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JennaGlatzer
09-12-2005, 11:44 AM
I'm seeking personal experiences from those who've had any of the major common sleep disorders (insomnia, obstructive sleep apnea, restless legs syndrome, narcolepsy) and are now better. I'll be open to this for at least a month, but of course, the sooner I hear from you, the better. This is for a book, and I can either use your name or a pseudonym, whichever you prefer.

I'm looking for a fairly detailed, "writerly" description of what you went through and what helped you get better. I'm open to either having you write up your own description, or conducting interviews.

Thanks!

smallthunder
09-12-2005, 05:01 PM
Hi, Jenna --

I suffered from Restless Leg Syndrome for a while -- it was a side-effect of anti-depressant medication. It went away once we adjusted the meds. Would my experience, brief as it is, be of any use to you?

BradyH1861
09-12-2005, 09:31 PM
Jenna,

I am the world's worst insomniac. I can't take any sleep aids because of the job, so I pretty much suffer through it. I have all the late night infomercials memorized.

Brady H.

rtilryarms
09-13-2005, 05:04 AM
Interestingly, I was a fitful insomniac for years. I quit drinking beer and within 2 days I was able to sleep for the first time since I was a preteen. When I started drinking beer again I became restless again. Now i only drink in 3 months of the year and I cannot sleep. When I don't drink, I stay sleepy all day and it is hard to wake up in the mornings.

I am very, very strange. My next drink is on New Years eve.

Shwebb
09-13-2005, 04:11 PM
Jenna,

I was officially diagnosed w/ RLS and PLM (Periodic Limb Movement) this past April after having a sleep study. My neurologist recommended I take Sinemet until I reminded him I was pregnant. They told me my sleep was interrupted almost 50 times that night by my legs--enough to kick off the electrodes, and the technician had to replace them twice.

The RLS was really bad when I was put on amytriptyline--as I was drifting off to sleep, I would shake my legs so hard it looked like I was chasing rabbits! Going off the med helped alleviate most of that. My current remedy is to get my husband to give me a back rub, focusing on my low back. That does actually relieve a lot of the "crawly, got-to-shake-my-legs" sensation.

I don't know if any of this info helps or not, but you are welcome to ask me questions.

three seven
09-13-2005, 11:59 PM
I used to have truly terrible trouble sleeping. Then about 4 years ago I mastered a simple meditative exercise and I've basically been asleep ever since. I'll happily tell you all about it if you're interested.

JennaGlatzer
09-14-2005, 02:48 AM
Thanks, folks!

Shwebb, I'm working on the RLS/PLMD chapter right now and I just learned yesterday that pregnancy is highly associated with RLS (sometimes because of low folate or iron levels). The research I read says it usually resolves within about a month after delivery. Are you still pregnant? (Edit: Just looked at your profile and see you're due in Dec. Hey, that's good news! There's hope! :) )

Smallthunder, yes, brief descriptions are fine.

Here's the basic info I'm looking for in any descriptions:

What did you go through? (How often, how did it feel, how did it disrupt your life, did it leave you feeling sleepy the next day, etc.?)

How old were you when the problem started?

Did it disturb your bed partner?

Did you seek help, and if so, was the doctor helpful?

How did you overcome the problem? (Lifestyle changes, medications, etc.) Is it completely resolved now?

You can PM me, e-mail me, or share it here, whatever you like. Thanks!

Shwebb
09-14-2005, 04:16 AM
[QUOTE=JennaGlatzer]Thanks, folks!

Shwebb, I'm working on the RLS/PLMD chapter right now and I just learned yesterday that pregnancy is highly associated with RLS (sometimes because of low folate or iron levels). The research I read says it usually resolves within about a month after delivery. Are you still pregnant? (Edit: Just looked at your profile and see you're due in Dec. Hey, that's good news! There's hope! :) )QUOTE]

Jenna,

My RLS and PML started when I was put on the Elavil, and it mostly went away when I stopped taking the med. Ironically Elavil is not just for depression; they prescribe it for fibromyalgia now--and while it does help you sleep, I'd say the quality of sleep from the RLS and PLM wasn't very good. Ironic if you look at fibro from one theory that fibro is due to lack of stages 3 and 4 sleep.

