kimberlyaz

Dr. Ristanovic's Findings On Weight & Narcolepsy

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At the Narcolepsy Network conference in October 2008, Dr. Ruzica Rustanovic from Evanston Northwestern Hospital in IL presented interesting findings about weight & narcolepsy.

Dr. Ristanovic combined patient data from her own patients, and from the patients of two other physicians that she is not in practice with. The data showed that every single patient who had been prescribed Xyrem had lost weight, whether their Narcolepsy occurred with or without Cataplexy.

Her paper has not yet been published, so there were no handouts available from the presentation. But she did host a support group separately from her presentation to talk individually with patients about weight struggles.

Some of the other issues include hormones and metabolism. She talked about how narcoleptic rodents ate less than their non-narcoleptic peers, but still gained weight. This is something that a lot of patients (including myself) have seen first-hand. Metabolism is definitely affected.

During the support group, I was asked to pursue adding this forum to our online community so that we may continue the discussions about Narcolepsy & Weight, share our struggles and solutions.

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I missed that session but...

My brother with N lost a lot of weight on Provigil. He said it isn't because of eating less or anything like that. He said its from having enough energy to finally do everything he used to just want to do. So now he has the energy to work out.

I just started my Xyrem... I really hope I lose weight too! :)

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I can't use Xyrem because of my myoclonus, but my doc did discover I'm hypothyroid and since starting hormone treatment I've started losing some weight. I couldn't before...I tried diet and exercise and nothing worked except outright starving myself during a time when I was too broke to buy food. Thank goodness something's finally working! Keep your fingers crossed it continues...

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I can't use Xyrem because of my myoclonus,

Sorry this is a bit off topic - we could move it to another thread if that makes sense.

Hello Dogdreams,

I've got a kind of melodramatic looking movement disorder - myoclonus and/or dystonia thing too, and various other bits and bobs of brain injury problems that are all worse the less good sleep I get.

Socially it's a kind of tiring combination with cataplexy - if I twitch too violently, my friend gets a fright and jumps, I get startled by her reaction and (and annoyed that I'm twitchin in public and getting stared at) and get cataplexy, she bends down to check on me and we're like a two person version of that wave thing crowds do at sports events, forgot the word for it.

I've been wondering about the drugs, and haven't known who to ask. Have you found any drugs that can help the one without makng the other worse?

I was guessing that the baclofen or other sedative type medicines for movement disorders would make the sleepyness and maybe the cataplexy worse, but stimulants could maybe make the myoclonus /dystonia thing worse. Have stimulants been OK for you, or do you have to manage it without drugs? Was your doctor worried about Xyrem interacting with another drug, or making the myoclonus worse? Lots of questions - pls don't feel you should answer if I'm being too nosy.

Petra

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At the Narcolepsy Network conference in October 2008, Dr. Ruzica Rustanovic from Evanston Northwestern Hospital in IL presented interesting findings about weight & narcolepsy.

Dr. Ristanovic combined patient data from her own patients, and from the patients of two other physicians that she is not in practice with. The data showed that every single patient who had been prescribed Xyrem had lost weight, whether their Narcolepsy occurred with or without Cataplexy.

Her paper has not yet been published, so there were no handouts available from the presentation. But she did host a support group separately from her presentation to talk individually with patients about weight struggles.

Some of the other issues include hormones and metabolism. She talked about how narcoleptic rodents ate less than their non-narcoleptic peers, but still gained weight. This is something that a lot of patients (including myself) have seen first-hand. Metabolism is definitely affected.

During the support group, I was asked to pursue adding this forum to our online community so that we may continue the discussions about Narcolepsy & Weight, share our struggles and solutions.

