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

[Anonymous]

yay responses!!!!… I am still chugging along with sleep graph. the one and only accomplishment I have made is keeping up with updating sleep graph lol. still kind of dismal. some changes: fewer drastic shifts. so equaled out no extra sleep at all.. just the lines are a little less jagged. It did not help when I got worse and worse insomnia. I feel like ()#)@@$ when I don’t sleep!!! I’m only an energizer bunny when I should be in bed or I am over-stimulated.

zsazsa..i know it sounds ridiculous..but i seriously have been unable to change my bedtimes. completely astounds me really because I’ve conquered a lot in life. part of the problem is probably the new bf who works second shift and has a similar night owl distracted personality. I issued an ultimatum to him last week that he either helps get me to sleep on time or doesn’t come over on the weekdays. so maybe I’ll finally see some sleep graph changes? lol.

sleep makes such a huge difference. I got awesome sleep friday night- monday night… It felt so good. i dedicate that sleep to newly motivated bf and seroquel…. now I feel wrecked after 3 hours of sleep and a 12 hour stressful day at work. blarg. and I was good and was in bed by midnight… just woke up at 3:30am with restless leg >_<.

better get the sleep study referrals ready for my doc to sign next week.

REPORT ABUSE

[Anonymous]

ZsaZsa – I don’t think sleep meds give you a good quality of sleep (deep sleep and REM sleep), I’ve always avoided them (sedatives). 20 years ago I was prescribed a low-dose antidepressant to help me “unwind” before going to bed.

I also have had sleep problems for years, usually pushing the envelope of what time I go to bed. Unfortunately I always seem to wake up at a similar time in the morning (whether sleepy or not) and I just feel like crap if I haven’t had a good night’s sleep or if I’ve stayed up past midnight. It’s been a life-long frustration. Now I know that even though I have been spending enough time in bed, and think I’ve been asleep, I actually have been waking up constantly (without my knowledge), so I don’t get into those important stages of sleep. So I highly recommend that anyone who has sleep issues talk to their doctor about a sleep study. You’re right, our health is greatly affected by our sleep. Our GPs should be asking about our sleep at every annual physical.

Now that I have been diagnosed with narcolepsy, I’m definitely taking my “sleep hygiene” more seriously. Going to bed early doesn’t mean I will be able to get to sleep (usually doesn’t), but I can certainly try to shut down my active evening earlier. My ADD psychiatrist says that being on the computer late at night is really bad, since the smaller screen is usually taking up more of the field of vision, it completely messes up melatonin levels and also sleep. My husband and I are trying to make a covenant to get each other off the computer at 9:00 pm.

sugargremlin, that’s great, keep up the log, it will definitely provide good information for a sleep doc in conjunction with a test. You may not have a typical night’s sleep during the study and at least you’ll have additional info to provide for review. I’m still keeping my log now that I’m working with the new meds.

REPORT ABUSE

[Anonymous]

no dopamine! my doc thinks a sleep study is a wonderful idea and was enthusiastic to sign the referral. I guess not many people do this without a push lol. she agreed that we need some more answers. especially since the insomnia is a lifetime issue (with periods of better and worse…but rarely completely normal) and that it appears to run in my family. my mom takes ambien every night with a chronic issue. my mom and dad have a california king size bed and use separate sheets. he calls her a “sea turtle” at night and refuses to share covers or sleep right next to her >_<. my grandfather was a lifetime insomniac. he was an extremely happy man when weather and CNN became 24hr channels. he usually slept around 4 hours a night in two intervals of two hours.

she told me that the getting overstimulated and wound up at the end of the day (like I describe in the initial post) is most likely a bipolar thing and not an ADHD thing. I was surprised because I always thought that bipolar symptoms were cyclical. this wound up can’t get myself to bed has been every day of my entire life no matter what cycle or non-cycle i am in. she said that there are still a few symptoms that are always present. she told me that ADHDers are more likely to wear themselves out, versus getting more wound up. ADHDers often still stay up too late and have weird sleep schedules, but more procrastination/distraction/insomnia related than being too hyper too settle down. and my perpetually grumpy lethargic mornings are the flip side of the same coin. and that children with this symptom are more likely to later develop bipolar. i didn’t think i displayed any bipolar symptoms until I was in late adolescence. i guess just not the obvious ones.

good thing my parents didn’t make more children >_<. lol.

