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Cataplexy And Antidepressants


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#1 Moss92

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Posted 09 July 2009 - 04:35 PM

I get worse cataplexy and signs of REM deprivation from taking antidepressants or St John's Wort. Have any of you heard of that happening? I've got several neuro things, and am trying to work out what's just N, and what's N interacting with other things. I know they antid's help lots of PWN - but I don't know how they work? What I'm confused over is how do they work so well for lots of PWN when they make us get less REM sleep? It'd be hard to understand this thing, even if it hadn't made me this slow and befuddled.
Moss

#2 Mike M

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Posted 09 July 2009 - 08:55 PM

I get worse cataplexy and signs of REM deprivation from taking antidepressants or St John's Wort. Have any of you heard of that happening? I've got several neuro things, and am trying to work out what's just N, and what's N interacting with other things. I know they antid's help lots of PWN - but I don't know how they work? What I'm confused over is how do they work so well for lots of PWN when they make us get less REM sleep? It'd be hard to understand this thing, even if it hadn't made me this slow and befuddled.
Moss


Moss, I have not heard of anti-depressants making someone's cataplexy worse, but nothing tends to surprise me in wonderful world of narcolepsy. The reason that anti-depressants help many PWNs (especially with cataplexy) is that we actually have too much REM. It is part of the reason that we do not get deep sleep. Also, PWNs w/ cataplexy experience cataplexy because their bodies think the trigger emotion is REM starting. The anti-depressants suppress that reaction. Have you had this experience with every anti-depressant you have tried? If you have tried 3 or 4 anti-depressants, you might want to consult with a neurologist who specializes in sleep issues (I realize that is often like finding a needle in 1000 haystacks). Good luck!

#3 Moss92

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Posted 12 July 2009 - 04:38 AM

Moss, I have not heard of anti-depressants making someone's cataplexy worse, but nothing tends to surprise me in wonderful world of narcolepsy. The reason that anti-depressants help many PWNs (especially with cataplexy) is that we actually have too much REM. It is part of the reason that we do not get deep sleep. Also, PWNs w/ cataplexy experience cataplexy because their bodies think the trigger emotion is REM starting. The anti-depressants suppress that reaction. Have you had this experience with every anti-depressant you have tried? If you have tried 3 or 4 anti-depressants, you might want to consult with a neurologist who specializes in sleep issues (I realize that is often like finding a needle in 1000 haystacks). Good luck!



Thanks Mike.
I'm really confused now :) . I had an anatomy and physiology lecturer who said - if we were simple enough to understand, we'd be too simple to understand ourselves.

I wouldn't be bothering our poor tired heads with this kind of detail - I'm not that curious, but I'm needing to get my head round it to try to work out a clearer dx and better treatment.

The bit I think I understand is

C is suppressed directly by antidepressants increasing serotonin levels, not by any effect on sleep quality?

And

Where there's normal N plus other neuro problems affecting sleep-wake areas, there could be a different pattern of sleep and REM deprivation, and that'd affect how N and C symptoms came out, and how they responded to drugs.
Or if the N type symptoms come from direct injury/other damage to the hypocretin sytem but there was also damage to other sleep wake areas there'd be an atypical N and also different reponses to drugs.

So
If I'm getting worse C and worse signs of REM deprivation from anti depressants, then that's really useful to know that that never happens in N.
Everything else that can reduce amount of REM sleep also makes me sick in all the ways that fit with REM deprivation and makes C worse.

And C is always worse for me when other REM deprivation problems are - and that's normal in N?

But the bit I can't get my head round is -
All the things that decrease REM time, make me worse too, and are the same things that make N worse.
Except for the antidepressants which reduce REM time, make me worse and PWN better.

Do anti depressants make better quality tidied up sleep for PWN? And better quality if less REM?

I've been going along, looking at REM in N in this way and trying to work out my sleep problems in relation to that - and could be starting from the wrong place.
I'd been thinking PWN got poor quality fragmented REM at night, so even when we slept for enough time and had enough minutes of REM time, it wasn't good enough REM.
And that xyrem got us sleeping deeper so it tidied up and normalised our sleep stages so we got better long spells of REM at night. So we weren't deprived of REM in the day, so there was less pressure on our system to tip us into REM the next day, and that helped the C? If REM deprivation is what causes our weight gain, metabolic X and diabetes II, and Xyrem can help turn that around for us that'd fit, Am I joining all the wrong dots? Any help to untangle this'd be lovely.

Moss

#4 Mike M

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Posted 12 July 2009 - 10:28 PM

I'm really confused now :) . I had an anatomy and physiology lecturer who said - if we were simple enough to understand, we'd be too simple to understand ourselves.


I am so glad to have "helped." I love the quote!

The bit I think I understand is

C is suppressed directly by antidepressants increasing serotonin levels, not by any effect on sleep quality?

