For a couple years now, I have been using an e-cig to help manage the EDS of narcolepsy. I actually started out trying nicotine patches, but they are expensive, and after several hours I would get intense anxiety and need to remove the patch. I have never smoked cigarettes, even though a high percentage of people with narcolepsy do smoke, something like 62% when last surveyed.
I take methadone to manage the WED symptoms, and hate the ongoing need to request the medication every month and then pick up the paper prescription and take it to the pharmacy. Not to mention that my life insurance costs much more because of methadone use, and I cannot get long term care insurance because of methadone as well. So every now and again I try to slowly cut down my methadone dose to find out how much I really need to manage my symptoms. It also seems that there is an initial increase in WED as I reduce my dose of methadone, which settles down after a couple days.
I have been doing that recently, and have been awakening in the middle of the night with WED raging, as my first dose of Xyrem wears off. That happens again in the morning. I have always associated the increase with the Xyrem leaving my system and never really thought much more about it than that. But the other day it occurred to me that I never get WED during the day, and to ask myself what was different about the middle of the night and morning. Nicotine! I never used my e-cig at night.
If you take the time to Google "health benefits of nicotine" you will find some surprising information. It is neuroprotective and helps reduces the incidence of both Parkinson's Disease and Alzheimer's by half. I wondered if it would help me to take a puff off my e-cig in the middle of the night - not enough to wake me up, but just a bit to help with the WED. It does seem to help, and the WED settles down and I can get back to sleep within 20 minutes or so.
Nicotine does have a unique role in narcolepsy so it may not help people with WED who do not have narcolepsy. Narcolepsy is an autoimmune condition that wipes out the cells in the hypothalamus that produce hypocretin, which is important in regulating the sleep/wake cycle and a host of other things. Nicotine binds to the hypocretin receptors in the brain and acts as a hypocretin agonist for us.
But the protective effect against Parkinson's has me thinking it may help many people with WED, since there are some related nerve dysfunctions in both disorders. I would never encourage anyone to smoke cigarettes, but there are other forms that are safe. I plan on asking around on my narcolepsy forums if anyone else has experienced this.
Nicotine helps me
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Nicotine helps me
Susan
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Re: Nicotine helps me
A LOT of WED/RLSers are listed as smokers. It's often listed as a risk factor. I've often thought that the only correlation is that the smoking helped somehow to control the symptoms or the anxiety.
Ann - Take what you need, leave the rest
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Re: Nicotine helps me
I didn't know that narcolepsy is an auto-immune disorder. I wonder if WED will someday be known as auto-immune. Are the hypothalmic cells dying? or malfunctioning?
The statement we see so often in those short descriptions of WED/RLS, that smoking worsens WED, has always bothered me because I have never come across any evidence supporting it. I haven't combed the literature, but even anecdotally there doesn't seem to be anything. Heck, even on this forum I haven't heard anyone say their WED got better or worse when they quit or started smoking. Wouldn't it be funny if there is a correlation and it's because nicotine improves WED...
The statement we see so often in those short descriptions of WED/RLS, that smoking worsens WED, has always bothered me because I have never come across any evidence supporting it. I haven't combed the literature, but even anecdotally there doesn't seem to be anything. Heck, even on this forum I haven't heard anyone say their WED got better or worse when they quit or started smoking. Wouldn't it be funny if there is a correlation and it's because nicotine improves WED...
Beth - Wishing you a restful sleep tonight
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Re: Nicotine helps me
Beth, narcolepsy is autoimmune, and the hypocretin neurons are completely destroyed. They do not come back.
There is a huge difference between smoking cigarettes and using an e-cig or a nicotine patch. Smoking causes all kinds of problems that other forms of nicotine do not. Pharmaceutical companies are trying to develop a drug out of nicotine that they can charge big money for. But nicotine itself has been shown to protect against Parkinson's and Alzheimer's, and it is being studied for ADHD. My neurologist is happy that I use nicotine instead of Ritalin or Adderall, because the amphetamines actually worsen the risk of Parkinson's and nicotine has a preventive effect.
Plus it seems to still be fending off the WED/RLS. I'm down to 1.5 tablet of methadone a day from 2.5.
Interest that many with WED/RLS are smokers.
There is a huge difference between smoking cigarettes and using an e-cig or a nicotine patch. Smoking causes all kinds of problems that other forms of nicotine do not. Pharmaceutical companies are trying to develop a drug out of nicotine that they can charge big money for. But nicotine itself has been shown to protect against Parkinson's and Alzheimer's, and it is being studied for ADHD. My neurologist is happy that I use nicotine instead of Ritalin or Adderall, because the amphetamines actually worsen the risk of Parkinson's and nicotine has a preventive effect.
Plus it seems to still be fending off the WED/RLS. I'm down to 1.5 tablet of methadone a day from 2.5.
Interest that many with WED/RLS are smokers.
Susan