desperate to managing my sleep cycle. any one want to join?

[Anonymous]

ooo just remembered that i have a dentist appointment tomorrow to finish up my nightguard mold. I’ve been complaining of jaw pain for years because I am a jaw clencher at night. I finally gave in to the dentist last week because I went through a week long paranoia that all my teeth were going to fall out because they were sore. I get worse jaw clenching when I have insomnia.

REPORT ABUSE

[Anonymous]

sugargremlin, good luck in speaking with your doctor. Save the info on sleep research for a sleep specialist, my mom’s doctor told me 20 years ago that they spent all of 10 minutes in medical school on sleep disorders, so don’t expect your general physician to know a lot about it or even how to diagnose it. I was mis-diagnosed 20 years ago and every non-knowledgeable doc has missed the boat on it since then. It was a sleep specialist who realized it when we talked at length during my consultation and he asked the RIGHT questions.

You can definitely drive yourself crazy trying to figure out what you have – there are apparently 80 different sleep disorders. But a sleep specialist will be able to filter down to your specific conditions, get the data to back it up, and provide a proper treatment plan for your doctor. That’s why I paid $$$ to see an ADD specialist and went to a top sleep clinic. My family doc will not be able to mess around experimenting since the treatment plan will be very specific.

REPORT ABUSE

[Anonymous]

I have been good about completing my sleep graph…well at least with filling in the data…. it looks like a jagged mountain range >_<. I am so frustrated that I have made little progress. I am sure my new boyfriend who works second shift is less than helpful. He is trying to be supportive and force me to bed on time, but I am suspecting that he has less than awesome attention skills himself and he is getting distracted from his mission of helping by me getting distracted. seriously not helpful. I will be walking to the bathroom and he will bring up some conversation which I’ll get involved forgetting what I was doing. Then at times, he will herd me into the bathroom then he will engage in a conversation I initate forgetting what he was doing. We have talked about it and I have a suspicion that he may be as incapable as I am in getting to bed at decent times. We have been friends for awhile and he has a reputation for staying up all night due to getting distracted by stuff and insomniac traits….. I certainly don’t have the will to keep us both on task! or wouldn’t be having this problem! so I suppose it is either figure out our strongest will power and attentional skills and try and add them up into a normal human being. otherwise, i need to decrease his visits.

my insomnia streak seems to have passed for the most part and I am left with close to my usual subpar sleep, which is functional for me. however, I am still having trouble focusing at work..so back to where I was right after I began the meds. I think my lack of sleep is working against the meds and I would focus better with more sleep. I do not want a higher dose of medication. I am finally figuring out the social side effects from it ie. being a little more serious and having a little less fun..so I stopped taking it if I truly have a day in which I have nothing specific to get done.

I am still definitely wanting to get a sleep study. When I find myself unfocused on other things, I get that ansy feeling and get ready to write my doc a letter to get the referral NOW so I can start the coordination work.. rather than wait for my appointment in a month. lol. still may do that. I hate waiting lol.

REPORT ABUSE

[Anonymous]

Ugh. Another insomnia streak. I think i am going to have to come off the meds for a bit to make sure that they are not part of the problem. I have had insomnia issues my whole life, but this is some of the worst and im really feeling it. Bleh. Frustrating.

REPORT ABUSE

[Anonymous]

See your doc, sugargremlin. You mentioned that you were driving, that’s dangerous. I have stopped driving per my doc’s orders. It’s hard to give up that freedom but I got used to it after about a week.

REPORT ABUSE

[Anonymous]

I have an appointment with her in a month and have so many questions. I talked to her yesterday on the phone in distress about the insomnia because it is really really bad. I spent last week with an average of 4 hours of sleep a night. I am a 8-9 hours of sleep kind of woman because my quality of sleep is horrible. Even if I am not waking up a bunch of times, I wake up and my sheets are falling off the bed and my jaw hurts from clenching…which is why I am asking for a sleep study! I figure that maybe 8 hours is worth about 6 of a normal person.

If I had let that go much longer, I would have switched to bipolar hypomania in just a few days. I already felt it yesterday. so much inner anxiety and obsessiveness. One of my hypomanic (rarely have true blue mania) signs is that I look like I have some significant OCD. I get very anxious and find myself obsessed on details to the point in which I cannot drag myself away in a very unhealthy manner. The ADD obsessive can’t drag myself away is very time-wasting and leads to some horrible procrastination, but does not compromise my physical and mental health. I just pretty much hyperfocus and procrastinate then realize I have to get something done and need to spend all day. but always more than happy to put everything away to do something else and finish it tomorrow lol. Also, I get irritable and disinhibited. I got angry at my hoarder neighbor and physically threw her crap back on her porch (nothing breakable). ADD irritable is mostly just saying something that I should not or getting impatient or snippy, nothing hostile or physical. definitely nothing I could get arrested for! So, I am getting some worried looks at work as my 11-12 hour days have become 13-14 hours days as I am too obsessed to leave and I look really anxious. People are telling me to go home with worried looks and I can’t. physically and mentally cannot. have to finish have to finish have to finish. kind of scary really.

