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#1 All nightmare long

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Posted 15 September 2008 - 09:01 PM

I have been diagnosed with Narcolepsy since 1994. Lately I have been plagued by terrible nightmares, almost hallucinations (not quite..have had those before!!). The nightmares are stressfull, scary, complex, so convoluted that I can't even explain them to my spouse. I awake beaten down by these dreams. I take Ritalin during the day and Anafranil at night, and the meds have been working well up to lately...I just can't get away from those terrifying nightmares, many of them recurring dreams on top of that! Has anyone experienced anything like this? Any suggestions?

#2 NannyMissB

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Posted 18 October 2008 - 05:53 PM

Nightmares are very frustrating for me as well.

They also set the tone for my day and I wake up cranky after bad ones.

They come and go with no rhyme or reason or triggers.

The bad ones wake me up in tears or even screaming.

My boyfriend reports that I have them more often than I know because if I don't wake up I amy not remember them but he says I cry out a lot in my sleep.

Poor guy! No wonder he's so tired all the time!

Obviously nightmares don't just affect the patient, they affect our partners as well.

I have no suggestions other than journaling what you remember.

This may get the bad thoughs out of your head.

I have heard it helps others, but it does not work for me.

Talk to your doc and see what he/she has to say.


#3 Kimberly

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Posted 18 October 2008 - 06:04 PM

I almost never remember my dreams, but my husband also has to wake me up, sometimes multiple times in one night, because I am crying or making otherwise terrified/frightened sounds in my sleep.

He said since I started taking Xyrem I am making fewer scared noises, but I am talking and babbling just as much as ever (lucky me, and lucky him, I also have the parasomnia known as somniloquy or sleep talking). He doesn't wake me up if I don't seem frightened, but he has taken to sleeping with ear plugs in occasionally if the talking is really bothersome.

I should note that he sleeps with a CPAP for his sleep apnea and it was hard for me to get used to at first, and I think it deadens how loud some of my nighttime sounds seem to him as well. I guess he's so understanding because we have to deal with his sleep disorder in addition to mine.

One possible suggestion is to go to bed at different times -- especially if you find that your nightmares come on right when you fall asleep (mine usually do). He would let me go to sleep, and usually within 10-20 minutes be waking me up from a dream, then let me fall back off to sleep and he would finally go to bed (pre-Xyrem). Now he wants to be asleep before me, so I wait for him to fall asleep and then go to bed. I would prefer that we have the same bedtime, but it's a small sacrifice for a better night's sleep.

#4 eldestpenguin

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Posted 18 October 2008 - 10:39 PM

I experience these nightmares as well. I do not even call them nightmares; I call them night terrors. I have had normal nightmares, and they are no big deal in comparison. That which I call a night terror is very distinctive; it is nothing like a regular dream or nightmare. I feel certain that what you are describing is what I call a night terror.

I have developed many strategies over the years, and my night terrors have become fewer and with less frequency. In the past, it seemed like they hit in cycles. I could go a long time with no night terrors. Once it started, it persisted for days, weeks, or months. I did not even suspect that I had narcolepsy at the time. Therefore, many of the strategies that I developed were based on psychological factors.

Before going into my crazy self-prescribed strategies, I would like to share my one truly medical experience. I am also very active in my sleep. I talk, scream, flail, and sometimes get up and walk. I am a nightmare of a sleeping partner. My neurologist felt that minimizing my sleep activity might make me feel more rested. He prescribed a medication that is typically used for Parkinson's patients, but has been proven to help people that have sleep disorders. I do not know how to spell the common name for it, but it sounds like cinnament. The bottle says Carbidopa/Levo 50/200 TB Samyl. It minimized me sleep activity incredibly. I was very still through the night and I remembered fewer dreams in general. I did not talk and scream through the night while I was on this medication. I did not feel more rested, but my husband did. My only problem with the medication was that I had a migraine quality headache every day. My neurologist said that headaches were not a common side effect of the medication at all, and was pretty firm in suggesting that there was another cause for my headaches. I discontinued the medication and my headaches stopped. However, I was under an extreme amount of stress at the time. I think it is fair to consider that perhaps the headaches were a result of stress combined with introducing a new drug to my body. Now that I have my stress levels reduced, I am going to try the medication again. I would strongly encourage any active sleeper to talk to their doctor about trying this medication.

