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Huge Loss In Appetite! Please Help!

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#1 premednarc

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Posted 16 October 2013 - 09:08 PM

So I was diagnosed with narcolepsy in June and reached my final effective dosage amounts in August. I'm on 3g/dose of xyrem and 400mg provigil. Ever since I started these meds, I've been losing weight. However, when my xyrem was upped at the end of July, I've been seeing an increasing loss of appetite. Since June, I have lost 28 lbs. I'm not exactly happy about it because I wasn't very overweight to begin with and now I'm quickly approaching that fine line between healthy and underweight. I'm mildly nauseated all day; I have to force myself to eat because I'm genuinely not hungry. Even then, I'm not getting nearly enough calories. I'm finding it difficult to get over 1000 calories per day. I've started taking a multi-vitamin to make up the deficits in my diet. Has anyone else experienced this and does anybody know how to get that appetite back? Is it even caused by these meds? I love that the meds are working in my sleep/wake cycles, but I really can't keep going with this weight loss. 



#2 doinmdirndest

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Posted 17 October 2013 - 08:14 AM

when I was in my early 20's-52 now- I worked out at a gym w/freeweights. gaining weight was a goal. i found m. l. o. brand weight gaining milkshake powder. it comes in 1 gallon can chocolate, strawberry and vanilla mixes w/milk in a blender. add raw egg/banana for more effective/nutritious 'calorie bomb' milkshake.

#3 ironhands

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Posted 17 October 2013 - 08:27 AM

That or ensure/boost makes a great supplement, if you are having trouble either keeping food down or have no appetite at all, that could balance it out.  Lack of appetite is a really common side effect with most treatments for N as far as I've seen



#4 oldgator

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Posted 17 October 2013 - 08:29 AM

I wish I had something to offer you but I am also so nauseated all day and can eat almost nothing. I force a few crackers down in the morning and then eat a granola bar over the course of a few hours in the afternoon. In the evening and I try and muster something with protein but my body is not liking the Xyrem. I was on 3g/2x a night and just bumped it down some trying to see if the nauseousness and slight dizziness will go away with a change in dosage. This medication has helped so much but I'm not sure if it's worth it if I feel like garbage all day. I can either be awake and feel horrible or be exhausted and/or sleep throughout the day without it. Horrible choices in my world. Good luck.

 



#5 premednarc

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Posted 17 October 2013 - 08:37 AM

I'm definitely gonna try the shake idea...have any of you taken like indigestion pills or something to ease nausea or does that not work? Or is the nausea due to something else?



#6 Ferret

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Posted 17 October 2013 - 09:50 AM

Make sure that shake is COLD...much more palatable imho.

So, I'm just throwing a question out there. What other meds are you taking besides Xyrem and Provigil? Nobody needs to know but I would like everyone to check "drug interactions" on http://www.drugs.com and make sure you include any supplements that you're taking. You'd be surprised at what interferes...like an antacid or an antibiotic or some other stupid thing that you never dreamed would make a difference.

Are you drinking LOTS of water with Xyrem and also watching your other intake of Sodium (it's in just about EVERYTHING you eat or drink).

I'm taking only 100 mg. of Provigil a day and I've lost 25 pounds in the equivalent of four months. I'm saying "equivalent" because for two weeks, with a new lot number, it did boodiddleysquat except for make me nauseous, give me a headache and NOT work as advertised. On a different lot number, it's back to working normally with no side effects. The really good news is that the weight loss seems to be slowing down and stabilizing...good thing too 'cuz my butt is gettin' kinda bony. 



#7 Chemist

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Posted 17 October 2013 - 10:47 AM

Your loss of appetite is almost certainly from provigil. Tell your doctor and they can prescribe an appetite stimulant. There are many but you have to be careful because a lot of them, like the antidepressants, can be sedating. Obviously you don't want to regain your appetite only to find yourself exhausted again. If you DON'T have cataplexy you can try switching out xyrem for something like Remeron. Otherwise it will probably mean the addition of another drug to your regimen.

#8 NarpocalypseNow

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Posted 17 October 2013 - 11:48 AM

So I was diagnosed with narcolepsy in June and reached my final effective dosage amounts in August. I'm on 3g/dose of xyrem and 400mg provigil. Ever since I started these meds, I've been losing weight. However, when my xyrem was upped at the end of July, I've been seeing an increasing loss of appetite. Since June, I have lost 28 lbs. I'm not exactly happy about it because I wasn't very overweight to begin with and now I'm quickly approaching that fine line between healthy and underweight. I'm mildly nauseated all day; I have to force myself to eat because I'm genuinely not hungry. Even then, I'm not getting nearly enough calories. I'm finding it difficult to get over 1000 calories per day. I've started taking a multi-vitamin to make up the deficits in my diet. Has anyone else experienced this and does anybody know how to get that appetite back? Is it even caused by these meds? I love that the meds are working in my sleep/wake cycles, but I really can't keep going with this weight loss. 

