Care to brainstorm anyone?

SAG - that was a surprise seeing my graph! thanks for finding it. I totally get the problems with the sleep study and the ambiguous results. I do know for sure that my throat seals shut quite abruptly when I fall asleep on my back - it makes an audible sound - my husband and massage therapist witness it.

That's an interesting quiz. I score a 37 which I'm guessing is a bit above 'normal'. I think maybe my problem is that I am hypersensitive at this point - didn't use to be - so that just the slightest collapse while I'm on my side causes my brain to freak out and arouse. So no desats happen. That's my very non-expert opinion.

I do need a titration study though. I really hate to say it. Simply to see if I still have arousals even when using CPAP. The sleep efficiency was a total anomaly. I was freezing, it was noisy, too bright, the bed caused me terrible hip pain, etc. etc. and I couldn't fall asleep in the lab.

In all honesty I don't have a lot of confidence in the lab I went to. Because I was on my back. I made sure to do that frequently when I woke up so they could capture that data.


Thanks everyone for the ideas. I'm printing them all out. When I see my doc next I'm going to ask about having another study. Jenny

StillAnotherGuest wrote:I think you should go back and get another all-night diagnostic PSG, and if that shows SDB, then have an in-lab titration done.

In review of your study that was originally posted on the other board:

jrgoo27 Study

The PSG was at the least inadequate (there was no supine sleep, and that was your concern going in) and the available data made any diagnosis of SDB questionable (the oxygen desaturation graph is as steady as a rock, the snoring history is questionable and the flattening statistics which might support the diagnosis of UARS are not particularly strong either).

If after CPAP titration you still have all those arousals, then you really have to consider if there is an SDB component at all.

That said, the UARS/Functional Somatic Syndromes are very closely related, so you really have to be clear on the UARS thing, and if it's in there, then it has to be addressed. Were they using pressure transducer to look at the respiratory events? I would think so, there's no way to come up with flattening statistics if they weren't, but you hafta ask.

This might be a case where you have to get out the esophageal balloon (yeah, I know, the light sleep thing. But, hey, it's been over a year, and it's apparent that you're not where you want to be).

UARS And The Kitchen Sink

If not, then devote the attack to the FSS.

I assume you're still on the thyroid medication. What time of day are you taking it?

If after all this time you're still running 50-70% sleep efficiencies, then it's time to see the Behavioral Sleep Specialist for an attack on the insomnia, which would include Cognitive Behavioral Therapy.

Wanna take a test?



SAG

i take all my thyroid meds in the morning b/c if i take them later in the day, you guessed it, they keep me awake.

also - i'm kind of a poster-child for mild to moderate HPA axis hypofunction. i bet this is related to the hyperarousal...and UARS and fibro. definitely a constellation here. i just find it hard to believe that my sleep doc hasn't encountered my type before and can't tell me what needs to be done.

j

Hi Jenny,

jrgood27 wrote:hi sleepysandy - i wake up between 5 and 10 a night and wake up around 4 or 5 am with the CPAP.

i do find the masks uncomfortable. some more than others. they hurt after awhile. other issues are noise - the swift for e.g. is very loud and not fitting right/leaking. i'm going to order a soyala.

i'll be honest i've only ever gone 2 weeks straight trying it. lately i can't seem to put together 2 nights in a row. my pain is much worse when i sleep poorly. so last night for eg i just could muster the will to use it. ironically, if i can get this straightened out it will help my pain. maybe i need a leave of absence from work to give it a solid go.

i had never heard that about benadryl and sleep fragmentation. thanks for passing that along. for sure it makes my mornings foggy. but i don't start work until 11:30 so it's a side effect i don't mind. but sleep fragmentation doesn't sound good, that's for sure. thanks so much for your help

Wow. 5-10 times a night. It's a wonder you're functioning.

It does sound like you have several different things that are making the CPAP side hard for you.

The masks are uncomfortable - that could wake you up. I know when I tried the Hybrid the nasal pillows hurt so much I couldn't make it through the night (my nose doesn't like nasal pillows at all).

You're a sensitive sleeper and maybe 2 weeks really isn't enough to get used to the changes to your sleep environment. You truly might get used to the noise over time. I'm really sensitive to light and pre-CPAP slept with an eye mask to block out all light. I wear a FF mask so an eye mask is not possible. It took time but the light isn't a problem anymore.

