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Topic Nicotine, PD and the delicate balance of meds Go to previous topic Go to next topic Go to higher level

By mylove On 2011.07.07 13:28
So I have an odd question to lob out at the group. Shakydog's been doing pretty good for a long time now (PD-wise), but we are scratching our heads at a new symptom and some recent observations.

Shakydog is a long time smoker. He's also had his meds pretty balanced and working well for several years. We were down to the point where once we had seen the new movement disorder specialist last year and she swapped out the regular Requip that was causing nausea for Requip XL, which fixed that issue, he was feeling pretty doggone good. She was satisfied with his stability and commented that his progression was very slow and well handled with the medication.

About two and a half months ago, we had a cardiac scare which put him in the hospital for observation overnight. During that time, the docs said that he really needed to quit smoking. Since he was already 24 hours into the process, he decided to quit (MUCH easier when you don't have the neurochemicals to promote physical addiction!). Since then, we have had some issues.

All of a sudden, he began having problems with his medication balance. We finally figured out that he was getting the wrong dosage of his meds; what was the correct dosage a week ago suddenly was wildly off. The nicotine in the cigarettes appears to have had a balancing, carrier-type effect which stretched out the meds and eliminated most of the high/low swings. Without the nicotine, the balance of all of his meds was off. Nearly three months later and after some dose finessing (in conjunction with his neuro), we've finally found a better balance. At first she did not want to admit the connection with the nicotine and the meds. I believe physicians are so primed to view smoking as 'bad' (as they should be) that it's hard for them to admit a benefit from the nicotine. Finally, faced with several studies in our hand that showed a beneficial nicotine use in PD, she conceded that it was true and that some people used the patch to reduce their Sinemet dosage. We had thought about trying that, but he's balanced now, so we put that idea on ice.

Now, we have another weird symptom. He's losing his voice. Whereas prior to quitting smoking, a low whispery voice was our cue that he was low on meds (wearing off, overstressed for his meds, or forgotten a dose), now it's the norm. At our recent visit she had no explanation for this sudden development other than to prescribe vocal therapy. While I don't disagree, I still find it weird that it happened out of the blue, right around the same time we had the other issues. I'm willing to concede that this may just be progression, but it just seems way too coincident.

Does anyone have any thoughts on the subject? I know, I know - it's a known symptom, but could this be one more of those temporary-backslide things following a health event, or do you think it's permanent?

I'd also welcome anyone else's thoughts on the nicotine. I have a slew of studies on it, and they are very interesting. We know that caffeine (a similar compound) is frequently used as a catalyst or carrier type drug for other compounds. Caffeine is commonly used in migraine medications, where it boosts the other drugs across the blood-brain barrier so they take effect more quickly and efficiently. I don't think it's unreasonable to imagine that the nicotine was working in a similar fashion. And if they are using it to reduce dosages of Sinemet.... and your Sinemet 'window' of usage can run out if you use it too long... then is it just the bad rap of smoking killing the usage of nicotine? Points to ponder...

By karolinakitty On 2011.07.07 14:44
mylove.....I can't remember where i read it.... i tried to research it again but found nothing...but several years ago when first being diagnosed, i read this:
while we don't advise the non-smoker to start smoking it has been found that smoking actually aids the PD patient with tremors and... i forget what else..but this stuck in my mind....
I know that with drawl of any kind, will cause your PD symptoms to flare up, things that you didn't have before will come out...this happened to Jim with the Cymbalta....I know its a hard core drug, but after a few weeks the symptoms went away.....
I also read somewhere, excuse me, i've read, like you until i'm blue......
where changing habits such as social drinking and smoking can bring out more symptoms of the PD. The "habits" "HID" the symptoms, so then after changing these habits, the symptoms "appeared"...whether or not they are temporary, i hope so for Shakydog....would hate that......

just like getting on and off these antibiotics for this staph we are dealing with... I am hoping the extreme symptoms he is dealing with while on them won't stick around after he is off of them........

