Sleep specialist first visit

[lorraineg57]

So...went to the sleep specialist today who pretty much confirmed what I already knew. The CPAP isn't doing anything for my sleep maintenence insomnia. He said my case was "throwing him a lot of curve balls". My numbers look great, compliance is good (I took sleepyhead summary graphs with me). My pressure levels are good. Pretty much the only suggestions he had were to cut out all caffeine (I've tried cutting coffee out around noon and it made no difference)and stop smoking (I smoke 6-7 a day and he IS a pulmonologist, what else would he say?) He also said the positional therapy would be fine for me if I wanted to go that route.

He is going to have apria set up an oximeter for me for a night to check my O2 levels but I'm pretty sure that's not an issue. My O2 was good at the sleep study. The only other thing he could suggest were a visit to psych for behavior modification? What kind of behavior modification is there for this aside from sleep hygeine? He also offered provigil for the daytime sleepiness. I'm pretty much anti any drug and I'm not familiar enough with that specific drug to give it a yay or nay....OR someone could just figure out why I wake up so much, fix that and then I won't need the provigil!

So, I still know nothing. Hmm...seems to be a pattern here....

[LSAT]

My problem doesn't seem as bad as yours, but occasionally I go several nights where I wake up often. My doctor gave me 10mg
Amitriptyline. At higher doses it is an anti-depressant...at low dose it's good for occasional sleep problems. I only need a half tablet to keep me out 7-8 hours.

[jencat824]

I've used Amitriptyline for around 18-20 years with no visible side effects. I was prescribed for Fibromyalgia, but works great as sleep aid. As for Provigil, my previous sleep dr tried that & I called it a CRAZY NIGHTMARE DRUG - that is for me (I don't want to offend Provigil users). There are probably lots of people who benefit from this drug, I just wasn't one of them.

Sounds like your dr is trying everything he knows, but you might need another level of sleep dr. I noticed your dr was a pulmonologist, my suggestion is you might want to get him (or someone else) to refer you to a neurologist who specializes in sleep medicine. I was originally sent to a pulmonologist for original sleep studies, then referred to neurologist. He found I had several complex sleep issues. That was 12 yrs ago & most of my issues have been addressed and my sleep is good. I have something kinda of rare (Alpha Wave Intrusion Disorder) along with RLS, PLMD, Narcolepsy, OSA, CSA as well as other medical problems that also might impair sleep. You may have other disorders going on that also are affecting your sleep.

You might want to ask your dr on next visit, if you have no improvement, could he send you to a trained sleep medicine neurologist. Or just a neurologist with knowledge of sleep medicine, its not always easy to find a sleep medicine specialist who is a neurologist, but most neurologist are well versed with sleep disorders. My problems were complex because I also have MS, Fibro & a seizure disorder, among other things. I don't want to frighten you, but lots of things can impair sleep other than just OSA. Since you are doing all the right things to treat your OSA, I would want my dr to look elsewhere for other potential problems, not just say I'm a 'curve ball'. Sounds like he is well qualified for OSA, but other sleep disorders he might not see very often. Hang in there, you are doing all the right stuff, just need to push for a dr who can catch the 'curve balls'.
Jen

[gomer]

JenCat...here kitty kitty............ha ha!

Another MSer I read. Which form, RRMS, SPMS or PPMS? I am still long time RRMS. I am on copaxone for a DMD & amantadine for fatigue so far.

I also wake frequently during the nite, not sure if its due to the OSA , PLM or something else.

I had my first sleep study recently and had my follow-up w/sleep doc this week. The verdict is I have mild OSA and PLM. He said my PLM needed medication, and I go for titration study soon. My sleep doc said my MS specialist doc should be the one to Rx something for the PLM. I hope to get everything sorted out before long.

[Todzo]

So...went to the sleep specialist today who pretty much confirmed what I already knew. The CPAP isn't doing anything for my sleep maintenence insomnia. He said my case was "throwing him a lot of curve balls". My numbers look great, compliance is good (I took sleepyhead summary graphs with me). My pressure levels are good. Pretty much the only suggestions he had were to cut out all caffeine (I've tried cutting coffee out around noon and it made no difference)and stop smoking (I smoke 6-7 a day and he IS a pulmonologist, what else would he say?) He also said the positional therapy would be fine for me if I wanted to go that route.

