Tuesday, September 4

Xyrem Is for Cataplexy... Unless You're My Husband

For me, cataplexy is one of the scarier aspects of my husband's illness. Although not every narcoleptic suffers from cataplexy, it is a fairly common symptom of the disease. I've been living with narcolepsy for several years now, but I still remember the first time I ever saw cataplexy in action like it was yesterday. My husband's cataplexy is much better since his illness was diagnosed, but it is still a problem. It also still scares me. You've never seen two people stop laughing faster than the two of us when we're amused, lemme tell ya. That reminds me...

...many years ago, my husband and I went to a comedy show while on a trip. It was really fun and the comedians were pretty funny. One in particular was hysterical; I laughed until my stomach ached. During the evening however, I noticed my husband didn't laugh much. At times he gave a short bark of laughter and then put his head on the table. I assumed that he just wasn't that amused. After the show, when asked, he insisted that he had actually had a great time. He certainly sounded sincere, but I just didn't understand why he didn't laugh much. Now of course, I shake my head, imagining what torture that must have been for him! Prolonged laughter makes my husband collapse, where he remains frozen for several minutes. So suppressing his laughter for a couple of joke-filled hours would have been the only way to prevent a cataplectic attack - which I'm sure would have led to a huge scene and major embarrassment.

In my mind, my husband's cataplexy is pretty bad. But apparently, not bad enough. On a recent visit with his sleep specialist, my husband again asked about the drug Xyrem. Xyrem is used to treat cataplexy, and since my husband still has attacks, we thought we should look into it. To our surprise, his doctor seemed extremely reluctant to prescribe it. He mentioned that it was a "pain" to take, and really only prescribed to patients with severe cases of cataplexy. My husband and I were both taken aback. Sure, we know that there are those whose cataplexy is much, much worse, but we were shocked to hear that my husband's cataplexy is actually considered "mild." After further discussion, he recommended a different drug, which my husband is now taking and with much success so far (more on that drug later). We were intrigued with the information about Xyrem, though. That visit prompted me to do a little research:

Xyrem - "XYREM is a medication approved for the treatment of excessive (too much) daytime sleepiness and the treatment of cataplexy (weak or paralyzed muscles), both in patients with narcolepsy." That description is from the website. From those I've spoken to who currently take Xyrem, they admit that taking it before bed and then waking up to take a second dose can be troublesome. I also didn't know that it was a liquid drug.

I'm also now researching more extreme cases of cataplexy. I know of a few, but they are still very similar to my husband's. If you know of anyone whose cataplexy is a constant interruption, email me or post a comment here.

So for now, Xyrem isn't an option. After the research we've done however, maybe that isn't a bad thing.


  1. My narcoleptic's cat hasn't been quite as bad the last few months as previously. But it is still a big problem. More than the falling on the floor, or inability to speak for a few minutes, or the odd facial contortions, is the fact that after a few attacks he experiences nausea, headache, and all round malaise for several hours, which can really mess with a day's productivity. Worse, with small children, the adorable and humorous things they do trigger the attacks, ruining the precious time he gets to spend with them.

    He explained to me the connection to Xyrem and the drug GHB. I have to admit, I am facinated by the way the brain works and how something so scary can actually be helpful to narcoleptics. The price, however, makes it completely out of question right now.

    I am anxiously waiting to hear about the drug the dr ended up going with.

  2. I have pretty mild cataplexy, so mild that I was starting to think maybe I didn't have cataplexy at all. Because nobody wanted to give me a Narcolepsy diagnosis. Sleep/Neuro said based on his review of my MSLT I had Narcolepsy, but next time I saw him he found an excuse to say that I don't have Narcolepsy... he had done a spinal tap...where median level is like 400pg/ml and under 200pg/ml is low, I was 230pg/ml. (according to some paper from Finland with input from Stanford.)

    Later because another doctor had suggested I might be depressed, despite my saying that I wasn't. He gave me a Beck's...and because I have disappointments in the things I can't do anymore due to the progression of my N and that I worry a lot about my health....I must be majorly depressed, so I was put on an SSRI. Nothing changed much.

    But, then I had a cataplexy episode that was bad enough that if I didn't drop, I was very likely to be brought down in a more painful way. I've had what seem like unexplained trips while walking.... it resulted in being taken to an ER by ambulance. And, later in follow up with PCP, I was informed that it was Cataplexy...which seems to fit the progression of my other symptoms. He did a google search on the subject, and found Xyrem.

    But, when I followed up him later....my file said I have "Idiopathic Hypersomnia/Cataplexy" I had undergone yet another sleep deprived EEG, again reviewed by my sleep/neuro....finding no evidence of seizures, but showing indications of sleep disorders such as Narcolepsy. But, he wouldn't make any ruling. Sticking with "Idiopathic Hypersomnia/Depression". PCP told me that he wasn't comfortable in prescribing me Esctacy, but had found another website saying that SSRIs have been used to control it. So, he prescribed me one. Asked if it would interact with anything I was currently taking...twice. He'd prescribed Lortab once, which caused me to not breath much one night.....claimed that as long as I was on CPAP, I should've been ok. Umm, that constant air pressure makes respiratory depression even worse. Eventually, he said I should probably stop taking the antidepressant that my sleep/neuro had me on.