REPORT ABUSE

[Anonymous]

sugargremlin, be sure to tell the sleep doc all about your family history. That was pretty key with my disorder, that and how the meds worked for me. Now’s the time to remember all of the weird stuff about your family and your sleep history. Your GP doesn’t have the time to listen to it, but a sleep doc does, and it’s all important to a diagnosis. The sleep study is just one aspect of the diagnosis, it helps to confirm or disprove a disorder but it’s not the whole story.

REPORT ABUSE

[Anonymous]

I have a one hour consultation appointment next week. I think I am going to try and avoid a formal sleep study as I called my insurance and did a bunch of research and it would be $1400 out of pocket >_<. So I will only do it if the sleep doc thinks it is vital. Perhaps, I have enough information for him to make a call. we’ll see. i know I don’t have sleep apnea. I hate hate hate my insurance . I have my current sleep log and I am going to use their website’s form for more detail.

Here it is for those who are curious:

https://www.pimalung.com/PDF/Sleep%20Log%20Form.pdf

this is one for those who actually get out of bed. https://www.pimalung.com/PDF/Sleep%20Wake%20Center%20Sleep%20Log.pdf

I tend to just toss and turn a lot. in and out of sleep, but I rarely ever get out of bed. too lazy!!!

i talk very quickly and relate a ton of information within a brief period lol. in a disorganized out of order fashion, but it gets out. hmmm maybe I should write out a careful document??? because i know that i can’t give a straight history. except much better with the meds. i almost made sense when I saw my psych doc yesterday lol.

REPORT ABUSE

[Anonymous]

Thanks, sugargremlin. The sleep log is very useful, I have been keeping a log in a little coiled notebook which means I have to transfer it somewhere else, this one is very handy! I gave one to my husband too.

Yes, write something out, sleep on it (ha ha – sorry!) and then tweak it. You may find you remember more each time you go back to the document. Ask family & friends to give you feedback on their recollections too. My dad remembers me as being “very active” as a child, narcolepsy children are like that, apparently. You can always give a copy to the sleep doc. Make a copy of your sleep log to give him too.

If it’s like my appointment with the sleep doc, I had to fill out a 25 page questionnaire before going there, and the doc reviewed it and also asked me questions, some of which he followed a bit further. He was very methodical, wrote all of my responses down, and I really felt for the first time in my life that a medical professional understood my sleep problems.

Have a look at the most common disorders (you can go nuts looking at too many variations) and evaluate whether or not the markers apply to you. If I’d gone to another sleep doc, they might have diagnosed insomnia and sent me away, but I met some of the other criteria for narcolepsy, even thought the cataplexy was non-existent (or very subtle). A very fragmented night’s sleep is a marker for narcolepsy according to him. So you can do a bit of the work for the sleep doc in self-assessing before you get there. I am terrible in responding to questions on the fly, my memory was so bad I wouldn’t recall a relevant incident, so unless the RIGHT question was asked, or I’d written it down, I wouldn’t have offered it. Thank goodness these people give us so much time, a GP would have you out the door with sleep meds without a proper diagnosis.

Memory and focus are really so much better now. My husband talks to me and I actually pay attention to him and understand what he’s talking about (unless he gets too technical).

$1400 sounds like a lot of $, but if you can come up with it, it’s worth it in the long run if it means you get a proper diagnosis. I am so grateful that I was finally diagnosed. I didn’t have to pay for my sleep study but I did pay for my ADD assessment, it was well worth it because it finally uncovered what’s been going on my whole life. Divide that sum by the number of days you expect to live and it’s less than a cup of coffee a day. What would you trade for a better quality of life? Even if you sleep badly at the clinic, it’s still data to support a diagnosis. So think about it again.