And

Where there's normal N plus other neuro problems affecting sleep-wake areas, there could be a different pattern of sleep and REM deprivation, and that'd affect how N and C symptoms came out, and how they responded to drugs.
Or if the N type symptoms come from direct injury/other damage to the hypocretin sytem but there was also damage to other sleep wake areas there'd be an atypical N and also different reponses to drugs.


That sounds similar to what I understand to be the case with a couple of additions. C is suppressed directly by antidepressants, but C is also made better by sleep quality (meaning establishing more regular sleep stage and REM patterns in sleep. The other addition would be that even two PWNs with C and nothing else could respond in completely different ways to the same drugs.

So
If I'm getting worse C and worse signs of REM deprivation from anti depressants, then that's really useful to know that that never happens in N.
Everything else that can reduce amount of REM sleep also makes me sick in all the ways that fit with REM deprivation and makes C worse.

And C is always worse for me when other REM deprivation problems are - and that's normal in N?


I try to never say "never" with narcolepsy, but from what I understand few PWNs with C get worse with antidepressants. A key point here is the addition of "REM deprivation," though. While PWNs have disrupted REM, I don't think many experience "REM deprivation."

But the bit I can't get my head round is -
All the things that decrease REM time, make me worse too, and are the same things that make N worse.
Except for the antidepressants which reduce REM time, make me worse and PWN better.

Do anti depressants make better quality tidied up sleep for PWN? And better quality if less REM?


As I stated above, it is the disrupted REM and the lack of deep sleep (stage 3/4) that exacerbate narcolepsy. What the antidepressants do is inhibit the brain from jumping in and out of REM during the night sleep cycle. They also reduce the brain's attempt to relax the body during strong emotion in the daytime © because REM is suppressed. I hope that makes sense.

I've been going along, looking at REM in N in this way and trying to work out my sleep problems in relation to that - and could be starting from the wrong place.
I'd been thinking PWN got poor quality fragmented REM at night, so even when we slept for enough time and had enough minutes of REM time, it wasn't good enough REM.
And that xyrem got us sleeping deeper so it tidied up and normalised our sleep stages so we got better long spells of REM at night. So we weren't deprived of REM in the day, so there was less pressure on our system to tip us into REM the next day, and that helped the C? If REM deprivation is what causes our weight gain, metabolic X and diabetes II, and Xyrem can help turn that around for us that'd fit, Am I joining all the wrong dots? Any help to untangle this'd be lovely.

Moss


Here, you are more on the mark. PWNs do get "poor" rest because even though we sleep our REM is fragmented and disrupted, AND we get little if any deep sleep. It is the deep sleep that is even more problematic because that is when the body heals and recoups. My understanding is that most PWNs actually experience more REM in any given night than the average person. When I had my second PSG and MSLT (the one that diagnosed me), my sleep doctor talked about how my PSG showed fairly clear signs of narcolepsy. One of his reasons was that I was in REM far too long. Ironically, I had a PSG and MSLT 3 years before that. While my first sleep study showed that I clearly had sleep issues (latency of 6.5 and clearly disrupted sleep), I did not have REM in my naps and my night time REM looked more normal. That doctor never told me to stop my antidepressant, though. So, it was in my system, suppressing my REM.

Xyrem does help to make a PWN's sleep cycle more normal (again it depends on the PWN), primarily by inducing deep sleep. That helps to normalize the REM. So, things do become tidier, but in this way too, PWNs tend to have less REM than they had when their narcolepsy was untreated. I definitely hope that you will be able to figure out what is happening for you. I also hope that I have not made anything more confusing.

Hopefully, a few others will post (in case I am way off the mark on this). In the end, the best place to go for answers would be a neurologist specializing in sleep issues. Hang in there and good luck!

#5 ulooktired

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Posted 12 July 2009 - 11:04 PM

I get worse cataplexy and signs of REM deprivation from taking antidepressants or St John's Wort. Have any of you heard of that happening? I've got several neuro things, and am trying to work out what's just N, and what's N interacting with other things. I know they antid's help lots of PWN - but I don't know how they work? What I'm confused over is how do they work so well for lots of PWN when they make us get less REM sleep? It'd be hard to understand this thing, even if it hadn't made me this slow and befuddled.
Moss


I found that antidepressants work better with time, but never prevented cataplexy just made it not as bad. What helps me is Xyrem, it really seems to knock out cataplexy if taken regularly. Provigil helps with fatigue about as much as a strong cup of coffee, that is if you haven't had coffee in a while. I'm immune to it's affect except for evey once in a while I'll get a boost. I still drink it constantly anyway-habit i guess.
Good luck and keep in mind there are lots of antidepressants to try.

#6 Moss92

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Posted 14 July 2009 - 04:15 AM

Thanks ulooktired, It's good the xyrem's working so well with you and made so much difference. I get worse over time with anti d's and I'm a bit wary of trying another for now, but I will someday, just to be sure. Xyrem's out of reach for now, but maybe one day. And figuring this thing out could help that happen - Thanks for the ideas.