So, the CPAP and it's accessories could be waking you up.

Then there's all of the stuff SAG mentioned about your sleep study and needing a titration study.

I think you definitely have a lot of things to talk to your sleep doc about. And, if you didn't like the first lab, talk to him about a different one.

Keep us posted.

Sandy

P.S. I still can't find any documentation on the Benadryl. I do really trust my psychopharmacologist so I'm not going to take Benadryl, but I wish I could find something concrete about the sleep fragmentation.

SleepySandy wrote:I still can't find any documentation on the Benadryl. I do really trust my psychopharmacologist so I'm not going to take Benadryl, but I wish I could find something concrete about the sleep fragmentation.

I don't know of any studies that show objectively how diphenhydramine works in sleep. There are subjective reports. Because of the widespread use of diphenhydramine as a sleep aid, though, you're going to get a few opinions on this. Here's a couple.

From the American Academy of Sleep Medicine

Antihistamines
“Histamine” is found in the brain and helps keep you alert and awake. An “anti”-histamine crosses over into the brain and makes you sleepy. Many people take an antihistamine when they have a problem with allergies. In addition to helping treat their allergies, it is also known to make them very sleepy. You may not be sure if your allergy or cold product contains something that can make you sleepy. Ask your doctor or pharmacist in order to be certain.

Antihistamines are the most common ingredient in sleep aids that you can buy at a local drug store. Some versions used include the following:

Diphenhydramine hydrochloride (also called Benadryl®)
Diphenhydramine citrate
Doxylamine succinate (may be in some cold formulas such as Maximum Strength Nytol® or Unisom®)
Triprolidine hydrochloride (may be found in allergy or cold medications such as Actifed®)
Studies of how antihistamines help people with insomnia have looked at the way patients report the following:

Their ability to fall asleep and stay asleep
The number of times they wake up after falling asleep
Their total sleep time
The quality of their sleep
Results show that antihistamines do help patients sleep better. The studies included a control group who took a placebo. The placebo was only a sugar pill with no real medicine. The group taking the placebo did not sleep better. The studies covered only one to two weeks of use. The most common side effects included the following:

Drowsiness
Grogginess
Tiredness
Dry mouth
Weakness

CONCLUSION:
Patients do say that antihistamines help them sleep better. This effect is mild, but positive. Side effects, such as drowsiness during the day, can be common and severe. The effectiveness when used over time has not been studied. These medications may affect the activities of patients the following day. This may lead to other problems.

From James A Rowley, MD, Associate Professor, Department of Medicine, Wayne State University School of Medicine, Medical Director of Sleep Disorders Center, Division of Pulmonary, Critical Care, and Sleep Medicine, Harper University Hospital in an eMedicine article

Common OTC antihistamines (eg, diphenhydramine, hydroxyzine) are not indicated for the treatment of sleeplessness. Antihistamines are the major ingredient of OTC sleep aids and are the ingredient in cold and sinus formulas sold as bedtime-use medications. While H1-antihistamines have sedative effects in healthy individuals, no study has established a dose range over which the hypnotic effect is effective in patients with insomnia. Thus, their regular use in individuals with insomnia is not advised. These agents may have some subjective benefit, but long-term efficacy has not been demonstrated and they are not recommended.

The problem with Benadryl is it's half-life, which is basically who the heck knows, but probably in the neighborhood of 9 hours.
SAG

SAG,

I took the Hyperarousal Scale test you posted and scored a 44. Oh, great, one more thing to fixate on at night when I am trying to go to sleep -- LOL.

Jenny,

My sleep doc has prescribed Lyrica for me. It is a medication used to relieve nerve pain of pheripheral neuropathy or shingles. I don't have either of those, but it is being used off label by some physicians to help with deep sleep. My primary care physician agrees that it is worth a try for me. The doc started me on 25 mg. and ramped me up to 75 mg. at bedtime. Unfortunately, it does not make me sleepy and it does not necessarily keep me from waking up several times. However, I do think that it has improved the quality of my sleep during the periods that I am asleep. So I am going to keep using it for awhile to see what I think in a few more weeks.

