Index Support Center Forums Treating Narcolepsy Cataplexy goes away with age …

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  • #5869
    AvatarAnonymous

    I can see FERRET hasn’t changed one IOTA. After 20 years, it’s mostly gone.

    Cataplectic symptoms in general tend to decrease with age. A review of 100 patients with cataplexy at the Stanford Sleep Disorders Clinic (age range 12-20 years) reported that 62 of these patients stopped taking anti-cataplectic medications after 10 years [2]. However, the general decrease in cataplectic symptoms with aging may be reversed after the experience of a significant emotional upset, such as a loss of spouse in older subjects [11].
    http://www.scholarpedia.org/article/Cataplexy

    #5871
    AvatarAnonymous

    What else do you want me to back up?

    #5872
    AvatarAnonymous

    My doc said all his patients experienced a gradual decrease in cataplexy until it disappeared. However, they were all lost to follow up after so many years. Treatment only seems to work for 15 years?

    I think they committed suicide. He won’t say it, but he has the best bedside manner I have ever seen. They would not have left him.

    Plus, the mortality rate for narcolepsy is 50% higher per age bracket against controls. So Stanford saying we live long lives is bull.

    The higher death rate can be attributed to cardiovascular disease, suicide, cataplectic injury, complications wrt anesthetics as other conditions come on board and surgery with a general is required, etc.

    #5878
    FerretFerret
    Moderator

    Well, aren’t you just a little ray of sunshine.
    That is a well put together article but your general comment about it going away with age is based on this…
    “A review of 100 patients with cataplexy at the Stanford Sleep Disorders Clinic (age range 12-20 years) reported that 62 of these patients stopped taking anti-cataplectic medications after 10 years [2]. However, the general decrease in cataplectic symptoms with aging may be reversed after the experience of a significant emotional upset, such as a loss of spouse in older subjects [11]. ”
    … when at the BOTTOM CLOSING PARAGRAPH it states this…
    “Cataplexy is commonly associated with narcolepsy. Primary cataplexy is a life long condition and can be disabling for the individual. Therefore, accurate diagnosis, education, and treatment are essential in order to allow the individual to have a normal and active lifestyle.”

    So, which is it? Considering that I’ve tried their recommended meds (with the exception of Xyrem) and I still have it after 32 years, I’d say that the ASSUMPTION based on only 100 patients who they couldn’t follow up on is B.S.

    #5898
    AvatarSleepyPete
    Participant

    I joined this forum just so I could chime in on this. I have had cataplexy for more than 20 years. It has not gone away. It has not diminished; if anything, it has gotten worse. I take Effexor to control the cataplexy. If I discontinue taking the Effexor, after a few days, the cataplexy comes roaring back in, not just head dipping, but drop-down definite.

    If cataplexy declines in other people, more power to them. I’m just not one of them.

    #5906
    JasonJason
    Keymaster

    @sleepypete Welcome to the crew! There’s some research suggesting EDS, cataplexy, etc may improve with age in some people. Sudden discontinuation of medications that prevent cataplexy can temporarily cause severe cataplexy that is worse than baseline. So unfortunately the only way to know if your baseline cataplexy has improved would be to do a slow taper off the medication.

    Anyway, everyone is different so it’s impossible to fit all people with narcolepsy. Weirdly, my sleep physician always says in his experience, EDS is usually the first symptom and that cataplexy may not develop until years later. There’s some research suggesting that narcolepsy may be more of a neurodegenerative disease that in some people gradually or episodically worsens until the orexin producing neurons are almost completely destroyed. Once that total or near total destruction occurs, the brain may try to rewire itself to compensate for the loss of orexin (hence the improvement). I think this may be what @idiopathichypersomniac was getting at.

    #5913
    AvatarSleepy RBD
    Participant

    Thank you @Ferret and @SleepyPete for your responses.

    “Cataplectic symptoms in general tend to decrease with age.” (link to article cited above)

    Unfortunately, my body also appears to have missed this memo. According to the statements in the study and conclusions drawn, I am well overdue for a break. I guess, like you guys, I am one of those that would not have been in the “most cataplexy sufferers” category according to the 100 person study. To the contrary, my cataplexy has definitely increased in frequency and severity through the years.

    Since I first read the above referenced article, I have tried unsuccessfully to find the original study / abstract from which the information in the Scholarpedia article was quoted. (reference #2. Christian Guilleminault, J.H.L., Viola Arias, Cataplexy, in Narcolepsy and Hypersomnia, M.B. Claudio Bassetti, Emmanuel Mignot, Editor. 2007, Informa Healthcare: New York. p. 49-62.)
    I am posting it here in case any others would care to join in the search. I’ll try to continue searching and have added reference #11 (Guilleminault, C.G., M., Clinical aspects and features of cataplexy in negative motor phenomena., in Advances in Neurology, M.H. S Fahn, HO Ludders, CD Marsden, Editor. 1995, Lippincott-Raven (publ.): Philadelphia. p. 65-77) to my list.