I think I need to find a more accessible doctor. I’ve been trying to call her in distress for a month with this sleep issue. I wanted to nip it in the bud because I was afraid that I was going to get manic and then not be able to take these meds anymore. Twice, she has told me that she is going to call in more sleep meds to the pharmacy, then I go and there is nothing. I was supposed to get some seroquel yesterday. last ditch effort on that one. nothing! and her office only takes calls on wednesday. and she is only in the office on weds and fri so I need to take work PTO to get there. I’ve been calling her on her cell phone in which makes me feel really intrusive. Yesterday, I ended up crushing and dissolving a Seroquel XR sample from a year ago in water (XR not good for sleeping) in total desperation. made me feel like a fricken addict, even though seroquel is not an addictive drug. I almost puked after drinking that mixture. So max dose ambien + crushed seroquel XR + melatonin + absolute mental and physical exhaustion from a week of insomnia plus 3 14 hour days at work= grand total of 6.5 hours of sleep >_<. I was seriously hoping for 10hr!

so I need to clear my system of the ADD meds. Right now I am soooooooooooo frustrated.. I can’t concentrate!!!!!!! dammmmmittttttttttttttttttttt I mean this isn’t different from my life pattern, but I got used to concentrating. Since June, I have been able to accomplish daily tasks and then enjoy the end of my day doing something recreational or getting exercise.. now I am going to spend the entire day doing this school project and do nothing fun this evening. because I can’t concentrate at all. I can’t even think. I am no longer used to just staring at something for awhile and accomplishing nothing. I mean yes I always get stuff done, but it was nice not to waste endless days of my life.

and no dopamine, the driving part is now concerning. The ADD meds prevent those microsleeps while driving. I am not safe on the road early in the morning without them. So much that I plan on taking a short acting dexedrine or maybe half of one. I am also not safe on the 2 hour drive I need to do tomorrow. Before the meds, I downed a bunch of coffee throughout the ride, then pull off the side of the road for 20 minutes halfway through. When I had an insomnia streak in May, I had to go without caffeine and had to make three 30 min stops along the road. a 1 hr and 40 min drive= 3 hrs. So I absolutely need some stimulant for the road, or it is dangerous. So I will probably take a short acting dexedrine and hope it is good at leaving my system and dexedrine is so much more effective than caffeine and without caffeine’s nasty side effects.

ack….so frustrated. can’t get to my project.. have 4 sticks of gum in my mouth…. with ADD meds, I could focus. and I wouldn’t be killing my jaw and stomach with compulsive gum chewing. I would focus, sit still, not compulsively chew the gum, and then get my crap done and have a fun evening.

this could have been prevented if I hadn’t have had this month of on and off insomnia.

I guess I’ll be crushing Seroquel XR and getting nothing done until I can call my doc on her personal phone on Monday

*breaths*

thanks for the vent.

REPORT ABUSE

[Anonymous]

sugargremlin, the danger part for driving is not when we feel we’re sleepy, it’s the times we close our eyes and don’t know it. That’s very scary. It happens to me during the daytime, out of control, and I can’t be sure it won’t happen when I’m driving. If you don’t have someone to drive you, you should really not go. Is it worth it to have another accident or to hurt someone else?

I’ve been waiting since April when I was at the point you were at, very agitated, sleep very disturbed, majorly so and dealing with non-resolved grief. When I saw the sleep specialist for a consult earlier in the month, he instantly diagnosed narcolepsy and got me in for an urgent sleep study and an urgent followup (urgent meant same week for study, 3 weeks for followup since they have to analyse the results and the doc has to read it). But driving was definitely a no-no. Still is, even though my husband twisted his ankle and is off his feet for a few days.

I hope your doc responds quickly on Monday. Be safe in the meantime.

REPORT ABUSE

[Anonymous]

thank you for replying no dopamine

My issue in the morning, I think it is the sleep drunk. I literally cannot wake up and have a really hard time keeping my eyes open and head bob. You know, I should probably never do that again. I just didn’t think of how dangerous that is. I used to drive. One time I didn’t notice a bus coming right for me (ie. bus driver error as he/she was about to make a left into me). I noticed last millisecond and had to make a hard right into another street giving the bus enough time to hard break (luckily it was around 6am and no one was there. thank you adrenaline! ugh that totally would have killed me as I didn’t have side airbags, in a compact car, and the bus was ready to T-bone me. I hate driving. Driving has already given me a titanium rod in my hip and a history of two car totalling at-fault accidents. and I’m only 27 years old. will probably be my death. Long drives more than 40 miles is actual microsleeps in that it is difficult to keep my eyes open, then I head bob.

