Cataplexy / Once a trigger always a trigger?

Index Support Center Forums Living with N Cataplexy / Once a trigger always a trigger?

This topic contains 34 replies, has 7 voices, and was last updated by Sleepy RBD 3 months, 2 weeks ago. This post has been viewed 846 times

Viewing 15 posts - 16 through 30 (of 35 total)
  • Author
    Posts
  • #8800
    Avatar
    Sleepy RBD
    Participant
    @sleepy-rbd

    @dg
    Thank you for sharing your experience. I am glad to hear that you have found that Xyrem is helpful in treating your symptoms. I think the value in these forums continues to be the ability to hear from others concerning their experiences with symptoms, treatments, and lifestyle choices. It seems that all of this can vary so greatly for each individual.
    Through a cooperative effort we can continue to contribute to a greater understanding of this disease as each of us works towards finding a “balance” of what might help in some way. Please keep us posted on how things are going for you.

    #8870
    Avatar
    MewMewZelda22
    Participant
    @mewmewzelda22

    So,um, I was reading through this and there are a plethora of different triggers, and I was wondering if it’s normal for one to make a cataplectic episode last longer than if you were to have been triggered by something else. I adore cute things and when I get the rush of happiness I get weak in the knees and I can’t talk correctly, just the usual disturbance. Just recently I found that whenever my sister (I still live at home) does something funny and/or obnoxious, or when I’m talking to friends about funny things, I fall into and episode that lasts longer than my normal ones. I guess what I’m asking is if certain triggers make you cataplexy differently? I don’t know if that makes sense but yeah. I do take Nortriptyline to help with my cataplexy as well.

    #8872
    Ferret
    Ferret
    Moderator
    @ferret

    @MewZelda22
    YES! Go to the top of this page and, on the black bar, you will see a drop down link called “Resources”. In it is the “Cataplexy Cheat Sheet” which details ALL of the levels of cataplexy that one can experience depending on the trigger.
    Having had cataplexy since 1985, I have experienced them all. It is what it is and Sk8aplexy, who wrote the cheat sheet, did a wonderful job.
    Now, having said that, I want you to go to a section of the forum called “Non Rx Strategies” and ready my “Cannabis Oil Cheat Sheet” thread. It will depend on where you live and availability BUT, after having had daily (sometimes multiple) cataplexies from ’86 to 2014, I STOPPED it by taking a half a grain of cannabis oil just before bed every night. IF I stop taking the cannabis oil, the cataplexy comes back.
    Always a choice in treatment, if you are looking for other options.

    #8874
    Avatar
    Sleepy RBD
    Participant
    @sleepy-rbd

    @mewmewzelda22
    For me, the answer is a definite yes. For example, it may range from something minor like a head drop or a feeling of weakness in my hands which may cause me to drop something up to an instantaneous full body melt. It depends on the triggers and circumstances. In other words, cataplexy can be very subtle or a beast.
    I remember reading something that said some people may experience cataplexy only a few times in their lifetime. (If I come across the source for that, I’ll add it later.) It seems like there can be quite a range among PWN1 and also within individuals. For example, I can experience varying degrees of severity within the same day. The frequency and severity can also differ from one day to another.
    If you have any other questions, please feel free to ask. Others on the forum have definitely helped me to have a broader and deeper understanding of cataplexy.
    @ferret & @sk8aplexy

    Many thanks, Ferret…I just noticed that you had posted a response as I was writing mine. I took out my reference to Sk8te’s cheat sheet since you included it above. 🙂

    #9314
    Avatar
    mobilealguy
    Participant
    @mobilealguy

    First post! I’ve been learning my triggers so no better post to start contributing than this. A little background… I’ve had narcolepsy since about 2002, but didn’t learn I had it until early 2017. I went on Xyrem in December, 2017. I didn’t know I had cataplexy until late December, 2018, and didn’t know I had cataplexy B until I read this forum a few days ago. I can now connect so many dots (and correct a misdiagnosis).

