Xyrem - mood - annoyed with everything?

[veekay]

I apologize for the post if it is a little out of sorts and jumps around, but I've been a lurker here for a few months and just decided it might be time to see about the experiences or opinions of others who might have some advise.

Short background is I've been diagnosed with idiopathic hypersomnia for maybe 7 years and a few months ago finally got the "official" narcolepsy diagnosis, which let me try Xyrem. I was previously on Nuvigil and ritalin, but that wasn't enough to keep me awake when driving and after one too many scares of cataplexy like falling asleep I ended up back at the sleep doctor and doing another sleep test and then daytime test. I was on Xyrem for a little over 3 months with varying success.

I started on the typical 2.25 x 2 dose and it worked great - for what it is made to do. I was able to stop taking both the nuvigil and ritalin and eventually settle on a 3.0 x 2 dose. I've had a lot of side effect issues with the Xyrem such as acne (which isn't fun after recently having done two series of accutane to help with the acne issue), increased joint pain (already have issues with that), headaches and the biggest problem has been my mood. After starting the Xyrem my mood changed quite a bit - everything just annoyed me and pissed me off. The dog panting in the morning just infuriated me and most everything else just got on my nerves. After moving to the higher dose things seemed to have gotten better, but they haven't improved since. It was putting a lot of stress on my marriage and I hated being nasty to my wife anytime she tried to talk to me so on my next follow up I asked if there was anything else to try or the Xyrem would have to go. We decided to try an antidepressant to see if that would help stabilize my mood so I could stay on the medicine, but things didn't go as planned.

I started off on a very low dose of Paxil (20mg) and the first few days things seemed much better and then things flipped. My anxiety just shot through the roof, I have been unable to fully empty my bladder and I became very depressed. I couldn't function at work and at home I was so tired I would just go back to sleep after getting home. Since starting xyrem I hadn't taken a single nap or fallen asleep, so it was a big change in feelings after those 3 months. I called the dr and was switched over to Zoloft since I had been on that recently as treatment for my wrist pain, but things still got worse. Eventually it got to the point where I couldn't get out of bed - I spent 4 days of staying in bed almost all day before finally having my family take me into the dr and deciding to stop all meds (still not completely anxiety free after 4 days off everything). So a medicine that had no side effects aside from making me tired now turning my anxiety a full 180% and pretty much disabled me - the only difference was being on Xyrem the second time and the Zoloft dose actually being 1/3rd the strength.

I guess now the main point of my question, has anyone else experienced a mood change like this from Xyrem or having it react this way with SSRI class antidepressants? Being off the Xyrem makes me remember how horrible sleeping was before taking it - I hate sleeping now and just don't know how to proceed once it is time to start trying the Xyrem again and trying to figure out how to combat the mood change. I was happy to have been able to stop taking two other medicines and now the idea of having to start taking an antidepressant because of the Xyrem stinks, but it is better than worrying about making it to and from work alive each day.

[Willow2007]

I won't be much help, I am afraid. I was on zoloft for many years, and the first three or four weeks, I was grouchy. but after that, it went away. I know some people get depressed on Xyrem, but it sounds like more of an anxiety problem. My daughter has generalized anxiety disorder and she tried all kinds of meds, and the only one that helped her was lexapro. I also take lexapro, but because I tend to ruminate and worry about things, (a little bit of OCD I think). And lexapro takes that away, its not really for depression.

Good luck, hope you figure it out so you don't have to go completely off xyrem. Its certainly my drug of choice!

[hoodjm]

I had to deal with mood change and anxiety issues during my adjustment to xyrem. I take extra B vitamins when I feel anxiety increasing. I also have to exercise regularly and use yoga and breathing exercises to keep it in check. When I first started xyrem I titrated up very quickly and that is when the anxiety was the worst, more close to panic attacks. I had to take a few nights off and start off low again and move up slower to find the right dose.

[Irishvamp7587]

I have got to get to bed but just had to respond to your post really quick. I am on Xyrem and have experienced exactly what you are talking about with the anger/agitation/anxiety. I'll come back hopefully tomorrow to explain better. Seems it's a very rare side effect so I just wanted to let you know you weren't alone.

[veekay]

It is great to hear at least one other person has/had this issue. I have still been off the Xyrem for over a week and enjoying my "personality" back, but know that soon I'll have to start back on because the lack of good sleep is getting to me.

hoodjm, did the mood changes subside or did they actually continue?

