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    Old 06-21-2011, 11:46 AM   #1
    Matt444
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    A Desperate Insomniac

    Hi, I'm here because I've been dealing with sleep issues for a very long time and quite frankly, I'm at my breaking point and don't really know where else to turn anymore. I'll try my best to provide as much information as I possibly can with the cautious hope that someone out there has a miracle in them:

    I'm 24 yearsold and have been a nightowl ever since I can remember. In college, I used to go to sleep at 3-4 AM with fairly significant on-set insomnia (it would probably take 30-45 minutes to fall asleep), but I would typically sleep through the night uninterupted. This was an issue because I usually wouldn't wake up until 12-1 PM, but outside of melatonin and herbal remedies, I never seeked any help for the condition, partly because I don't think I processed that it really was an issue and partly because my mother didn't really take any complaints I voiced seriously.

    Over the past year, it has progressed even further south. I was diagnosed with ADHD about a year and a half ago (though I've likely had it much longer than that), so the Adderall I now take has no doubt complicated matters. The fact that I now work 40 hours a week and can't manually set my schedule around my sleep issues like I could in college probably hasn't helped either.

    The best way that I can describe it is that I literally feel exhausted all day long, but the second I put my head on my pillow to sleep, the weights my eyes have been dealing with all day are lifted and I feel 100% awake. Basically, I close my eyes and nothing happens.

    I've tried melatonin (both before bed and hours before bed), St. John's Wort, Green Tea, Bananas, Magnesium pills, lavender, blu-light blockers, reading, and probably about 100 other things I've read or been told at some point brings sleep. I can tell you from the absolute bottom of my heart that none of these things do a thing to prompt sleep in my body.

    I've taken ambien, lunesta, seroquel, sonata, roserum, xanax, and trazadone. Some (trazadone) have basically done nothing, others (sonata) have done relatively little. Some of them (ambien) have done a decent job of knocking me out, but my body becomes dependant on them very quickly, the sleep is terrible, and no matter what I do, they will wake me up wide awake in 3-4 hours.

    I've been to sleep doctors, family practitioners, phyciatrists, phycologists, and all I ever get from them is a signature on a perscription, some ignorant advice that all I have to do is read and I'll be able to sleep, or the simple advice that the Adderall is the root to my sleeping issues and that I have to stop taking it. I'm not disputing that Adderall can't possibly be good for my sleep, but I am telling you that my sleep issues go WAY back past ever taking Adderall and my sleep issues are WAY beyond the Adderall I take.

    I'm sure despite my rambling that I've left out a million things, but the summary of my story is that I feel like noone takes my sleeping issues seriously and noone (besides my girlfriend who sees it first hand) has any clue how badly it is. I missed a very important doctors appointment with my girlfriend this morning because I was so out of it from the Ambien I took that she couldn't get me up. I'm sick of this ruining my life. I will do whatever it takes to fix but I'm sick of horrible medication bandaids and I'm sick of nobody taking me seriously. I've done a sleep study and I have actigraph results from a watch I wore for a number of weeks, so both of those are available if there is an expert somewhere that wants to take a closer look at them.

    Thank you so much for listening to me.
    Matt

     
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    Old 06-21-2011, 08:49 PM   #2
    phoebe368
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    Re: A Desperate Insomniac

    Please post the results of your sleep study. did it show any apneas, hyponeas, spontaneous arousals etc? I had a similar problem such as yourself, insomnia that eventually became drug resistant - I tried Halcion, Trazodone, Ambien. I had difficulty falling asleeping, staying asleep and waking too early. After 2 sleep studies which showed nothing I went to the world famous Stanford Sleep Disorders Clinic in Redwood City, CA. They are the top sleep clinic in the world. They have better, more sensitive sleep testing equipment than other places. They do overnight sleep testing (polysomnography), none of that at home sleep testing. I was finally diagnosed with a sleep breathing disorders obstructive sleep apnea with hypopneas and flow limitations. I am not the typical sleep apnea patient, I am young, thin, not obese and do not snore. I did not have the typica symptons of OSA - i.e. I was not sleepy, falling asleep all the time. did you know that 95% of insomnia is caused by a sleep breathing disorder? This is because noturnal cessation in breathing is very stressful to the body so as a defense mechanism your body does not let you sleep because it thinks you are going to choke. Your limbic system is in a pre-arousal state. Sleep breathing disorders are treated by cpap therapy. I no longer have insomnia issues now that I am on cpap therapy.