He is going to have apria set up an oximeter for me for a night to check my O2 levels but I'm pretty sure that's not an issue. My O2 was good at the sleep study. The only other thing he could suggest were a visit to psych for behavior modification? What kind of behavior modification is there for this aside from sleep hygeine? He also offered provigil for the daytime sleepiness. I'm pretty much anti any drug and I'm not familiar enough with that specific drug to give it a yay or nay....OR someone could just figure out why I wake up so much, fix that and then I won't need the provigil!

So, I still know nothing. Hmm...seems to be a pattern here....

Hi lorraineg57!

I think you would find the MP3 of this informative:

Expert Interview: Dr. Barry Krakow on PTSD, Insomnia, and Sleep Apnea
link: http://doctorstevenpark.com/expert-inte ... leep-apnea

Listen to the whole interview – there is much good stuff for you near the end.

You may be, as Dr. Krakow mentions, dealing with UARS and it's related CO2 maintenance issues. If your breathing air use increases near the times you awaken you can likely see this in your data waveforms. If it is UARS you may see the waveform tops flatten near the awakening.

Some things you might try right now:

Raise the head of your bed a few inches. For the cost of a couple of bricks from a building supply store why not? I have found it helpful in preventing GERD and believe it likely helps prevent the Rostral Fluid shift associated with OSA. At least one doctor believes it helps reduce the need for PAP pressure. Less swelling in the nose, less OSA or UARS.

Do what you can to reduce stress. This helps keep the breathing air use rates under control preventing CO2 maintenance issues.

Get some good aerobic exercise if you can and when in shape for it some interval training. It is my experience that this keeps breathing air use under better control. It exercises (stresses) the chemoreflexes used.

And do have a lot of fun when you can!

Todzo

[deltadave]

The only other thing he could suggest were a visit to psych for behavior modification?

I believe your best bet would be a board-certified (ABSM) sleep psychologist with credential in Behavioral Sleep Medicine.

[deltadave]

The only other thing he could suggest were a visit to psych for behavior modification?

I believe your best bet would be a board-certified (ABSM) sleep psychologist with credential in Behavioral Sleep Medicine.

Not for nothin', but a "sleep specialist" (per your topic title) would seem to already be versed in ALL sleep issues. Is your guy boarded in sleep?

[lorraineg57]

My problem doesn't seem as bad as yours, but occasionally I go several nights where I wake up often. My doctor gave me 10mg
Amitriptyline. At higher doses it is an anti-depressant...at low dose it's good for occasional sleep problems. I only need a half tablet to keep me out 7-8 hours.

I've grudgingly tried ambien, temazepam and a very low dosage of doxepin. They made me fall asleep faster but didn't keep me asleep. Just made me feel dopey when I did wake up.

The low dose doxepin is actually named Silenor and is marketed at that strength specifically for sleep maintenence insomnia but no love there either.

[lorraineg57]

I've used Amitriptyline for around 18-20 years with no visible side effects. I was prescribed for Fibromyalgia, but works great as sleep aid. As for Provigil, my previous sleep dr tried that & I called it a CRAZY NIGHTMARE DRUG - that is for me (I don't want to offend Provigil users). There are probably lots of people who benefit from this drug, I just wasn't one of them.

Sounds like your dr is trying everything he knows, but you might need another level of sleep dr. I noticed your dr was a pulmonologist, my suggestion is you might want to get him (or someone else) to refer you to a neurologist who specializes in sleep medicine. I was originally sent to a pulmonologist for original sleep studies, then referred to neurologist. He found I had several complex sleep issues. That was 12 yrs ago & most of my issues have been addressed and my sleep is good. I have something kinda of rare (Alpha Wave Intrusion Disorder) along with RLS, PLMD, Narcolepsy, OSA, CSA as well as other medical problems that also might impair sleep. You may have other disorders going on that also are affecting your sleep.