[Irishvamp7587]

It was so weird to read you describe the feeling you get when your dogs just look at you and pant. My dad that I live with has two dogs and I used to adore them but now if they just look at me and wag their tales I want to kill them, not literally but I just scream at them to leave me alone and I don't care what they want. What a horrible personality change! I have a young daughter too and really worry about how my anger is going to affect her. This along with my other side effects, people think I'm crazy for continuing with Xyrem but they just have no idea what it's like. I've went off Xyrem twice because of the side effects but it's absolutely no way to live either. Like you, I was able to not even have to take my adderall anymore when I got to the right dose of Xyrem. It felt amazing to just be awake!

I'm convinced that for some people, Xyrem alters a hormone or something in their body and raises it too high, creating these side effects. The most logical one for me would be my thyroid because from Xyrem I also have hair loss, muscle weakness, shaking (not relieved by any magnesium), increased heart rate (tachycardia up to 165!), blurry vision, my "time of the month" is changing, depression, anxiety, flattened personality, increased anger, acne, weight loss, and I'm sure others that I'm forgetting. But my thyroid tests keep coming back fine.

I know Xyrem makes us produce more human growth hormone and prolactin but not enough prolactin to outweigh the HGH which is done by Xyrem getting the hypothalamus to stimulate the pituitary gland to produce these hormones and it's the pituitary gland that is responsible for the production of so many other hormones. So you have to wonder what other hormones are being altered. I've had so many tests done and all come back fine. Had my thyroid checked, zinc, testosterone, prolactin, creatine kinase, dhea sulfate, creatinine, ferritin, vitamin b 12, and tons more. Another thing that supports my belief is that for a lot of people with these side effects, when they stop Xyrem, the side effects don't immediately stop. We all know Xyrem is completely out of your system within a few hours so how is it possible that is takes two or more weeks to get the side effects to completely go away?! Because it's not actually Xyrem doing it, Xyrem has raised one of our hormones and it just takes time for it to regulate itself back to normal. I'm so frustrated with it all, I wish I could find a Dr that would take the time to figure this out but they all just want to assume that this is just what Xyrem does to you and not that it's affecting a hormone that we might easily be able to fix and still take Xyrem without these side effects. My sleep dr doesn't even want to believe it's the Xyrem at all cause he's never heard of these side effects but after reading through the ENTIRE narcolepsy board, I did come across one person with my exact side effects and a few others that just had some.

I've also tried adding in antidepressants to counteract the side effects but so far to no avail. On one, Zoloft, my anxiety did go through the roof so much so that I had to stop it. It is normal for your anxiety to increase at first but if you can tough it out it should get better, I couldn't. Like hoodjm, I'd also recommend a B complex vitamin. The ones from the drug store didn't work for me, you have to find a quality brand. It did help with my depression and anxiety but not enough to make me "ok" but they are definitely helpful. Others also used to recommend taking extra B3 in the form of niacinamide with vitamin C, I tried just the niacinamide an it didn't make a difference for me. Could have been the brand or that I didn't use vitamin C with it.

Sorry if that was a lot, I'm just so passionate about figuring this out but seems like I've come to a dead end and don't know where to look now. Keep us updated with anything you find out or any solutions you come up with.

[hoodjm]

I like the phrase "flattened personality". For the most part I think I got back to normal, but maybe slightly flattened . . . Of course it could just be the rigid schedule of trying to time when I eat and go to bed makes me seem like a stick in the mud=)

[yawningdog]

I had 'crazy angry lady' setup household in my head about a year after starting Xyrem. It wasn't the xyrem, it was me going hyperthyroid. I was taking synthyroid and my standard dose became an overdose with weight loss and with the effects of xyrem induced sleep. The doctors lowered my dose and I would start to feel normal after about 3 weeks and then I would start in with all the symptoms again. Rapid heart beat, weight loss, angry all the time. It seemed that when my thyroid was really high, it interferred with my xyrem, when they lowered the dose, I would feel better as my thyroid levels dropped until they hit a level where the xyrem started to work again. (when not working, I would sleep only 1.5 to 2 hours and then dream the rest of the 4 hours) It took 3 sessions of lowering my dose to get me back to normal.

