15 replies to this topic

[Samwise]

Hi everyone,

Feels a little weird to finally be joining this forum. I have been putting it off for multiple reasons but this past Friday's neuro visit prompted me to register. I was diagnosed with IH last February but they couldn't rule out N. (Hopefully I used those letters properly.) Basically, my overnight sleep study showed more signs of N (I was technically asleep by the time the nurse walked out of the room and within minutes it was like BAM, REM SLEEP!) But my MSLT wasn't as clear cut. Except for the fact that I was really flipping sleepy because the first four naps averaged together was I believe about 30 seconds and with the fifth one it was about 50 secs. Anyway, I was diagnosed with the above because I didn't havening cataplexy. Still don't, actually. But I do have hypnagogic and hypnapompic hallucinations - yay! So far I have sprained my wrist, given myself multiple bruises from running into things, and even cut/bruised my scalp once. I was on Provigil for about a year and long story short, it sucked for me. I was starting to lose all hope, especially when I asked my old doc if I would ever feel normal and she said no.

Cut to recently, when I moved to Pensacola. I transferred my care to a neurologist down here and we decided to try out Nuvigil. The 150mg is meh, but the 250mg made me a damn crazy person. So now I am trying 150mg in the morning and 50mg around lunch time, supplemented with adderall on those extra tough days. If this doesn't work, I might just have to take adderall in the morning then nuvigil around lunch. It works much better when I take it later, and I'd imagine that's because of the peak falling during my worst part of the day. And tying this rambling story back to the beginning - this past Friday I mentioned what I call the voodoo spells (the hypnagogic hallucinations) and asked if they were truly night terrors. I always felt like they were different. Well, he confirmed my thoughts and said no, not night terrors but HH... then he told me he thinks I have N versus IH.

At first I was relieved to finally have a clear answer! But now it's sinking in, and I'm terrified. I feel like a huge label has been slapped across me and I'm scared people will treat me differently. I don't know why, but it's just hitting me hard.

So..

How did y'all feel when you were first diagnosed? Any suggestions for battling the depression?

Does anyone have any good responses they say to people about the N? I'm pretty sure if I hear one more person tell me I'm so lucky I fall asleep easily I will flip a lid.

Any suggestions for meds? I know everyone is different but has anyone tried the Nuvigil/adderall combo I described?


I think that's it for now.

[DeathRabbit]

Yea, it is depressing. On good days, I feel like maybe I can live a normal life, but on bad days like today, I feel like my life is ruined and I should just skip to the end. But I've just got to soldier on. As far as advice goes try to remember that due to the neurochemical imbalances caused by the lack of delta wave and increase of theta wave sleep, that you will not be seeing things in the proper light and will have a tendency towards depression, even if everything in your life was amazeballs. Also, the stimulants sort of put one on a rollercoaster as well. So try to remember that you may not be seeing everything clearly and the feelings and reactions you have to things may be disproportionate. That helps me. Especially as far as the the stimulants go. I have learned to identify feelings that aren't actual, for lack of a better phrasing. If I am saddened or upset, but I cannot immediately think of a reason why or if I catch myself starting to come up with ad-hoc reasons for a foul mood, I just label the feeling as fake and do my best to ignore it. I have seen people with debilitating conditions take it out on the others around them and I am deadset against that. Having narcolepsy sucks, but its my problem and noone elses, and I will not visit it upon them if I can help it. Anyways, good luck!

[Hank]

I have a few annoying people who I love who keep/kept telling me I was/am depressed or anxious. When I say that while I acknowledge it appears that way, I am actually positive and optimistic. Depression does not make my life hard. Narcolepsy makes my life hard, and that is kind of depressing. Narcolepsy does not make me depressed. Living with Narcolepsy just sometimes wears me out. I am not anxious about meetings, I am anxious about staying awake through meetings. Now that I am correctly diagnosed and treated, my life is not as hard and I am very happy about that. What is depressing to me is having people I care about telling me how depressed they think I am. If they knew how hard this illness can be to live with, they might understand how positive I actually am. And I am positive I am living with Narcolepsy, not suffering from Depression. I am sometimes suffering from other people, and I still love them because I am so positive. I thought this article was interesting:

