40 replies to this topic

[lkcty873]

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.

[dogdreams]

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!

[too exhausted]

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.

[chimbakka]

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.

thanks. I'm going to see my dr at the end of the month and the sleep dr early Dec to discuss the cyst problem. I can feel the pain starting to come back and that does not make me happy... last summer I was in emerg 4-5 times crying my eyes out in agony on the days that percocet wasn't enough. Percocet did help the pain most of the time, but lets face it we dont need a narocleptic girl on 2 percs every four hours free in this world LOL. I wonder if the hormones causing our "female problems" are what causes such a weight gain in the breasts. I always gain there first and it drives me mad too... nothing fits right. I also gain right in my lower abdomen (last summer when i had the cyst attack I had gained so much in those two spots i looked pregnant, but I don'tknow if its hormones or my bowels?) anwways im getting sidetracked thanks again for letting me know about the implant. if anything productive comes from either of my appointments i'll post about it

[dogdreams]

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?

[too exhausted]

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.

[chimbakka]

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?

I haven't really looked into diet yet. I was just recently diagnosed so I'm focusing on working out the bugs in regards to the meds etc. BUT once I get myself on track a bit I will look into that more. I do know that my stomach reacts to foods sometimes in a bad way, but so far it seems to be random (some foods will bug me one day but not the next), more like my stomach just has bad weeks and good weeks. Once I figure more of that out though I will definately write about it

[eww]

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.

[Enid]

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.

[eww]

I was diagnosed with PCOS in 2006. I gained 40lbs in a month, blew up like a balloon and started sleeping 18-20 hours a day. I also have two sets of clothes, the size 14's and the 6/7/8's I wear now. I was also told specifically that it wasn't PCOS by a dr. A few months after him I was told it definitely was by someone else. So just because you're told it's not PCOS don't be so sure. My hormones were never that far off of "normal" and I didn't have cysts then. I do now. However I'm no longer 200lbs. After starting metformin I'm now down at 145lbs. Though the last 5-10lbs came after starting the Modafinil.

This has made me very curious how all of these things are related. Hypothyroid, adrenal fatigue, PCOS and Narcolepsy all have some similar symptoms. The weight gain, sleepiness etc. The one problem with having a PCOS diagnosis is that drs stop taking "sleepiness" seriously. A lot of "sleepiness is higher than average among PCOS patients" gets thrown around. Personally, I think that means they should figure out WHY.

[chimbakka]

I was diagnosed with PCOS in 2006. I gained 40lbs in a month, blew up like a balloon and started sleeping 18-20 hours a day. I also have two sets of clothes, the size 14's and the 6/7/8's I wear now. I was also told specifically that it wasn't PCOS by a dr. A few months after him I was told it definitely was by someone else. So just because you're told it's not PCOS don't be so sure. My hormones were never that far off of "normal" and I didn't have cysts then. I do now. However I'm no longer 200lbs. After starting metformin I'm now down at 145lbs. Though the last 5-10lbs came after starting the Modafinil.

This has made me very curious how all of these things are related. Hypothyroid, adrenal fatigue, PCOS and Narcolepsy all have some similar symptoms. The weight gain, sleepiness etc. The one problem with having a PCOS diagnosis is that drs stop taking "sleepiness" seriously. A lot of "sleepiness is higher than average among PCOS patients" gets thrown around. Personally, I think that means they should figure out WHY.

im definately glad im going to another obygyn. im not taking ANY birthcontrol until then either i dont' care how much the pain comes back.
just out of curiosity, do you crave sugar/chocolate like crazy? i mean like more than a smoker craves ciggarettes?
i'll be so glad if i get this figured out and get this and the N on track

[chimbakka]

ps, eww, what dr do you see for your pcos>

[aimeemerr]

My weight experience has gone something like this - My junior year in high school (I'm now 24) I had a anaphalaxis reaction to a antibiotic, from that point forward everything went downhill I started feeling tired all the time and put on 80 lbs in one year!!!! I was finally diagnosed with narcolepsy in 2005 after several doctors telling me I needed to lose weight and nothing was wrong with me.... In the meantime I tried many many diets and the 80 lbs never budged... I've been on Xyrem now for about 2 years and have lost about 60 lbs. I would really like to read this doctors paper- I wish I would have been to her presentation.

