. Sometimes though, posters question other PwP's advice and make remarks to the effect that they are not doctors. . .

[Intrepid200 in reply to Hidden]

Roy please check out Rytary 61.25mg/245

[pdpatient in reply to Hidden]

Roy, 8 years into my diagnosis after a lot of up's and down, I am taking about 1450 mg of Rytary a day plus a dopamine agonist and Nourianz (Istradefelline). That's 10 Rytary pills of 145 mg each.

Methinks that you are way underdosed. Please consider a second or third specialist opinion and get more years of quality time using medication instead of rushing to DBS.

Doesn't this make sense?

[Hidden in reply to pdpatient]

Yes

[laglag]

What did the neurologist tell her when you took her? They must have given her meds for something if she's having side effects? Life expectancy for someone with Parkinson's is basically the same as anyone else, but if they aren't on the right medicine, the symptoms will make life miserable. She needs to eat a lot of veggies, fruits, fish, & chicken. So to answer your question, yes, she should see a neurologist. Levod asked a couple of important questions that would help us answer your questions on whether her side effects are from the meds or Parkinson's.

[Zubeda60 in reply to laglag]

I wasn’t with her since a year I returned last month and was baffled to see her so weak .my brother took her to a local neurologist he gave levedopa and trihexyphenidyl hydrochloride both 3 times a day she’s been experiencing difficulty in swallowing and depression vomiting . Now I give her only levedopa once a day . Also please advice what foods can slow the progress as I see the medicines are more dangerous than helpfull

[park_bear in reply to Zubeda60]

Three times a day, at a minimum, is correct for levodopa. Many patients at this dosage interval do better with a time release formulation.

Many of us have witnessed substantial improvement with high-dose thiamine.

highdosethiamine.org/

Ignore the comment saying protein is a "no no". Large amounts of protein do interfere with the absorption of levodopa, so high a protein meal is best taken a couple hours away from levodopa dosing.

[gl2238 in reply to laglag]

Chicken and fish and other high protein foods are a basic no no. A low protein diet is highly recommended for persons on a Sinemet regiment. Limit potatoes also.

[condor39]

Before going further I suggest you decide whether to believe the neurologist or believe your siblings.. Which has the most experience?

[Baldy70]

You don't need a degree just common sense...l had to figure out things on my own because l got tired of feeling like l was on a roller coaster and a bullet ride at the same time...My problems stemmed from heavy metals/ mercury from old vaxx and dental amalgam...research goat milk for magnesium,virgin coconut oil for detoxing and energy and copaiba essential oil for tremors, but essential oils should be used on skin with a carrier oil and when diffusing no more than 1 hr then about 2-3 hours later

[Marcia123 in reply to Baldy70]

Thanks

[Baldy70 in reply to Marcia123]

You're welcome