Now I will go into my self-prescribed strategies. One thing that I do when the terrors hit is make an effort to interpret the dream. I like to reference www.dreammoods.com. They provide a dream dictionary. I look up the things that really stood out to me in my dream, and honestly analyze how it relates to current life situation. The truth is that narcolepsy presents some serious problems in dealing with many situations. Narcolepsy sets limits to your abilities, and the natural tendency is to fight limitations and operate like people that are perfectly healthy. By and large, I have a balance that enables me to lead a nearly normal life. Sometimes I push to hard, and sometimes I fail. This creates a serious conflict. I know that I did the very best I could and pushed myself to a limit that most people would not consider for anything less than a life or death situation. Yet, I also know that I have let somebody down, and they do not understand narcolepsy. Knowing that a person has narcolepsy does not give them an understanding of it. The individual that I disappoint feels that I did not care enough about their task to complete it properly; I am just irresponsible. If I know that somebody important in my life has come to consider me of poor character because of my sleep disorder, it is extremely hard for me to process on a psychological level. Despite knowing all of the facts, it still comes down to feeling like somebody believes you are a loser that can't get your act together because of something that is well beyond your control. It is very hurtful. I have found that my night terrors are exacerbated by these negative emotions that I do not want to have. I do not want to feel like that, so I will consciously push that emotion away. It makes no sense, but being aware of my problem does not seem to help my behavior. The emotion comes out in the terrors. I use the dream dictionary to interpret the details that stood out the most, and I get really honest about what is happening in my life. Voila! I accept the emotional conflict, go through whatever motions needed to resolve it, and the terrors stop.

Stress is another critical factor with night terrors. Everybody knows that stress makes any condition worse. We all have positive and negative stresses; stress can be physical, emotional, etc. Too much of any of it will trigger terrors for me. If I cannot determine a psychological basis for my terrors, I start cutting stress factors. This can be so hard, as we seemingly have little control over so many stress factors. It is usually the big factors that we truly have little or no control over. I cut the little ones. I love my career and I am a true work-aholic. I love to work and my mind is always at work. At present, I am in a very demanding position. I am at the office for about 50 hours a week; I bring work home with me. I am exhausted. I normally clean, plan meals for the week, grocery shop, and try to do something fun with my family on the weekends. My husband is very dedicated to taking me out on Friday night and pulling me out of work mode for at least that night and maybe for the weekend. I have worked every weekend for the past three weeks. Last night, I was just too tired. I genuinely felt like I needed to go to bed. However, my husband is truly incredible and supportive of my career and my need to push. I could not have my career without him; I cannot consistently wake up in the morning on my own. He gets up at 5:30 every morning and gives me Provigil. I will take it in my sleep. Then he makes coffee and brings it to me. Usually, between the pill and coffee I am very mean. He attempts to wake me, and I am very ugly in response. Of course, I am not yet conscious and do not remember these things. Further, I get really upset if anybody is ugly to me upon awakening. So, he spends half an hour every morning taking my abuse with kindness so that I can wake up happy and get to work on time. I come home in the evening, prepare or provide dinner, and spend about an hour with my family. Then I pull out the laptop and set to work again. I frequently work until well past when I should go to bed. My husband meekly suggests that I not stay up too late, as he knows the later I stay up dictates how mean I am in the morning. Everybody is ok with this for the most part, but they are not ok with being completely neglected. My husband wants Friday night and my daughter wants Saturday afternoon. So, Friday night came around and I was not up to it. Given all the circumstances, I did not have the heart to let my husband down. We went out. It is a positive stress; I had a lovely time, but it really had a negative physical impact. Saturday afternoon came. I wanted to stay in bed. I did not have the heart to let my daughter down. The things we did were not of high physical demand; I was just too tired to do anything. I pushed on and had a lovely time with her. I took a nap around 5. I had a terror and woke up to sleep paralysis. I know that if I keep pushing things, I will enter an ugly cycle of terrors. So, I am not willing to let work go, and I am not willing to fail to give my family the time and attention they crave. What can I cut? My house is a disaster and it will just have to stay that way until I feel balanced again. If it gets bad enough, my husband and daughter will pick up my chores. I will not go to the grocery store or plan and prepare meals for the week if I do not feel rested tomorrow. We will make it through the week on sandwiches and fast food. It is far from ideal, but this is the balance that works for me and my family. I simply cannot do everything that I want to do all the time. Trying to do it all when I really do not feel like it invites terrors. I must have sufficient rest.