When I had my sleep study done in April, I was told that the PLM did interrupt my sleep--but not to the point that I remembered; my brainwaves during the study clued them in.

My PLM does disturb my husband. He says that I spoon up against him and "jackhammer" him with both my knees--rapidly and repeatedly, often through the night.

I often feel that my energy level is really low. I do best if I can fit in a nap--I have two preschool age kids, and I make them at least have "quiet time" so I can get a snooze. However, I have been diagnosed w/ fibro, and I'm pregnant, in addition to RLS and PLM--so, take your pick! (I might be wrong, but I'm thinking fibro has also been linked to the two, as well. . . okay, I just peaked; found a website w/ that sort of info on it; here's the link: http://www.fmnetnews.com/pages/overlaps.html. And if you ever do a story on fibro, I'll be glad to give you my two cents.)

And since I'm pregnant, I can't take the Sinemet.

It is interesting that you brought up the folate and iron. My folate is/was normal-to-high; however, I've been having problems getting my iron stores up. Since taking the iron over a number of months, my husband did say he hasn't been "jackhammered" lately. It doesn't necessarily mean I'm not having the PLM, but that it isn't so bad.

When the RLS does get pretty bad and shaking my legs don't help, I will get my husband to massage my low back and sometimes my legs. Having him do this really does help. I notice I wake up the next morning a bit more refreshed. (I just hate asking him all the time!) The RLS feels like my legs are jittery--you know how it feels when you feel fidgety, so you wiggle a foot or cross your leg over the other and shake it up and down? Turn the intensity up to max, just when you're mind and body are exhausted.

Oh, yeah, sometimes visualization helps for me. I imagine I'm traveling right within the muscles of my legs and giving them a massage at the cellular level and increasing the blood flow, encouraging the muscles to relax. It may sound silly, but it seems to work for me. (I used this trick when I was in labor w/ my second child.)

Jenna, hope you can use this info. If you have any other questions or would like me to elaborate on something, let me know.

Melanie Furlong
09-14-2005, 08:35 PM
Hi Jenna,
I suffer from the sleep disorder bruxism - I grind my teeth in the night. I've been doing this since I was a child. Now, at 34, the muscles on one side of my jaw are frequently sore, especially when I wake up. I was given a bite plate by my dentist during my university years, when the grinding got worse. It was never effective in stopping or curbing the bruxism, but it protected my teeth. After quite a lot of complaining to the dentist, I was finally referred to a physiotherapist who specializes in TMJ. I was given exercises to do daily, taught the proper position for my tongue (it should held at the roof of the mouth),told to go to bed earlier and do only restful activites before bed. No talking on the phone after 8 p.m., absolutely no caffeine, regular exercise and I have to turn my computer off at 9:00 p.m. every night. With two kids and freelance writing business, setting these rules for myself really helped. I have less pain in my jaw, but I do still grind my teeth when the deadlines get crazy.

Sunrise2Fantasy
09-16-2005, 06:28 AM
I used to have insomnia for a few years.
The ways I tried to overcome it were;
~reading until I became tired
~tried not thinking about ghosts and scary things
~listening to cars pass by outside {especially at my dads house}
~'sleepytime' tea {doesn't work, trust me}
~writing
~listening to music/watching tv
~excersizes; especially tensing up your whole body then untensing it slowly
~when someone had to leave at night {mostly my dad when he had to go to the restaurant early in the morning} I was able to sleep better sometimes because I knew someone else was up.

the one that seemed to work best for me was to have a nightlight on {colored one though, so the glow wasnt annoying} and some sort of noise. I also played movies in my head which also helped give me inspiration for a new idea or added idea to a story.

What started my insomnia was my big imagination. I've kind of always believed in ghosts and stuff, and that got my overreactive immagination working to think that there was somethign to be scared about at night. Sometimes I was just uncomfortable or too distracted to sleep. Other times I felt lonely and depressed. I still go through it sometimes, but not often.
Hope that helps.

smallthunder
09-17-2005, 09:40 AM
Hi, Jenna --

As I mentioned earlier, my experiences with RLS were as a side-effect of anti-depressant medication.