I have had three episodes related to stress were my N & C has got a lot worse. Each time I gained weight a stone (14lbs) within a couple of months. As I am so paranoid about my weight (fitting into clothes) I tried eating less and excercising more when the weight gain started. No joy and I find it really frustrating. I gain the weight on my bust (up three bra sizes), stomach and back. I look like a weeble. My arms, legs, bum and face stay the same. Yet when I put weight on naturally ie at Xmas I put the weight on my face, hips and bum. Provigil did make me loose the first stone, bereavement made me loose the second stone but I am battling with trying to loose the last stone. Each time I lost the weight before the next stressful weight gaining episode started. So I now have two sets of clothes, the larger set is the smaller sizes as my weight had never really flutuated for 20 years. This set is underneath my spare bed as I can't fit in it. I have cut out gluten from my diet, I don't have caffine, alcohol and have never smoked. I do have IBS, highly sensitive to gluten and have poly cystic ovaries. I take dexedrine but only 2.5gms as it makes me shakey, depressed and unable to sleep at night. When I took 10mgs I had no appetite.

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I have had three episodes related to stress were my N & C has got a lot worse. Each time I gained weight a stone (14lbs) within a couple of months. As I am so paranoid about my weight (fitting into clothes) I tried eating less and excercising more when the weight gain started. No joy and I find it really frustrating. I gain the weight on my bust (up three bra sizes), stomach and back. I look like a weeble. My arms, legs, bum and face stay the same. Yet when I put weight on naturally ie at Xmas I put the weight on my face, hips and bum. Provigil did make me loose the first stone, bereavement made me loose the second stone but I am battling with trying to loose the last stone. Each time I lost the weight before the next stressful weight gaining episode started. So I now have two sets of clothes, the larger set is the smaller sizes as my weight had never really flutuated for 20 years. This set is underneath my spare bed as I can't fit in it. I have cut out gluten from my diet, I don't have caffine, alcohol and have never smoked. I do have IBS, highly sensitive to gluten and have poly cystic ovaries. I take dexedrine but only 2.5gms as it makes me shakey, depressed and unable to sleep at night. When I took 10mgs I had no appetite.

I have seen scientific reports that say that the lack of restorative sleep is the reason we put on weight. We need to get enough stage four sleep or the metabolism doesn't kick in, so to speak. I put wieght on and couldn't get it off, no matter how hard I tried, and gave up in the end. Then I was diagnosed with sleep apneoa and given a CPAP machine. My sleep is a bit better, though not hugely, but suddenly the weight began to come off. I have to diet, but at least I now get results, whereas I didn't before. This would also explain why folk with other sleep disorders and things like fibromyalgia also often have weight problems.

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At the Narcolepsy Network conference in October 2008, Dr. Ruzica Rustanovic from Evanston Northwestern Hospital in IL presented interesting findings about weight & narcolepsy.

Dr. Ristanovic combined patient data from her own patients, and from the patients of two other physicians that she is not in practice with. The data showed that every single patient who had been prescribed Xyrem had lost weight, whether their Narcolepsy occurred with or without Cataplexy.

Her paper has not yet been published, so there were no handouts available from the presentation. But she did host a support group separately from her presentation to talk individually with patients about weight struggles.

Some of the other issues include hormones and metabolism. She talked about how narcoleptic rodents ate less than their non-narcoleptic peers, but still gained weight. This is something that a lot of patients (including myself) have seen first-hand. Metabolism is definitely affected.

During the support group, I was asked to pursue adding this forum to our online community so that we may continue the discussions about Narcolepsy & Weight, share our struggles and solutions.

I missed that lecture sadly, I wish I hadn't. I'm glad you brought it up here. Thanks Kimberly!

