NF and Insomnia

Living with NF can be challenging and many of our BB users have offered their support, guidance and advice on various ways to cope with the emotional, spiritual and physical burdens that NF can sometimes cause.

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NF and Insomnia

Postby karla_NF1 » Sun Jan 09, 2011 1:26 am

This discussion came up casually in the NF Chat room.

Is there a link between trouble sleeping (falling asleep, staying asleep, etc.) and NF (both types 1 & 2) ?

Just about everyone in the room at the time answered that they'd experienced difficulty with sleep. I'd like to know if this is common, because I have had trouble falling asleep for just about as long as I can remember, but had never attributed it to NF.

I don't know if it is something that warrants research, but I would like to know if the problem is prevalent among those of us with NF.

So, if you're one of those with problems sleeping, discuss here.
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Re: NF and Insomnia

Postby Sha-nay-nay » Tue Jan 11, 2011 7:05 pm

I have a horrible time staying asleep. Sometimes getting to sleep as well. I have researched somewhat on my own in the past and came across an article that mentions NF and circadian rhythm. If you type both in a Google search, you should be able to easily find the article. (It is an older article - but I don't think it should be completely dismissed. I have also tried taking L-tryptaphan with some success....You can also try 5-htp or melatonin.....they are all related but...so I would not take them together.... try researching them to see which might work best for you. Good Luck
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Re: NF and Insomnia

Postby newbie » Mon Jan 24, 2011 5:43 pm

I have heard that Insomnia and NF are realated. My sons gentic dr. asks how he is sleeping, because he says the two are related. My son sleeps better then me though.
Mom to David (NF1), mulit Cals, left leg tibal bowing, learning disablites, speech delays and great son and brother to Vincent (also a great kid.)
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Re: NF and Insomnia

Postby icarrymycross » Wed Aug 01, 2012 10:07 am

I have NF 1 . I have sleep apnea but not sure if this goes along with NF1. I do have the CPAP machine but still have many sleepless nights . It is worse just before and during my menstrual cycle.
There are times I sleep but do not go into all my realms of sleep . There are 5 realms of sleep . 1& 2 is were you dream . Realms 4 & 5 is were you get your rest . I hardly ever go into relms 4 & 5.
I stay tired , have brain fog most the time. I have no muscles strength and it is very hard for me to excersie . My heart at times beats rapidly for no reason . I have sharp quick headaches that just last a few seconds or mintues the front of my forehead . I got blurred vision and faint headed . I have lower backaches at times more so in my shoulders and neck . I feel sore like I have worked out much of the time I have shortness of breath and at times I feel like I can't get enough oxgen to my lungs . There are times if feels so if someone it sticking me with needles . There is no certian places or time it can happen but it can be my nose next my little toe then my hip or any part of my body . As I get older and older I develop more & move tumors . I did at one time live with chronic pain for almost 2 yrs . It never went away and nothing helped the pain . It was a 24/7 pain . I had read some were that the tumors can grow on certain nerves to cause this never ending pain . Althought I am pain free today . I also forget how to spell words I know how to spell or get words mixed up when spelling them the spelling maybe close or have the same sound such as physical /physican. I have shared a good bit probably could more but what I have shared I hope it helps someone in some way.
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Re: NF and Insomnia

Postby sweetd » Thu Jan 17, 2013 1:37 pm

It's most likely some type of link i've always had problems sleeping even when I was like 4 years old I would just lay in bed for hours until I would finally fall asleep. Now I usually just between 4 and 5 hours a night not much can be done about it sleeping pills only work for a few hours then I wake up once they wear off. I've kind of always been like this so i'm just used to it now I can be really tired but I just lay down in bed and nothing usually happens. I've basically accepted it that it's out of my control.
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