Totally crazy – I got home yesterday and the local hospital had sent a letter stating that I have a sleep study booked for Nov 26th, and that since I’ve had a diagnostic study once before in my life (20 years ago), I am required to have a consultation beforehand. The head of the sleep clinic would be meeting with me for FIFTEEN MEASLY MINUTES before my study. He’s the same respirologist who said I didn’t have asthma (I do). Soooooo glad I found the clinic in Toronto and am through the process now. Anyway, the hospital will charge me $400 if the study is not covered by OHIP (provincial government insurance plan) so I need to call and make sure they take me off their list. Would a respirologist diagnose differently than a psychiatrist specifically trained in sleep disorders? Hmmm – not going to find out!

REPORT ABUSE

[Anonymous]

I think I will just have to wait to see what the doctor says at my consultation because you are right about the importance of my health. I’m happy to say that I have not really spared any money when it comes to something I wanted for my health. I used to shell out $150 a month for my bipolar drug for probably close to two years before it went generic. The amount I spend on medications is ridiculous, but no compromises for my health. pays off as I have a pretty good job right now.

I think that I am going to write out my entire sleep story, starting from childhood. Add my mom’s familys’ sleep histories. Add in medical history where appropriate ie. the adventures in thyroid land. I have a lot of information, but I am not very good in interviews. I do end up spewing all relevant history, but I get it out in such a disorganized non-chronological manner that I confuse doctors. like blah blah blah.. oh yeah then blah a year ago.. oh yeah. then blah happened yesterday..oh where was I? A doctor is always having to ask questions and say ok..go back here. what happened first? I am sure that some doctors don’t even bother and miss information information. My psychiatrist is great about staying with me and translating. This trait is what had her suspecting ADD for a few years, but my mood control was not nearly good enough to explore that further.

I have been sleeping a ton better the last few days!!!!!!!! much better. 8.5hrs last night. feels sooooooooo good. The upped sleep meds have been really helpful. I think the pre-sleep med has been the most helpful change. I take a lorazepam a 1-2 hours before my bedtime goal. It makes me sleepy without total impairment and decreases the hyperactivity I feel at night. Thus, I am in bed early and less wound up. a pre sleep sleep med sounds kind of bad, but oh well lol.

I am now going to test to see whether the dextroamphetamine works better on a 8.5 hours of sleep. because i have to write a paper!!!!!!!!

oh and final verdict of the intense hyperactivity I get at night. apparently it is a bipolar trait (even when I am not in a mood cycle and feel normal). so that mystery has been solved .

get to work!!!!!!!!!!!!!!!

REPORT ABUSE

[Anonymous]

That sounds like a really good plan, sugargremlin, about writing all of that down. Like you, I don’t interview well, I get intimidated easily and always remember what to say a day later. A GP that only asks one or two questions or limits you to a few minutes before they barge in with their own agenda is useless for this kind of problem.

I am glad mine referred me to a sleep clinic, it just took three pushes on my behalf to get one that finally responded in a timely manner. My husband and I talked about the 15 minute “consultation” that the hospital sleep clinic director is going to give me for the sleep study booked in November, and we figure it’s just to be able to bill the government health plan, not really for my benefit. I was supposed to fill out a questionnaire to bring in, but they didn’t include it with the letter, not a good sign – they are sloppy and inattentive.

That last comment you made explains a lot about my estranged brother-in-law, who we think has undiagnosed bi-polar disorder. We had to get an unlisted number and call the police the last time (after many others) he started calling us on the phone at 3 am and wouldn’t stop. His pattern is to get drunk and very abusive and call people and keep calling them during the night. Not that this is what you do, but it reminded me of that hellish period! We’ve been told to call 911 if he ever shows up and if so, we might have to get a restraining order.

REPORT ABUSE

[Anonymous]

about your brother in law.

did he act like this all the time? or just in cycles?

I had no clue that I could manifest bipolar traits without being in a mood episode. kind of disturbing really. I get so hyper at night, but I am normal throughout the day. The normal is not the case during mood cycles.

bipolar disorder is a horrible life-threatening chronic illness. To be functional entails constant vigilance and total treatment adherence. and well…no drugs or alcohol abuse. I am fortunate that I have never craved substances. My vices are food and the internet. It is often not diagnosed as it is covered by substances, is usually manifested by depression, and people manage to alienate everything related to “crazy” behavior.

