kimberlyaz

Dr. Ristanovic's Findings On Weight & Narcolepsy

35 posts in this topic

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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://narcolepsynetwork.org/forums/public/style_emoticons/<#EMO_DIR#>/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. :)

Share this post


Link to post
Share on other sites

Interestingly enough.. I find that I always lose weight when I'm not on medication. Part of the reason for trying to find a diagnosis when they did was because I had crashed and totaled 3 cars, I was sleeping all the time and at weird hours, and I had lost upwards of 50lbs in a matter of a few months without even trying.

Recently my narcolepsy has been bad and I went to the doctor seeking some sort of relief and what do you know I stepped on the scale and had lost 25lbs just since I had been there in November. I would imagine this is because I sleep through mealtimes and then when I wake up, I am not very interested in eating. I've never been on medication long enough to notice a difference in my weight then. It should be interesting to see.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now