Hi Mike Thanks for going through it all, taking time to sort through it for me. It's really kind.
I think I've been confusing myself! And I probably still am :rolleyes:

I was thinking PWN get a kind of REM deprivation state from having fragmented, not good enough, REM.
In non sleep deprived normals, SWS comes before REM - so I could have got myself confused over what factors influence amounts of REM and SWS independently or together.
I'd read xyrem works in N because it's one of the very few hypnotics that doesn't reduce REM sleep, but it could be they got confused the same way. I need to go and read a LOT more.
I'm so out of my depth with all this, but I've not got much more faith in doctor's understanding of it either, every sleep neurologist I've seen contradicts the last. They aren't stupid (well, one of them was) they just work too hard and don't have time to read.

My head is still stubbornly looking for ways to stay confused about this - I can see that SP and HH could come from either a broken REM switch, or pressure on that switch from REM deprivation.
But the brief spells of hyperactivity with carb craving, then eating carbs and slowing down, that lots of PWN describe, that gets so many of us dxd bipolar, - that's like the effects of REM deprivation. So I need to go away and do lots more reading, check my sources better this time. Cheers Mike. I'll get myself clearer about it all, and go back to the sleep doctor .

#7 Mike M

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Posted 14 July 2009 - 09:12 PM

Moss92,

I sincerely hope that you do not go away (at least not for long). My own belief is that the more we PWNs communicate, the better we will all understand this condition. I do agree with you when it comes to doctors. They do mean well, but even the doctors trained in "sleep" have little to no understanding of what is happening in narcolepsy (fortunately there are a few exceptions to that). Good luck with your research. I definitely hope that you can find a way to manage your cataplexy. Cheers!

#8 sunrisemoon

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Posted 14 July 2009 - 09:34 PM

Can I just clear up something?
NREM = deep sleep
REM = dream sleep

PWN have extremely reduced NREM and a much earlier onset of REM than people with normal sleep patterns.

In my case, REM starts in about 10-15 minutes after my head hits the pillow. (LOL but if I am on the couch, it's more like 1-3 minutes.)

The disruption, at least for me, is due to constant waking coming out of REM (and the consequent headache in the mornings). The meds I take lessen the dreaming to an extent. I don't know if that also increases my NREM, but I definitely don't get the sleep disruption as often.

#9 Moss92

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Posted 15 July 2009 - 03:45 AM

Can I just clear up something?
NREM = deep sleep
REM = dream sleep

PWN have extremely reduced NREM and a much earlier onset of REM than people with normal sleep patterns.

In my case, REM starts in about 10-15 minutes after my head hits the pillow. (LOL but if I am on the couch, it's more like 1-3 minutes.)

The disruption, at least for me, is due to constant waking coming out of REM (and the consequent headache in the mornings). The meds I take lessen the dreaming to an extent. I don't know if that also increases my NREM, but I definitely don't get the sleep disruption as often.



Hi Mike, thanks -no I won't go away, away, just need to think more , and probably come back with a load more dx questions. Cheers for the help.


Hi Sunrisemoon, I have that dreaming before sleeping thing every day, like SOREMs, and have nights that seem like they are all HHs and waking up between half awake dreams, like fragmented REM. Then I read something saying people dream within NREM as well as REM, and have some REM without dreams - sometimes it feels like there's research saying anything about anything! And it's like swimming through treacle trying to understand this thing.
I think there's different stages of NREM from drowsy to deepest sleep.What got me confused is researchers aren't all agreeing yet on what the changes are. I know research is for arguing through the possibilities, but I want it to be simpler, so I can work out how to handle it best and get on with other things.

All the doctors I've seen have taken a different understanding of N from the research. I was asking if anyone did better without antidepressants, because so many times people get told by their doctors that what they experience can't be real, then 5 years on some researchers gets some money to look at it, then over the next ten years as the research gets through to the doctors it becomes a legitimate, medically respectable experience to have. I'm sounding sour today. bad night. tomorrow will be better.

#10 chimbakka

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Posted 20 July 2009 - 10:01 AM

I get worse cataplexy and signs of REM deprivation from taking antidepressants or St John's Wort. Have any of you heard of that happening? I've got several neuro things, and am trying to work out what's just N, and what's N interacting with other things. I know they antid's help lots of PWN - but I don't know how they work? What I'm confused over is how do they work so well for lots of PWN when they make us get less REM sleep? It'd be hard to understand this thing, even if it hadn't made me this slow and befuddled.
Moss


Effexor makes my cataplexy really bad. I switched back to Celexa and dont have attacks at all now

#11 Moss92

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Posted 24 July 2009 - 10:01 AM

Effexor makes my cataplexy really bad. I switched back to Celexa and dont have attacks at all now


thanks, that's really useful to know it can happen in normal N, and that bit of my bad reaction to them might be within the range of normal for N. So it's worth keeping on experimenting. will let yous know if I find out anything useful