Many thanks to those who responded to my quirky post about my symptoms.

I am going to assume I have PD. Why? Because this right pinky tremor seems, note, seems, to be a PD tremor. I admit I don't really understand all the nuances between the many types of tremor, but this one has come and gone since Monday, and so far appears pretty consistently when I lay down, sit down, generally when I am not using my hands. So I am going to assume it's a resting tremor, which, as I understand it, it pretty much seen only if you have PD.

My question, though, is, this tremor comes and goes. It will flick once or twice, sometimes seven or eight times in a quick, sometimes very fast repetition, then stop for a minute or five...it is totally random but I am noticing that it is THERE. Does this sound familiar to anyone?

Also last night, with this assumption of PD in mind, I took 1/2 a teaspoon of Benadryl. I slept like crap, which is usual for me these past months, and I noticed the twitchy pinky was still there when I woke up a scant three hours after hitting the sack. Shouldn't that stuff have a more pronounced effect, especially at first? I expected it to not only knock me out for at least a decent stretch of sleep, but minimize the twitch. That did not seem to happen.

Also I noticed a post here that indicated dextromethorphan/benadryl is an anticholinergic, which I thought was linked to cognitive decline? Why then would so many here, and at the NIH, be experimenting with it?

Sorry for so many questions. There is just such a wealth of information here. My next experiment is to take some mucuna and see if the twitch or the back tightness gets better, although I tend to believe like some that anyone, PD or not, is going to feel better if they take sinemet/mucuna. But it is what a neuro would do anyway, give the old sinemet challenge, so I might as well try it solo and see what happens. Then if I do find myself in a neuro's office, and he/she suggests trying sinement, I can say "I've already done that, and here's what happened...."-might be fun to see the look on his/her face!

Thanks for any input.

If you haven't already, please see the Cleveland Clinic's site on tremor and differential diagnosis. I don't mean to make light of your tremor...we know ourselves best, but there are so many possible other things a pinky tremor may be a sign of that I hate to see someone worry.

I was misdiagnosed with Essential Tremor going on 6 years before a more classic resting tremor emerged. However, my tremor is considered atypical for PD because it is high amplitude and present when at rest or extending hand--it is at its worst in action. This defies the usual PD tremor that abates when you start using your hand. As we have all noted here, Parkinsonism is a diagnosis by exclusion, in other words, the neuro has to rule out other things? Have you had your thyroid checked? Or been tested for Wilson's Disease? I guess I would not want to jump into our leaky boat so quickly but understand how it is easy to do that with so much info out here.

Dextromethorphan does not give all of us dramatic results. I notice that usually (not always) it helps my meds kick in or calms my body when dyskinesia starts up. Really, it's a leap of faith in science for us, we can't really note or see the immediate results but instead hope for long term gain measured in no big progression in symptoms and no big changes in meds after the course of a year or two. Two posters here have extensive experience with DM- Reverett notes more immediate effects in his symptoms and meds during the day; RLSmi takes it at night only and doesn't really need to during day. Me, I'm somewhere in between but more in line with Reverett.

Please search the forum archives for DM posts by these two guys- they have all the details including the pharma-bio info you want. In general, DM is not an anti-cholinergic, it is a NMDA receptor in the opioid family.

Let us know how it's going.

Laura

Hi bdpdsmith,
I hope your twitch is not PD. High stress can produce such symptoms. Are you working on de-stressing?

Regarding your question about dextromethorphan and benadryl, they are not the same drug, and neither is an anticholinergic. Dextromethorphan is known to interact with brain NMDA receptors and benadryl is an antihistamine.

Robert

p.s. While I was writing this reply, you got a more complete response from Laura. She is our extremely talented librarian/resource person.

p.p.s I have since read your earlier postings and understand the stress you are under! Sorry if I seemed insensitive.

rs

You sound like me. I tryed the l-dopa in fava beans and my symptoms disappeared for several hours...that was enough confirmation to me. I really can't see giving money to a neurologist (if you are just starting out on your journey, and they use you as their guinee pig.....for me I'd rather be my own guinee pig and use the $240 they charged me for seeds and another dehydrator. I continue to experiment with fava....at least if you don't have favism...it is natural, cheap and you can adjust to your own needs "without a prescription" Doctors are very necesssary if you are on prescription medications & I would not be doing what I do now if I had gone that route. (..MAOI's are something
to be aware of with favas/or sinemet & other l-dopa supplements...it can cause a rise in blood pressure..that needs to be monitored closely. ) And, as with everything...start out with a very small dose or amount of beans and work up to your optimal amount to relieve your symptoms.

hello,

i just want to add [sorry if someone already said this] that tremor is a difficult symptom to control, and it can go away. I had a slight tremor that went away but remember that when I was on requip, i woke up shaking sometimes.

It hasn't happened lately or since i was on requip. Good luck.

paula

There are two things to contend with when using dextromethorphan. One is the question of your individual metabolism. If your enzyme profile is a certain way (and ten percent of us are) then your body clears the dxm very slowly and factor number two comes into play.

"Two" is that dxm is biphasic in nature. That means that a little bit works well but a little bit more tips over and actually becomes a hindrance. That can be easily managed, unless "One" is also in the picture. Then it becomes beastly complicated. So much so that I have suspended my own use in favor of more promising avenues.

However, someone with a normal liver really should follow up on this and try adding a qtr-tsp of dxm to their morning meds and work up from there. I kind of feel like Moses pointing out across the valley and saying, "That looks like a good place over there!"

11 years ago, right after I was started on Simemet, I caught a bad cold. I contacted my MDS at the Cleveland Clinic to ask what I should take to help with the cold and not adversly affect the Sinemet. His reply was : back when scientist and researchers were first looking for a treatment for PD, Benedryl was one of the first drugs that had any effect on PD and was used for years as a PD treatment. He recommended taking the Benedryl.


GregD