“emergency room” PT 2 - amantadine, benadryl and tremor dominant prognosis

I have just returned from second visit to my neuro in three weeks. I want to update my fellow parkies and especially those that have been following my adventure.

After three years no drugs, I recently experienced trial run (about 1 month) let’s say of first sinemet and then, after stopping sinemet three weeks earlier, for the last three weeks I was on ropinirole. I told my neurologist that neither medicine did improve my condition.

Backing up for a moment, the first question I asked, “what percentage of parkies live out their lives and only have, primarily, tremors. He answered that of tremor dominant parkies, 5%.

I recently had to have surgery by a plastic surgeon. He made astonished comment when I told him I was not taking P meds. He said “But look at your arm!” I related that to my neuro and went on to explain my desire to continue med free. With one exception, I thought if I took one ropinirole in the evening that may calm my tremors. As my experience seem to indicate. He agreed with my med free desire but explained most P meds do not control tremors. Amantadine is for the control of tremors. He said I could get an across the counter substitute with Benadryl (generic cheap but identical drug) at 100mg one hour before retiring for the day.

For now I am again drug free.

I think this is enough for now, I have chores waiting (six cats). I will probably think of more to say after posting this/

51 Replies

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  • Thanks for the update. Sounds like you are doing better & that's great! So you're saying the Benadryl is helping your tremors? Does it have any side effects? I've heard it can make you sleepy which would be good at night but do you think you could take it during the day?

  • My first Benadryl will be tomorrow night. I have no trouble sleeping . I do get up frequently. It's going to sleep with your right arm beating out some message in morse code.

  • I thought PD tremor doesn't bother people at night, mine is completely benign at night and doesn't affect sleep... Still have major problem sleeping so you're lucky.

  • Only after you go to sleep. Trying to get to that place is the problem

  • My tremor starts after about 10mins of rest & continues through sleep. I can reduce/halt it by sticking my tongue between my teeth (temporary) or persistently by sucking on a baby dummy.  Unfortunately it appears tha Benadryl is now unavailable in Australia!!

  • All of us here are old enough to know what morse code is. I guess it would be interesting to explain it to today's digital youth

  • So if you take benadryl at night, does it mitigate your tremors into the following day?

    And Roy, when you quote him saying only 5 percent of Parkies live out their lives with tremor the primary symptom, is that Parkies who take PD meds or those who don't? Or all Parkies?

  • I would not expect such extended effect. 5% of all tremor dominant.

  • Yes I would like to know that as well as it seem to have as many side effects as PD does?

  • just saw a commercial for a new drug to help with the side effects of another. It then posted a number of possible side effects from the drug tasked with stopping side effects.......

  • How funny is that!

  • The use of benedryl amongst Parkies is fairly common. It interferes with the cholergenic system (whatever that is) and lessens symptoms. We tried it once and symptoms were greatly reduced but Don was in a total Benedryl fog. I think some of the drugs used on PD are based on trying to interfere with that system.

  • I use Benadryl for allergies for shell fish. My GP told me that I could use Benadryl as a sleep aid as well. I notice that many times Benadryl gives you a morning hangover, not always, but sometimes it last quite a long time.

    Read your labels, a lot of sleep meds are Benadryl but with another name....if in doubt as the pharmacist.

    Roy, how did you get off sinemet.....any side effects? and did the tremors get worse? how about restless leg at night....anyone have this?

  • I got off sinemet almost immediately, for a couple days I reduced the amount. I had only been taking sinemet for about a month. No side effects.

    Like the warnings on the flyers that come with all medicines, a bit of overkill.

    Before, during and after, no discernible change with tremors.

  • That is just so weird that Sinemet makes no difference. Either for some unusual reason the levodopa is not getting into your brain or it's not really PD.

  • That restless leg thing drives me insane! I've been taking oxycodone, but while it stops that creepy-crawly feeling, it makes me too peppy then I'm up all night for a different reason.

  • Oxycodone seems like a big hammer to be hitting restless legs with. Have you and your doc tried anything less narcotic?

  • She seemed so blasé about it! My primary care doc said the only alternative she knows of is one of the agonists and I balked at that. I was thinking of picking up some melatonin at the health food store, thinking that might enable me to snooze right through it.

  • Here are the treatment guidelines for RLS:

    mayoclinicproceedings.org/a...

    It looks quite complete, starting with non-pharmacological interventions and escalating from there.