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I have had three episodes related to stress were my N & C has got a lot worse. Each time I gained weight a stone (14lbs) within a couple of months. As I am so paranoid about my weight (fitting into clothes) I tried eating less and excercising more when the weight gain started. No joy and I find it really frustrating. I gain the weight on my bust (up three bra sizes), stomach and back. I look like a weeble. My arms, legs, bum and face stay the same. Yet when I put weight on naturally ie at Xmas I put the weight on my face, hips and bum. Provigil did make me loose the first stone, bereavement made me loose the second stone but I am battling with trying to loose the last stone. Each time I lost the weight before the next stressful weight gaining episode started. So I now have two sets of clothes, the larger set is the smaller sizes as my weight had never really flutuated for 20 years. This set is underneath my spare bed as I can't fit in it. I have cut out gluten from my diet, I don't have caffine, alcohol and have never smoked. I do have IBS, highly sensitive to gluten and have poly cystic ovaries. I take dexedrine but only 2.5gms as it makes me shakey, depressed and unable to sleep at night. When I took 10mgs I had no appetite.

I feel like you're telling my story and right now the weight gain in making me so miserable I wonder why I even bother getting out of bed. Like you said, every stressor has added more weight and this time it was 30 lbs. I'm very much in need of someone to chat with to keep my spirits up while going through a very difficult time.

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This weight loss with zyrem is very interesting. I was overweight for almost 30 years when I finally went to the first sleep clinic. After the first night time sleep study, the doctor told me that if I would lose 45 lbs he thought I would be fine, because I had mild sleep apnea. He did prescribe provigil for my sleepiness, and for several months, I felt "normal." I lost the 45 lbs, ate healthy, exercised some, but mostly just enjoyed my life. The thing was the provigil, kept me awake during the day, and then at night I slept like a baby, Prior to this, I would sleep maybe three-four hours/night and was always tired, or sleepy. Then seems like all at once the provigil stopped helping much, they upped the dose, but not much changed. I went back to the sleep clinic, but saw another doctor. He did another sleep study, and also the day time studies. Of course, I slept about 6 hours that night, and tried to sleep all day; so, I was diagnosed with narcolepsy. The weird thing is I have gone back to my old eating habits for over a year now, and gained maybe 5-8 lbs back. Prior to provigil and zyrem, I would have gained the weight back in a couple of months. I have been eating whatever I want, whenever I want, and basically have stayed a normal weight. I am 59 years old; so, weight is usually much harder to keep off as we age. It must be the meds and the quality of sleep.

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This weight loss with zyrem is very interesting. I was overweight for almost 30 years when I finally went to the first sleep clinic. After the first night time sleep study, the doctor told me that if I would lose 45 lbs he thought I would be fine, because I had mild sleep apnea. He did prescribe provigil for my sleepiness, and for several months, I felt "normal." I lost the 45 lbs, ate healthy, exercised some, but mostly just enjoyed my life. The thing was the provigil, kept me awake during the day, and then at night I slept like a baby, Prior to this, I would sleep maybe three-four hours/night and was always tired, or sleepy. Then seems like all at once the provigil stopped helping much, they upped the dose, but not much changed. I went back to the sleep clinic, but saw another doctor. He did another sleep study, and also the day time studies. Of course, I slept about 6 hours that night, and tried to sleep all day; so, I was diagnosed with narcolepsy. The weird thing is I have gone back to my old eating habits for over a year now, and gained maybe 5-8 lbs back. Prior to provigil and zyrem, I would have gained the weight back in a couple of months. I have been eating whatever I want, whenever I want, and basically have stayed a normal weight. I am 59 years old; so, weight is usually much harder to keep off as we age. It must be the meds and the quality of sleep.

I got his off Wiki..... Thought it was interesting and may be similar to what you went through with your weight loss during your provigil use.

Studies on modafinil (even those on healthy weight individuals) indicate that it has an appetite reducing/weight loss effect.[36][32][37][38][39] All studies on modafinil in the Medline database that are for one month or longer which report weight changes find that modafinil users experience weight loss compared to placebo.[40]

However, the prescribing information for Provigil notes that "There were no clinically significant differences in body weight change in patients treated with PROVIGIL compared to placebo-treated patients in the placebo-controlled clinical trials." [41]

In experimental studies, the appetite reducing effect of modafinil appears to be similar to that of amphetamines, but, unlike amphetamines, the dose of modafinil that is effective at decreasing food intake does not significantly increase heart rate.