The first time (upon reflection, I realized I went through this twice) occured when I was first put on meds -- the tricyclic imipramine. Once or twice, as I was drifting off to sleep, my legs would suddenly kick out. Since I was new to meds -- just diagnosed with clinical depression -- I didn't realize there was a connection. It happened so rarely, and the only other side-effect I had was a very slight trembling of the fingers of my right hand, that I didn't even think to discuss the leg weirdness with the doctor.

I took imipramine for a year or so, and was fine. When I had another serious bout of depression years later, a new doctor was about to put me back on imipramine -- but first asked me if I had had any problems the first time. He went over a list of possible side-effects, with RLS being one of them. That's when I recognized what had happened earlier. Even though it had only happened once or twice, the doctor said there was no need to be bothered by it at all -- there were now better anti-depressants available with fewer possible side-effects (i.e. the SSRIs). So, I went on Zoloft, and had no problems.

Years later, I stupidly went off my meds, and when we tried to pull me out of the resulting depression with Zoloft, discovered it no longer was effective for me at any dosage. So, I was switched to Paxil -- and started having a serious problem with RLS.

It was like having convulsions! I could be deep asleep, and suddenly awakened by a jolt of my legs. ARGH. I thought many times that "Restless Legs Syndrom" was a misnomer, for it just suggested that your legs were in the mood for a nice stroll in the park at inappropriate times. It in no way conveyed the violence of the (re)action. I would have called it something along the lines of "Friggen Legs Flipping Out Syndrome" ...

Fortunately, changes in both the dosage and time in taking the Paxil eventually took care of the RLS problem.

Hope this info is of some use to you --

black winged fighter
09-25-2005, 07:31 PM
I had insomnia for about nine months during middle school. It happened every night, and I just couldn't fall asleep, no matter how still I lay, how tired I was... I only got rest when at about three or four most mornings I'd black out from exhaustion. I went through most of 6th and half of 7th grade like that.
Part of the problem was an over-active imagination, and also worrying about everything in general. I had just moved, had few friends, and lost of worries and probably a little depression. Also, I think the cause could have been hormonal in nature, since the problem eventually faded away of its own accord.
I never took meds - I won't go near 'em. And I never went to the doctor, 'cause I was afraid he'd prescribe something. When it got too bad, I'd take a Benadryll for the drowsy effect, but I didn't do that often, since I didn't want to form a habit.
What I did try was:
-listening to music
-reading
-writing
-blocking thoughts
-meditating
These were all only mildly successful, since I kept worrying and growing new night-time fears. If a light was on in the house, and someone else was up, the implied added safety helped me sleep more soundly and for longer.
I still have worries that keep me awake for an hour or so each night, and a light in the house helps. But I now get atleast six hours of sleep a night, if not seven or more. Lately, through working with my dreams (PM for explanation) I have been able to have totally relaxed sleep and pre-sleep phases.
Hope this helps.

FolkloreFanatic
09-29-2005, 10:15 PM
I have full-blown narcolepsy with cataplexy, but I'm not fully cured yet, and I'm writing my own book about it (fiction). :)

vmtwriter
09-29-2005, 10:27 PM
I have sleep apnea and use a cpap machine to keep breathing at night. I don't know how long I've had it but it was discovered a couple of years ago or so. I went to a sleep study and wrote a 2-part essay on my experience.

Sometimes I'm too tired to put on my cpap headgear when I go to bed and I can tell that I didn't use it the next day. I'm lethargic and yawning throughout the day.

Not using my cpap my husband doesn't sleep as well either, because my constant gasping for breath wakes him up. He prefers that I use my cpap so that he can get a restful night sleep.

I'm definitely more alert and awake after using my cpap.

I'm available if you'd like to ask more questions about sleep apnea or the use of a cpap machine. You can contact me at vmtwriter@vickimtaylor.com