I am not recommending the medication or vouching for it. I haven't used it long enough to have a strong opinion yet and I am not a healtcare professional. Just saying it might be something for you to discuss with your physician. You can read what the pharmaceutical company Pfizer says about its product at http://www.lyrica.com.

Janna

Have you tried sleeping on your SIDE? I'm still struggling at controlling Apneas in a Supine position, but have found that side-sleeping gets me down below AHI = 10.

Bob

Going back to your original question-who knows-experiment. Sleeping in a recliner helps me. Look online at Giam at their set of pillows that simulate a massage table-you can lay them on the floor or bed. Nasal pillows would fit in the face opening. If you decide to try it-make sure you have enough support under your abdomen to relieve stress on the lumbar area.

Thanks everyone for you replies. Sandy I did a search on the Benadryl and sleep fragmentation and didn't find much either. I'm pretty good at lit. searches too. I did find sources saying it caused REM supression, but could not locate original research articles that pointed to such. You think your pharmacologist could point you to some studies? I'm really curious about it. At this point it's made the quality of my life so much better, that I'm going to keep taking it.

Krousseau - That Gaiam massage pillow/mat thing is exactly what I was imagining. So someone already invented it! Thanks! It'd be an expensive gamble. (Kind of like the Sona pillow, sigh) And there is still the congestion problem.

Jenny

JZ wrote:I took the Hyperarousal Scale test you posted and scored a 44.

jrgood27 wrote:I score a 37 which I'm guessing is a bit above 'normal'.

Which questions, if any, did you guys score 3's?
SAG

3's on any given line? If so, what's that mean SAG?

cflame1 wrote:3's on any given line? If so, what's that mean SAG?

Yo, cflame1! This would be a great test for you. Let's see if your PSG and MSLT results support this assessment, what's your total score and where are all the 3s.

In answer to your question, there's a bunch of ways the answers are compiled, including specific questions linked to specific entities (like primary insomnia) and analysis of some subsets of questions. Some of it may be copyrighted, I'll have to check on that.
SAG

SAG, my only 3s were 5, 10, 17

OK, no help there. And you're right, a HAS score of 37 is basically a high normal.

Don't forget the other points about UARS:

In Our Last Episode

If you go back for a repeat study, you really need to look at everything without CPAP, especially supine sleep, and supine sleep while in REM (although your PSG only reflects lateral sleeping, SDB in REM doesn't get any worse, it perhaps gets the tiniest bit better. REM needs to be closely scrutinized). Make sure they are using technology to properly assess UARS, which at the bare minimum will be pressure transducer to measure airflow.

If you decide to go the medication route, that variable will have to be carefully factored in because of an important concept in SDB, namely, instability perpetuates instability. The Wake - Stage 1 - Stage 2 transition, when kept in flux by arousal from any source, makes the airway inherently more unstable, and the likelihood of respiratory events increases. Once one makes it into SWS (or at least stable Stage 2), this instability lessens. You can see in your own PSG how the respiratory events disappear during SWS (Stage 3/4).

Anyway, if you take a sleep aid that changes your arousal threshold, and consequently stabilizes that light NREM transition state, then you might see considerable improvement in your SBD, so we'll have to keep that in mind.

Alpha intrusion! Ask about alpha intrusion!
SAG

SAG,
Ok... I think that this one was for me... dunno what it means though

I got 62
3's were all over the place
4,5,6,9,10,11,12,13,15,16,17,19,20,21,22,25,26

Hey, cflame1! The Hyperarousal Scale was devised by Regestein et al as a tool to help evaluate Primary Insomnia (insomnia without a known cause). The insomnia group posted a mean score of 48.9, with the questions 4, 5, 14 and 16 frequently receiving the "Extreme" rating. What it basically says is, you're going 90 miles per hour, all the time, and while that can severely affect sleep quality, people are still able to get through the day.

Yeah, 62 is way the heck up there, and continues to support all the stuff we've been saying about needing to address insomnia in a big way in your case. Interestingly, it also offers explanation as to why in spite of abysmal sleep efficiencies noted in your sleep studies, daytime sleepiness as noted by MSLT is non-existent and your Epworth Sleepiness Score (at 8 - 12) is also less than one would think given your sleep quality.
SAG