J Nerv Ment Dis. 1983 May;171(5):290-5.
Sleep in narcolepsy and depression. Does it all look alike?
Reynolds CF 3rd, Christiansen CL, Taska LS, Coble PA, Kupfer DJ.
Abstract
Depression has been reported to be frequent in narcolepsy and has been considered to be variously a reaction to chronic sleepiness or an endogenous expression of the pathophysiology of narcolepsy. Supporting the latter possibility are reports of similarities between the nocturnal rapid eye movement (REM) sleep of narcoleptics and inpatients with endogenous depression. In a comparison of 25 consecutive narcoleptics and 25 age-matched outpatient primary depressives, significant group differences were found in nocturnal EEG sleep measures of sleep continuity, sleep architecture, and REM sleep. Twenty per cent of the narcoleptic sample met Research Diagnostic Criteria (RDC) for a past history of major or chronic intermittent depression, but 60 per cent did not meet RDC criteria for any present or past psychiatric disorder. These findings mandate a cautious reevaluation of the nature of depressive symptoms in narcolepsy and leave open the question of whether there are common neurobiological control mechanisms in narcolepsy and depression.

[Samwise]

Thank you for those responses! I totally get where both of you are coming from. The most recent pangs of sadness I can recognize are from getting the diagnosis. But, I know it has only been a few days so I think. I will soon get over it. And Hank, I think you described how I have been feeling about it perfectly. Sometimes it does make me sad but the way you described the meeting thing is exactly how I would feel. I also try not to use it as an excuse for not doing things I want to do, or responsibilities at work. Sometimes it's hard to admit it does prevent me from doing certain activities, though. I guess what I'm trying to say is part of me keeps thinking "bah, this sucks!" and the other part reminds myself I got my masters degree while struggling through a diagnosis/treatment so I need to keep chugging along.

Hopefully that all made sense. I will also add, it is a huge relief to talk to people who actually understand all this.

[Hank]

Thank you for those responses! I totally get where both of you are coming from. The most recent pangs of sadness I can recognize are from getting the diagnosis. But, I know it has only been a few days so I think. I will soon get over it. And Hank, I think you described how I have been feeling about it perfectly. Sometimes it does make me sad but the way you described the meeting thing is exactly how I would feel. I also try not to use it as an excuse for not doing things I want to do, or responsibilities at work. Sometimes it's hard to admit it does prevent me from doing certain activities, though. I guess what I'm trying to say is part of me keeps thinking "bah, this sucks!" and the other part reminds myself I got my masters degree while struggling through a diagnosis/treatment so I need to keep chugging along.

Hopefully that all made sense. I will also add, it is a huge relief to talk to people who actually understand all this.

It makes sense to me- we live with the same illness. We speak N-ish. Congrats on the Masters. I have hopes. No excuses.


Also

How did y'all feel when you were first diagnosed? Any suggestions for battling the depression? I bounced between terrified and relieved for a few months.

Does anyone have any good responses they say to people about the N? I'm pretty sure if I hear one more person tell me I'm so lucky I fall asleep easily I will flip a lid.


I kept having people say "that happens to me sometimes too, are you sure it isn't just...". I said- would you ever say to someone in a wheel chair "sometimes I sit down, too" as though they now had something in common.

People say stupid stuff, but basically they are trying (poorly) to be supportive. If they don't know what it's like to live with N, then ask me. Just please don't tell me what living with N is like when you have no idea.

Any suggestions for meds? I know everyone is different but has anyone tried the Nuvigil/adderall combo I described?


Adderall XR has been a lifesaver- but not for everyone. Provigil was not for me- but others have had good exerience. It is all trial and error until you find something that works. It's like buying jeans- very little difference, but the difference is a really big deal. I only wear Levis and Xyrem/Adderall XR is working for me.

[DeathRabbit]

I can identify with Hank for sure. There's a difference between feeling sad about something and being depressed. Unfortunately, it's not one we bother to parse anymore in our culture. I feel sad every day I have narcolepsy. I only get depressed on the really bad ones, both because I have a tendency to stress out because of worrisome symptoms and because of the pharmacological effects of N and the treatments thereof. In our overly medicated culture, if the perennial smile you are supposed to have plastered on your face falters for a second, doctors want to shove SSRIs down your throat. Nevermind that most of these drugs are starting to show permanent brain damage in long term patients; they are still being marketed as a lifelong cure for all unpleasantness in one's life. Without sadness, you don't have a zero point for joy. I realize I'm diving OT here a little bit, but I think Psychotic Waltz said it best: "I remember when we had the right to be sad all the time."

