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Please help. Obstructive sleep apnea condition and chronic migraines with insomnia. Also, I am very nocturnal.


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I'll get to the coinciding physical symptoms eventually. I have always had trouble sleeping through most of the night like the majority of people do with ease and very naturally sleep through the majority of the day when most people are awake. I honestly have always preferred not to see the morning (I find it utterly depressing) except I am obligated to get places like doctor's appointments, stores, and restaurants before they close for the day and I would like the be awake and ready to leave my home by the early afternoon on a consistent basis. Since I was 12 years old, my addiction to being nocturnal and having an abnormal or irregular circadian rhythm has gotten progressively worse. So much to the point where I will fall asleep as the sun is rising and wake up when it's setting or it will be dark again by the time I wake up! I am being deprived of too many things, missing doctor's appointments, or not being able to get my car to the auto mechanic before he / she closes for an oil change. I eventually want to get a part-time job (currently living on SSI) and i imagine that my job would take place in the late afternoon or the evening shift but how could I even hold down a job that was a full-blown a graveyard shift under these circumstances!? My insomnia which can be attributed to the fact that I was formerly diagnosed with bipolar 1 with psychotic features and am now diagnosed with schizoaffective disorder, ocd, and add (possibly adhd). Sometimes if I stay awake later than I really want to (preferably between 1 and 3am to be able to wake up by the early afternoon) then I will just remain awake into the next day in order to guarantee that I will make the appointment or obligation and get to it in a state of sheer exhaustion barely able to follow the doctor or specialist as they're explaining things to me. Sometimes I have gone two or even three nights in a row without getting any shuteye because the appearance of it being nighttime awakens me. The only time that my insomnia (but not the sleep apnea or chronic migraines) was under better control was when I was on court ordered injections which were anti-psychotics and along with outright despising the process of getting those injections, I had a plethora of other side effects like akathisia (inability to sit still), lethargy, fatigue, sedation, and severe weight gain at the same time. I've been on Latuda 20mg for a couple of years now with little to no side effects and I plan to stay on it and never be subjected to having to take anti-psychotic injections ever again after my experiences with them when I had to involuntarily take them by court order.

Now I also have some other issues going on in addition to the insomnia and nocturnal sleep cycle. I have ehlers-danlos syndrome type 3. I was diagnosed with severe obstructive sleep apnea after a sleep study ordered by my pulmonologist in the beginning of 2018 shortly after I got off of the anti-psychotic injections and I was 308 pounds (my heaviest ever weight, my height is 5'8). As of December 2019, my weight is 281 and I've been at a weight set-point since the end of 2018 where my weight is no longer fluctuating anymore (cannot easily lose or gain weight). I hated the mask / cpap machine or was cpap intolerant and sent it back to the surgical supply company within a couple of weeks. My ENT is not recommending the oral surgery or UPPP procedure because of how severe the sleep apnea is and I don't want a tracheotomy. He said that I'm too obese to use Inspire. I can't find an oral surgeon who does maxillomandibular advancement surgery. The obstructive sleep apnea and tmj syndrome which I've suffered from for over a decade combined are giving me chronic migraines and still sometimes when I take my prescription strength pain relievers from my rheumatologist. I wake up feeling like I was hit by an 18-wheeler stumbling to the bathroom sink with my eyelids glued together (look up the medical term blepharitis, I get that in my sleep too). Sometimes the migraines are so bad that I will force myself to eat and drink a small amount and take something like Excedrin PM or other types of nighttime pain relievers and fall back asleep and wake up again slightly less messed up because I had more rest even later in the day. Another major problem is that even if I somehow get a better nights sleep one night, the next night I will be so energized once it gets dark that I will do another all-nighter until the sun is coming up and the cycle or revolving door starts all over again.

I used to be prescribed sedatives like Trazadone and Clonazepam but my new psychiatrist (been seeing her for a little over a year) insisted that I come off of them until the sleep apnea was successfully treated because me taking them before going to sleep with that medical condition was too dangerous. I recently found a dental sleep specialist hours away from where I live which designs oral appliances specifically for treating sleep apnea and tmj syndrome and I've been trying to set up an evaluation but they are forcing me to do another sleep study at home because the last one I did at the sleep lab was in March 2018. I recently went to my local CVS and picked up generic Benadryl or diphenhydramine 50mg and I found something recently at 7-Eleven called doxylamine succinate which is labeled as a strong sleep aid. I am sleeping with a wedge pillow and I eventually want to invest in a bed with an adjustable mattress to keep myself on an incline.