    I personally regard dopamine agonists as dangerous drugs to only be used as a last resort, so I fully agree with your reluctance to go there.

    Oxycodone is powerful stuff. In states where the drug warriors prevail they make life really difficult for chronic pain patients who really need it, but I digress. In the RLS guidelines they recommend the allegedly mild opioid tramadol. My experience with that, after taking a low dose for a week, was withdrawal symptoms: feeling “uncomfortable in my own skin”, skin feeling overly sensitive, and jumpy, twitchy.

    The more I research and learn, the more I find that doctors cannot be trusted to inform patients of the potential downsides of medications. They may even scoff at patient reports of adverse effects and thereby persuade a patient to continue with a drug that is in the process of doing real damage. So as patients we have to look out for ourselves.

    I encourage you to take a look at the RLS guidelines. By all means try the melatonin - won't do any harm.

  • This is great stuff! Thanks a million!

    I was thinking of trying benadryl (the U.S. version), but the authors seem to discourage that.

  • Interesting! My neurologist just perscribed Amantadine, as I am bothered by the failing movements or dyskinesia which she says are caused by my meds, particularly the Carb/Levo. Though it has all but eliminated my dyskinesia issues, it too has side effects. It seems endless.....a med for a problem creates another problem for which you need another med and so on and so on! It would be so much easier if they just focused on a cure...ah yes, far less profitable though. I went med free for a few years, finally the tremor became maddening and the slowness and weakness began to greatly affect the ability to live my life. The meds allowed me to continue working and live a fairly normal, productive life for 10 more years. Though finally had to retire in 2013 and in 2014 had to make some drastic lifestyle changes. Now the disease and the meds rule what I can do and when I can do it, though still have a pretty good life. Best of luck to you!

  • My boyfriend had a very bad case of dyskenisia that I wanted to take him to the ER and he said no so I gave him some Nyquil and it stopped it and he was calm. I was very surprised. His meds have been reduced and changed and it does not have the problem anymore

  • Everyone is different they  say. Last night before bed I took some Nyquil. My tremors grew worse. Made it hard to go to sleep.

  • You know, of course Amantadine is an anti viral and inhibitor.. is it a MaOB inhibitor? Have you tried it? I want to follow your adventure in treating this disease. Is it an antichoalegetiC(sp)?

  • I have not used Amantadine, Yes, I think it is

  • Dear Roy, what is the difference between taking Benadryl, a drug, from any other medicine?

    Interesting following your journey btw. Thanks

  • I take Benadryl this evening for the first time

  • Worth noting (from Wikipedia):

    "Benadryl is a brand name for a number of different medications. In the United States and Canada, it contains the antihistamine diphenhydramine. In the United Kingdom, it contains either the antihistamine acrivastine (marketed as Benadryl Allergy Relief) or the long acting antihistamine cetirizine (marketed as Benadryl One a Day Relief). Benadryl products are marketed in Australia and New Zealand as a cough medicine and do not contain any antihistamine."

    RE Amantadine: "...its effectiveness as an antiparkinsonian drug is undetermined, with a 2003 Cochrane Review concluding that there was insufficient evidence in support of or against its efficacy and safety.[2]"

  • New Formulation of Amantadine May Help Dyskinesias

    - Feb 19 2015

    An experimental, extended-release formulation of the drug amantadine (Symmetrel®) significantly increases “on-time” without troubling dyskinesias in people with Parkinson’s disease (PD), according to a new study. The results appear in the February 4 online edition of Movement Disorders.

    pdf.org/en/science_news/rel...

    Used by MJ Fox

  • This last visit with the neuro, he said insurance does not like or do not cover timed release meds. Or it is astronomically priced.

  • Including time release sinimet?

    Gosh, I dislike how insurance dictates treatment. I just can't imagine how that works in the interest of the patient.

  • Where are you guys? In the UK? In the US, my Medicare covers several timed-release meds, including Sinemet, Wellbutrin and Tasigna.

  • UK meds cost £100 year total then are free and it's not done by an insurance system. The comment related to Roy who was writing about the USA but also a number of posters from USA who hav written about this problem before . Glad it's not your experience

    healthunlocked.com/parkinso...

    healthunlocked.com/parkinso...

  • congratulations and jubilations! And a cat person to boot what more can you desire!

  • Thank you RoyProp for sharing your process with us.

    I am blessed so far, 6 years in from dx, to not have any shakes.

