My Experience with a Sleep Specialist

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This topic contains 14 replies, has 7 voices, and was last updated by Jane 7 years, 8 months ago.

Viewing 15 posts - 1 through 15 (of 15 total)
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  • #8509

    sleeplessinky
    ✘ Not a client

    A lot of recommendations are made on here and other insomnia forums to see a sleep specialist for insomnia. My advice is to choose a sleep specialist very carefully. Too often they have very little interest in insomnia and more in sleep apnea and other sleep disorders. My sleep specialist ordered a sleep study and it was learned that I had mild sleep apnea. He believed that the apnea was causing the insomnia which made me very hopeful but after 2 months on CPAP treatment, it clearly is not the cause. Insomnia continues in full force. My problem is that the sleep doctor never delved into the cause of the insomnia after realizing that apnea was a separate issue. He didn't ask if there were problems with depression, anxiety or to see if there were any medical causes of insomnia. He didn't recommend CBT (although I will be doing that on my own). Instead, he told me to take Ambien every night.

    What are some of your experiences with sleep specialists? Has anyone had a positive experience?

    #13160

    Margaret
    ✘ Not a client

    Dear Sleeplessinsky,

    Your post interested me greatly. My son has sleep apnea. His CPAP machine helps him a lot. He does NOT have insomnia. The two conditions are completely opposite. I am appalled that a sleep disorder specialist would have the two confused. One is completely physical, the other can often be more in the realm of psycology or tension. They have more to do with conditions of modern life and can sometimes be relieved by changes in our living conditions. Sleep apnea can never be helped by anything other than a machine.

    I hope the doctor told you that Ambien is addictive. I would never take Ambien more than for an occasional night or two and then go off it for, say, a week before taking it again. You might want to consider taking a half dosage even at this sporatic schedule.

    What is CBT?

    Margaret

    #13161

    sleeplessinky
    ✘ Not a client

    Hi Margaret, Thanks for your response. I too am appalled by a lot of the things my sleep disorder specialist said. However, he didn't actually confuse sleep apnea with insomnia. He was just saying that because of the breathing problems, it could cause insomnia. When he realized that was not the case with me, he didn't offer any explanations of what could be really causing the insomnia. I didn't mention the best part yet. He said that Ambien is NOT addictive. My head is still spinning from that.

    CBT stands for Cognitive Behavior Therapy which is something that's been used a lot lately for treatment of insomnia. Here's a link that describes the process much better than I can. http://www.mayoclinic.com/health/insomnia-treatment/SL00013

    There's a lot of other sites out there on the subject as well. If you're interested you can find a lot of info doing a google search. Let me know what you think.

    #13162

    PatO
    ✘ Not a client

    Yes, it is hard to find a sleep specialist who truly understands the many facets of sleep disturbances. It appears that most sleep specialists focus on sleep apnea, narcolepsy or restless leg syndrome. I remember visiting a sleep specialist and paying for the visit with cash (approximately $200.00). I was hoping that he would give me a well rounded and in depth understanding on the subject of insomnia, but instead he gave me a very limited amount of information to work with. He focused on C.B.T., which is in itself valuable information, but when I asked him to provide me with other possible reasons for my insomnia, he was only able to recall one illness that is prevalent in the continent of Africa named African trypanosomiasis. From my own research I have found numerous possible reasons for insomnia, including medical conditions such as; liver disease, heart disease, hyperthyroidism and brain chemical imbalances such as; Serotonin, Dopamine, Norepinephrine, GABA and Acetylcholine. The list goes on… I guess what I am trying to convey is that someone with the title of “sleep specialist”, in my opinion, should be able to furnish a complete and exhaustive list of possible insomnia causes (a piece of paper with researched information). Otherwise we are required to see our primary care specialist, and good luck there. I think its about time the medical community started treating this thing like a serious medical condition. We all know it is!!!

