I'd first like to thank Isis for recently posting her friend's core PD drug regime which includes Propranolol. I had taken the beta blocker for six years to treat a tremor in my right hand (diagnosed as Essential Tremor) until 2008 when my neuros upgraded me to PD. I had a fairly new prescription of it in my cabinet as my doctor told me earlier this year that it was likely I had both ET and PD, so I could try the Propranolol. I figured why bother it's just another pill to take and Sinemet erases all evidence of tremor?

After reading Isis's post, I thought, whoa. I am already maxed out on Sinemet, tremor is my most prominent and disabling symptom (happens to be in my dominant right hand), my new neuro is telling me brain surgery is just around the corner. Why not give it a try? At worst, it will make me drowsy and since we have a snow day in Michigan, I can stay in my PJ's and snuggle with my little guy for a nap. I took 10 mg after breakfast around the time of my second dose of PD meds at 9 am or so. I have gone the entire day, over 8 hours, free of any breakthrough tremor!!!

Yes, my PD meds wear off, but the most obvious and immediate symptom I have; the one that leaves me feeling like Flipper and near useless until back on...has essentially disappeared. I'm stunned. Cautiously ecstatic if this means I can somehow lower my Sinemet dosage or at least not worry so much about dose overlapping to stay "on" all the time. This could mean a reduction in dyskinesia and a better quality of life. I don't know that this will last or what is going on entirely, but for now I'll take it.

In researching tremor, I learned that the pathophysiology underlying PD tremor has not yet even been definitively identified; there are theories, but they do not know what is going on for sure. In addition, research going back to 1967 shows potential for Propranolol in treating PD...later clinical studies through the 90's show that people did indeed benefit from it. That being said, how in the world, can they tell us that only two drugs may possibly work? Clearly my new brash, young, DBS obsessed, neurologist needs to dust off the old leather bound journals in the library and kick it "old school" for a little while I'd say.

A few facts about Propranolol:

It has been around since the 1950's and is one of the most important pharmacological inventions of the century. The Scotsman who created it was later awarded the Nobel Prize in Medicine. In other words, to me this means safety- it has been around a long time and no urges to gamble, withdrawal syndrome, etc. mar its potential benefit.

It is a beta-blocker that blocks the action of norepinephrine on our beta-1 and beta-2 adrenergic receptors.

It is long acting with a 5-7 hour half life and real life benefit of up to 12 hours.

We know that with our loss of dopamine our other neurotransmitters are impacted too and cause many of our symptoms. I thought that tremor was mainly due to an increase in acetylcholine, but perhaps our tremors originate differently depending on how we are individually affected by PD?

I know it's only been one day and this may be premature, in someone who is used to a tremor emergence every three hours, this is a dramatic difference. I can't help but share my potential "find" here with everyone. Has anyone else ever tried Propranolol for PD tremor? Has your doctor even suggested it?

Anyway, I am now happy but thoroughly confused. Propranolol is widely used and seen as effective in treating Essential Tremor. It controlled my tremor well until the tremor started looking more like PD. Given my very brief honeymoon with Sinemet, I am grateful the Propranolol still helps for me. I have an atyical PD tremor, so I don't know what this all means. Merely wanted to put out feelers to see if anyone else has experience with this and relay the info that if you have an atypical tremor or do not respond to Artane or Amantadine, then you might explore Propranolol as a potential treatment with your neuro.

Laura

Laura, what about the DM-are you also still taking that with this new drug? IF so, notice anything?

Also, are you still taking your normal amount of sinemet or have you reduced it and if so, by how much?

I am very happy for you and hope this continues to help you. Gotta love those old drugs...LDN, DM, benadryl, propanolol, wonder what else is in the ole medicine cabinet that might help PD?

Hi,

Thanks for the encouragement! I am still taking the DM primarily in the same vein as Robert (RLSMi) for (hopefully) neuroprotection. I take it during the day to help with dyskinesia. It doesn't have any dramatic effect on my symptoms rather overall I feel more fluid and it helps meds to kick in.