Anyone on thyroid replacement drugs and on Xyrem should have their levels checked. I firmly believe that xyrem lessens the amount of thyroid you need to take.

[veekay]

It is good to know at least one other person has had similar issues - what Irishvamp7587 described hit the nail on the head for a lot of my issues.

I have started on B3, potassium and magnesium supplements and hope they might help some. Still haven't started back on Xyrem and oddly enough my staying awake hasn't been an issue for the past few weeks. I'm not sure if that is from having good sleep for 3 months or something just changed, but things certainly haven't been like this for years.

[kateHA]

My anxiety has been through the roof as late and I had just assumed it was because of the daytime stimulants (I take concerts 36mg in the morning and Ritalin 10mg 2x/day) since I have a history of anxiety - it honestly hadn't even occurred to me that it could be the Xyrem! I recently upped my dose from 4.0x2 to 4.5x2 so now I wonder if it's related. Just saw my psychiatrist a week ago and she adjusted my "crazy meds" (citalopram and buspirone) to see if that will help. But seriously, our dog is just making me nuts and have NO patience for her, even when she just wants to play. I feel so relieved to think this could be it! (though sorry for all of us that we are experiencing it, yuck.)

Also I've noticed I've been breaking out much worse than usual the last couple weeks. Now I wonder if that's from upping my Xyrem, too...

It's frustrating to me, since Xyrem has definitely made such an impact in terms of my day-to-day functionality...it definitely is a trade off, I guess - anxiety/acne/"flat personality" (I had never heard that term before this thread but it TOTALLY resonated with me) is still preferable to being a walking zombie, sleeping during classes, unable to have much of a social life.

My one (sarcastic) complaint is that I feel like I am the only person who hasn't had weight loss from Xyrem - I had gained about 20 unneeded pounds from not exercising before my eventual diagnosis, and I really wouldn't mind them magically disappearing...

[firefly3]

[kateHA]

I am ready to KILL my dog.

It's not the dog, it's the meds.
It's not the dog, it's the meds.
It's not the dog, it's the meds.
It's not the dog, it's the meds.

Thanks, I knew you guys would understand...

[yawningdog]

I run a dog kennel mostly because I love not only my dogs but I love other people's dogs as well.

When I realized that I now HATED DOGS, something was really wrong. The crazy angry lady that had taken up residence in my head had to move out. It wasn't the Xyrem directly causing this. I take synthyroid for low thyroid. A combination of the restorative powers of deep sleep plus the weight loss turned my normal dose into an over dose. I was so hyperthyroid that I had no body fat, my hair was falling out and I was constantly and completely irrationally angry. And to top it all off, my xyrem stopped working well, I was dreaming more and getting less deep sleep, so I was tired again.

I recommend anyone who starts xyrem will on thyroid replacement gets their levels checked.

It also took my months to correct the problem. The doc would lower my synthyroid dose and in about 3 weeks I would start to feel normal. At the same time, xyrem would start working better. The high thyroid was interfering with it. Within another 3 weeks of sleep good the hyperthyroid symptoms would return and I would have to beg for yet another lower dose. It took 3 lowerings to get it right.

[Andromeda1528]

I think it could be the Xyrem, as I personally know from experience that xyrem can cause depression. I would think that getting upset at little things would fall into a similiar catagory as depression of mood changes and mental state. I would talk to your doc.

Me, I finally realized that xyrem was causing me to have severe depression and anxiety - i finally got it down to once i start the drug, 4 or 5 days and i'm fine and then suddenly it's like there is a giant cloud over my head and i'm checking every lock 4 times when i lock things.

Ellie
nisfornarcolepsy.com

[Geekwench]

I have to second yawningdog's advice- have your hormones checked. I've recently been doing a lot of reading (reputable, detailed, research-cited material) about hormones and how delicate the balance in our bodies actually is. For those who are women, it's even more delicate than in men. Taking Xyrem causes hormonal changes because we're finally getting deep sleep and starting to make HGH, and that just creates a ripple effect with everything else in our bodies. That's why yawningdog keeps talking about the thyroid experiences- they're classic effects of hormonal fluctuations. While we're usually prescribed Xyrem by sleep docs of one kind or another, I think that anybody having side effects while taking Xyrem should see an endocrinologist ASAP- unless a doctor really knows what's going on in your body, that doctor is treating symptoms rather than causes. If you can treat the cause, the symptom will go away.