    @jasonm Thank you for the encouraging thoughts, but I think that I may be way past that expiration date for cataplexy to turn around. I find it disheartening that I found that same study quoted, but with even less information than what was given on the Scholarpedia site. Cataplexy seems to decrease with age (Guilleminault et al., 2006). This quote is on page 21 and I have definitely not read the entire 177 pages of the paper. The thirty-eight percent of the people that did not have these results are not even mentioned there. As you pointed out, everyone’s story is different. I just don’t think theirs should be overlooked. It was also indicated that the decrease in symptoms could be reversed. So, like Ferret said, “Which is it?” I remain confused. In my opinion, this study was too limited in scope to draw such broad conclusions. I would welcome additional studies or other references.

    In full disclosure, I don’t take anti-cataplectic or other prescription meds for narcolepsy or my other sleep issues, so I can’t be experiencing rebound cataplexy. The increase in cataplexy, for me, has been through the years.
    For now, I’ll try to continue to wait for the laws in my state to change or perhaps my brain will begin to rewire itself. 🙂

    #5927
    FerretFerret
    Moderator

    @Jason,
    There is a very big difference between regular cataplexy and rebound cataplexy from cold turkey med withdrawal. The latter is like regular cataplexy on steroids… more frequent, more severe and with a hairpin trigger.
    When you discover, after diagnosis, that the meds don’t help, is there much point in going back to the Doctor? OMG! I must have committed suicide and didn’t get the notice.
    @SleepyPete and @SleepyRBD …….. HUGS!

    #5944
    JasonJason
    Keymaster

    @ferret Yeah I know! Supposedly the cataplexy from suddenly stopping anticataplexy meds can cause episodes lasting over an hour. I hope I never develop it. I don’t doubt that the suicide rate, etc is higher in N. We all know it sucks and generally people with chronic disabilities have much higher incidences of, depression, suicide, etc. But that’s kinda why we need a good group of supportive people! This group has been great for me and I was flooded with emails about how the NN forum saved their life when we started this project. But I agree, people just flake out and that doesn’t mean they offed themselves.

    @sleepyrbd (the space in your username breaks the @ function for pestering you, just fyi!) I’d wager the decrease in cataplexy is more based on clinician experience than any hard research. It’s a real tragedy so little research exists on N that isn’t medication related. The pharma research is often pretty dubious IMO. I’d love to expand the scope of this organization to fund research on topics like those by creating an official non-profit and seeking grants and a smile.amazon account, etc.

    I have no idea how you manage without meds. You are made of tougher stuff than I am, haha. I’d hypothesize the increase in cataplexy after a traumatic event is probably true regardless of whether cataplexy has improved or not. Since cataplexy is often triggered by emotions and a trauma like the loss of a spouse isn’t something most people get over quickly if ever. It can actually reduce the surviving spouse’s lifespan significantly. Men in particular seem to drop like flies after the loss of a spouse for some reason. If you don’t mind sharing, why did you decide to go medication free? I’ll see if I can dig up some more research on the topic and try to find that paper.

    #5953
    AvatarSleepy RBD
    Participant

    @Ferret Thanks for sharing the journey and the hug…back to you…
    @jasonm Thank you for continuing to make sharing this journey possible.

    I have to head out for the day, but I will try to formulate a proper response later. I just wanted to express my gratitude to both of you and the others who have come along on this journey that none of us would have chosen! You guys have helped to lighten the load in ways that you may never know… 🙂
    I’ll also try to work on the user name thing.

    #5957
    JasonJason
    Keymaster

    @sleepyrbd, It’s not big deal about the username! Literally, not even I can change your user name or mine. The only way to fix it would be for you to create a whole new user account. I’m hoping that I can figure out how to get the @ function to work for nicknames too but I haven’t had the time to look into it yet and programming is not my forte.

    Thank you for the kind words! It made my day! It’s why we do it! Sending you a pm about the username thing.

    #5968
    TheRabbitKingTheRabbitKing
    Keymaster

    Honestly, I could probably update a user’s name in the database table quicker than adding code to tie the mentions to nicknames. I’ll run an experiment tonight and if it works, I’ll let the community know and you can just PM me or Jason for name changes that will be more functional

    My current jam: Anathema - Springfield

    #5977
    TheRabbitKingTheRabbitKing
    Keymaster

    Okay, I can definitely do this and it’s simple, so if anybody wants an “official” name change, just PM me.

    My current jam: Anathema - Springfield

    #5988
    AvatarSleepy RBD
    Participant

    @jasonm
    About the medication choice…In a way it’s rather complicated; but here is an attempt at a short version.

    I’m definitely not tougher than anyone else. 🙂 I think that it is just a combination of different life circumstances, experiences, and severity of symptoms that play into each person’s decisions. Please know that I respect and value the choices that each person makes in terms of medications, lifestyle, or whatever works for them. If my everyday experiences with cataplexy were all like my worst days* or if I were still working, I would most likely have to make some other choices. That might still be in my future.

    Edit: *When I am sitting or lying on the floor, I have a different perspective, literally and figuratively. It is at those times, especially on days when it is harder to break that cycle, I find myself reaching for the white flag.

    @TheRabbitKing
    Thanks for checking about the name change!

    #6030
    AvatarAnonymous

    That would be good if it would

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