When I started Xyrem, I lost about 25 lbs in 30 days. Like you, I didn't have a ton of weight to lose. I went from 180 to 155. It's now been a couple years, I eat pretty good, and I'm still right around 155. I guess for me, that's the weight my body wanted to be at. I think a big part of my weight loss, is that when I started Xyrem, I CRAVED water. I dropped all soda consumption, which I would drink 4-5 a day, and just drank water. That's a huge load of calories gone from my diet.  

I can't comment on the provigil, as I had alergic reactions to it and never got to take it for long.



#9 ironhands

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Posted 17 October 2013 - 12:12 PM

I'm really really hoping to get this side effect when they finally give me something, I can only eat once a day because I get really tired after I eat, and usually end up sleeping soon after... worst thing to do to keep weight managed..  But on top of that, my appetite is already extremely large.  Last night was only ... a plate of spaghetti and a giant bowl of popcorn, but tonight will be 2 pounds of perogies lol.  Haven't planned out this weekend yet since I'm going back to gluten free, but i'll likely clear out the burgers from my freezer



#10 premednarc

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Posted 17 October 2013 - 06:10 PM

I'm not taking anything else other than these medications and I always talk to the pharmacists at SDS to make sure about supplements before I take them. I have mild cataplexy (just lose muscle tone in my hands and neck before I have an episode) but when I was on provigil only, I had EXTREMELY bad insomnia. So although EDS improved (as in no more daytime napping), I was getting zero sleep. Once I went on Xyrem, I could finally sleep. Today, I took some tums, which helped the nausea and did increase my appetite a little. Like, I'm actually hungry for dinner tonight. Plus I did a heavy smoothie from Smoothie King today; so I think I'll hit above 1000 calories today. And I have been having to force myself to drink more water to compensate for the Xyrem...dehydration isn't good on top of all this other stuff. 

Also, I didn't have the soda issue...but I did inadvertently just stop eating junk food like ice cream and candy, etc. But, regardless, my doc told me to take some tums to ease the nausea. So far, it's working. 



#11 Chemist

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Posted 17 October 2013 - 08:23 PM

If a simple tums tablet works for you and you're doing okay otherwise, stick with that. If you do want to change meds in the future, as I mentioned previously, you can try switching the Xyrem with Remeron. You can also try switching the Provigil with Adderall. The instant release Adderall in particular will not give you insomnia at night when taken in the morning and early afternoon hours. Ritalin is even shorter acting, if it works for you. In any event, there are alternatives to try if the current medications keep causing issues. They might be much more effective, be about the same, or not work at all. You just have to try them out as needed.



#12 Misseddx

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Posted 24 October 2013 - 11:12 AM

First, I am not a licensed med prof or nutritionist. But, Ive had a very surpassed appetite and assoc significant weight loss from Adderall, so right now freq use protein powders to supplement meals as needed. I like to use gluten free "lean muscle protein powder" called Muscle Milk. I bought it initially bec most cost effective (aka cheaper!) *per serving* of protein than Boost/ensure or other protein powders at grocery or walmart & wanting to build musc tone after workouts. I buy at Costco; price $33/bag of 26 serving (2scoops, w high prot , 32g). made by Cryosport; maybe can order online. Check w doc or nurse to make sure ok 4 u, but 2 scoops (in water)= 310 calories, w ea serving= 12 g fat, 32g prot, 19 G carbs (5 g fiber, 4 g sugar ), 160 mg sodium (7% daily -consider w xyrem) etc. I've checked w a fitness trainer- he told its good protein powder to use (but NOT ask doc yet-will ask & share if he has concern). I like prot powders bec light, can carry in container, mix water to supplement anywhere (need good utensil to mix); can get vanilla or chocolate. FYI- My hubby & dad don't like it, but say its as good as other prot powders they've had. To me, vanilla powder not nearly as sweet tasting as Boost is, so u may not like; but ok to me & tastes like other powders I bought. & better than continued weight loss or issues from not eating (poor energy, shaky). (note I do eat "to live " often & food taste not always imp 2 me bec. Need protein- I am reactive hypoglycemic. Hate u to buy a bag & hate it!). Tho, I do love good food. Muscle Milk does say "it should not be your sole sole of nutrition," but I think is better than eating only a couple of crackers if u can't afford more weight loss. I'm unsure if it is *healthier* long term than boost-ensure products tho.