If anyone else has any input that you think could be helpful on how I could fend off the insomnia and be less nocturnal on a consistent basis, it would be appreciated.

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9 hours ago, SheltieUnderdog said:

 If anyone else has any input that you think could be helpful on how I could fend off the insomnia and be less nocturnal on a consistent basis, it would be appreciated.

You mentioned that you were on Latuda....

Would you feel comfortable sharing what other prescription meds you're taking now (if any)?

Edited by CrazyRedhead
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Is your apnea less when you sleep on your side? I have obstructive sleep apnea (severe on my back) and could not get the cpap to work. My pulmonologist ordered a sleep study at home (the original was done there) with me sleeping on my side. I wore something that kept me from rolling on my back.  It was mild on my side so they approved an oral appliance. I see a special dentist. I wear a t-shirt with a pocket in the back for tennis balls that keeps me off of my back and wear the appliance. She was astounded that I had a fine sleep study with the appliance and side sleeping. I have a fitbit that registers your sleep quality. At first, I thought it was broken, it would not record sleep. Now, it is recording 5-8 hours at night in a stretch. It is a huge difference.

I also take provigil. It is a type of stimulant that helps because I still have a lot of fatigue and I drink coffee. You should qualify for provigil because you have OSA.

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5 hours ago, CrazyRedhead said:

You mentioned that you were on Latuda....

Would you feel comfortable sharing what other prescription meds you're taking now (if any)?

First off, I don't take any psych meds when I wake up.

The prescription medicines which I take with my first meal when I wake up are Valsartan 160mg, Ibuprofen 600mg, Viberzi 100mg, Dicyclomine 20mg, Rantidine 300mg, Vitamin D 5000iu, Sertraline 50mg (prescribed by urologist for premature ejaculation, not for depression / anxiety).

Middle of day / evening / or taken at dinner time meds : Ibuprofen 600mg, Dicyclomine 20mg, Viberzi 100mg, Rantidine 300mg

Meds taken at bed time : Latuda 20mg, Atorvastatin 20mg, Ibuprofen 600mg and that is usually taken with some kind of sleep aid like melatonin, diphenhydramine, or excedrin pm since my psychiatrist took me off the Clonazepam because of the obstructive sleep apnea.

I should note that I am very dependent on Excedrin or generic acetaminophen + caffeine migraine and headache versions when the prescription ibuprofen fails to prevent migraines during the day or if I wake up with a migraine from sleeping poorly. Sometimes I'll take extra strength Tylenol or naproxen sodium (Aleve) if the symptoms are not severe enough for me to feel like I need to take Excedrin on top of the ibuprofen.

The Latuda and the Atorvastatin both have some kind of sedating effect so I choose to take them at bed time. My primary recommends taking the Atorvastatin at bed time but my psychiatrist told me that I can take the Latuda when I wake up, mid-day, or when going to sleep as long as it's taken with a certain amount of calories for absorption. I choose to take it right before going to sleep because there is a light sedative in Latuda.

Edited by SheltieUnderdog
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5 hours ago, confused said:

Is your apnea less when you sleep on your side? I have obstructive sleep apnea (severe on my back) and could not get the cpap to work. My pulmonologist ordered a sleep study at home (the original was done there) with me sleeping on my side. I wore something that kept me from rolling on my back.  It was mild on my side so they approved an oral appliance. I see a special dentist. I wear a t-shirt with a pocket in the back for tennis balls that keeps me off of my back and wear the appliance. She was astounded that I had a fine sleep study with the appliance and side sleeping. I have a fitbit that registers your sleep quality. At first, I thought it was broken, it would not record sleep. Now, it is recording 5-8 hours at night in a stretch. It is a huge difference.

I also take provigil. It is a type of stimulant that helps because I still have a lot of fatigue and I drink coffee. You should qualify for provigil because you have OSA.