I am thinking of using it more regularly during the day, but I already feel like a drug addict. Ha. That's all I need is for someone to see me swigging Robitussin straight from the bottle while at work; I am a school librarian. I find the whole scenario rather funny but don't think parents would find it "normal". lol.

As for Sinemet reduction, I still need to take my regular dosage. What the Propanolol may allow me to do is skip the extra 1/2 Sinemet tabs I need to take as an overlap to stay "on" all the time at work. Plus it allows me the freedom to take a little downtime at home; I can still knit, cook, essentially function in between meds because there is no sign of tremor. This is all very weird, and I'm hoping it will last. I'll report back if things change considerably with the Sinemet.

Laura

Laura, this discovery is absolutely terrific! Tremor is not a problem for me, but if it were I would sure give propranolol a try.
Old, safe drugs; gotta love 'em!
Robert

Thank You Laura for your post and hopefully rediscovering Propranolol.
Tremor is my main complain too and I found that Ldopa is not much helping it.
I take Kemadrin which did help in the begining but bacame ineffective after a year of using it.
It is also my belief that tremor dominant PD may be caused by different pathology then other types of PD.
your post is very interesting to me because I took Propranolol (inderal) for 4 years to treat hypertension with no side effects. That was a long time ago when I was fifty. I am 66 now.
I will wait impatiently your future reporting on Propranolol.
P.S: Inderal is known to reduce men's sexual drive but this should not be a problem if you are under seventy
Imad

Laura, that is great news and has encouraged V enormously.

A few questions -

How much Sinemet do you take and how do you schedule them into your regime?

What else do you take in addition to the DXM?

What problems did you have with Azilect?

And -

This is for absolutely everybody who may have a thought on the subject -
I am aware that everything effects everyone differently. So from personal experience -

What is generally considered a decent length of time to figure out if a drug is going to work?


Thanks folks. This forum is a godsend.

John originally took Propranolol when the doctor thought he had Essential Tremor.When the specialist neurologist diagnosed P.D, he continued to take the Propranolol until recently.At no time did it have any effect on the tremor.He is definately tremor dominant, because apart from drooling (he never did have good mouth closure) he seems (fingers crossed)five plus years down the line, free of any other of the nastier P.D symptoms. Yes, he is a bit slow and drags his right leg a bit, but nothing that stops him running and dancing.He still tremors considerably.

Thanks so much for sharing this. I wondered if I might hear from someone who did not respond to Propranolol. I am sorry that your husband (?) cannot find what works to alleviate his tremor; it truly is a pain in the rear especially when in the dominant hand. There is something called Benign Tremulous Parkinsonsim in which a person is tremor dominant and shows very slow if any progression. Maybe he falls in this category? Here's hoping!

When I was diagnosed with ET, the Propranolol did a good job of controlling my tremor until a couple of years ago. That year, I also started noting more PD like symptoms such as slowness and a little stiffness but nothing compared to the tremor. Also up to that time the tremor was only postural and kinetic, in 2008, it extended to rest and looked more like a classic pill roll.

Just to update, this is a work day, and I tend to overlap meds. However, I can say that overall, so far, I have needed less Sinemet to stay "on" and actually seem more sensitive to less of it- this is weird. So in other words, I am using less Sinemet but having dyskinesia creep in more. By the way, as a test, I took only .5 of a Propranolol this morning and it is still entirely masking the tremor in between med dosages! Additionally, I usually get one other symptom when meds wear off either slowness or rigidity, but not both. Since I have added the Propranolol, my secondary symptom is not as noticeable or bothersome. This is all telling me that somehow, the Propranolol, which I believe inhinibits our adrenals and slows down norepinephrine transport, is somehow enhancing my uptake of dopamine. I can come up with no other logical explanation. Robert, if you are following this thread, doest this seem feasible?