    Last edited by moderator2; 06-22-2011 at 12:38 PM.

     
    Old 06-22-2011, 09:30 AM   #3
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    Re: A Desperate Insomniac

    Thanks so much for the response.

    Here are the results of the sleep study:

    SLEEP STAGING
    Sleep was initiated in 30 minutes. REM latency was 385.5 minutes. Total time in bed was 443.5 minutes. Total sleep time was 255.5 minutes. Sleep efficiency was 62.2%. There was 40 awakenings. Wake after sleep onset was 150.5 minutes. With regards to sleep stages, there was 20.7% stage 1, 56.2% stage 2, 18.0% stage 3, 0.0% stage 4, 5.1% REM.

    RESPITATORY
    There was a total of 15 obstructive disordered breathing events. Supine Index was 7.7 events per hour and the lateral index was 1.7 events per hour. There were 6 partial apneas with a mean duration of 17.1 seconds. Baseline SAO2 durign sleep was 97% and the low was 91%.

    PERIODIC LIMB MOVEMENTS
    81 periodic limb movements for an index of 19 per hour, 7 of which caused by EEG arousals.

    EEG
    There were no eplieptiform features.

    CARDIAC
    The basal heart rate during sleep was 73 bpm.

    Now, the problem with the results (these are all I got) was that I vividly remember that it took me more than 2 hours to actually fall asleep. It was so bad that I called my girlfriend and asked if she thought I should even stay there because I felt so utterly awake that I didn't think I had any chance of falling asleep.

    I talked with the nurse who was administering the study and she said that when I texted on my phone my brain lengths moved very slowly, but the second I put my head back on the pillow they got very active again. She said that every time I seemed to be drifting into sleep I'd suddenly awaken. So even though the study says I fell asleep at 30 minutes, it doesn't say that I never really fell asleep and probably awoke from the sub-Stage 1 at 30 minutes and one second. Of course, I have relentlessly talked to the hospital that administered the test because I want a more extensive look at the study (brain lengths, etc.), and they don't know what the hell I'm talking about.

    By the way, I too am tall and skinny (6'1, 185 pounds), who doesn't snore, so I have never felt or been diagnosed with any kind of apnea, either.

    Last edited by moderator2; 06-22-2011 at 12:38 PM.

     
    Old 06-23-2011, 09:18 AM   #4
    Catalona
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    Re: A Desperate Insomniac

    Hi Matt,
    First, let me say I really hear you! I am much older than you so don't know how much my information will help. I had the experience of laying awake for hours. Being tired until my head hit the pillow, then being wide awake. I had the advantage of being in the health field, so I started reading and trying many things.

    Here are a few ideas from your history. While in college you messed your sleep cycle up and adding to that had the stress of college, then the stress of not sleeping. This effects two really important hormones that cause insomnia. Your adrenal glands probably became exhausted, causing you to have too much cortisol in your system when you went to bed. Cortisol keeps you awake because it is the fight or flight hormone and doesn't want you to fall asleep if you need to save your life. The other hormone that gets off rythem is melatonin, the sleep hormone. It's production is also decreased with many medications. Melatonin should be used 30 minutes before bedtime, and your intended bedtime should be 10:00 PM to take advantage of the natural rythem of light and dark and that of the adrenal glands. Melatonin should be taken in a spray form so it gets into your blood stream and bypasses the liver, which often dumps the pill form into your urine and you get very little use from it. It also needs to be a good quality melatonin. If you sleep and then wake in the night, the spray can be used again.

    Taking a good adrenal support is necessary for supporting the adrenals and helping to decrease the cortisol levels at night. Also learning relaxation techniques helps calm the adrenals

    There is another hormone that greatly affects deep sleep, and this is the one that helped me the most, but it isn't common to be deficient in someone your age, and that is HGH. There are lab tests that can be done to check for the evidence of HGH, but not the HGH itself because it varies so much from hour to hour.

