Experienced some tremor relief

[ParlePark]

Dx Jan 2017, 72 yrs old, Tremor dominate.

I tremor intermittently, that is daily for the past 2+ years. When I perform certain movements with my good side, such as wiping down shower (with left arm), my right arm tremors consistently. I walk 2.5-3 miles daily. Whenever I walk steep ascents, tremor is bad. I use 1 lb. weights in each hand which cuts down severity of tremor a bit. Yes, I do have a resting and not an action tremor.

My BP has been rising so I went on Metoprolol 50 mg, a beta-blocker as recommended by my primary physician. Started June 1. After 2 full weeks of treatment, I awoke in morning and noticed that my bad side, arm, (right) felt different. Went to the restroom and to my pleasant surprise did NOT tremor! This was a first and was shocked. I always tremor. Took a shower, no tremor. We went for a 3 mile walk later that morning and hardly tremor-ed at all. This was also a first for the past 2 years. Enjoyed this for next 4-5 days! I could hold a cell phone without tremor! Could not believe it. The only thing that changed was the BP med. No dietary or supplemental changes. The only other drug I am on is Amantadine. A year ago Amantadine helped with tremors, but they haven’t for many months. I'm prescribed 100 mg 3 times a day (but some days just take 2 due to ankle swelling and skin coloration.) Anyway the tremors did return, however very slightly, but I would say definitely manageable (if I concentrated I could stop tremor, which I could not do prior) for at least a week. Hardly had a resting tremor all week. Was like when I was first diagnosed.

My primary doctor said it is possible to have Essential Tremor on top of my PD (why I tried propranolol). I went off Metoprolol for the past 2 days and tried a similar drug, propranolol er (60 mg), also a Beta Blocker. They are supposedly similar and the latter is the actual prescription for (Essential) tremor. My tremors came back immediately and in full force, so much so that I actually forgot how bad they could be. So I am stopping today and going back to Metoprolol tomorrow.

I had no idea that Metoprolol could have this effect, and it was not a placebo effect, that’s for sure. No doubt in my mind. This is a prescription med for blood pressure and I just wanted to share this weird experience.

Final note; the metoprolol worked great for my BP, the propranolol did not. I wonder if anyone has had a similar experience?

[park_bear]

No experience to add, but thanks for your excellent, detailed report.

[Gioc]

I find it interesting too.

Thank you!

I'd like to hear Osidge's opinion on it.

[Farooqji]

With 20 mg propranolol, I feel 90% normal (almost feel PD free)

[ParlePark in reply to Farooqji]

Wow. Thanks for replying! Hoping metoprolol continues to work for me. We’ll see!

[ParlePark in reply to Farooqji]

Iqbaliqbal, how long have you been getting good results from propranolol, curious?

[Farooqji in reply to ParlePark]

I don't use it regularly. But has worked whenever used as per requirement. For example a social event

[ParlePark in reply to Farooqji]

Got it. Thanks! Been off propranolol for 2 days, back on metoprolol and tremors have calmed down substantially. To soon to have a firm opinion yet but much better. We’re all different that’s for sure.

[sharoncrayn]

BP meds are often prescribed for tremors, but these 2 drugs are different.

These are 2 different drugs because they work differently even though they belong to the same drug class. One works on both beta-1 and beta-2 receptors; the other doesn't. One may work better than the other. I don't think either one is clearly better with tremors.

Propranolol has been around much longer than metoprolol, and therefore probably has more side effects. Inderal has also sometimes been prescribed for tremors. Also magnesium and potassium have been used.

Glad something works with your tremors.

Sharon

[ParlePark in reply to sharoncrayn]

Thanks for the reply Sharon !

[sharoncrayn in reply to ParlePark]

1)Did you use Sandoz or a generic?

2)Did you use Metoprolol Succinate or Metoprolol Tartrate?

3)Did you take amantadine with your Meto... or stop taking it entirely while on Meto...?

4) Did you take Meto..and Prop...simultaneously? If so, why did you try both? Physician decision?

Sharon

[ParlePark in reply to sharoncrayn]

Thanks for the reply

1) neither, what’s Sandoz?

2)MS

3)Yes took Amantadine with Meto

4) was on Meto for weeks + 2-3 day Amantadine. Did not take both Metoprolol and Propranolol simultaneously. Tremors didn’t stop until 14 days after I started Meto. Enjoyed benefits for 8 days. After reading about essential tremor was hoping propranolol might even be more effective. I requested Propranolol (trial) from primarily phys who felt no harm in trying. Lasted 2 days with abundance of tremors. They started that morning. Think as stopping the metoprolol that caused the reverse reaction. Went right back on Meto. Sill experiencing some tremors. Fingers crossed it works again. Need to give it more time. Those 8 days were uncanny. Just stopped tremoring. Actually felt normal !I

Just check my calendar and was 14 days on Meto prior to benefits and did last 8 days.

