10 replies to this topic

[Dwight]

Here is my story and I leave this topic open to comments:


How smoking changed my life.



I was diagnosed with narcolepsy at Standford Sleep Center at the age of 11 (17 years ago). I gone through every medication imaginable.


My experiences:
1. Ritalin (noticed that I could stay awake much better but wasn't as strong as one would like)
2. Modafinil (this drug was only good for limiting the effects of strong stimulants and keeping you slightly more awake, problems are that cataplexy is very apparent on this drug)
3. No drugs - (um ya, this doesn't work unless you like sleeping, have no life, and don't have to worry about making any money.... nuff said)
4. Dexedrine (this drug is by far the best for limiting the effects of all narcolepsy symptoms - however, you may notice personality changes as well as other stimulant related side-effects)


Before college, and during college it became apparent to me that my dosage of dexedrine might be higher than I needed. Don't get me wrong, the drug was wonderful for it's regulation of narcolepsy (and still is), but the side-effects of paranoia and agitation(or what I percieved as agitation) were too much. It was eating into my personal life. So I decided to drop from 30mg of dexedrine/day to 10mg. Even though I started taking more naps, I didn't mind because others noticed that I was more mellow and perhaps easier to get along with.

One day, I took up smoking because I had started smoking little by little through a mutual friend.
I didn't notice that the smoking had any effect until discovered that I could completely stop taking the dexedrine and be a able to get through my day just fine.

The most startling thing is that the cataplexy is completely absent. I have had maybe two instances of cataplexy in the last 4 years. I still take regular naps and 5mg of dexdrine to jumpstart my day, but for the most part I feel completely normal. (cigarette - one/hr.)

It's so great.

Although nicotine is a stimulant, there is also strong evidence for it's action as an immunosuppressant. My hypothesis, is that it could act by keeping in check HLA related antibodies that are produced.

Just a thought.


Tim

[Saraiah]

I heard a news story about a guy with narcolepsy whose EDS was so severe that he simply could not wake up in the morning, unless somebody slapped a nicotine patch on his arm awhile before he needed to get up. By the time he took his meds and hit the shower, he was awake enough to be able to take it off and keep going.

When people find a med and it actually WORKS, I'm all for it. And nicotine's no less a med than anything else we all take. But I'm kinda worried about your lungs (not that you should care what I'm worried about). Have you thought about other methods of nicotine delivery? PWN are at extraordinarily high risk of overweight, high blood pressure, high cholesterol, and Type II diabetes (all of which, by the way, we can all do significant things to prevent), and adding Chronic Obstructive Pulmonary Disease to the list is not going to do much to improve your quality life twenty to thirty years from now.

[Gary Berrenbroick]

Here is my story and I leave this topic open to comments:


How smoking changed my life.



I was diagnosed with narcolepsy at Standford Sleep Center at the age of 11 (17 years ago). I gone through every medication imaginable.


My experiences:
1. Ritalin (noticed that I could stay awake much better but wasn't as strong as one would like)
2. Modafinil (this drug was only good for limiting the effects of strong stimulants and keeping you slightly more awake, problems are that cataplexy is very apparent on this drug)
3. No drugs - (um ya, this doesn't work unless you like sleeping, have no life, and don't have to worry about making any money.... nuff said)
4. Dexedrine (this drug is by far the best for limiting the effects of all narcolepsy symptoms - however, you may notice personality changes as well as other stimulant related side-effects)


Before college, and during college it became apparent to me that my dosage of dexedrine might be higher than I needed. Don't get me wrong, the drug was wonderful for it's regulation of narcolepsy (and still is), but the side-effects of paranoia and agitation(or what I percieved as agitation) were too much. It was eating into my personal life. So I decided to drop from 30mg of dexedrine/day to 10mg. Even though I started taking more naps, I didn't mind because others noticed that I was more mellow and perhaps easier to get along with.

One day, I took up smoking because I had started smoking little by little through a mutual friend.
I didn't notice that the smoking had any effect until discovered that I could completely stop taking the dexedrine and be a able to get through my day just fine.

The most startling thing is that the cataplexy is completely absent. I have had maybe two instances of cataplexy in the last 4 years. I still take regular naps and 5mg of dexdrine to jumpstart my day, but for the most part I feel completely normal. (cigarette - one/hr.)

It's so great.

Although nicotine is a stimulant, there is also strong evidence for it's action as an immunosuppressant. My hypothesis, is that it could act by keeping in check HLA related antibodies that are produced.

Just a thought.


Tim

Tim,

I haven't smoked a cigarette since October, 2004 after smoking for about 14 years and trying to quit at least a dozen times. I wasn't diagnosed with narcolepsy until April, 2008 but looking back I can see that my symptoms became more evident after I stopped smoking. At the time I wrote it off as withdrawal or depression. I just started drinking more coffee. Nicotine and whatever else is in cigarettes seems to have suppressed some of my symptoms. That being said, there is no way I am going to start smoking again.

Have you experimented with nicotine replacement products instead of the cigarettes? I would think that would be the lesser of two evils.

Gary

[91GT347]

I honestly think you may be on to something. I have been into extreme sports (skateboarding,BMX,surfing,motocross,ect), since I was a kid. started at about 8yrs old. I have been smoking since I was a teen. I used to have episodes all the time of my legs giving out when excited. For example, when skateboarding, and trying to learn a new trick. The first time I would land it. I would about and sometime would fall to the ground. Just because pulling off the trick would get me so excited. Ofcourse then I lived with my parents who were VERY much against me smoking, ofcourse. Even when I was old enough to make my own choice I would not do it in front of them, or in their house. Since I moved out, and started smoking more I dont have those episodes nearly as often. I never thought about it until you mentioned it.