    What plagues me the most is my stress level will shot up to 100% in a split second,

    and then the dizziness sets in. That is most un-nerving.

    Any suggestions anyone?

    Blessings on your day from Eva G

    :)

  • Stress reliever: cat (can't stop w/ one) or a lap dog

  • Thnaks RoyProp:)

  • exception: our cat named Bob, while sitting next to my keyboard reached out and bit the mouse wire. I had to buy a new mouse. This Bob, before my wife and I traveled to see the neuro, chewed a hole through my wife's purse. While we were gone, chewed off the leg of the horse statue. The list could go on....

  • Life with our bunny rabbit: Pulled the bed out from against the wall to turn the mattress over and found an enormous hole in the wall where Bunn devoured raw sheetrock (ick!). Sat down at the sewing machine, pressed the peddle, nothing happened. Looked underneath to see two little pieces of wire hanging down, newly unconnected to anything. Don't let me get started on books and record jackets! Today, all I have is Bobby, my dog. The days of cleaning out the bunny cage are blessedly over.

  • There is Benadryl then there is Benadryl

    Benadryl is a brand name for a number of different medications. In the United States and Canada, it contains the antihistamine diphenhydramine. In the United Kingdom, it contains either the antihistamine acrivastine (marketed as Benadryl Allergy Relief) or the long acting antihistamine cetirizine (marketed as Benadryl One a Day Relief). Benadryl products are marketed in Australia and New Zealand as a cough medicine and do not contain any antihistamine.

    Benadryl Chesty Cough & Nasal Congestion contains guaifenesin and pseudoephedrine hydrochloride as the active ingredients.s

  • 6+ dollars for Benadryl, The doc said the less expensive off brand is identical ingredient. I paid 1+ dollars for Western Family Complete Allergy (antihistamine diphenhydramine)

  • this forum has people from around the world. It is dangerous to assume that what is available in one country marketed as Benadryl is the same in every other country. it isn't.

    Thanks for giving the actual drug name your medicine contains.

  • Try acupuncture I do it evry week and it helped me with the tremor

  • Thanks for the update RoyProp.

    Interesting to follow your journey as i am not on meds yet and really do not like the thought of starting. Dx 10 mths.

  • Tips on when to start meds as received from my neurologist this last visit.

    1.Meds do not slow or stop the progress.

    2.Meds need to be adjusted as the disease progresses, not that the select med has lost its efficacy.

    3.Meds are identified to treat major symptoms. Tremor being treated separate.

    4.Falls and unseen damage to the brain in elder patients, most likely to end your life. The brain is smaller inside a larger skull. Thereby suffering a slight blow to the head, more serious and usually goes undetected as the victim is not taken to hospital.

    5.Start meds to treat or prevent instability before you fall.

  • Three nights ago I tried Nyquil. Taste is awful and had no effect.

    Last night I tried heavy dose of Benadryl as recommended by my neurologist for tremors. He said if that did not work he would give me a prescription for Amantadine.

    Benadryl did not work either.

  • Maybe I need to give Benadryl a chance. Reading the docs instructions again, he said take Benadryl for a month and if that does not work then he will prescribe Amantadine.

  • Search the internet, warning long term use of Benadryl may cause dementia

  • Unfortunately, I have been advised by my local pharmacist that Benadryl is no longer available in Australia - with no apparent substitute!!!  HELP!!!

  • Last night my tremor was making it difficult to go off to sleep. I took 100mg of Western Family Complete Allergy (antihistamine diphenhydramine) PLUS used electric massage tool on my arm and thighs. Soon after I was asleep.

  • Dr. Sanchez-Ramos said...

    Benadryl (diphenhydramine) is an antihistamine used for treating allergic reactions, like itching, swelling, tearing, and sneezing. It is also is used as a sedative because it causes drowsiness. What many do not know is that diphenhydramine also blocks the action of acetylcholine (eg an anticholinergic effect). In fact this effect is shared with more potent anticholinergic drugs (the belladonna alkaloids) used since the 19th century to treat symptoms of PD (especially tremor and excessive salivation). Anticholinergic drugs are still used as medications for PD today. Examples are trihexyphenyl (Artane) or bentropine (Cogentin). These are much more potent anticholinergics (need a doctor’s prescription) than benadryl (over the counter) and should be used with caution in the elderly because of interference with short-term memory and inhibiton of the bladder and bowel. Benadryl is remarkably safe and was first approved by the FDA in 1947.

    parkinsonhope.org/ask-docto...

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