    In 2008 I had my first episode with cataplexy. I was at the gym and fell asleep and fell off the machine I was on. Of course, until recently I thought I had passed out. The gym staff told me my blood sugar was low causing me to pass out, and it made sense at the time because I hadn’t eaten. When I “passed out” I dreamed about a giant St. Bernard dog in yellow clouds. When I came to, my first words were “I was dreaming.” I thought I fell asleep on the machine, not that I “passed out” and fell to the ground. And I somehow felt it was important that they knew I was dreaming, don’t ask me why. Over the next nine years I wouldn’t have an episode where I would go to full REM sleep like that, but I had a several episodes where I was very close – all triggered by strenuous activity – gym/kickboxing.

    In 2017 (the same time I was diagnosed with N) I joined a gym with personal trainers and found I couldn’t complete many workouts with them because they were too strenuous in too short amount of time. I would have moderate minimal or moderate moderate reactions frequently, but had a moderate severe reaction the last workout I did with them. This lead to many trips to the doctor and to a cardiologist looking for answers. Ultimately they told me I had syncope, which I now know is inaccurate, but the testing process did lead me to discovering another cataplexy trigger (number 2 below).

    Here are my triggers that I know of so far:

    1. Strenuous activity such as working out. This has caused mainly a moderate minimal/moderate moderate type reaction, but as stated above I have gone all the way to REM in what I would classify as a severe minimal. For me, when I have a reaction I feel like I’m going to pass out, like I have to use the bathroom, and like I have to vomit. Anyone else have those sensations?
    2. Cutting off circulation to my arm and then releasing it is a trigger. For instance, when I have blood drawn and they remove the band that cuts off circulation after they finish I can have a reaction to it. I don’t always have one, but can. Or if you took my blood pressure twice in a row it can happen. I’ve had moderate moderate to severe minimal reactions to removing the band restricting circulation after drawing blood. I’ve only had blood pressure checked two times in a row twice, but both times yielded a reaction very near severe minimal (I’d say 95% there). Hindsight is a great thing and I recall having a reaction to having blood drawn where I became incredibly light headed in 2002.
    3. I’m hoping someone can relate to this or else I’ll feel I’m too psychological about it. I’m pretty sure I have reactions to seeing someone in the act of passing out or talking in too much detail about it. I was talking to someone about passing out while getting a haircut and went out with a severe minimal, two times. Both times I dreamed. In one dream I was on a playground and the other I was doing a luge on ice. Both times I woke my first words were “I was dreaming” as it was in 2008. I actually went to the ER thinking I had passed out. My friend was showing me a video a couple months ago in which she passed out and I told her to put it away because I was having a reaction to it (minimal severe). I was watching a show on Netflix in the airport last Friday and saw this character looking like she was going to pass out and I had a moderate minimal reaction and I stopped watching to try and keep myself from going to the ground. Thankfully I didn’t!
    4. I was at a baseball game last weekend and got excited over a scenario I completely imagined in my head. I had a moderate minimal reaction to it.

    I don’t know of any other triggers yet. Triggers 1 and 2 I’ve had for over a decade. The other two are recent discoveries. It’s kind of interesting I’m having new triggers after going on Xyrem, but I’m guessing the seeing someone pass out takes me to that place of me going out and it’s too real to me. I’m going to tell friends/family if they have to deliver any bad news to me to make sure I’m not driving. I’m afraid that could be a trigger that I don’t know about yet. We are some interesting people, for sure!

    #9317
    Ferret
    Ferret
    Moderator
    @ferret

    Sorry but what you are describing does not sound like cataplexy to me. The one thing that is not clear in Sk8aplexy’s Cheat Sheet in the Resources section is that Cataplexy is an emotional response to a SUDDEN UNEXPECTED event. Sudden… as in a clap of thunder out of a clear blue sky, grief, mirth, a truck backfiring, outrage, anger, etc.