I did do some research into narcolepsy inspired by your posts and I definitely do not meet the criteria. I think I have a combination of poor sleep quality (all the time, but worse when I need to wake up early, probably a periodic limb movement.. my mom has this), probably some circadian rhythm abnormality (why I only headbob in early morning drives. i think my mom has something similar), and ADD attention fatigue. I have had zero head-bobbing and driving inattention issues since the meds. wahhhhhhh I want to stay on them! The answer is probably what I already do. sleep meds+ ADD meds. (the bipolar meds are an all year obvious of course!) I just need to figure out a way to deal with ADD med side effects of insomnia. or perhaps, I need a more accessible doctor who can be available during fall and spring season changes when I tend to switch (ie. require more sleep meds..is a regular pattern as I needed seroquel and did take more than max ambien for a week last year). a lot of people with ADHD are misdiagnosed bipolar, but unfortunately I’m pretty sure I have the real deal. I think the switch is related to the upcoming season change, but the ADD meds are aggravating it. I wasn’t having these increasing insomnia issues when I started the meds in June.

I did do some work on my project, but had to take a break after an hour. Huge difference of on meds vs off. attention fatigue. I’m not being lazy, i got into the zone, but after an hour..I’m tired. I think I’m going to take a shower, then start again.

REPORT ABUSE

[Anonymous]

I can’t find any data on sleep drunkenness, but this wikipedia article talks about bipolar as being one of the diseases that sleep deprivation may be linked with. http://en.wikipedia.org/wiki/Sleep_deprivation – here’s some excerpts to save you time.

“Chronically sleep-deprived people, however, continue to rate themselves considerably less impaired than totally sleep-deprived participants.[30] Since people usually evaluate their capability on tasks like driving subjectively, their evaluations may lead them to the false conclusion that they are able to perform tasks that require constant attention when their abilities are in fact impaired. …

… The dangers of sleep deprivation are apparent on the road; the American Academy of Sleep Medicine (AASM) reports that one in every five serious motor vehicle injuries is related to driver fatigue, with 80,000 drivers falling asleep behind the wheel every day and 250,000 accidents every year related to sleep …

… The National Sleep Foundation identifies several warning signs that a driver is dangerously fatigued, including rolling down the window, turning up the radio, trouble keeping eyes open, head-nodding, drifting out of the lane, and daydreaming. At particular risk are lone drivers between midnight and 6 a.m.”

I used to do this, roll down the window, turn up the radio, trouble keeping eyes open, slapping myself silly in the face to experience something other than fatigue, etc. When I told the sleep specialist this during my consultation his eyes really bugged out! 😯 that’s when I realized it was dangerous. I really honestly thought I was in control of it.

The article goes on to talk about sleep deprivation as a form of torture that has been used by governments around the world. That, I find horrifying, knowing how I (and you) have suffered from it.

REPORT ABUSE

[Anonymous]

By the way, the reason I was “talked out of having narcolepsy” 20 years ago was that I didn’t meet all of the criteria at the time, I didn’t experience cataplexy. But I just didn’t know it could be subtle. At my consultation I described how my hands feel in the morning, as if they haven’t woken up yet, I have to be really careful handling things in the kitchen because I tend to drop them in the morning. I don’t use a coffee machine anymore because I would break the glass carafes. And I’m always dropping spoons and mugs.

But the doc did say that the experiment I did taking my husband’s ritalin that gave me a good night’s sleep consistently was proof for him, along with the other symptoms I have. So don’t rule anything out.

It really sounds like your situation is quite urgent and I would treat it that way, if your doc knew that you were struggling to stay awake driving they might take you off the road but at least you would be taken more seriously and hopefully urgently booked for a sleep study and followup.

REPORT ABUSE

[Anonymous]

I don’t think that I have narcolepsy due to my difficulty falling asleep in any setting and no cataplexy. I only become lethargic and tired in the morning or when I am not stimulated enough. I do drop objects frequently, but I think it is because I forget that I am holding them! I can avoid dropping objects if I concentrate that I am holding things (which I always do with something that can break and never drop things when I am concentrating. The only time I ever head-nod is while driving and during continuous school lecture if I am not actively doing anything such as note taking, answering questions, or playing with little toys. Otherwise, I am completely incapable of taking naps. I just lay there with my eyes closed no matter how tired I am until I just get frustrated and give up. Perhaps, due to my 4 straight years of taking sleep medication and becoming physiologically dependent (not psychological dependent) to them.