    Well, the SSRI made everything worse...cancelling out my Nuvigil and my Lunesta...so back to sleepy all the time during the day, and unable to sleep at night. (insomnia that my sleep/pulmo claims I didn't have because the CPAP compliance report shows that I keep my mask on all night.) The same reports that show I average 9 hours a night, my AHI is < 0.1 (34.1 in the original PSG)...no leaks, etc. But, that my lack of compliance (+ depression) is more likely the reason for my Idiopathic Hypersomnia...according to my sleep/neuro.

    Since the new SSRI was making me worse, the PCP said increase it. This lead the the first time I nearly fell out of my shower, and a bunch of times where I had mysterious trips....or a walk where I recall feeling pain on the side of my head, but had made it home to take a nap....and discover that I had somehow mangled my glasses. And, then a few days later I tripped and broke my watch.

    So the answer from PCP was increase the SSRI more.

    I end up seeing the only doctor (psychiatrist) in town that treats Narcolepsy patients. He says he had reviewed my MSLT and it supports a diagnosis of Narcolepsy. And, he sayd that Narcolepsy is clinically diagnosed. Not through the use of an experiment done at a few Universities...and no where near an accepted test.

    Anyways...he tells me what my other doctors seem to stand, but then says if it looks like a duck, and quacks like a duck, then I have Narcolepsy. And, handed me the Xyrem information packet and starts going over the process of getting me started.

    3 weeks later I got my first shipment. And, I'm now about 6 weeks into my new life.

    1. it is now Jan. 2015..what I hope you can answer is "how is your 'new life' now" are you still taking the Xyrem? .I am looking at taking it.
      what side affects have you had?
      do you recommend it?

  3. Oh yeah.... I remember there was a time like 16 years ago where a friend had a new born, where she gave him to me to hold. That was freaky....I could feel my arms getting weak and I couldn't talk either. I now stay away from such situations.

    A couple years ago, was the first time I let loose and laughed in like 30 years....I had to hold my head up, some other people with me went down like the picture above. But, I've decided that going to conference is my new addiction...that way I get to laugh once a year.

  4. I have extremely severe cataplexy, and have since I started having symptoms at 15. In fact, C was my first symptom. I use a wheelchair most of the time for safety because 95% of my episodes are full body, and I have episodes where I've needed assistance breathing. Luckily those episodes don't happen too frequently, but they're pretty scary when they do. I've been intubated 6 times, all because of "respiratory arrest," when I was having severe episodes. I have about 2-3 full body episodes a week, which typically last 20 min, and multiple minor episodes daily (arm weakness, legs buckle, chin/neck weakness, etc.)

    I would love to talk more about my symptoms with you if you have any questions =)

    1. How old are you? You seem pretty young still. My symptoms (first symptoms were cataplexy) started when I was about 13 and the sleeping and cataplexy were very severe all throughout high school (full body collapses so much as a giggle) many times people thought I should be in a wheelchair or have a seizure helmet but I insisted that I wouldn't like that - so I just made sure I always kept friends near who knew my situation and always had designated "catchers" .. they didn't seem to mind too much. But my cataplexy specifically improved greatly when I was around 17 or 18 .. they think it was something to do with hormonal changes and I'm down to mild (still have it but barely noticeable) I also changed my diet and moved out of stressful living situations and that helped with the change too, I believe. Best of luck to you, you seem very creative and optimistic!

  5. Xyrem was approved July 2002 for Narcolepsy with Cataplexy patients. And, then got additional approval Nov 2005 for Narcolepsy without Cataplexy patients.

  6. Hello! First, thank you for linking my blog in your sidebar! I really need to get others' blogs linked on mine. A big to-do for this weekend perhaps!

    Secondly, I was prescribed Xyrem even though my cataplexy is mild to moderate. I say mild to moderate because most of my attacks are mild, but I have many attacks per day. I do have "falling down" attacks, but not as many. Therefore, I suppose that averages out to moderate. :) Anyway, that doctor is silly for thinking only severe cataplexy patients should be prescribed Xyrem. My doctor prescribed it to me simply because I have fragmented nighttime sleep. I cannot remember a time in my life when I was able to sleep even 2.5 hours without waking a couple dozen times. That makes waking up for the second dose a very minor detail! I'd wake up twice a night if I had to and still be ahead!

  7. Xyrem should be taken carefully. The FDA released an alert on how dangerous it can be. It can cause impaired consciousness and depressed breathing. The entire FDA alert on this site (http://www.rxwiki.com/fda-alerts/xyrem-taken-alcohol-or-cns-depressants-impairs-consciousness-and-leads-breathing-problems) and then you should discuss it with your doctor.