[dejavu]

I smoked 3 1/3 packs of cigarette. 10 cups of coffee a day and 5 pounds of sugar a week fighting what they currently call IH. I'm getting a spinal tap to see if it's n w/ c.

It was all I could do to stay awake. Cigarettes in NYC cost $12/pack. That over $40/day out-of-pocket and it's only going to get worse.

Plus, you can't go out because they don't allow smoking. I couldn't go to cafe's or bars anymore. And, without cigarettes I couldn't socialize.

Now that I'm on Xyrem, the cigarettes taste awful, I don't have the cravings and I don't feel the effects.

I've cut down but have been unable to completely quit.

I went to city hall to try to stop some of the new anti-smoking laws they are passing. You will be a prisoner in your own home if you rely on this as treatment. I have been for years in NYC.

But, even with all of the substances, I was always extremely sleepy. These substances for me barely worked, but they were all I had.

[Marcia.was.here]

BAH! Smoking! How I hate it!

I have given up every other recreational drug I have ever done, (and there were plenty!) with a drop of a hat. No rehab, no meetings, just got bored and quit doing them. Cigarettes though..... I cant seem to kick them. Its terrible. I will quit for little bits at a time and then something will set me off, and I am at it again.

I do agree they help with waking up, and staying that way, and help me keep more focused and calm. If I am feeling tired I can go smoke and get another half hour to my day. I agree with Sariah though. I am worried about my lungs. It is to the point after so many years, I can feel the damage is starting to happen. While I am in quit mode I physically feel so much better!

Some how I dont see docs prescribing nicotine patches for narcolepsy any time soon though. Right now its cheaper to just smoke. =(


Great subject!

[AckDreams]

I recently took up smoking and I find that my first cig. of the day makes me instantly exhausted and my arms feel very heavy. Usually by the time I finish and am washing my hands in the sink I fall into a moment of automatic behavior. But any cigs after that it seems to keep me awake. Before I was recently diagnosed with N, back when I thought I just had low blood pressure and a tendency to faint, I thought maybe smoking seemed to make me faint less because it raised my blood pressure and or lowered my tacky heart rate. I hate the smell of smoking, I hate feel judged for it, I hate how much it costs, but I swear I'm more energetic as a light smoker then I ever was as a non smoker. I'm nervous to let my doctor know I recently started smoking for fear of being judged or having it effect my health insurance.

[lyndawn2]

For those who are not smokers already (and for those who are) they have the electronic cigs now. Only the nicotine and nothing else, and you can use it anywhere.

LYnette

[narcolaughable]

I hope someone seriously researches this treatment. It seems clear that Orexin A is key to both smoking and narcolepsy. But be warned, the causes of Narcolepsy may simply increase your susceptibility to nicotine addiction, and as we all know, self-medication is the brain's excuse of choice for any addiction.

In 2009, after almost 25 years of addiction, I decided that nothing was more important than quitting smoking... watching my Dad deteriorate due to emphysema certainly catalyzed that decision. I am proud to say that 2010 was my first full year without a cigarette since 1986.

At the same time I tried more intense drug therapy for Narcolepsy adding Provigil and Xyrem (and for a short time an anti-depressant) to my established regiment of 15mg/day Adderall XR. Had I not had insurance, my drug bill would have been around $5000/ month. I have found that scheduled, regular naps; reducing my intake of caffeine and alcohol; and religious adherence to my nighttime sleep schedule have been even more effective treatments for my Narcolepsy than cigarettes. I am off the Provigil and Xyrem, and I am currently in the process of weening myself off of the Adderall XR (down to 7.5mg/day, now) as I have moved to a country where Adderall is not available, and I will report back soon.

I will not be returning to cigarettes in any case. The downside is too significant.

Good luck to all in finding a treatment compatible your lifestyle.... and a lifestyle that is compatible with your condition.
From Wikipedia:


The neuropeptide, hypocretin-1 (Orexin A), may initiate a key signaling cascade, a series of closely linked biochemical reactions, which maintains tobacco addiction in human smokers and could be a potential target for developing new smoking cessation treatments.

"Blocking hypocretin-1 receptors not only decreased the motivation to continue nicotine use in rats, it also abolished the stimulatory effects of nicotine on their brain reward circuitries," said Paul Kenny, Ph.D., the Scripps Research scientist at Scripps Florida who led the study.*


The discovery that an orexin/hypocretin receptor mutation causes the sleep disorder canine narcolepsy^[6] in Doberman Pinschers subsequently indicated a major role for this system in sleep regulation. Genetic knockout mice lacking the gene for orexin were also reported to exhibit narcolepsy.^[7] Transitioning frequently and rapidly between sleep and wakefulness, these mice display many of the symptoms of narcolepsy. Researchers are using this animal model of narcolepsy to study the disease.^[8] Narcolepsy results in excessive daytime sleepiness, inability to consolidate wakefulness in the day (and sleep at night), and cataplexy, which is the loss of muscle tone in response to strong, usually positive, emotions. Dogs that lack a functional receptor for orexin/hypocretin have narcolepsy, while animals and people lacking the orexin/hypocretin neuropeptide itself also have narcolepsy.

[magpie]

I don't believe its been scientifically studied, but I remember an NIMH newsletter talked about anecdotal evidence that smoking decreased the symptoms of schizophrenia as well.
I've never smoked, and don't plan to, and wouldn't encourage anyone to either since the health, social and monetary costs are just too great for everyone though.

[sueno]

While every medication has a side effect, the side effects and health suffering/decline from smoking are very well documented and in many cases deadly serious with long drawn out suffering. Becoming addicted to an expensive and scientifically proven deadly carcinogen is not a good bet for overall health and longevity. However, to each their own. But please don't smoke around people you care about as it has now been proved not only is that smoke horrible for you, but second hand smoke is bad for those around you as well.