[resec003]

When I was a Provigil I lost about 15 pounds rather quickly but then it leveled off. I had to switch to Adderall and started losing three pounds per week; I now am on Adderall XR and am losing SIX pounds per week. The weight loss won't seem to stop with this medication, it is to the point that my doctor told me to start drinking supplemental products (the one I currently have is 560 calories/serving) to TRY to maintain my current weight. This has become a huge problem for me and my doctor seems worried about it as well.

It just seems like such a stupid problem to have because before my diagnosis I couldn't lose weight for the life of me! Has anyone else had such rapid weight loss? Suggestions as to what to do about this would be appreciated!

[desertpond57]

When I was a Provigil I lost about 15 pounds rather quickly but then it leveled off. I had to switch to Adderall and started losing three pounds per week; I now am on Adderall XR and am losing SIX pounds per week. The weight loss won't seem to stop with this medication, it is to the point that my doctor told me to start drinking supplemental products (the one I currently have is 560 calories/serving) to TRY to maintain my current weight. This has become a huge problem for me and my doctor seems worried about it as well.

It just seems like such a stupid problem to have because before my diagnosis I couldn't lose weight for the life of me! Has anyone else had such rapid weight loss? Suggestions as to what to do about this would be appreciated!

Before I was ever on medication I had to wait sometimes as long as 2 years for my system to complete this weird cycle it seems to be on before the weight would start dropping off. For example, delivering my second daughter 2 months early threw off my hormones or something because I continued to gain weight as if I were still pregnant. Two years later I got pregnant and instead of gaining weight, I was losing it. I lost 30 lbs. by the time I gave birth and didn't stop til I reached 105 lbs. a few weeks later. Then years later a bout with pneumonia kicks my ass and it starts all over again. First comes N/C, always worse than the time before, and weight gain right along with it. Something jump starts my system and all is good til the next time. Now 20 years later this time is by far the worst and instead of a 20-30lbs. its closer to 45lbs.
About 4 months ago I was on Adderall xr 30 mg. and thought I was actually starting to lose it very slowly. Last month I had to switch to the generic Adderall 30 mg. twice a day and I gotta tell you its just not working where the weight is concerned. It doesn't matter if I eat or not, I'm at a standstill, so if anyone has any ideas please share. I'm almost sure I read somewhere that people taking xyrem were losing weight due to getting the sleep they need. I'm awake 20 out of 24 hours by taking the Adderall twice a day. When I don't have any I just fall in and out of sleep all day and up and down all night. It would be easier to handle N/C if I could lose this weight. Falling down w/o warning is one thing, trying to get back up with all this extra baggage is another.
I hope you find balance that those of us struggling with weight so desparately need.

[lashgirl]

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.

On Xyrem and down 20lbs and counting. The part of the brain that effects sleep also effects appetite. More "real" sleep, less appetite higher metabolism, more energy.

[sleepless sleeper]

this is a link to a study that saraiah posted, and it has some amazing info that some of you may find interesting. be sure to look at the tables provided, too.

http://www.ncbi.nlm....55/?tool=pubmed

[lyndawn2]

I lost weight on a weekly basis from the moment I started the stimulants. I lost more with the xyrem. I actually find it hard to eat enough to maintain my weight now. I've lost about 45 lbs.

The weight came on little by little over the years. I tried diet and exercise, and after feeling starved, sore and exhausted for 3 1/2 months, I lost 2 lbs.

I've told people that I think our bodies go into a sort of hybernation state when we go undiagnosed for so long. Our body stores the fat and we sleep, just like bears. Except, we don't have a season where we wake up. The food never seems to provide energy.

I still get really tired when I eat.

Lynette

[echothat]

When I was first put on 150 Nuvigil, I lost about 5 pounds in the first two weeks. I just wasn't hungry and needed to remind myself to eat. Now, on 250 Nuvigil, I have gained 18 pounds in 8 weeks. Not sure what happened. I have not changed anything. I'm doing a good bit of exercising every few days. Heart rate goes up; I sweat; tired when I'm done with the workouts.

My wife told me that I just eat too flipping much. I tend to agree.

[Lis]

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! <img src="http://narcolepsynet...IR#>/smile.gif" style="vertical-align:middle" emoid="" border="0" alt="smile.gif" />

As long as you don't give in the that powerful urge for the night time munchies after taking xyrem, your weight should be fine, lol. it's why I eat a light snack just prior to taking xyrem. It does help a lot. Wish u luck.