Also, an article published in the Annals of Clinical Psychiatry, presented the case of a 280 pound patient (BMI=35.52) who lost 40 pounds over the course of a year on Modafinil (to 30.44 BMI). After three years, his weight stabilized at a 50 pound weight loss (29.59 BMI). The authors conclude that placebo controlled studies should be conducted on using Modafinil as a weight loss agent.[36]

Conversely, a U.S. patent (#6,455,588) on using modafinil as an appetite stimulating agent has been filed by Cephalon in 2000.

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In experimental studies, the appetite reducing effect of modafinil appears to be similar to that of amphetamines, but, unlike amphetamines, the dose of modafinil that is effective at decreasing food intake does not significantly increase heart rate.

I lost 30-40 pounds on Provigil in a 3 month period. I also knew I was losing the weight and tried to eat as much as possible to prevent the weight loss. I literally ate until it hurt 3-4 times each day. In that final 3 week period, I lost 10 pounds. I also lost some weight on amphetamine, until I had to add BP meds. My heart rate that had stayed the same throughout the Provigil was 150/100 on amphetamine. With the BP meds, I gained bakc much of the lost weight. Yippee!

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I know for me there was a plateau, and it didn't last too long. I eventually started gaining a bit of weight back.

has anyone that has lost weight because of meds found that there is a plateau or does it eventually become a problem? Right now I'm not worried as I was about 20-25lbs over my desired weight, but I'm wondering what will happen once I get to a weight Im comfortable with...

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I know for me there was a plateau, and it didn't last too long. I eventually started gaining a bit of weight back.

Each time I gained weight (three times now) I always put on the same amount. Just over 14lbs. The same amount I gained when I was 9 months pregnant. Its strange because I have gained the weight each times within two months and ended up looking like a weeble. Fat back, bloated stomach (looking like 9 months pregnant) and a huge bust. I keep having to buy bigger bras. I am getting shoulder and back ache for lugging around two huge water melons. They are really getting me down.

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I did loose weight when... but not until about 9 months later... cause i started eating less and exercising. I try not to eat processed food...ie mac an cheese, white bread, candy or junk food. Im at 212 now and gaining muscle. Its about consistency for me.. if i eat without thinking about what im eating i gain weight. I don't count calories or anything.. just eat a visualized sized portion. Complex carbs about the size of my fist, protein the size of my plam.. and as much veggie as i want as long as its not cooked in oil or butter!

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I remember my very first time I was prescribed a course of Ritalin.

Without dieting, without exercising.

I became very slim, even toned, like someone who went for a jog everyday.

Shame that didn't last for long :(

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if i eat without thinking about what im eating i gain weight.

Yes! My husband and I call this "mindful" eating. Being aware of what goes into our mouths and thinking before anything does go in there!

Between the 2 of us we have lost over 100 lbs this year. Still have a ways ago go.

The trick is to PLAN, to have healthy foods and snacks available on-hand at all times, and to eat/snack on a regular basis so we never find ourselves so hungry that we succumb to something 'easy' like the drive thru or the vending machine.

Me getting regulated on N meds really helped with this, because previously I was so tired that I didn't even have enough energy in the evenings to prepare a meal, so we went out or did takeout quite a bit.

"Mindful" - love the word, love the concept.

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Dang it, I think I eat pretty healthy and I still can't lose weight. I avoid all sorts of unhealthy foods and I eat mostly plain baked meats and lots of fresh vegetables all the time. the only chocolate I indulge in is sugar-free. I only eat ice cream a couple of times a week (again, sugar-free). I never eat out and I cook everything for myself. I go for foods with minimal ingredients or foods that are natural and haven't been processed at all. But its not enough. The scale won't budge. I think I'm cursed.

