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Chronic Insomnia and Delayed Phase Insomnia, and Other Problems


#1

Hi there. I have my first appointment with a pulmonologist/sleep specialist in another week. In addition to sleep apnea, I have both chronic insomnia and delayed phase insomnia – which seem to have gotten worse after I found out I had sleep apnea and after I totally cut out an OTC medication that I kept reading could make sleep apnea worse: Benedryl. I am also on a low dose of Ativan, which I have also read can exacerbate the sleep apnea (though I cut the dose half, and afterwards, more than that; now the dose is .25 mg.). Just to add a very important point, I also have a history of both concussions and post-concussion syndrome (and PTSD) – which makes me an EXTREMELY complicated patient; I have been told that I am like an onion in the sense that one layer after the next has to be peeled in order to help me and to actually get to the “root” of the problem.

As I mentioned above, I have delayed phase insomnia and chronic (“typical?”) insomnia – so whenever I would try to use my CPAP, I would be totally awake and simply NOT be able to get to sleep. It seems that I have an overactive mind due to my concussions, PTSD, etc. – and having the mask against my face (and the constant noise and pressure emanating from the CPAP machine itself) does not help in the least. On top of this, I was never given a CPAP “desensitization session” like I recently read that the respiratory therapist was supposed to give me. I wound up complaining about this to my pulmonologist’s office, and they said they were glad I let them know. All of these things, as well as exacerbating ear pain and pressure from using the CPAP, have forced me to totally STOP using the CPAP machine. When I reiterated all of these things to the pulmonologist’s office, they told me that perhaps it was a blessing in disguise (re: my being unable to be “compliant” for the insurance company, etc.) – and that I may need BIPAP instead of CPAP (for all I know). I am presently at a pressure setting of 8 cm, but even THAT was too much for my ears, etc. – and they didn’t want to lower the pressure setting until I saw my ENT first. Now I am on Flonase, for dust allergies, and for an eardrum that is not moving and may have fluid behind it. They also told me that I would probably need another sleep study/titration done. Needless to say, I am having a really difficult time processing the fact that I have to deal with a whole bunch of problems at once – and this (alone) is also keeping me up at night.

Does anyone here have any suggestions for me, as well as useful comments on approaching the sleep doctor when I see him next week? Also, would anyone know of any useful medications that could help with my specific problems while allowing me to actually get to sleep? Of course, I would consult with the physician about the med (s) first. Believe it or not, it really seems as if my chronic (and delayed) insomnia is the “worst of the two beasts” as far as insomnia AND sleep apnea are concerned. Although I DO want to be thoroughly treated for my sleep apnea, I realy need my debilitating insomnia to be addressed; my quality of life is very low, as it is, with this one problem alone (and has been for at least the last twenty years now). I tried biofeedback with no results; herbal teas with only limited success; tryptophan and 5-HTP (etc.) with limited success; hypnosis (and I believe even “self” hynosis) with limited success; etc.

Sorry to be so tangental here, but you can see that I have become a “nervous wreck” over this entire ordeal. I would appreciate any and all help you can provide me.


#2

@Daisygirl I am very happy to hear your appointment date is soon approaching. I do not have any medications to recommend because I am not a physician licensed to do so. However, I can recommend that after your sleep study when you speak to the doctor (or receive the results, and ask to speak with him or her) that you have a list of questions or concerns handy. It will not only help you understand the results, it will ease you into whatever the recommended treatment will be. Some people find it helpful to have a family member or friend along (or on the phone) with you to take notes about what the doctor would like you to do.

There is a simple way to better understand your health conditions and what you need to do to stay healthy. Ask yourself these three questions:

  1. What is my main problem?

  2. What do I need to do?

  3. Why is it important for me to do this?

Keep asking the question over should something not be clear to you. Perhaps your medical professional will explain it a different way, or give you some tools.

This is an article that I wrote back in 2004 that explains some of the schools of thought that came into play as medical professionals embraced new ways to educate patients about their health conditions:

www.sleepreviewmag.com/2004/07/raising-the-bar-on-health-literacy/

I wish you the best of luck with your diagnosis!