This is why I am so obsessed with my sleep cycle. Sleep is my one bipolar maintenance vice. I have excellent bipolar control through 5 years of taking medication every single day and seeing a regular psychiatrist. Even then, I have still had some bad episodes, but the support network I built catches me when I fall. I never feel completely functional. I always feel kind of off, struggling managing life, and chaotic, but it turns out that that is ADHD which would never have been found if I were not managing the bipolar. I would be living the rest of my life feeling like I am barely making it and constantly ridiculing my intellectual ability due to feeling like an air-head.

REPORT ABUSE

[Anonymous]

According to my husband, his brother acts like this in cycles, and he only does the abusive middle-of-the-night phone calls when he’s drunk. I was so fearful that he was going to drive to our house and be violent to us (but we live in another city, my husband says he doesn’t drive when he’s in that state). According to my husband’s cousin, who lives in the UK, his brother called their elderly aunt in Ireland when he couldn’t get anyone else, and so totally terrorized her that she wouldn’t answer the phone for weeks afterwards. Other times he is the opposite, he has the world’s greatest ideas and gets totally sucked in to other’s grandiose plans if it happens during that cycle. I have no idea if he is ever normal. I think it’s getting worse as he gets older, definitely after his father died.

He won’t seek treatment, he says he is “too smart” for psychiatrists. Yet the whole world, according to him, is screwing him (pardon the phrase). He’s runs his own roofing business, so in winter, he has nothing better to do than get drunk and abusive.

I’m glad you are able to control your bi-polar condition. I totally get the compliance aspect of this sort of thing now that I’m diagnosed and on meds. It’s certainly a challenge to be constantly monitoring yourself to see if you need more or less at a given time, what might be affecting sleep, other behaviours, etc.

REPORT ABUSE

[Anonymous]

Has anyone thought about evening exercise to get to sleep earlier? I don’t exercise enough, but I adopted a dog recently and whenever I take him for a decent evening walk, I tend to get a bit better sleep. I also have my cell phone set to go off at 10:30pm every night before a work day. (Sun, Mon, Tue, Wed, Thu) it isn’t as much to get me to stop what I am doing and immediately go to bed, but instead to take a couple melatonin so that I will start to feel tired earlier. I also, fortunately, have a job that I could set my own schedule, so I work around 10am- 7pm or so. Being Salaried helped me so much, because I could decide to leave at 5:30 or leave at 8:00 if I was on a roll. I do my most creative work after the majority of people have gone home (no external distractions) I still fight with internal distractions but they are recognizable and I can choose to ignore them. I write work instructions for a department of my company, they are pretty complex, but they are seriously needed, and ever-changing. I can have two or three different ones in progress at once and can jump between them as necessary. But, after the boss wanted my coworker and I to push out as many of these documents as we could in a month, and that month-long sustained full-tilt editing and attempting to finalize (approval from another Manager necessary to finalize) and having so many kicked back for both of us, my brain hit a wall and has decided to go into neutral.

As far as my sleep patern goes, I never can fall asleep before midnight unless I am already over tired and have taken melatonin. If I have the computer on, and I don’t have to be at work the next day, I can easily stay awake from Friday morning until Saturday night (midnight) and due to spinal arthritis, Ii can’t be asleep in bed for more than 7 hours without pain the next day. So, as far back as I can remember, I do best on 7 hours of sleep, and usually get about 6 hours of sleep.

I do need to use 5 different alarms on my cell phone to keep me from getting distracted before work so that I get on the road and in to the office on time. 1: Get out of bed 2: Get dressed now. 3: Gather stuff to leave 4: leave for work. 5: If you haven’t left already you’re going to be late! The beauty of these cell phone alarms is that they each have a different notification alarm or song, and hubby helps me quite a lot with most of them.

My biggest problem is actually going to bed and then going to sleep. I have a couple cell phone games that I play in bed at night as I am trying to fall asleep that I can start and stop halfway when I finally do fall asleep, which do NOT affect the alarms in the morning. I had one game on my phone that I fell asleep in the middle of which prevented my cell phone alarms from going off, that game was uninstalled as I was walking from my car to the office, two hours late! Thank goodness I have an understanding boss. I showed him my alarms on the cell phone and that none of them went off because another app prevented it, but that I had uninstalled the other app so it wouldn’t happen again.