I would like to note at this point that setting priorities in finding a balance requires full cooperation with the entire family unit. We sit down and talk about what is the most important to us, and we all make an effort to fulfill the most important needs. We all agree on the priorities.

Also, I practice preventative measures. I do everything possible to optimize my sleeping conditions. I have a routine, like a little kid, before going to bed. Once I am in bed, I pray and do something like meditating; this is very pleasant to me. I rarely make it through the prayer before falling asleep. However, the point is to feel peaceful upon falling asleep.

Another aspect of preventative measures is to vent. I think this is why journaling is suggested, and I also feel this is why it is not effective for some people. Life is simply challenging and can be frustrating. This is true for almost everybody. Throw a health problem in there, and really simple things can feel hellish. Yet, I do not want to be a complaining whine bag. Sometimes just getting it out is all that is needed; holding back frustrations leads to negative emotions, which in turn invites terrors. Keeping a journal can be helpful in getting it out, but it provides no recognition or feedback. There are times that I need that recognition or feedback. I am very fortunate to have a great network of family and friends that allow me to vent. I know exactly who to call depending on what I want to vent about and what kind of response I want at the time. If I encounter something that I do not have anybody to share with, I will post in a public rant and rave forum. I get it out, no matter how ridiculous it seems to me at the time.

Also, I pay attention the behavior of those around me, both humans and animals. It is very subtle, but when your body is gearing down, those around you perceive it whether they realize it or not. Their behavior shifts. If I observe these shifts, I know that I am pushing things too hard before the severely negative impacts set in. My boss starts checking on me and sharing motivating news. He hasn't heard much from me that day and wants to make sure everything is ok. The truth is that when I get extremely tired, it takes all of my energy to focus on what I am doing. So, I am not as chipper and sociable. My husband starts to lavish me with praise. In reality, he needs words of affirmation. I am exhausted, so I just don't talk as much. He knows I will reciprocate with gratitude and compliment. My daughter has an amazing understanding and sensitivity to my limits. She does recognize what she is doing. She backs off her demands and does more of the things that she knows are important to me. My dogs become polite and stay closer to me. By polite, I mean that they are careful not to do things that they normally do. I have a herding dog that loves to clip my legs. If I am on the edge of dysfunctional exhaustion, he will not clip me. He becomes very calm and moves very gently. I am always tired, but there are times that it is just impossible. I feel horrible, and I sincerely believe that I am just at a special level of exhaustion. This is a night terror trigger for me.

The night terrors/nightmares are something that we will most likely always face from time to time. The best we can do with any symptom is try our best to minimize it. Addressing it psychologically is certainly not a miracle cure. However, remaining emotionally healthy optimizes anybody's chances of better physical function.

I really do not know what helps the most. It is possible that my methods truly have no impact on the terrors; maybe it is a coincidence and this would be the cycle of my night terrors regardless of my behaviors. I do not believe that is the case; I believe these things help. It may sound loopy and way over-thought, but I battled this problem for a decade with no clue as to why any of it was happening. I did every little thing that I thought might help and I feel it has served me well.

#5 All nightmare long

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Posted 31 October 2008 - 09:06 AM

Thank you everyone for your responses. I appreciate you taking the time to reply. I am presently on a 10-month waiting list to get back in to see my Neurologist to discuss new meds etc (was thinking of trying Zyrem..). Anyhow - in the meantime I have been prescribed sleeping pills (Zopiclone) to help..they seem to "soften" my dreams so I am not so terrified in them.