Comments appreciated!

PP

[sharoncrayn in reply to ParlePark]

Sandoz is pharma company that makes Meto...as does Astra Zeneca.

[sharoncrayn in reply to sharoncrayn]

Prop...was the traditional BP used to control ET probably going back 40-50 years because it supposedly blocked "spindles" in the muscles of the tremor dominant hand or foot. And the evidence was what some would call "substantially valid".

Some local neuros who work with my support groups do use prop...and meto...simultaneously because they attack different beta receptors in different ways.

Topiramate is also sometimes prescribed, and sometimes albuterol (asthma drug) because it limits the increase in a-syn activity.

The problem in this obtuse discussion is that some researchers have found that beta-blockers may actually increase activity in the alpha-synuclein gene. Not a good thing if these drugs actually do so given the belief that PwP need to turn down a-syn production.

Then again, Does albuterol do much to control tremors? Some research suggests it increases tremors a la "jitters".

Then of course we have the gene mutation issue with people who carry variants of the a-syn gene.

PD research findings are clear as mud.

Sharon

[sharoncrayn in reply to sharoncrayn]

Of course, a partial solution is to stop drinking all forms of caffeinated coffee or tea or taking any stimulants.

[ParlePark in reply to sharoncrayn]

I do not drink anything with caffeine but thank you. I tremor regardless if I drink decaf coffee or not. I have noticed that if I drink 2 cups, even though decaf I still tremor regardless

[ParlePark in reply to sharoncrayn]

Appreciate the info Sharon!

[sharoncrayn in reply to ParlePark]

PP:

When you combine moto (a powerful selective beta blocker mainly acting on the B1 receptors, but is also membrane stabilizing/anesthetic; versus prop...which acts on both B1 and B2 receptors and is also considered a membrane stabilizing or local anesthetic beta blocker. They re similar, but the two act somewhat differently!)...with ama..., you are combining one form of a beta blocker with anti-viral. I see nothing wrong with that approach as long as it works to control some of your tremors, you don't overdose it, and make sure the side effects are "minimal".

Do these two beta blockers work on tremors due to their anesthetic properties? Do they "numb" the muscle spindles (or receptors) from shortening, which in turn prevents an increase in tremors? Probably possible at least initially. Long term no one really knows.

As I stress in the cancer CTs I run or consult with, the side effects of some drugs (or more frequently the cocktail combinations) are much worse than the minimal benefits. Always keep that in mind.

One other thing. Depending on your brand of decaf coffee, decaf is NOT totally caffeine free. They usually contain 6-10 mgs. of caffeine per 8 ounce cup. So decaf has a slight hit to it. Nothing like a Starbucks Grande (330-350 mgs), but it is a small hit nevertheless.

Sharon

[ParlePark in reply to sharoncrayn]

Thanks and yes aware of min caffeine in decaf. I can’t have 2 cups decaf, or tremors increase.

The Met took a full 2 weeks before I noticed a decrease in tremors and decrease was dramatic for 1 week. Then I went off for 2 days and tried the pro. Now I’m off of pro and back on met for about 5 days. No decrease in tremors yet. Maybe a small amount but not enough to qualify a definite.

Only side effects of AMA is ankle swelling ( using support hose which helps) and slight discoloring, not end of world. MDS upped dosage to 3 a day but hanging with 2 right now. Thanks so much!

[sharoncrayn in reply to ParlePark]

PP:

Your ama...side effects are typical.

Let me know if you get relief from your tremors with moto...You might have had a "one off" drug experience which is not unusual although you do say it has helped your blood pressure.

As to your walking with 1 pound weights, a few of my members have had better success doing a very fast "British soldier arm swing" when walking (a power walk you might say) or spin biking at 80-90 RPMs over 30-45 minutes. Success varies but "speed of action" within a reasonable parameter appears to be a critical variable. You might say it is somewhat similar to John Pepper's ideas.

[Gioc in reply to sharoncrayn]

Ty Sharon,

precise and very competent answers that reveal not only great wisdom, but also a great passion for the subject and a desire to help.

My respect for that.

Gio

[sharoncrayn in reply to Gioc]

Thanks. Hope everything is going well for you.

Sharon

[Gioc in reply to sharoncrayn]

thank,

Sometimes the important thing is to survive.😀

Gio

[ParlePark in reply to Gioc]

😀 an understatement!