this was the only thing I found close to what i originally read:
An inverse association between cigarette smoking and PD has been observed consistently during the past 30 years (6). Numerous case-control studies worldwide demonstrate reduced PD risks among smokers (roughly half those of nonsmokers (714)) with some studies indicating strong inverse dose-response gradients (11, 13, 14). Cohort studies, in which data on smoking were obtained before the onset of PD, provide corroborative evidence for the seemingly protective effect of smoking (15, 16), which suggests that the association is not an artifact of recall bias. Selective survival of nonsmokers to the natural age of onset of PD also does not appear to be a satisfactory explanation for the effect of smoking (17). Instead, biochemical hypotheses have been advanced. Components of cigarette smoke may afford neuroprotection by reducing enzymatic activity of type B monoamine oxidase (MAO-B) in the brain (18). MAO-B catabolizes dopamine (19) and may activate neurotoxicants similar to the established experimental PD-inducing chemical 1-methyl-4-phenyl-1,2,3,6-tetrahdropyridine (MPTP) (20). Recently, a MAO-B-inhibiting compound in tobacco, 2,3,6-trimethyl-1,4-naphthoquinone, was found to attenuate the dopaminergic system toxicity of MPTP in experiments on mice (21). However, evidence from similar experiments with MPTP and nicotine has been inconsistent (22, 23).

By mylove On 2011.07.07 15:55
Hmmm... there may be some validity to the changing habits thing. I still think (and per even from your quote "Components of cigarette smoke may afford neuroprotection by reducing enzymatic activity of type B monoamine oxidase (MAO-B) in the brain. MAO-B catabolizes dopamine...") that there's a chemical explanation for the process somehow involving the nicotine. I was one of the strongest supporters of him quitting, and still am, but it is worth the thought.

I too am hoping the vocal changes aren't permanent. He finds that it can be positional; if he rears back his head and thinks about projecting he can use his normal voice. If not, and he lets his head 'turtle' forward without thinking, we have the whisper.

The worst of it is that now, without the visual/audio cue that something is awry, I have to reevaluate how to tell how he's doing. Over the past several years we've 'trained' ourselves to read each other's nonverbal cues, and we were pretty comfortable with that. Now, I find myself scrambling to find footing again, and I pester him constantly "How are you doing? You doing ok?" I'm totally thrown off. To complicate things, he is the kind of person whose angry voice (loud, clipped) sounds very much like the one he's having to use to get any sound out. So we bounce from soft and whispery (means 'Something's wrong' in my previous training) to loud and harsh (previously meaning 'I'm angry'). I feel like a dog trying to learn a new language, and our interactions are suffering. I'm also having to buffer his interactions with the kids, because his cues to them are being read the same way. I don't want it to destroy the bonds he's built with these kids, but they are teenagers and sensitive, and the more I try to explain, the more it's coming off as 'You're just making excuses for him being a jerk again'. When it isn't that at all - it's just the darn voice. :(

He sees an ENT soon to see if it could be something in his throat. He feels like there's something in his throat. I hope it's something easy.

This too shall pass, right?

By karolinakitty On 2011.07.07 17:11
You and me both on the cues we've used....

Just like mother hen again, I find myself checking on him endlessly, because i want to make sure everything is ok with these added meds.......it's like starting over again......it's tough with the teenagers.. i know what you mean by sensitive.....
it's just a re-inventing process again until we work something out....we'll get there...

you'll get there....as we both know it takes time and energy that sometimes we just don't feel we have anymore of...then we get it worked out.......and it all is well with the world again....
Ya know..something we recently talked about was the male change of life..... that maybe it could be affecting him in that way, through the PD, rather than in the normal way males go through it... and depending on how late they go through it changes will happen more often..... just a thought there too.....we expect it in women in their late 40's and 50's BUT we don't always consider it in the male population.....