    #13163

    Margaret
    ✘ Not a client

    Thanks to you Sleeplessinky for explaing CBD and giving the mayo clinic link. Along the lines of getting up instead of laying in bed awake for hours, I have found it to be helpful to read a (not too interesting) book and going so far as to the sofa in the living room and lying down reading under the table lamp. It seems to relieve the pressure of thinking about sleep which the bed induces. I sometimes drop right off. Amazing how relaxing it can be. In the same way, I often can take a nap on that same sofa so I must associate it with being relaxed. Of course, there are sometimes PEOPLE going back and forth in the living room during the day so the nap doesn't usually last too long but even a 10 minute cat nap can be refreshing when you are dopy from lack of sufficient sleep. I hope this helps someone.

    Margaret

    #13164

    MarinaFournier
    ✘ Not a client
    'sleeplessinky' wrote on '29:
    My advice is to choose a sleep specialist very carefully. Too often they have very little interest in insomnia and more in sleep apnea and other sleep disorders.

    That's my experience as well. The “sleep specialist” I went to was a pulmonologist, so yeah, he only looked for sleep apnea or other lung/breathing issues, and I only got the go-ahead for an overnight session after a major bout had passed, so he thought I was malingering or hypochondriac.

    Stanford has what is closer to what *I* would consider a real sleep center, run by Dr. William Dement, who is one of the foremost sleep specialists in the world. He advocates a “sleep hygiene” routine, including nothing other than sleep and sex in a bed. There's an underlying supposition in the sleep hygiene guidelines of your not having common sense, alas, and doesn't really look at other conditions that you might have which could affect ability to sleep, other than stress. Some medications many of us will be on for the rest of our lives have insomnia as a side effect, and we can't go off them. Some of us had the insomnia before the condition or the meds, so what does that mean for us?

    One “rule” in that regimen is that you not read in bed. Now, if I get up to read in another room until I'm ready to drop off, I'll be too awake to sleep once I get back in bed! Throughout my life, I have read in bed, as it's the most comfy place to read, even if I'm not trying to sleep. Reading can send me off to sleep OR it the book can keep me awake trying to finish it–in other words, not a constant factor. Other folks here also find that to be true.

    Some “experts” suggest that you have nothing electronic in your bedroom. Em, try finding a mechanical alarm clock these days. Sorry, not going without an extension in my room, although I have the ringer off, as I HATE being woken by telephone bells of any stripe. My cell phone alarm sounds are all music that I like, some gentle, some stompy music to get me awake fast.

    Quote:
    My problem is that the sleep doctor never delved into the cause of the insomnia after realizing that apnea was a separate issue. He didn't ask if there were problems with depression, anxiety or to see if there were any medical causes of insomnia.

    Exactly! Then there are pdocs who see your psych problems *causing* your insomnia, and won't listen about it predating the issue for which you are being treated. They are too often separate issues, and my current pdoc understands that. alas, she is not a sleep specialist.

    Apnea is easily found and treated–other issues not so much. I hope you are able to find some relief.

    #13165

    sleeplessinky
    ✘ Not a client

    Thanks to all of you for your comments. You have all reinforced my feelings on this issue, as well as giving me some helpful information. Marina, I had never thought about what you said about the sleep specialist being a pulmonoloigst and naturally would be looking for lung/breathing issues. Yes, my sleep specialist is also a pulmonologist. Now I get it. I'm going to a CBT specialist next week and, of course, Ill be looking at sleep hygiene and sleep restriction. I also realize that I'll have to discuss personal problems that contribute to my sleeping problem. I'm ready for whatever comes up. Reading and watching TV in bed will have to cease. However, I don't really do that often, being well aware that the bed is supposed to be used only for sleep and sex.

    What happens to me a lot is that I get really sleepy while watching TV sitting on the sofa. As soon as I turn off the TV, get into bed, I'm wide awake. Sleep restriction requires you to go to bed at a certain time even if you're sleepy before that. I'm afraid if I have to fight sleep, when I go to bed at my required time I'll never get to sleep. Also, my biggest problem is staying asleep. I awake several times, unable to get back to sleep. I can only hope that this type of therapy will somehow work for me.

    Thanks again to all of you for your helpful comments. I hope everyone is able to get some sleep soon

    #13166

    Martin Reed
    ★ Admin

    What a great discussion and resource thread this is turning into. Thanks for getting it started, sleeplessinky!! As seems to be alluded to in this thread, I often come across insomniacs complaining that their sleep study wasn't particularly useful since it only investigated the possibility of sleep apnea; when it comes to insomnia the studies aren't usually all that helpful. I am hoping I'll be corrected by another member on this, though!