#6 Damian

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Posted 31 October 2008 - 02:57 PM

I hate the type of terrors that are like they continue like a programme continuing where it left of sometimes. every time I try to go back to sleep after waking, I panic from my deams but found out or me that some nights were better with zyrem and some better without it. Less terrors in all became more vivid. I personally been take of xyrem and are now back to normal terrors/nightmares and mesed up sleep pattern, I find in my naps I take through the day that terrrors are becoming regular thing.

#7 ikon0304

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Posted 01 November 2008 - 08:04 AM

I too suffer from the nightmares, my boyfriend has been beaten up alot by me in the middle of the night. I dont remember them, i just know what he tells me. I also have hallucinations, while sleeping and while awake.( i guess during the day when i have them, im really asleep). when i am under alot of stress..that is when they are the worst. lately, thank goodness, i have had only a few. i take this as a really good sign!! i know that this too shall pass and that again i will go thru it, but for now, i am enjoying a quiet nights sleep ( so is my boyfriend smile.gif))))

#8 hathor

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Posted 04 November 2008 - 08:46 AM

i have awfull nitemares!!! i talk, snore, swear, hit and kick, i think the only thing i dont do is walk!!! i have these weird kind of bad dream that arent quite like other good or bad dreams because i am awake at the same time. these are the ones that really scare me because i can see the room around me and feel everything as it should be but im seeing things as well. this is the only way to describe it. i had one of these last nite and it was awful i was too scared to move or breath. i could see a girl just over the top of my vision who had been killed. another one i had i could see a spot on the wall and if i lost sight of it i was gonna die because the dream was that i was a victorian woman getting stabbed in the back but i could feel the mans hands on my back while i was looking at my room!!! i think these ones are always based around death. apart from these i have normal dreams but they are very vivid and normally have stupid themes. afew weeks ago i had to ask my friend why she had an mp4 player under the stairs. she thought i was nuts and laughed her head of when i told her it must have been a dream!!!! biggrin.gif

#9 Marcianna

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Posted 29 March 2009 - 01:52 AM

Here is where you post the dreams you wish you never had....

"Deep into the darkness peering, long I stood there, wondering, fearing,
doubting, dreaming dreams no mortal ever dared to dream before."

~Edgar Allan Poe



(haha! this is way down here cuz I merged post!)

#10 Irishhh

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Posted 30 March 2009 - 08:43 PM

QUOTE (Marcianna @ Mar 28 2009, 10:52 PM) <{POST_SNAPBACK}>
Here is where you post the dreams you wish you never had....

"Deep into the darkness peering, long I stood there, wondering, fearing,
doubting, dreaming dreams no mortal ever dared to dream before."

~Edgar Allan Poe


Love this thread idea! I will have plenty to talk about, if I can...

#11 jenji

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Posted 30 March 2009 - 09:53 PM

...did you hear the one where i'm in a hot tub on vacation, enjoying myself ten-fold with my lovely mother and then suddenly she doesn't respond to our conversation; to a joke, and so I turn to look; she doesn't respond b/c she floating face down, bloated, blue and dead in the water. have you heard that one?

love that one.

ugh.

jenji

#12 drago

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Posted 30 March 2009 - 10:28 PM

My strategies:
(1) Regardless of what happened last night, no matter how horrible, do not let that make you be afraid of sleep. Whenever I am afraid of my nightmares, they are ten times worse. You have to think of each night as a new, untainted night.

(2) Develop some lucid dreaming techniques, if possible. Sometimes, even before a dream is scary, I know it will turn into a nightmare... even when it starts, sometimes I can wake myself up to get away. This works pretty well for me, except when I can't wake myself up despite trying it can be scary. (One time I kept waking up into more and more dreams!!!)

(3) Stretch/Bath/Relax before you go to bed. I find that when I am relaxed/stretched/tired I tend to have fewer nightmares. Sometimes I end up waking drenched in sweat in the morning - but that is a small price to pay for sleep, eh?

(4) If you remember the dreams/nightmares, either write them down or don't dwell on them. Generally, if I dwell on a nightmare the most horrible bits stick out... otherwise, I slowly forget it.. and by the time I'm in the shower they're gone.

(5) Remind yourself, if possible, during the nightmare, that this is a nightmare, and it will go away.