By LOHENGR1N On 2011.07.07 19:29
ML, I'm a smoker and my Neuro has no problem with it. However my pcp is always pestering me to stop. I've told Him that nicotine helps Us Parkinson's Disease patients however wether from Insurance industry pressure or the current crusade of blaming every ailment under the sun's onset to smoking or second hand smoke he persists. He even went so far as to suggest I experiment myself to see if it goofs up my medication?!? I myself believe that many well meaning Doctors just don't get it. Everything We do has effects on everything we take! Nicotine helps Us, Caffeine helps Us BUT this flies in the face of medical wisdom! Nicotine makes people nervous, caffeine gives one the "jitters" (coffee nerves). You have to cut them out.....bam! Ours med's are screwed up! Even losing or gaining weight has effect on our levels of medicine. Until medicine as a whole learns this fact and views quality of life verses length of life. Views a Person as a whole unit instead of individual organs, We have to advocate for ourselves and our loved ones. As we all know knowledge about this Disease is lacking in so many ways even among the Medical fields (which is why for the many new People here on the Forum We say the emergency room isn't a good place to end up when you have Parkinson's. Sometimes this can't be avoided but the lack of knowledge is very evident in that surrounding). Take care, best of luck and hang in there.

By packerman On 2011.07.08 10:52
re: visual cues
i notice that when he's coming off a dosage, that his tongue flutters/tremors.
it's something i can mention, and no one else seems to notice, so it's not embarassing to him. he also gets the whispering voice at that time.

he went for LSVT for the whisper. it helped A LOT, but i have to remind him "Think Loud" and then he'll project so i can hear him. interesting about your positional observation. gonna see if that's the case for us too. thanks for the idea!

Pat

By mylove On 2011.07.08 12:35
You may have him try it, for sure. If there's a simple aid like that which can help, all the better. I watched it for myself: while he was speaking, he changed positions of his head/neck from the pushed forward to the very upright, and you could actually hear the range from whispery to normal increasing as his head position changed, and vice versa. It was bizarre. I wonder if the dropped position puts some pressure on the throat and impedes the voice box. Hmmmm.....

By lurkingforacure On 2011.07.09 20:25
mylove,

We used the nicotine patch for years, right after dx in fact. It worked very very well and we only ever used the 14mg, once a day, in the morning. He noticed, after several years, that it was losing the "smoothing" effect it had, and making his on/offs much harder. We quit using it, which was too bad, because it really helped smooth out his day and it also greatly enhanced his mood. Whether that was because he felt better because he was moving better, or just because nicotine itself actually enhances mood, I don't know. But the offs just got too hard to balance so he quit using it.

BTW, we never kept the patch on for a whole 24 hour period. We'd slap it on in the morning, and he'd take it off a few hours before bed, otherwise he'd be up all night. One thing I would hazard a guess at, though, is this: since we stopped the patch, our progression has been markedly faster. We've had some real stressors in that time frame as well, though, so it's hard to say. I know many PWP who are considering using the patch for PD on other forums, since there seems to be more and more research behind it.

Forgot to add: if he was constipated, boy that nicotine patch would fix that in less than fifteen minutes, it was amazing. It also really really helped with his pain, one of his worst symptoms, which probably explained why he was in such a better mood when he had the patch on: chronic pain gone. We now use those five hour energy drinks which help a lot because, we've figured out, the caffeine. I don't like him to drink one everyday though but am realizing he does what he feels he needs to do to get by for the day, so I say nothing.

By LotsaBob On 2011.07.11 13:17
Al,I use to smoke up until about two years ago. I read your response to mylove. So I e-mailed Sally to look at the PD forum. She e-mailed me back that she would throw me out if I started smoking again. I swear, I get no respect anymore. Just kidding. I don't know what I would do without her. She not only is my wife but my best friend too. So, guess I'll pass on the smoking issue. I've got it made now and I don't want to rock the boat. Speaking of which. I would like to get one of those too but she says no to that also. She always uses the same excuse. "How you going to get in it. I just say,"fall".

By LOHENGR1N On 2011.07.11 23:32
Bob, We both know it's not the getting into the boat that is too much of a problem! The main problem is staying in the boat! But you're right it's best not to rock the boat especially when you have Parkinson's!