    #13167

    jayinsf
    ✘ Not a client

    Sorry .. I thought I had posted this last week but turns out I wasn't logged in …

    I have been seeing a sleep specialist at UCSF for about a year; I see him every four months or so. I've had recurring fatigue issues over the years and have difficulty sleeping more than 6 hours, usually less, and I'm always feeling groggy and foggy headed; sometimes more than others. The first time I saw the sleep specialist, I was having severe insomnia, many nights not sleeping at all, other times waking up in the middle of the night and not being able to fall back to sleep. Coincidentally I had started reading Jacobs' book on CBT for insomnia around the same time. The specialist told me to finish reading it, keep track of my sleep patterns, start a sleep restriction regimen, and take walks at night. It did seem to work; either because my anxiety from the new job lessened somewhat or because of the routine, I started sleeping through the night. However, I still could not sleep more than 6 hours max generally, often much less, waking up very early on work nights. (On weekends, with the help of a sleeping pill, I usually manage to sleep later.) But I am still very groggy and tired all the time. Now he has proposed putting me on Celexa to see if my problem is in part caused by depression and whether that might help improve my sleep and energy levels. I haven't actually started it yet; still thinking about it.

    Update: This week I had a phone session with Gregg Jacobs, the leading CBT authority, and he urged me to go back to the prescriptions outlined in the book, most of which I haven't been following since I went through the six-week course and worked with the sleep doctor about a year ago. I've gone back to my old habits and have been spending too much time in bed when I wasn't sleeping. So I'm back on the CBT program for the next several weeks and we'll see how that goes. Going to forego the Celexa for now.

    #13168

    jayinsf
    ✘ Not a client

    I realize this thread is old and no one is probably reading anymore, but I just got around to reading your post and coincidentally, I had just pulled out the sheet that my sleep doctor (who also works in a clinic that is primarily pulmonary based but he also does CBT), and I noticed that it says on there that you should do something relaxing for 10 to 60 minutes before bed, and be sure to turn off the TV or computer I think it was a half hour beforehand because that can cause you to stay awake. Just thought I'd throw that in there. Good luck!

    Jay

    #13169

    sleeplessinky
    ✘ Not a client

    Jayinsf, I'm about 3 weeks into CBT now. I was starting to get discouraged, feeling that I was making no progress. My sleep therapist disagrees and analyzed my sleep logs that I presented when I first went to him to those that I have completed since. He said that i have made progress in all areas; that my sleep onset time has greatly improved, that I'm not waking up as many times as before, and that the time it takes me to get back to sleep has decreased. He did say that my type of insomnia (sleep maintenance insomnia) is the hardest to cure and that I need to give it time.

    #13170

    Martin Reed
    ★ Admin

    This is really interesting and I am sure this discussion will help a lot of other members. Please keep it going; it will be interesting to see if/how your sleep improves with the CBT in particular.

    #13171

    jayinsf
    ✘ Not a client

    I actually am beginning to wonder if I should be tested for apnea again. I was tested for it about 20 years ago (when I first started complaining about fatigue) and it was negative. But Jacobs said you can develop it over time and that my symptoms sound like apnea; since I am groggy and fatigued even on nights when I get a full night's sleep, and even if I have gotten my 5 to 5 1/2 hours of “core” sleep (which I actually do get most of the time). So I'm thinking about that and wondering whether my problem now actually is “insomnia” or some other underlying issue that is causing my constant fatigue.

    #13172

    Margaret
    ✘ Not a client

    It can't hurt to have it tested again, Jayinsf. I have two family members with sleep apnea who have been enormously helped by the new devices. It is actually dangerous in the more advanced forms since your heart stops and your oxygen levels drop. The new aids can make you feel more rested and could improve the quality of your life. It is definitely worth a try.

    Margaret

    #13173

    Jane
    ✘ Not a client

    sleepslinky that sounds like what I have. Never heard it called sleep maintenance insomnia before. All I want to do is go to bed and sleep solidly for about 8 hours without waking up continuously. I'd never given seeing a sleep specialist a thought. Something to think about for the new year if it keeps on though. An interesting thread. 🙂

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