When I first noted that Prop. controlled my tremor yesterday (BTW, I went a full 12 hours before the tremor emerged!!), I thought maybe I do have ET and PD. However, why would Sinemet entirely control an ET tremor? Before I started the Prop., my tremor was entirely under control with only levodopa. All this says to me that is either the Propranolol work in concert somehow and greatly benefit my unique form of PD OR ET is a milder form of Parkinsonism and it is on a spectrum with Dystonia, and PD (my belief).

I don't think ET is always a separate entity from PD. Research has shown that people with longstanding ET can develop a resting tremor, they show dopamine deficiencies upon PET scan, dystonia can be a feature, along with gait disturbances. In other words, it looks like PD in many respects...

Well, all of this goes to show that researchers don't really know what PD is. We may all get here in different ways (head trauma, neurotoxin, virus, or combo thereof) but whatever does the damage manifests itself in the cardinal signs of PD but in varying degrees. All I can figure is that as we are all unique, so is our brain chemistry. In the final analysis, the current practice of just throwing dopamine our way, is clearly not enough.

Laura

Isis,

Godsend, YES! I'll second that. I went 12 hours yesterday tremor free! I am on day two with even less Propranolol and doing just as well (I took .5 to help control drowsinesss).

I have never had a tremendously long interval with Sinemet dosages. Before my pregnancy I could go to 4 hours, after delivery of my son, I dropped down to 2 - 3 hours. I believe that it is more beneficial to us to take a lower dosage of Sinemet more frequently (this is prevailing belief based on research and practice) as it really puts us in a state more akin to what we had going when healthy. I currently take:

three times daily

2 mg Requip
1 Sinemet 25/100 (supplemented every 2-3 hours to stay on)
1 Sinemet CR 25/100
5 or 10 mg of Propranolol (morning only) since yesterday

All this really does is keep me fluid. I do take 1/2 a Sinemet regular as needed to stay "on". This works well for me, but I do get dyskinesia when I overlap doses or take an extra bit of Sinemet if things wear off at work and I can't kick back on right away. I teach kids ages 5-11 and always have at least 25 pair of curious eyes looking at me.

I am trying to work on getting a morning dose of Requip at 3 mg into my system but can't handle the nausea. I have had that dosage work and it puts me back to baseline at the 4 hour mark with regular Sinemet.

I had a horrible experience with Azilect. First, I ended up with a rare side effect in younger onset people that results in severe joint pain. I looked and felt like an arthritic 80 yr. old when I woke up in the morning and found I had to take Ibuprofen every night because I ached. Stopped the Azilect and the pain disappeared. This drove me to the brink because at first I feared it was disease progression!

When I was on Azilect, I also took Mirapex and Sinemet. My doctor never advised me how to lower the levodopa, so I ended up with severe peaks and troughs in dopamine. When it peaked, I buzzed around the room, was manic, and delusional (in the sense that I was a little too happy). I crashed in between med dosages with tremor and mainly a numb painful tingling pins/needles feeling in my hands and feet also had disablind dizziness. The pins/needles stopped with the Azilect and the dizziness ended with the Mirapex.

What dosage of Propranolol is V taking? Does he feel it helps his tremor at all? Tell him to hang in there! I was maxed out on Sinemet and my doctor was pushing brain surgery just two months ago. If I can get a med regime together that works, there has to be something for all of us. Just keep trying

Imad, glad I'm not a guy for that very reason!! Mainly, the Propranolol makes me drowsy, so I am going to see if I can get by with just 5 mg. I hope you find something that works for you and soon!

Laura

Laura,
I don't know what may be happening with the propranaolol. It could be an effect on either epinephrine or norepi.

I have some colleagues who are top-notch CNS pharmacologists who are interested in Parkinson's whom I will see later this week. I will ask them about your experiences and observations with the drug.

Robert