I know how frustrating it can be to have night terrors/nightmares. I didn't know I had sleep paralysis until I was 16, and by then I thought I was abducted by aliens and constantly under assault by evil spirits! I was afraid to sleep. Now even when I suffer sleep paralysis, I have some tools...

Also, if you have religious/spiritual beliefs, prayer/meditation can really help, especially right before bedtime...

Hope you're well,
drago

#13 sleepless sleeper

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Posted 31 March 2009 - 08:26 PM

Let's add the one of finding my children dead in a creek face down... Definitely, yes, let's not forget that one.

#14 Marcianna

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Posted 31 March 2009 - 11:38 PM

QUOTE (sleepless sleeper @ Apr 1 2009, 01:26 AM) <{POST_SNAPBACK}>
Let's add the one of finding my children dead in a creek face down... Definitely, yes, let's not forget that one.


Oh God you told me about that... The idea is absolutely nauseating! How HORRIBLE!!!!!!!

#15 jenji

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Posted 01 April 2009 - 12:35 AM

What's with the water and the bodies? What's wrong with us?

Oh right. N.

jenji

#16 dogdreams

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Posted 01 April 2009 - 01:09 AM

How about the one where someone breaks into the house, shoots my son and my boyfriend in front of me, and the pets. And I'm awake when I'm 'dreaming' this but can't stop it and see it in graphic detail and now I can't sleep and have to read Harry Potter all night just to feel somewhat normal again. Yeah, that dream. Fun.

And if I DON'T get up and read Harry Potter, I have the 'dream' where I'm captured and tortured in a foreign country and they decide to torture me by putting my son's dead body in my cell with me and I have to live with it for days. Still awake here...

And I thought the 'dreams' where a cruise ship crashed through my dorm room wall were bad. Pffft. dry.gif

If anyone questions my N diagnosis ever again, would you smack them upside the head for me? And play them the video tapes from my head? Cuz this is what happens BEFORE I fall asleep. The nightmares that come afterwards can be worse. Thankfully if I do get to sleep, my dreams are better than real life...another reason not to get up in the morning.

I'm sure if JK Rowling knew why I was reading her books, she'd be horrified.

#17 Henry G

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Posted 01 April 2009 - 05:14 AM

Just woke up from a nightmare.

A stupid Brazilian woman formatted my computer hard drive without asking.

I am still angry !!!

#18 sleepless sleeper

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Posted 01 April 2009 - 01:58 PM

QUOTE (Henry G @ Apr 1 2009, 04:14 AM) <{POST_SNAPBACK}>
Just woke up from a nightmare.

A stupid Brazilian woman formatted my computer hard drive without asking.

I am still angry !!!



Henry, you are such a gentleman, so tell her to call me. If I happen to be having a bad dream at the time, then I'll take care of it.

#19 sleepless sleeper

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Posted 01 April 2009 - 01:59 PM

QUOTE (dogdreams @ Apr 1 2009, 12:09 AM) <{POST_SNAPBACK}>
How about the one where someone breaks into the house, shoots my son and my boyfriend in front of me, and the pets. And I'm awake when I'm 'dreaming' this but can't stop it and see it in graphic detail and now I can't sleep and have to read Harry Potter all night just to feel somewhat normal again. Yeah, that dream. Fun.

And if I DON'T get up and read Harry Potter, I have the 'dream' where I'm captured and tortured in a foreign country and they decide to torture me by putting my son's dead body in my cell with me and I have to live with it for days. Still awake here...

And I thought the 'dreams' where a cruise ship crashed through my dorm room wall were bad. Pffft. dry.gif

If anyone questions my N diagnosis ever again, would you smack them upside the head for me? And play them the video tapes from my head? Cuz this is what happens BEFORE I fall asleep. The nightmares that come afterwards can be worse. Thankfully if I do get to sleep, my dreams are better than real life...another reason not to get up in the morning.

I'm sure if JK Rowling knew why I was reading her books, she'd be horrified.


Bad. Very bad.

#20 sleepless sleeper

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Posted 01 April 2009 - 02:00 PM

QUOTE (jenji @ Mar 31 2009, 11:35 PM) <{POST_SNAPBACK}>
What's with the water and the bodies? What's wrong with us?

Oh right. N.

jenji


Water is supposed to be healing... sad.gif