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I was diagnosed in the end of my senior year of high school and put on provigil. I never experienced a weight loss. I gained some weight it college and at first I attributed it to the college eating habits but whenever I forget to take my meds I have a huge increase in appetite but I do not graze like I do on my meds. I don't know what that is about but Provigil seems to have killed my metabolism. I was always a slim girl and I am a size 8 now which at 5'7 isn't too bad (although I feel like a truck) but I have found that I am more frequently hungry now than I am without the Provigil.

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I've only been on Provigil for a about 6 months and I have lost a few pounds, 5 or 6, I was hoping for more, but I was on Vyvanse prior to that so that might make a difference. I definately am sleeping better at night, which I haven't quite figured out yet, and I am more awake during the day, with only a few yawn attacks during the day. I am hoping that as I go along I will be able to do more and eat better. I have always tried to self medicate with caffeine and sugar to stay awake. Funny how it never actually worked, but I still got hooked. I also have hypothyroidism and overall I am down from 218 to 192, my ideal should be 145 to 155. I don't have cataplexy and my doctor has gone back and forth on my diagnosis. I have the N gene, my sleep latency was 4, but I only had one nap with REM, but I only had one REM cycle all night during the overnight sleep study. I was on SSRI's at the time which suppress REM, but my doctor isn't sure he can officially say I'm N. By the way my brother is N.

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I'm down to 192 from 200 and my ideal weight is the same as yours. I can exercise every day for 3 months and not lose a pound. I'm also hypothyroid and have a lot more energy now that I take the hormone daily. But still stuck at 192. I do have C but the docs still don't listen. I'm diagnosed not N, then N/C every few years. So I don't go anymore. Screw 'em. My brother has Celiac and as far as I know it's 100% genetic. I've been told I'm gluten intolerant but I wonder if it isn't just still Celiac like the rest of my family. But no one will test me so all I can do is speculate and avoid wheat. All in all my basic conclusion is: doctors suck. good riddance. the only one that can help me is me. thank goodness I figured out how. now if only I could lose that weight!

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aw that sounds just like me. I *think* I have IBS but I don't have the energy to go for a colonoscopy right now... and I have cyst problems (though I was told it isn't specifically PCOS) - as a side note how are you finding managing this with the N. drugs? i'm worried about the provigil as the only way I can control the cyst growth right now is hormonal contraceptives.

anyways, I have three sets of clothes... skinny normal and fat LOL. When I went on the provigil a few weeks ago I stopped eating and though I'v estarted eating mroe again I still seem to be loosing weight. which is nice, exept just a month ago I finally broke down and spend a bunch of money on new fat clothes becasue I didn't fit into any of my jeans or shirts. go figure LOL

I have IBS since being 10yrs old and I would be constipated for up to a week at a time. Since being on dexedrine I now suffer from diarrhoea on a daily basis. My stomach is bloated and is uncomfortable. Don't know which is the worse as they both make me feel exhausted.

I have a hormonal implant for my PCOS. Its supposed to be for contraception but it stops my painful periods. Its like a cocktail stick in my arm and lasts for three years. My cysts still come and go but only remain small.

I understand exactly what you mean by your clothes, if I could just loose five inches from my bust then I could fit into my 'slim' size tops.

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I study PCOS as a scientist. I'm so sorry you have to deal with it. As a PWN whose symptoms are triggered by wheat, I just have to ask... have either of you ever explored a possible gluten intolerance in addition to the PCOS? Just curious...I'm so fascinated by how food affects N. I have N with gluten intolerace, my brother has Celiac, and my mother has IBS and Diverticulitis. It's struck me more than once that maybe the three of us all have the same thing...or the cause is the same...genetics. What has your experience been?

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I study PCOS as a scientist. I'm so sorry you have to deal with it. As a PWN whose symptoms are triggered by wheat, I just have to ask... have either of you ever explored a possible gluten intolerance in addition to the PCOS? Just curious...I'm so fascinated by how food affects N. I have N with gluten intolerace, my brother has Celiac, and my mother has IBS and Diverticulitis. It's struck me more than once that maybe the three of us all have the same thing...or the cause is the same...genetics. What has your experience been?