[Hank]

Cheers to all of you. I do have a right to be sad and I choose to be positive. I try to find meaning and purpose for events and that makes the sadness small and sometimes beautiful. My family is from Ireland, dealing with sadness is almost an artform and great comic relief. Things are never as bad as they seem- and they're never as good as they seem. Life happens in the balance.

[DeathRabbit]

Cheers to all of you. I will make a toast to you when I take my Xyrem in a few minutes ( aka "Xy-garita"- makes it sound more fun ). I do have a right to be sad and I choose to be positive. I try to find meaning and purpose for events and that makes the sadness small and sometimes beautiful. My family is from Ireland, dealing with sadness is almost an artform and great comic relief. Things are never as bad as they seem- and they're never as good as they seem. Life happens in the balance.

Good deal, man. Stay positive! After all, a number of successful people had N. There was a French Artist in the Romantic period that actually painted all his Hypnogogic experiences and made quite a name for himself. I have found many famous figures in my research that had N and managed to mitigate it or even turn it to their advantage.

[Megssosleepy]

I can identify with Hank for sure. There's a difference between feeling sad about something and being depressed. Unfortunately, it's not one we bother to parse anymore in our culture. I feel sad every day I have narcolepsy. I only get depressed on the really bad ones, both because I have a tendency to stress out because of worrisome symptoms and because of the pharmacological effects of N and the treatments thereof. In our overly medicated culture, if the perennial smile you are supposed to have plastered on your face falters for a second, doctors want to shove SSRIs down your throat. Nevermind that most of these drugs are starting to show permanent brain damage in long term patients; they are still being marketed as a lifelong cure for all unpleasantness in one's life. Without sadness, you don't have a zero point for joy. I realize I'm diving OT here a little bit, but I think Psychotic Waltz said it best: "I remember when we had the right to be sad all the time."

I have recently noticed that I am no longer depressed, I have been since 10/11th grade (way to long) Ive been through so many downs and then lil ups and then much further down... I have a habit of having wonderful friends, and then something happens and they disappear, or a perfect relationship until they realize I wont ever be happy! only spurts...

Since starting Xyrem I have had many heart to hearts (with myself) and have figured out a lot about myself my past my mistakes, and things that were not my mistake or my fault. Its been very eye opening... now I can say I no longer think about ending it all... I think about the house I want to buy and the beautiful garden I will plant, and getting my pup a mate (lol)
I am no longer depressed but I am very very very sad. I like to make plans and have control and the N has taken that away from me!

Hmmmm... is it just me or do we all seem a bit blue that past few days? How odd. Change in seasons in my guess... I love love love the fall, but with change (for me) comes a sadness. I am happy to no longer be depressed and I try to think of that when I am down. I am happy I have had a chance to think clearly, figure things out that I never could before. Getting deep sleep is altering my brain to think fully again, instead of being stuck in a bubble of depression...

If only I could get back what Ive lost get back so many days months years... wasted due to this. I want something to fight something to cure, Narcolepsy is neither!

I need to snap out of this mood, good grief!!

[DeathRabbit]

I have recently noticed that I am no longer depressed, I have been since 10/11th grade (way to long) Ive been through so many downs and then lil ups and then much further down... I have a habit of having wonderful friends, and then something happens and they disappear, or a perfect relationship until they realize I wont ever be happy! only spurts...

Since starting Xyrem I have had many heart to hearts (with myself) and have figured out a lot about myself my past my mistakes, and things that were not my mistake or my fault. Its been very eye opening... now I can say I no longer think about ending it all... I think about the house I want to buy and the beautiful garden I will plant, and getting my pup a mate (lol)
I am no longer depressed but I am very very very sad. I like to make plans and have control and the N has taken that away from me!

Hmmmm... is it just me or do we all seem a bit blue that past few days? How odd. Change in seasons in my guess... I love love love the fall, but with change (for me) comes a sadness. I am happy to no longer be depressed and I try to think of that when I am down. I am happy I have had a chance to think clearly, figure things out that I never could before. Getting deep sleep is altering my brain to think fully again, instead of being stuck in a bubble of depression...