Theresa (MotherT)


#3

I found out I had obstructive as well as central sleep apnea. I also had insomnia for years, I was prescribed trazadone for sleep. It works to keep me asleep . I have nights now where it doesn’t work too well, but I have been using it on and off for about 12 years. I didn’t want to increase my dose, but realized I had no choice. My girls got me a fit bit watch for Christmas and it shows how many minutes you are restless and awake per night. My average is over 3 hours. I rarely get 8 hours of sleep. I have also used Provigil or nuvigil during the day to be awake , it is a good med. You don’t feel jittery at all, just awake . I was first given the cpap and it didn’t work for me. I needed the VPAP which has a way to sense your breathing and force a breathe or something if you don’t take one . I just know it is some automatic adjustable thing. Lately I have had problems with my nose really getting a huge bubble on it so I have stopped using my mask until it heals. then I get another one. good luck


#4

Try lavender spray on. Nose piece before sleeping and lightly spray pillow. Use humidifier. Eye mask. Darkness induces sleep. Lay off drugs. Drink cup warm milk regularly before bed. Become one w the machine. G🔦


#5

“…Become one w the machine.” This is my favorite quote ever!! And such great advice. Thanks @gregromano !


#6

Hello Jsewell ~ Thank you so much for getting back to me about the VPAP machine and the specific medication that you are on. Believe it or not, I never heard of VPAP – only BIPAP and AutoPap machines; apparently, I still have a lot to learn.

I do have a question for you, though. Have you ever suffered from any concussions, like I have? I am just wondering, since I know from both seeing other doctors in the past and my own research that concussions can adversely affect one’s sleep also – and for years. This may influence my sleep doctor/pulmonologist’s decisions as to what medication he may consider putting me on – along with what exact machine is the best one for me and my scenario, etc.

Please let me know. I have my initial doctor’s appointment that is fast approaching (in five days), and it would help me to be “armed with” more good information and insight from you and others here.


#7

Theresa ~ Thank you so much for all of your insight and input. I have yet to read the article that you posted here, but I will definitely do so. I just wanted to get back to you first and thank you for taking the time to address my concerns. I showed your feedback to my husband, and he agreed that it was very good information that I could apply in approaching my doctor. I am the type of person who basically “writes a book” when it comes to preparing a list of questions and comments for physicians, anyway – so I have no problem where THAT is concerned; the only concern of mine is overwhelming a doctor (and having to be concerned about time constraints in his office) – to the point where I may not be able to ask all of my questions and present all of my comments.


#8

@Daisygirl , You are most welcome! Some patients report that they hand a printed copy of the list of Q’s they are reading from to the doctor., That way he gets to follow along and keep focused. I know I like to read something when I am processing verbal information. And I always like to say, “We all have our own way of learning.”

Best wishes,

Theresa


#9

I have similair problems, but you may not like my answer,(And neither will your Doc.) I have tried many “remedies” in this issue, and what works for me may not help you. I drink about 8oz. of coke spiked with RONRICO rum;4oz. I do not do this but every other night. The inbetween nights i do the athletic sleep bit, meaning I work out with my isometrics untill tired. I do this at about 3:00 pm, then at 9:00 I hit the bed. Both work for me.


#10

Hey, lady! Just approach your sleep doctor with an open mind. Tell him/her you will gladly work with his advice. Let him ask the questions. Take someone supportive with you (maybe not husband LOL) to listen with you. I take 3x5 cards in my purse. Pulmonologist specializing in sleep disorders will be your most valuable resource. Don’t “unload,” don’t overwhelm with your other issues. WAIT for him to ask YOU for questions. You understand the time constraints. It will be your get-to-know-me visit.

I, too, tend to “run over at the mouth,” so I totally understand. I do not agree with any use of alcohol before bedtime; limit your intake to a few isolated social events. It interferes with almost all meds and, as far as I am concerned, has only one purpose, to relax your inhibitions for interpersonal intimacy.

I, too, was quite indignant to find that all the “PM” OTC meds only add Benedryl, as it gives me the jitters.

That “good night’s sleep” is what we are all chasing. Don’t knock 5 hours straight. You probably know, but it bears repeating: We only enter the precious and restorative REM sleep around the 4-hour mark. Count yourself fortunate when you count your time in the morning.