For weight maintain -gain, or options to eat, u could also try the following (tho may be too high in fat/cholesterol): 1) almonds (portable in baggies; cheap in bulk at stores like costco)- great if u r hypoglycemic, drink w water if hard to swallow or no appeal for food.; 2) does cheese appeal to u? Try string cheese blend (I like mozzarella -cheddar-seems to "go down" easier when no appetite from med, & I had good appetite before); 3) bread and spreads- eg hummus; *healthier* butter?? (Is this better than no food at all? consider your cholesterol...); 4) workout trainer says to build muscle, then blend 1-2 tablespoons of natural peanut butter w muscle milk prot drink 2 out of 5 small meals daily; natural pb doesn't have all sugars) Blend 8 oz water or milk, prot powder, ice, 2 tbsp nat peanut butter; (5). for breakfast, Ive always *had* to eat prot to function, so I eat peanut butter w or w-out jelly, on various bread products (to change it up), easy for on the go & goes down ok-little jelly helps (get low sugar if need jelly). keeps me full thru out AM where other things don't. Intern Med dr said this (pb & bread) is very good blend of carbs & protein for AM. With busy w child job, morning fog, & EDS, i make a few pb&j "sandwiches" in advance 4 couple day supply; one less thing 2 to do and something I can carry- eat (force) when can't eat other things. I definitely feel better if I eat small meals all day (snack on these) and easier to get calories in the day this way. I also eat yogurt, fruits/veg, but need the protein to not get shaky. Note, food always appealed to me b4 adderal, unless bad stress situation.

#13 steaks

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Posted 25 October 2013 - 10:40 PM

You need to get enough protein, or you you're going to lose a lot of muscle.  To keep that muscle with a low apetite, some low carb whey protein is great, because a much higher percentage of your weight loss with be fat than it will be muscle.

 

High carb weight loss=skinny as a rail and soft as a muffin

Low carb weight loss=skinny as a rail and hard as a rock.

 

I'm not saying that you need to be muscular, but you probably want to have at least a little muscle, since having at least a little is necessary to be physically attractive to the opposite sex.



#14 Kellie

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Posted 26 October 2013 - 08:32 AM

I am having the same problem with weight loss and Xyrem. I started taking Xyrem in April and at that time I weighed 104 lbs. I have always been skinny with a very high metabolism. I didn't start noticing weight loss until around June when I had reached 3.75g twice nightly. In July I went to 4.0g twice nightly and have stayed there. Between June and August I lost 10 pounds. I was only weighing 94 lbs. I stayed at that weight until end of September when I decided to discountinue the Xyrem because I felt so unhealthy. Over a three week period I have gain back the entire 10 lbs and am back at 104 lbs. My appitete has been great but I have been living in a mental fog. Xyrem has worked so well for me that I was able to give up all stimulants and only kept them around for as needed which is very rare for me while on Xyrem.

 

Last night I decided to go back on Xyrem because I damaged my car twice this week. I live in a condo and while leaving the parking garage on the second floor where my space is you have to make a sharp right down onto the down ramp. The second floor exit looks just like a home garage. It has a gate that lifts up and its about the same width as a home garage. Anyway, once you go through the garage door you have to make a sharp right to go down the ramp. On Wednesday in my mental fog I scrapped the side of my car on the side of the garage making that sharp turn. The worst part is I did it again on Friday! I have a Buick Enclave so it is a long vehicle and I scratched my car above my back tire. Thats at least a $2000.00 mistake. I just haven't been in my right mind and have been sleep deprived without Xyrem.

 

So I ask myself what is worst? Being 94 lbs and 5'5 with a BMI of 16 (according to my pcm) or being a walking zombie. I have an appt with my neurologist on Monday.



#15 drago

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Posted 03 November 2013 - 09:47 PM

I'm mildly nauseated all day; I have to force myself to eat because I'm genuinely not hungry. Even then, I'm not getting nearly enough calories. I'm finding it difficult to get over 1000 calories per day. I've started taking a multi-vitamin to make up the deficits in my diet. Has anyone else experienced this and does anybody know how to get that appetite back? Is it even caused by these meds? I love that the meds are working in my sleep/wake cycles, but I really can't keep going with this weight loss. 

 

When I was first diagnosed, I was on provigil for a few months then switched to adderall. This is EXACTLY what happened to me - I was nauseated during the mornings, and my lack of appitite made this worse. I would forget to eat (my job kept me busy) and in general, eating wasn't something I made time for. I subsisted on hotpockets and coffee and even beer.

The only thing that worked for me was eliminating the nausea -- which, oddly, was caused my not eating enough! I hid "emergency crackers" and granola bars -- anything I could eat with nausea -- in my room and around where I worked, so I would always have something to eat. "Emergency crackers" were whole wheat crackers that settled my stomach (not much salt) whenever I felt a bit nauseated. I had to hide them around my work and such so I would have something to eat...

 

I haven't gotten my appetite back. Especially not in the morning. However, the nausea has gone away. I manage it by timing food. If I'm not hungry, I force myself to eat something -- banana, yogurt, ANYTHING -- so that I'm actually eating and not forgetting. That keeps the nausea away. The apetite never resurfaced for me...

 

drago







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