If only I could get back what Ive lost get back so many days months years... wasted due to this. I want something to fight something to cure, Narcolepsy is neither!

I need to snap out of this mood, good grief!!

Well if there is one silver lining for me, it's that I lost nearly 100 lbs, due to actually being able to exercise when I started taking the testosterone injections. But at the same time, the rapid change in my hormone level caused me to do some foolish things in regards to members of the opposite sex. I have a great girlfriend now, but the path there was quite circuitous for me and cost me several friendships. :/

[Hank]

I cut/pasted something interesting. With depression being frequently reported in PWN, the effects of antidepressants on Sleep Architecture seems like an important topic. I added a list of active ingredients and Brand Names to help translate. Hope this is helpful to someone.

citalopram (Celexa, Cipramil, Cipram, Dalsan, Recital, Emocal, Sepram, Seropram, Citox, Cital
dapoxetine (Priligy)
escitalopram (Lexapro, Cipralex, Seroplex, Esertia)
fluoxetine (Depex, Prozac, Fontex, Seromex, Seronil, Sarafem, Ladose, Motivest, Flutop, Fluctin (EUR), Fluox (NZ), Depress (UZB), Lovan (AUS), Prodep (IND))
fluvoxamine (Luvox, Fevarin, Faverin, Dumyrox, Favoxil, Movox, Floxyfral)
indalpine (Upstene) (discontinued)
paroxetine (Paxil, Seroxat, Sereupin, Aropax, Deroxat, Divarius, Rexetin, Xetanor, Paroxat, Loxamine, Deparoc)
sertraline (Zoloft, Lustral, Serlain, Asentra)
zimelidine (Zelmid, Normud) (discontinued)

Most studies that investigated the effect of antidepressants upon sleep agreed that tricyclic antidepressants and selective serotonin reuptake inhibitors (SSRIs) suppress rapid eye movement (REM) sleep (Sharpley and Cowen, 1995). Some antidepressive substances lack a suppressive effect on REM sleep, like trimipramine (Steiger et al, 1989) nefazodone (Vogel et al, 1998) and bupropione (Nofzinger et al, 1995). However, other studies show that early changes of REM sleep parameters, especially REM latency and percentage amount of REM during the sleep period time, might predict treatment outcome with substances, which have an accute effect on REM sleep like amitriptyline (Kupfer et al, 1981; Gillin et al, 1978) and clomipramine (Höchli et al, 1986). Furthermore, changes in REM sleep, especially REM density, occur in the course of antidepressive treatment with fluoxetine (Buysse et al, 1999a) leading to an increase in REM density, whereas under nonpharmacological treatment (Thase et al, 1994; Buysse et al, 1999a) REM density decreases. In drug-free depressed patients, an increased REM density is a state marker of depression (Lauer et al, 1991).

Concerning changes in non-REM sleep the actions of antidepressants are inconsistent. For example, some increase slow-wave sleep (SWS) as tricyclic antidepressants like amitriptyline and trimipramine, others decrease it, as SSRIs like fluoxetine and paroxetine (Sharpley and Cowen, 1995). Besides these differences related to different drugs, gender also has to be taken into account for the interpretation of sleep-EEG characteristics. Gender differences exist in the sleep EEG of depressed patients under baseline conditions as a higher incidence of EEG delta activity (Reynolds et al, 1990), more delta and beta EEG activity of a higher amplitude, especially in the right hemisphere (Armitage et al, 1995a) or power of the delta- and sigma-frequency range in females (Antonijevic et al, 2000a). A challenge with growth-hormone-releasing hormone (GHRH) led to an increase in sleep efficiency and stage 2 sleep in males, but a decrease in female healthy and depressed subjects (Antonijevic et al, 2000a). Recently a differential efficacy for SSRIs compared to tricyclics in men compared to women has been described (Kornstein et al, 2000). With respect to the possible interactions between the type of drug and gender, we performed a study on the effect of two drugs with opposite actions on serotoninergic neurotransmission, that is, paroxetine as an SSRI and tianeptine as a serotonin reuptake enhancer (Mocaer et al, 1988). This property might correlate with the opposing action of tianeptine and the SSRI fluoxetine on hippocampal electrical activity (Shakesby et al, 2002). Furthermore, tianeptine decreases stress-induced HPA-axis activity in a similar way as desipramine, but different from paroxetine (Delbende et al, 1994; Connor et al, 2000). Despite this diverging effect of the tianeptine and SSRIs, they have some properties in common as tianeptine and the SSRI sertraline showed similar effects in the Behavioral Despair Test and in antagonizing the behavioral effect of olfactory bulbectomy (Kelly and Leonard, 1994). At the cellular level, the effect of tianeptine was similar to the tricyclic antidepressants imipramine, amitriptyline and desipramine and to the SSRI fluoxetine in inhibiting glucocorticoid-mediated gene transcription (Budziszewska et al, 2000).