    There is a possibility of your not getting enough oxygen, and your body not allowing you to "gate down". If this is the problem, there is a dentist who makes appliances for the mouth for people with sleep apnea, autism and hyperactivity who is getting really good results.

    The part of the brain that allows you to gate down is in the brain stem, and since you say you have ADHD, it would probably be helpful to do exercises that stimulate the pons area of your brain.

    Sleep was such an issue for me and such a blessed relief when I found my answer in a bottle of HGH that I started a website. There is a list of things on that site that you need to be aware of to regain a natural sleep cycle. When more than one system is out of balance, and we treat only one of them and it doesn't work, we assume what we took didn't help, but it might be needed in combination. And it is easy to sabatage our sleep with a few bad habits.

    I hope this helps some. Again, I REALLY feel for you.
    Catalona

     
    Old 06-24-2011, 10:34 AM   #5
    Matt444
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    Re: A Desperate Insomniac

    Thanks guys, I've gotten more help out of the responses than I have in years of doctors visits.

    Should I ask a family physician that I want HGH and cortisol bloodwork? Do you think a second sleep study at a higher quality facility would be beneficial?

     
    Old 06-24-2011, 02:23 PM   #6
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    Re: A Desperate Insomniac

    Your sleep study shows that you are having both arousals (awakenings) and apnea events. Your apnea index appears to be mild but I suspect you have more subtle breathing events that were undetected. In my first sleep study, they said I had over 100 arousals and was diagosed with mild snoring. At my Stanford sleep study, I was diagnosed with an RDI of 14 - 14 hypopneas events per hour and many flow limitations. I suspects that your 40 arousals may actually be undetected hypopneas events and that you may have undetected flow limitations. Your study says you have periodic limb movement disorders "81 periodic limb movements for an index of 19 per hour, 7 of which caused by EEG arousals" Is these being treated/addressed? For your apneas, have you tried contacting the sleep clinic where you had your study done for a loaner cpap to try? This is what I did after my first study which showed only mild UARS and snoring. I asked the sleep clinic if I could try the cpap. I tried it and immediately felt improvement so I knew I had a sleep breathing problem

     
    Old 06-24-2011, 02:51 PM   #7
    Catalona
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    Re: A Desperate Insomniac

    Matt, I am really glad you found some help.

    Cortisol levels are best found using a saliva test 4 times a day to check on its levels at different times and activities. You will probably need to find an alternative care physician for this. It could be an MD, DC or ND. Most allopathic physicians don't check it unless you have a disease called addisons and this isn't what we are talking about. If you don't find anyone, there are a couple of simple tests you can do yourself that can help you figure out if you are adrenal fatigued.

    HGH is VERY difficult to test accurately so it's better checked by a blood test for IGF-1 levels. If your IGF-1 is low, it is assumed that your HGH is low. For your age you would want your levels to be about 345 ng/mL HGH treatment is costly and if not done in small enough doses can have some negative side effects. I personally use a homeopathic HGH and do not need a prescription nor injections, and it is safe. HGH usually isn't the culprit in someone in their 20's, but its possible.

    Catalona

     
    Old 06-29-2011, 11:02 AM   #8
    Matt444
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    Re: A Desperate Insomniac

    So, after having to fight with my sleep doctor to even get a CPAP perscription, I was told that I'd have to pay 100% out of pocket since my sleep study only found 3.5 apnea episodes per hour. The clinical diagnosis for sleep apnea is 5 apnea episodes an hour.

    The out of pocket is ridiculous (500 dollars for a one month RENTAL), and since noone will let me try one for a few days, I can't justify going out and buying something that I have no way of knowing will be successful.

    I guess the sleep deprivation and utter frustration continues. Sigh.

     
    Old 06-29-2011, 11:32 AM   #9
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    Re: A Desperate Insomniac

    Don't give up!! I wish I could give you my husbands CPAP to try! He hated it and wouldn't use it. What a thing to have to be tied to for the rest of ones life! He has stopped his sleep apnea by other methods. With so few episodes its likely not your biggest issue.