    #9322
    Avatar
    Natdoc
    Participant
    @natdoc

    mobilealguy

    Welcome, your symptoms certainly are not typical of what we see with cataplexy, for the most part these episodes are triggered by emotions, as ferret described earlier. I am curious as to what other symptoms you experience. I am also interested in what you mean by cataplexy B?
    Some of the experiences you describe such as the episode with the blood pressure,or talking to someone during a haircut seems very odd and most probably are not cataplectic events, at least not in my experience.
    At any rate I wish you the best please keep us informed

    #9324
    Avatar
    mobilealguy
    Participant
    @mobilealguy

    Sorry but what you are describing does not sound like cataplexy to me. The one thing that is not clear in Sk8aplexy’s Cheat Sheet in the Resources section is that Cataplexy is an emotional response to a SUDDEN UNEXPECTED event. Sudden… as in a clap of thunder out of a clear blue sky, grief, mirth, a truck backfiring, outrage, anger, etc.

    My sleep doctor said I have cataplexy because people don’t dream when they “pass out.” With that said, it’s possible I have both cataplexy and syncope and what I’ve typed is mixing the two.

    #9326
    Avatar
    mobilealguy
    Participant
    @mobilealguy

    mobilealguy

    Welcome, your symptoms certainly are not typical of what we see with cataplexy, for the most part these episodes are triggered by emotions, as ferret described earlier. I am curious as to what other symptoms you experience. I am also interested in what you mean by cataplexy B?
    Some of the experiences you describe such as the episode with the blood pressure,or talking to someone during a haircut seems very odd and most probably are not cataplectic events, at least not in my experience.
    At any rate I wish you the best please keep us informed

    I am trying to figure out everything about myself and thought what I typed made sense, but now I see I might be mixing up two different things. When you go into cataplexy, do you dream?

    #9329
    Ferret
    Ferret
    Moderator
    @ferret

    No. That is what is called a sleep “attack”. With cataplexy, it is of usually short duration (seconds to a few minutes) but you are still very much aware of your surroundings and are conscious. You just can’t move because your muscles are paralyzed. Some people can’t speak or will stutter because they can’t control their voice.

    #9331
    Avatar
    mobilealguy
    Participant
    @mobilealguy

    No. That is what is called a sleep “attack”. With cataplexy, it is of usually short duration (seconds to a few minutes) but you are still very much aware of your surroundings and are conscious. You just can’t move because your muscles are paralyzed. Some people can’t speak or will stutter because they can’t control their voice.

    Yes then what I have is not cataplexy. It’s a shame my doctor lead me down this road. I’m fully out and I’m dreaming when it happens to me. It only last for a few seconds for me as well. Now time to go google more things. Sigh – I’ll never learn what’s going on it seems. Lol.

    #9333
    Ferret
    Ferret
    Moderator
    @ferret

    @mobilealguy
    Be happy and dance a jig because you don’t currently have cataplexy! The social implications can be devastating. I learned to shut my eyes early on because the looks on people’s faces are worse than going through the cataplexy.
    BTW, you may want to stick around and read some other sections of the forum and feel free to ask any questions.
    Finding the right Doctor is half the battle and NatDoc may be able to help you with that.
    Hang in there!

    #9336
    Avatar
    mobilealguy
    Participant
    @mobilealguy

    @mobilealguy
    Be happy and dance a jig because you don’t currently have cataplexy! The social implications can be devastating. I learned to shut my eyes early on because the looks on people’s faces are worse than going through the cataplexy.
    BTW, you may want to stick around and read some other sections of the forum and feel free to ask any questions.
    Finding the right Doctor is half the battle and NatDoc may be able to help you with that.
    Hang in there!

    Oh, I will stick around. I thought my first post would actually be in a Xyrem thread. I’m taking it – but I’m not a fan.