http://www.nature.co...l/1300029a.html

[Megssosleepy]

I cut/pasted something interesting. With depression being frequently reported in PWN, the effects of antidepressants on Sleep Architecture seems like an important topic. I added a list of active ingredients and Brand Names to help translate. Hope this is helpful to someone.

citalopram (Celexa, Cipramil, Cipram, Dalsan, Recital, Emocal, Sepram, Seropram, Citox, Cital
dapoxetine (Priligy)
escitalopram (Lexapro, Cipralex, Seroplex, Esertia)
fluoxetine (Depex, Prozac, Fontex, Seromex, Seronil, Sarafem, Ladose, Motivest, Flutop, Fluctin (EUR), Fluox (NZ), Depress (UZB), Lovan (AUS), Prodep (IND))
fluvoxamine (Luvox, Fevarin, Faverin, Dumyrox, Favoxil, Movox, Floxyfral)
indalpine (Upstene) (discontinued)
paroxetine (Paxil, Seroxat, Sereupin, Aropax, Deroxat, Divarius, Rexetin, Xetanor, Paroxat, Loxamine, Deparoc)
sertraline (Zoloft, Lustral, Serlain, Asentra)
zimelidine (Zelmid, Normud) (discontinued)

Most studies that investigated the effect of antidepressants upon sleep agreed that tricyclic antidepressants and selective serotonin reuptake inhibitors (SSRIs) suppress rapid eye movement (REM) sleep (Sharpley and Cowen, 1995). Some antidepressive substances lack a suppressive effect on REM sleep, like trimipramine (Steiger et al, 1989) nefazodone (Vogel et al, 1998) and bupropione (Nofzinger et al, 1995). However, other studies show that early changes of REM sleep parameters, especially REM latency and percentage amount of REM during the sleep period time, might predict treatment outcome with substances, which have an accute effect on REM sleep like amitriptyline (Kupfer et al, 1981; Gillin et al, 1978) and clomipramine (Höchli et al, 1986). Furthermore, changes in REM sleep, especially REM density, occur in the course of antidepressive treatment with fluoxetine (Buysse et al, 1999a) leading to an increase in REM density, whereas under nonpharmacological treatment (Thase et al, 1994; Buysse et al, 1999a) REM density decreases. In drug-free depressed patients, an increased REM density is a state marker of depression (Lauer et al, 1991).

Concerning changes in non-REM sleep the actions of antidepressants are inconsistent. For example, some increase slow-wave sleep (SWS) as tricyclic antidepressants like amitriptyline and trimipramine, others decrease it, as SSRIs like fluoxetine and paroxetine (Sharpley and Cowen, 1995). Besides these differences related to different drugs, gender also has to be taken into account for the interpretation of sleep-EEG characteristics. Gender differences exist in the sleep EEG of depressed patients under baseline conditions as a higher incidence of EEG delta activity (Reynolds et al, 1990), more delta and beta EEG activity of a higher amplitude, especially in the right hemisphere (Armitage et al, 1995a) or power of the delta- and sigma-frequency range in females (Antonijevic et al, 2000a). A challenge with growth-hormone-releasing hormone (GHRH) led to an increase in sleep efficiency and stage 2 sleep in males, but a decrease in female healthy and depressed subjects (Antonijevic et al, 2000a). Recently a differential efficacy for SSRIs compared to tricyclics in men compared to women has been described (Kornstein et al, 2000). With respect to the possible interactions between the type of drug and gender, we performed a study on the effect of two drugs with opposite actions on serotoninergic neurotransmission, that is, paroxetine as an SSRI and tianeptine as a serotonin reuptake enhancer (Mocaer et al, 1988). This property might correlate with the opposing action of tianeptine and the SSRI fluoxetine on hippocampal electrical activity (Shakesby et al, 2002). Furthermore, tianeptine decreases stress-induced HPA-axis activity in a similar way as desipramine, but different from paroxetine (Delbende et al, 1994; Connor et al, 2000). Despite this diverging effect of the tianeptine and SSRIs, they have some properties in common as tianeptine and the SSRI sertraline showed similar effects in the Behavioral Despair Test and in antagonizing the behavioral effect of olfactory bulbectomy (Kelly and Leonard, 1994). At the cellular level, the effect of tianeptine was similar to the tricyclic antidepressants imipramine, amitriptyline and desipramine and to the SSRI fluoxetine in inhibiting glucocorticoid-mediated gene transcription (Budziszewska et al, 2000).