Apparently, people in the Middle Ages referred to First Sleep and Second Sleep. They went to bed at darkness, for sure. If they woke up, they would do simple household tasks like starting bread, even visiting over the “back fence” with neighbors who might be up, doing the same things. Then they would head back to bed. And no doubt, rise with the chickens!

All the advice for preparing yourself for sleep, good stuff if it works for you. At some point we are able to quiet our intrusive thoughts and slip into sleep. After the first wake-up, my key (and I have this advantage over my husband) is to head back to bed. Welcome the return to bed, as the place you need to be.

Wish you success in your struggle for BETTER SLEEP. Come back here and post. All ages, all medical situations, all folks who will empathize.

My description of my first CPAP mask was “the small animal on my face.” Out-flow of air just aggravated my dry-eye condition. Only mask that blows out to the front is the full-face mask, so that’s where I’m at. My husband gradually got into BIPAP. There are many conditions to be treated with CPAP, even for 2-year-olds. It’s worth the struggle. Of all the things I dislike, I really like to sleep better and breathe better.

My pulmonologist suggested my nasal spray be limited to once a day, shortly before bedtime. Keep seeing the ENT! And go to a “home medical supply” with multiple respiratory techs that will keep working with you. The “sleep studies” are more for insurance verification, but also backs up the pulmonologist’s assessment. Get your “go bag” ready.

Of course, our “racing thoughts” are a big part of approaching sleep. And I have to laugh, but ANYTHING can keep us awake with all sorts of anticipation. I got really good relief from this about 3 years ago, with a psychologist in my weight-loss program. I still see him at 3-6 month intervals to follow my medication. (I was reluctant, but it’s worked out beautifully, as I now have the ability to increase/decrease medication as needed.) Your mind should be your ally, not your enemy.

I think you have learned you need to take charge of your needs. You are willing to work at it, to change yourself for the better. You are head-and-shoulders above the majority of patients!


#11

I wonder if you wouldn’t be better off with the RONRICO alone. Coke has caffeine.

I find that alcohol seems to help me sleep better, too. Not always, but sometimes.


#12

Thanks, @nona2000

When alcohol is in the system near bedtime it can be a bother. The reason is that it causes fragmented sleep (high numbers of awake periods during the night), so an individual would not be progressing through the sleep stages as nature intended. That being said, some people that have trouble falling asleep find the “fermentation is worth the fragmentation.” :slight_smile:

In the instance of the latter scenario, I find that individuals fare much better learning stress-busting methods and try them before bedtime. Initiation of sleep and maintaining it the night through is the goal.


#13

“Fermentation is worth the fragmentation.” Great line!

I think it’s best to avoid alcohol. That said (and this annoys me) sometimes I get really good sleep (as measured by my Fitbit, i.e.,. longer deep sleep and longer REM sleep) when I have imbibed. This goes against everything the experts tell us, but there it is.

Of course, then there are the nights when there’s awful fragmentation, courtesy of spirits or wine.

Yep. it’s best to avoid alcohol. I like your advice about using stress-busting exercises. Much better.


#14

Thanks @nona2000 - I will get some stress-busters posted very soon. Right now ASAA is running its annual Sleeptember Campain, so we are a tad busy. (you can find this information here in the forum).

No one anticipated Hurricane Harvey and the terrible tragedies there. We have been trying to help the relief efforts. I think I have some stress myself watching the storm and its havoc unfold. I had a hard time sleeping nearly all this week!!

I promise as soon as it is not as busy, I will get you some stress-reducing techniques posted that I always recommended to my sleep patients in the lab. Now the trick will be taking my own advice !! :-):rofl:

Be well…Sleep well,
MotherT


#15

I use isometrics as a exercise, it is with a EXERGYM. It is no more than a tube with 2 ropes coming out one end. You pull on the ropes set at the friction you feel you can take, then exercise your arms, legs, ect. The “equipment” takes little room to stow, and I do my exercise around 3:00.


#16

strong textare there sleep apnea groups. Meet to help each other. In. Torrington. Ct. Area??