Hi Dogdreams,

I did get tested for food intolerance and I am intolerant to gluten. My GP tested me for celiac and that came back negative. I have been on a gluten free diet for 12 weeks now. My daily diarrhoea is still there, but not as loose (sorry, too much detail).

I have found that I am more shakey and dizzy for not eating as much sugar. My arms feel really weak and I feel the urgent need to lay down or fall down. I thought my diet would cure my bloated stomach and growing bust.

In fact I have gained an inch on my hips and stomach and another two on my bust.

I am taking more peppermint oil for my IBS and trying to relax more, buts it hard when you can't fit in your clothes. It doesn't help living with a skinny teenager who can eat anything and a partner who eats for England. He actually looses weight when he eats more and he has no fat over his tonned muscles. Both have loads of energy and bounce around me sleeping.

I have read quite a lot about insulin resistance and wonder if that is the problem. I drink loads, go to the toilet loads and my fat is around my middle. I know PWN are prone to this and we have problems with our glucose, just a thought.

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I haven't been diagnosed with N. I'm in the process of seeking a diagnosis of something now.

I was diagnosed with PCOS in 2006 after I gained 30lbs in a month. At that point my major concern (besides the weight) was that I was sleeping 18 hours a day and often falling asleep on the job. Actually people with PCOS have a higher rate of sleep apnea and other sleeping disorders. I thought I had sleep apnea when I went into the overnight sleep test. Now I'm really curious about the insulin resistence being a contributing factor in sleepiness.

My insulin level is under control and my glucose and thyroid levels are good.

And chimbakka, I really feel you on the cyst pain. It's awful.

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Hi All. Pardon me if my Reply shows up in the wrong place or ....whatever! I've never even been on a blog before. But...the PWN and weight loss topic is no stranger to me. I was dx with sleep apnea in 2003 - and religiously used my CPAP. I continued increasing my weight as I had for the previous 18 years, while I struggled to exercise and 'eat right', to little short-lived success. I was dx with hypothyroidism in Summer of '05 but continued to feel really really exhausted all the time. My Dr. assured me that my thyroid txmt was working and suspected I had narcolepsy. I was referred to a Sleep Dr. who immediately put me on Xyrem while he confirmed my narcolepsy. I immediately started losing weight (which confirms to me that you have to get restorative sleep for proper metabolism) At the time, I was on narcotic drugs for severe back pain. Sleep doc then put me on Lyrica which allowed me to get off the narcotics I had been on for six years! But, unfortunately, my weight started climbing back up. Until my husband suggested the Lyrica might be doing it. I stopped the Lyrica and the weight started literally melting off of me. I now take no pain meds at all - which suggests to me that pain control also requires restorative sleep for the body. It took me about 3-4 months to lose 47#. I found myself at 115 - the weight I was in my early 30's - for months. Then I started an exercise routine of swimming and deep water resistance exercise. I found I lost more weight. Not good. So I had to give up the cardiovascular exercise until I gained it back. And now, the reason I came on the board to begin with...have any of you found that you are sensitive to MSG? MSG as a food additive is hidden in EVERYTHING, it can even be in organic produce. And because it is not labeled as MSG, we don't even know it is there. Well, I have found myself to be MSG sensitive, and am now faced with trying to find fattening foods that are safe for me to eat. I strongly recommend that anyone having weird health issues (ha, ha, I know!) check out the www.msgmyth.com site. I have not seen narcolepsy referred to as a specific disease connected to MSG, but they do reference sleep disorders, and neurological diseases. MSG is basically a neurotoxin - that excites brain cells so much they....die. Sound familiar? Both my primary care doc and my neurologist at the Mayo clinic agreed I should try to avoid the MSG - in light of my narcolepsy. I'll try to remember to get back here again. Bless you all. I'm planning on the Oct conference for the first time; I don't know any other PWN's, so I'm looking forward to it.

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