http://www.nature.co...l/1300029a.html

Hey Hank,
So I read this 3 times and I am still not really understanding... What is REM density? I am on Fluoxetine, does that mean that my REM will have been decreased by this anti depressant?

[Hank]

Megs- thanks for spurring me on to learn more. Your question has a very long answer. Please do not draw any conclusions from this- I am just cutting/pasting as I learn more.

Increased REM Density in Narcolepsy-Cataplexy and the Polysymptomatic Form
of Idiopathic Hypersomnia
http://www.journalsl...cles/240609.pdf

also:
A Pilot Study on the Effects of Sodium Oxybate on Sleep Architecture and
Daytime Alertness in Narcolepsy
http://www.journalsl...cles/270708.pdf

Effect of Sodium Oxybate on Polysomnographic Variables
Nocturnal Sleep Latency
With the exception of the first treatment night at the 4.5-gram
dose, the nightly administration of sodium oxybate resulted in
small but significant increases in sleep latency in both halves of
the night compared to baseline (Visit 2b; see Table 1). ANOVA
failed to reveal a dose-related trend.
Total Sleep Time
A significant decrease in total sleep time compared to baseline
was found during the first half of the night and for the night as a
whole at Visit 3 following 4 weeks of nightly treatment with 4.5
g of sodium oxybate (Table 1). Otherwise, no dose-related
changes in total sleep time were observed despite increasing the
dose of sodium oxybate to 9.0 g per night.
Nocturnal Awakenings
Fours weeks after the withdrawal of antidepressant medications,
no significant change in the number of nocturnal awakenings
was noted (Visit 2a). Compared to baseline, the administration
of sodium oxybate significantly decreased the total number
of nocturnal awakenings during both halves of the night at nightly
doses of 7.5 and 9 g (Table 1).

The Nightly Use of Sodium Oxybate Is Associated with a Reduction in Nocturnal Sleep Disruption: A Double-Blind, Placebo-Controlled Study in Patients with Narcolepsy
http://www.ncbi.nlm....les/PMC3014247/

[Megssosleepy]

Oh my gosh, so interesting! I always wondered what the difference was btwn IH and NN. And from reading that last snip it looks like I need to bump up to 9.0 to get more sleep! thanks Hank!

I wish sleep wasnt such a new study. But I am glad that it is finally being studied. In one of the books I am reading the author says something about how Humans always thought they died when they slept so it was taboo to study sleep... or something like that. It seems like there is so much to learn!


I found this interesting,

REM density might be considered to be an index of sleep
satiety.3,4
The correlation between sleep duration and REM density in the case of sleep extended beyond its normal length was
confirmed by Feinberg et al.5
Later, the same authors found REM
density reduced during recovery sleep after total sleep deprivation, hypothesising an inverse relationship between REM density and sleep depth.6
Antonioli´s observations showed that
increased need for REM sleep, produced by selective REM sleep
deprivation, took the form of decreased REM latency, increased
REM proportion, and reduced REM density during the recovery
night.7
However, Lucidi found a linear relationship between the
amount of sleep curtailment and the decrease in REM density in
the ensuing recovery night; he suggested that REM density could
be seen as a measure of sleep need.8

[sweetest_shone]

I kept having people say "that happens to me sometimes too, are you sure it isn't just...". I said- would you ever say to someone in a wheel chair "sometimes I sit down, too" as though they now had something in common.

[sweetest_shone]

This is JUST how I feel!
I couldn't have said it any better! This is great!