I have been upfront about my ADHD to my employer since my first interview when I was hired, but it was only after I was there for a couple years that I realized Time Management was my BIGGEST deficit. I do not notice the passage of time. What seems like only a couple years ago was actually 5 or 7 years, what seems like a couple weeks ago was actually a month or two ago, and what seems like a few minutes ago was over an hour ago. I have pop up reminders at work to tell me to go to lunch and to go home. They work most of the time, but I have been so wrapped up in a task that I have forgotten to go eat lunch. The cafeteria closes before I am hungry, so one of my filing cabinets is a pantry. There is a microwave only 5 paces from my desk. I only need to put the soup in a bowl, microwave and eat, yet I forget. I don’t have time…. If only the world revolved on a 30 hour day instead of 24, I might have a chance…

Has aanyone taken time to see what their body would naturally do if they didn’t conform to outside guidelines of when to sleep, when to wake, etc?? Like a week-long stay-cation. A week off from work, no outside commitments, nothing really keeping you from sleeping when you were tired and waking when you naturally would wake? I have done that myself, and it resulted in finding I run on a 30-32 hour wake/sleep cycle. I averaged 7 hours of sleep after about 23 – 24 hours of being awake. I had just about reached the point where I was getting up naturally at the time I needed to be getting up for work after the brain-vacaation. It helped me realign my sleep cycle just enough that it didn’t seem so bad to get up that early. But, since I was back on a 24-hr schedule, it started to degrade after about a month or two.

Hopefully, each person here, especially sugarglider and no_dopamine can find out what works best for their brain.

REPORT ABUSE

[Anonymous]

Oops, I meant Sugargremlin. Sorry. I like the chipmunk in your avatar, and it reminded me of sugargliders.

My bobcat avatar was a photo I took just outside my office building a few years ago. This wild bobcat let me get within 10 yards and take 65 photos plus one video. Talk about hyperfocus, I was barely aware of the cars on the driveway right behind me, and was intent on not displaying any aggressive or threatening body language, was mindful of its behavior and wheen it started to look a little concerned at my proximity, I took a step back, so it relaxed again.

REPORT ABUSE

[Anonymous]

Hi Katin,

I have a sleep disorder and am at last being treated for that by a specialist. I’m at what I feel is a stable point in treatment now.

You might want to look at some of the other related postings on this site: sleep resources, sleep disorders thread, for more information. I’d give you the links but I just can’t figure out how to use the search function here and it’s too frustrating going in and out of the forum topics to see where they live. But there is good information there about light and sleep, books on insomnia, etc. that sugargremlin has contributed. The book “No More Sleepless Nights” in particular is very good. I think it’s like ADHD, sleep is different for every person, each person has different needs and they can also change over time.

REPORT ABUSE

[Anonymous]

KatinAZ, here is the most current thread:

http://totallyadd.com/forum/topic.php?id=1970

join us there

I don’t think I really have a circadium rhythm…. I got only about 4 hours of sleep the night before (I was being emotional support for bf so it was chosen and well-worth it). worked an 11 hour day.. hung out bf and a friend until late. i just didn’t get tired. 3am and bf was starting to pass out and I well…. I am so glad that my bf has a sleep cycle somewhere in there (he just recently found it) lol. now I am messing up his…. >_< instead of him helping mine. lol. I believe we can turn this around.

time management is one of the banes of my life. (bipolar disorder is hands down number 1 bane). I am atrocious. anxiety and perfectionism used to round the corner next. time management (due starting challenging career and getting deeper into adult life) is maneuvering (some relationship with perfectionism) to share a bronze medal in bane land. lol. sleep is no longer out of control, so I need to dive back into the ADHD stuff. The alarms are a great idea. sort of the same idea as the internet blocker I use (and need to use more regularly… thank you no dopamineeeeee for discovering it!.

REPORT ABUSE

[Anonymous]

sugargremlin, I’m not sure who gets the credit for the internet blocker, not me, I just spread the word!

REPORT ABUSE

[Author]

Posts