I guess I have never really talked to my doctor about my driving and morning arousal problems. Usually my life is so chaotic that all the time is spent assessing and treating my fluctuating moods (except I complained nearly every visit that I couldn’t concentrate). When it was calm, I went 4-6 months without an appointment. When I got this job, it was the first time, we had delved into non-mood related issues such as ADD. Only because it became an emergency that I was unable to do my job! that maybe it wasn’t normal for me to spend days completing assignments which took others hours or to be stressed out about projects weeks in advance and only be able to focus on them a week before deadline. that maybe part of my anxiety was the inability to filter out thoughts and ideas and complete things. I always attributed this to my moods, but throughout my life pattern realized that this was 24/7 365days, just got worse during mood swings.

Anyhow, I think I will write a letter or something. My mood is going south, so I am sure that will be the only discussion topic in a month >_<.

THANK YOU so much for your help today. inspired by you, I am going to write my doctor a letter about my sleep concerns and fiddle with that web blocker so I do not stay up all night today doing mindless web surfing of course, after I finish this project…*whistles and looks around*

REPORT ABUSE

[Anonymous]

You’re welcome, sugargremlin. I also wrote a long letter about my symptoms, both for the ADD doc and the sleep doc, in my own words, what was going on and had been going on for a long time. They both said it was helpful to them.

I can’t nap either. Can’t sleep when I want to, and I fall asleep when I don’t want to.

Not saying you have narcolepsy, I don’t know what it could be, but whatever it is, it’s impairing you. And you deserve a better quality of life. Let us know what the doc says.

REPORT ABUSE

[resipsa]

Nice discussions on the sleep or lack thereof. Sounds like we all have similar experience. I have been trying very hard to get to bed by 9 pm. I was actually successful twice this week, only to wake up about 1 am. On the bright side the dogs got their baths, the dishes are done and the floors are mopped. Whatever works.

REPORT ABUSE

[Anonymous]

I recently started taking Adderal XR and I am wondering why I’m not tired. I only slept 4 hours last night, woke up at 1:30 am and was done, and I’m wide awake with no nap this afternoon. This is downright amazing to me. I work very early in the AM and unmedicated I’m always tired and usually take at least an hour nap every afternoon. The nap has always been a problem because I had to have it, but it made me awake too late in the evening and the cycle kept up. I’d catch up on my days off by sleeping past 7 am. (this is really sleeping in for me) I don’t know if my sleep patterns will get better after adjusting some to the meds, but I certainly hope so.

REPORT ABUSE

[Anonymous]

I’m one of the no sleep types. I was that way as a baby, a little kid, teen-ager and even now as an adult. I consider going to be by midnight as an early night. Normal bedtime is between 1 and 2 am, closer to 2 am. I get up at 5:30 everyday to get ready for work, leave the house by 7:00 (I HAVE to read the morning paper first which is why it takes me so long to get out the door) and am at work until at least 6:00 every night and then have an hour’s drive back home.

My doctor has given me meds to take to help me sleep and I have tried them but they make me feel groggy in the morning. Yeck! I hated that dopey feeling so I don’t bother with taking them. Going to bed earlier than I do just seems to give me hours of lying in bed awake. Boring. I’d rather be up and doing something, so that’s what I do.

My only worry is that having so little sleep is probably not a good thing for my body. Any doctor I’ve ever seen has said sleep is so important to our health. I feel very guilty about staying up until 2 most nights. When I’m off work for the summer, I’m up even later. Sometimes, I think if I could get rid of the guilt I feel about being up all night that I would never go to bed. 😳

My husband gave up years ago with trying to get me to go to bed earlier. The fact that he gets up between 4 and 4:30 is what finally drives me to bed. I don’t want him to find out yet again that I’ve been up all night once again. My mom used to tell me when I was just a kid that I always burned the candle at both ends. I was never sure what it meant until I was older. Yes, that’s me!

Oh!! One other thing that I did mean to mention. If I really decide that I WANT to go to bed early I CAN do it. I just tell myself to go and do it….NOW! We are our own worse enemies. We make a lot of excuses as to why we can’t do something. If we really, really, really want to do something we ADDers find a way and do it.

Not getting to bed earlier than some of us do is just because we continue to let ourselves believe that we’re unable to break away from an activity. We’re hyperfocussing! It’s impossible! We can’t break that spell!

It’s hard to do but we can do it if we really want to do so. Unfortunately, as ADDers, I think a lot of us do the ‘pull the wool over our eyes’ routine about being ‘unable’ to break the hyperfocus to move on to that unwanted task- one that goes something like’ going to bed’. As ADDers, I think most of us can do a whole lot more than the rest of the world!

REPORT ABUSE

[Author]

Posts