[ParlePark in reply to sharoncrayn]

Updated - Experienced some tremor relief

Sharon,

Unfortunately for me, you hypothesis is correct. This was a "one off" episode which lasted 4-5 days. Have not experience this kind of relief in over 2 years. As soon as I started propranolol (for 2 days only) tremors came back immediately. I'm pretty much back to "normal" tremors. I'm back on metoprolol and BP is fine, which is why I took it initially. Such is life. Thanks for your feedback!

[sharoncrayn in reply to ParlePark]

I am truly sorry to hear that it didn't work out. Bummer.

You didn't mention your meds, if any, specifically for PD like sinemet. If you are on it it or M...Puriens, try to reduce your intake while trying something like selegiline.

Sometimes PD is more a function of too much L-dopa toxicity and the need to inhibit activity of one or both monoamine oxidase enzymes.

Consult with your doctor before embarking on my suggestion.

Sharon

[ParlePark in reply to sharoncrayn]

Just on Amantadine presently., now three times daily Tried mucuna from 100 mg up to 1100 mg but no tremor benefit. Was on rasagaline several years ago and got horrible headaches so mds said to stop and I did. We’re discussing when to start sinemet

[sharoncrayn in reply to ParlePark]

MP potency can vary substantially. From as little as 4-5% to upwards of a pharmaceutical type near 100%. Potency will often determine its impact on tremors. One gram equivalents to sinemet is relatively low.

Selegiline has a long track record of being relatively devoid of adverse effects. Certainly, it is less toxic than Ama... NO drug is perfect.

Sinemet (no longer available in US) usually will help initially and generally over time requires an increase in dose. Sometimes Ama.. and Sine... will work synergistically even if alone they don't.

However, if Ama...and/or Prop/Meto or together...didn't reduce your tremors, don't expect a miracle from Sinemet generics. It probably won't happen.

Sharon

[ParlePark in reply to sharoncrayn]

Thanks for replying. I’ve use 100% mucuna extract. As well as 40% and 15%. The testing was done with 100% Barlow’s.

That’s exactly what I’m thinking, might not help others tremors. My mds is aware of that and we have discussed.

[sharoncrayn in reply to ParlePark]

40% BARLOW'S is the most preferred MP amongst my support groups who chose to use MP versus pharmaceuticals.

Table exist for doing conversions to sinemet and its generics. Not sure how valid they are.

Good luck.

Sharon

[ParlePark in reply to sharoncrayn]

Sharon, Thanks for replying ! Why not 100% ? 40% dextrin is the filler? Barlowe’s told me most use 40% as well. To me it seems logical to use 100% since the filler is just dextrin.

[Hidden in reply to ParlePark]

"100% MP" is no longer MP. It's LDOPA. It's like calling pure nicotine 100% tobacco, or calling pure caffeine 100% coffee (these are high level analogies and not designed to stand up to specific detailed scrutiny, which i appreciate i have now invited).

Im not familiar with the Barlowes products, but the hypothesis in the studies done on MP is that there are other parts of the plant that provide some benefit to PWP. By going with 100% LDOPA MP, you are denying yourself those benefits (I don't have the specifics to the benefits and their mechanism of action and if memory serves, neither do the the researchers, really, but there's some evidence they exist), and are really just taking LDOPA without the decarboxylase inhibitor.

[ParlePark in reply to Hidden]

Thx and appreciate the reply. Well a ware. Meant to say Ldopa. Tried now brand mucuna and another from India. Made me sick at 3 capsules - still no benefit. We’ll se how things go. Yesterday and today not bad. First day with only one Amantadine. Seems that metoprolol is on and off with me. Seeing neurologist next month to discuss more options. Have not tried c/l though. She wants to delay until I pull the trigger or recommends due to testing and communication with her. Totally respect her. Very open minded and hip to supplements. Was with nih..etc. Smart , experienced, knowledgeable and no bs. Thanks again for response. Should have been clearer.

[Hidden in reply to ParlePark]

Ah. Got it.

MP doesn't work for some people. I think some of us probably have an uncooperative digestive system, or a strong BBB, or some other thing. The other thing, which you've touched on, is that you often need to take a shitload of it, which can present various other challenges.

[ParlePark in reply to Hidden]

Don’t think way to go. C/l prob soon. Day by day.

[sharoncrayn in reply to Hidden]

"really just taking LDOPA without the decarboxylase inhibitor."

Not necessarily a bad idea.

Sharon

[sharoncrayn in reply to ParlePark]

Dextrin is very safe. I wouldn't worry about it.