By shakydog On 2011.07.12 01:38
I was out in the boat tonight - I can get some real action on a bass jig. Getting in the boat isn't as tough as getting the boat out of the water. Tip toe down a 4 inch trailer rail to clip the tie rope!!! Make sure you leave your wallet and phone in the truck. I don't miss smoking, but it does feel like my meds are out of balance and I seem to have a whole lot more free time.

Its all right ma, I'm only sighing
Shakydog

By mylove On 2011.07.12 09:09
Yep, gotta say that it's hard to watch my beautiful man monkeying from bumper to trailer hitch like he was on a balance beam, trying to muscle the boat onto the too-small trailer. Then again, I don't think the physical therapist could have come up with anything more effective for balance, so - rock on, you guys who keep on keeping on. Keep up the creativity and may all your fish be keepers!

By karolinakitty On 2011.07.12 13:08
Boat ..did somebody say boat.....

Our pontoon works great for us...we have a non-skid step stool to help get him on the dock when the water is low.....like now since we haven't got any rain in a long time. waters gone down, we are thinking maybe some kind of air pressure lift as we have a huge air compressor in the boat house, can run a line to the boat....at least we don't have to load and unload. our docks about 100yards from the house...

By mylove On 2011.10.02 11:11
Okay, all. After KK's post on Requip causing kidney problems, we got curious and went looking at Requip, since we'd not heard of that particular side effect. Didn't find what we were looking for, but wonder of wonders, look what we DID find:

Warning!
Smoking can affect the amount of ropinirole in the blood. If you give up or start smoking while taking (ropinerole) tablets your doctor may need to adjust your dose of this medicine. </b>

http://www.netdoctor.co.uk/medicines/100002252.html

I am VERY VERY ANGRY at the moment. Where in the world was this information in July?? Not anywhere in Google search. Sure explains a lot. I guess I should be thankful that six months after the stopping-smoking event we have finally reached some kind of equilibrium, but it would have been nice to have been taken seriously when we were trying to claim that it was an issue six months ago. Maybe it could have been made easier. At any rate, we would have at least been prepared for some kind of change. Grrrrrr....

By LOHENGR1N On 2011.10.02 11:38
ml, As an add on to this thread and smoking, I recently went to get my new service dog and they had a no smoking policy at the place which greatly reduced my intake for 3 days (thankfully no longer). I am now two weeks later just getting somewhere back to "normal". That interruption in levels...well....I was surprised at the profound effect it had on Me. All my symptoms were intensified! Morning function before kick-in of med's was a mess, I wasn't bouncing off walls, I was flopping to the floor before reaching any walls. I fell so many times the first few days I was back I was scared that this was the way it was going to be from now on. Thankfully as I said I'm getting back to "normal" for Me. I know that smoking has adverse effects from all the chemicals in cigarettes however as We go along we're discovering our medications and the side effects of them are pretty damn bad too! Not that this adds anything to this thread, just figured I'd toss it in for consideration to any who are contemplating quitting smoking or those smokers Who have been in a Hospital or such for a few days and are experiencing unexplained increases in symptoms. Take care, best of luck and hang in there.

By karolinakitty On 2011.10.03 08:38
mylove... I found out about the Requip through a book review on Amazon.com...the book was called Parkinson's Disease.... Diagnosis and Clinical Management....by Stewart A Factor and William J Weiner....it refers to all dopamine agonists..it's very clinical and full of big words I had to google... but the one I found first was a Nephrologist who did a study with RLS, PD and the agonists... that book must have been taken off the list because I couldn't find it again...

By shakingpt On 2011.10.04 22:00
Parkinson's Disease: Nicotine Reduces Levodopa-Induced Dyskinesias

ScienceDaily (Oct. 24, 2007) The Parkinson's Institute and Clinical Center has announced research showing that intermittent nicotine treatment reduces medication-induced dyskinesias by as much as 50 percent in models of Parkinson's disease. Levodopa, the most common drug used to treat Parkinson's disease, is initially very effective.


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