Hi, I remember talking to you almost 2 years ago around the time I went for my first sleep study at a sleep lab and you were telling me some of these things. Like I said, I was cpap intolerant. In terms of side-sleeping improving my symptoms, I honestly wouldn't know because I almost always habitually sleep on my side. I am a side-sleeper 95% of the time anyway. I don't believe that using the wedge pillow has helped much at all. There is also really bad post-nasal drip going on (dustmite allergy) and I am 1 1/2 years into immunotherapy. Relatives which have witnessed how I've been sleeping are claiming that my snoring is more quiet (they used to be able to hear me through the floor downstairs in a backroom directly beneath my bedroom in the house. This is since I began using the wedge pillow and after starting allergy shots but I still currently do not have an oral appliance but am in the process of trying to obtain one. That's if I don't oversleep and can get out of the house on time. What type of doctor prescribes provigil?

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2 hours ago, Gearhead said:

Something I’ve found very helpful for testing my nasty TMJ is Flexeril (cyclobenzaprine), which is a muscle relaxant. If you can get your jaw and neck to relax, it’ll help with the migraines.

My oral surgeon prescribed me Flexiril at the end of last year with no refills because he doesn't believe in someone taking it long term. I did physical therapy for TMJ syndrome also and my PT did deep tissue laser therapy at an additional charge (it's currently not covered by insurance). I found that the manual therapy was the most effective except my face, neck, and my jaw were stiffened throughout the entire time I was doing it. Despite this, I was barely getting any migraines at all during this time, although once again, this might have been more related to the prescription Ibuprofen which I take on a consistent basis which is almost like a protection against potential migraines on any day. After the numbness and swelling wore down, the TMJ symptoms sort of regressed again over the past 9 months since my last session with my PT.

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I was nocturnal for many, many years. The only way I became a morning/day person was by forcing myself to get up in the daytime every day until it stuck. It took a long, long time but I now am no longer a night person. You just have to be super consistent and stay up no matter how groggy you might feel or how much you want to lay down. 

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On 12/12/2019 at 5:21 PM, SheltieUnderdog said:

My oral surgeon prescribed me Flexiril at the end of last year with no refills because he doesn't believe in someone taking it long term. 

I don’t take it every day. I take it when I find I’ve gotten into a serious fix with pain and tension, as a rescue med. Usually a few days worth of it will get me back on track, especially if combined with things like hot packs (moist heat) and gentle massage. Would your doc give you a small number as a rescue med? Maybe if you explained you know someone else with bad a TMJ, and she uses it as I’ve just described? 

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4 hours ago, saintalto said:

I was nocturnal for many, many years. The only way I became a morning/day person was by forcing myself to get up in the daytime every day until it stuck. It took a long, long time but I now am no longer a night person. You just have to be super consistent and stay up no matter how groggy you might feel or how much you want to lay down. 

Yes, even if I remain awake through the entire night into the next day, unless if I go out somewhere, I will eventually cave into lying down sometime before 12-noon maybe a little afterward and fall asleep without the cycle being fixed. Like I said, even on nights where I do fall asleep at a decent hour, I will be loaded with a ton of energy the following night and the cycle will again get screwed up. The only time that I was falling asleep at a consistent 11:30pm was when I was on the antipsychotic injections and I have no intentions on ever going back on those by court-order or by my own choice ever again.

I don't know exactly what you mean by a "day person" vs nocturnal but I just want to consistently fall asleep between 1 and 3am or at least before there is any sun. I guess the correct way to say it is that I don't want to be a morning person but I want to be an "afternoon person" and have my first experience be 12-noon, maybe 1pm and onward on a consistent basis. Waking up at 11am at a consistent basis would be more than I could ask for.

And just for the record, I am noticing that taking generic benadryl or diphenhydramine at 50mg is much more effective at getting me to drift off as fast as possible when I wasn't tired to begin with than melatonin ever was. I switched from melatonin to diphenhydramine in the last couple of weeks and it's working a lot better for me despite still being very nocturnal.

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51 minutes ago, Gearhead said:

I don’t take it every day. I take it when I find I’ve gotten into a serious fix with pain and tension, as a rescue med. Usually a few days worth of it will get me back on track, especially if combined with things like hot packs (moist heat) and gentle massage. Would your doc give you a small number as a rescue med? Maybe if you explained you know someone else with bad a TMJ, and she uses it as I’ve just described? 

I could try doing that. You mean as a PRN? Could my primary give it to me because I'd honestly prefer to just avoid going back to my oral surgeon for anything I can get from someone else at this time because I pretty much stopped seeing him after I completed the PT for TMJ?

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