    #9346
    Avatar
    Natdoc
    Participant
    @natdoc

    mobilealguy
    Perhaps you could tell us how you were diagnosed with narcolepsy and what the results of your testing were. Also is the xyrem helping with this problem whatsoever?
    You have alot of symptoms here that need sorted out, not all attributable to narcolepsy.
    Sometimes we need to just back up, slow down, think and then develop a plan.
    There are many intelligent folks here who would be more than willing to help

    #9354
    Avatar
    mobilealguy
    Participant
    @mobilealguy

    mobilealguy
    Perhaps you could tell us how you were diagnosed with narcolepsy and what the results of your testing were. Also is the xyrem helping with this problem whatsoever?
    You have alot of symptoms here that need sorted out, not all attributable to narcolepsy.
    Sometimes we need to just back up, slow down, think and then develop a plan.
    There are many intelligent folks here who would be more than willing to help

    For my sleep study I did the overnight study first and didn’t have sleep apnea. I did the daytime study and they asked me how I felt I did for each session afterwards. I told them I didn’t fall asleep at 9AM because my brain was too active. I said I didn’t fall asleep at 11 AM because I was hungry and I knew I’d be eating lunch after the nap was finished. I knew I did fall asleep at 1 PM because they woke me up when the nap was over. And again at 3 PM I didn’t think I had fallen asleep. I actually fell asleep all 4 times and averaged falling asleep in 4 minutes. This was eye-opening for sure. I then went on Modofinil but I had an adverse reaction to it so I went on Adderall. The doctor gave me Lunesta to sleep at night. Then Ambien. Then Doxepin. Then Klonopin. Nothing put me to sleep. I then went on Xyrem in December, 2017. It took it about a month and a half to really start working, but it did start helping. I found at this point Xyrem made me a normal person during the day and I came off Adderall.

    Xyrem works for me, but I’m over the side effects. Two initial side effects (tingling in my extremities and ringing in my ears) went away over time. Here are my persisting side effects. Xyrem has totally killed my appetite during the day. I’ll be hungry for dinner, and starving when I take the medicine at night, but I have to force myself to eat lunch while not being hungry. At the time I started Xyrem, I was in the gym and in the process of trying to gain 10 pounds. Since I’ve been on Xyrem, I’ve actually lost 20 pounds instead. It also makes my forehead feel weird. It’s like I can always feel my veins moving and that wasn’t a thing until Xyrem. My scalp tingles and I believe that’s due to Xyrem. Call me crazy, but Xyrem makes my teeth feel like they don’t fit together. It’s hard to describe, but during the day my teeth don’t feel normal together, and when I take Xyrem at night my teeth or gums often feel swollen or something making them touch in places they wouldn’t normally touch and makes my upper and lower teeth seem to have an awkward fit together. I came off Xyrem a couple nights in February and my teeth went back to feeling normal. I am a musician that plays a wind instrument and it has affected that aspect of my life as well. In the morning it’s hard to have enough air for the instrument. It also makes my lips feel quiver while trying to play. This gets better as the day goes on, but I’m not playing at my top level.

    As noted in my original post I was having issues working out and would have reactions to it, so I was seeing doctors and cardiologists trying to figure that out. I was diagnosed with having syncope. I believe this is what I was confusing for cataplexy. In Dec. 2018 I asked my sleep doctor if there was a relationship to narcolepsy and dreaming when I pass out. He stated people don’t dream when they pass out and that I have cataplexy. That’s when I started doing research and found this page thinking I had it. I now see that I don’t. I do have something that causes reactions and I go out and dream. As ferret mentioned, maybe that’s a sleep attack. I will say while having tests run last year I did a glucose tolerance test. At that time we thought my gym issue was a blood sugar issue. This is the one time that I passed out and didn’t dream. So that speaks to syncope being a correct diagnosis. Every other time I’ve gone out I did dream, so I don’t know how to answer that one!

Viewing 15 posts - 16 through 30 (of 35 total)

You must be logged in to reply to this topic.