    Do educate yourself for other probabilities < edited >

    There has to be an answer and it will probably not be from your doctor.
    You will become your best doctor

    Last edited by hb-mod; 06-29-2011 at 11:33 AM. Reason: Please don't post unapproved websites, per Posting Policy. Thanks.

     
    Old 06-29-2011, 12:07 PM   #10
    Matt444
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    Re: A Desperate Insomniac

    Yeah, I don't think there's any question that I'm my best doctor at this point, atleast in comparison to the ones who have been 'treating' me. It's just sad that I can educate myself to think outside of their unbelievably ignorant box. And it's even sadder that they have such a lack of a sense of urgency for something that is deteriorating my quality of life at freaking 24 yearsold.

    What do you think my next move should be? To try to get a test done on my cortisol levels? I would bet good money that they are high based upon the way you described them and how my insomnia presents itself. Although I'm sure I'll end up being told I'll have to pay for that out of my pocket, too, didn't you say there were a few good ways I could test that myself?

    I also am going to go get a spray form of melatonin. I have doubts it will be much of an improvement because melatonin (and anything over the counter) doesn't even phase my insomnia, but it's worth a try. Does anyone have any suggestions for brand I can trust is pure?

    Thanks so much.
    Matt

     
    Old 06-30-2011, 06:54 PM   #11
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    Re: A Desperate Insomniac

    Hi,

    The home tests for adrenal problems are called the Paradoxical Pupillary Reaction Test and the other one is Raglands. I take a supplement that has 400 mg adrenal glandular, the highest amount I have found. I just read a few days ago that there are non prescription products now that lower the cortisol levels at night by 60%!!

    When you get your melatonin get one without B6, because I just learned it agitates some people. The one I use has B6 and I suspect it agitates me. I want to find a different one, because I only take it because of all the good things melatonin does for us!

    The third item that really helps sleep and was the absolute magic for me was HGH. I couldn't afford the shots, but someone told me the homeopathic form would work, so I bought some, and oh my gosh I slept the first night! I love it. It's very reasonable in price. There are some products that say they help your body secrete HGH, they don't have any HGH in them, but these didn't work for me. So just be aware if you try it that there are two different types of product. A lot of younger people use it for body building, so it should be safe for you to try it and see if it will put you to sleep. You may have to use all three things, but if you can sleep its worth it. I really hope you find some answers. I couldn't sleep for a number of years, and the adrenal and HGH allow me to get a natural deep sleep every night--unless I drink caffein too late.

    Keep us posted!

    Last edited by Administrator; 07-01-2011 at 02:39 AM.

     
    Old 07-05-2011, 10:28 PM   #12
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    Re: A Desperate Insomniac

    dear matt, i'm a 21 year old hailing from singapore and life here is rather stressful. i'm working and studying at the same time and have been having sleep problems as well. i'm pretty new to all these sleep things and have been trying all sorts of ways to deal with it. i jerk everytime i'm about to fall asleep and sometimes have a rush of panic or a strange popping sound in my ear. i admit that i used to lead a really unhealthy lifestyle; consuming alcohol and cigarettes and have a terrible sleep cycle. so now i'm trying to rid all of that, eat healthy and have a regular cycle even though its hard since some nights i get little or no sleep at all. my doc says its anxiety but i'm not sure entirely. i've been taking magnesium too which helped abit a few months back but recently the jerks have returned. trust me when i say i really undderstand how you feel about this whole thing, i have felt really alone through all these as i felt that no one could understand my problem. the only advice i can give you which i am also carrying out is to constantly search for a cure. keep going for tests try different supplements or medicine, change your lifestyle, eat healthy and exercise as much. all these till you get there. you are not alone okay? all the best.

     
    Old 01-02-2012, 10:25 PM   #13
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    Re: A Desperate Insomniac

    Catalona-
    I would love to talk to you about what you are taking exactly for your adrenals and the natural Hgh boosting product. I've pretty much decided that I need those two things and then ran across your comment here.

    Thank you!

    Last edited by moderator2; 01-03-2012 at 06:35 AM.

     
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