You might want to ask your dr on next visit, if you have no improvement, could he send you to a trained sleep medicine neurologist. Or just a neurologist with knowledge of sleep medicine, its not always easy to find a sleep medicine specialist who is a neurologist, but most neurologist are well versed with sleep disorders. My problems were complex because I also have MS, Fibro & a seizure disorder, among other things. I don't want to frighten you, but lots of things can impair sleep other than just OSA. Since you are doing all the right things to treat your OSA, I would want my dr to look elsewhere for other potential problems, not just say I'm a 'curve ball'. Sounds like he is well qualified for OSA, but other sleep disorders he might not see very often. Hang in there, you are doing all the right stuff, just need to push for a dr who can catch the 'curve balls'.
Jen

I kind of figured the visit was going to be a waste of time since he was a pulmonologist and the OSA is so mild and already being treated. He did say we could try a bipap titration if I'm not tolerating the cpap but I'm really fine with using it, it just doesn't keep me from waking. I did call my gyne again to pick her brain. I tried HRT a few years back which didn't seem to help but since the onset of the problem was exactly when I hit menopause, I still think it may be related. Maybe a different combination of hormones or a stronger strength or something? I'm awaiting a call back there.

The only other med hx I have is MVP but cardio events were not evident at the sleep study.
What kind of testing does a neuro sleep doc do?

[lorraineg57]

So...went to the sleep specialist today who pretty much confirmed what I already knew. The CPAP isn't doing anything for my sleep maintenence insomnia. He said my case was "throwing him a lot of curve balls". My numbers look great, compliance is good (I took sleepyhead summary graphs with me). My pressure levels are good. Pretty much the only suggestions he had were to cut out all caffeine (I've tried cutting coffee out around noon and it made no difference)and stop smoking (I smoke 6-7 a day and he IS a pulmonologist, what else would he say?) He also said the positional therapy would be fine for me if I wanted to go that route.

He is going to have apria set up an oximeter for me for a night to check my O2 levels but I'm pretty sure that's not an issue. My O2 was good at the sleep study. The only other thing he could suggest were a visit to psych for behavior modification? What kind of behavior modification is there for this aside from sleep hygeine? He also offered provigil for the daytime sleepiness. I'm pretty much anti any drug and I'm not familiar enough with that specific drug to give it a yay or nay....OR someone could just figure out why I wake up so much, fix that and then I won't need the provigil!

So, I still know nothing. Hmm...seems to be a pattern here....

Hi lorraineg57!

I think you would find the MP3 of this informative:

Expert Interview: Dr. Barry Krakow on PTSD, Insomnia, and Sleep Apnea
link: http://doctorstevenpark.com/expert-inte ... leep-apnea

Listen to the whole interview – there is much good stuff for you near the end.

You may be, as Dr. Krakow mentions, dealing with UARS and it's related CO2 maintenance issues. If your breathing air use increases near the times you awaken you can likely see this in your data waveforms. If it is UARS you may see the waveform tops flatten near the awakening.

Some things you might try right now:

Raise the head of your bed a few inches. For the cost of a couple of bricks from a building supply store why not? I have found it helpful in preventing GERD and believe it likely helps prevent the Rostral Fluid shift associated with OSA. At least one doctor believes it helps reduce the need for PAP pressure. Less swelling in the nose, less OSA or UARS.

Do what you can to reduce stress. This helps keep the breathing air use rates under control preventing CO2 maintenance issues.

Get some good aerobic exercise if you can and when in shape for it some interval training. It is my experience that this keeps breathing air use under better control. It exercises (stresses) the chemoreflexes used.

And do have a lot of fun when you can!

Todzo

I go to the gym regularly and lift. Well, I kettlebell actually but it's form of lifting I guess. I also run on occasion. Right now I should be at the gym, but I'm procrastinating Everything I do, even lifting is in intervals.

I'll listen to the mp3 this evening, thank you! Which graph would I see that on?

Thanks for the tips and info!

[lorraineg57]

The only other thing he could suggest were a visit to psych for behavior modification?

I believe your best bet would be a board-certified (ABSM) sleep psychologist with credential in Behavioral Sleep Medicine.

Not for nothin', but a "sleep specialist" (per your topic title) would seem to already be versed in ALL sleep issues. Is your guy boarded in sleep?

What exactly is sleep behavioral medicine? I don't understand what behavioral modification for sleep would entail?

I guess he is: "board certified in Critical Care Medicine, Pulmonary Disease, and Sleep Medicine", that's what it says under his profile. I agree that he should be versed in all areas but I'm sure most pulmo's that are sleep specialists are primarily dealing with sleep disordered breathing and not much else.

[jencat824]

JenCat...here kitty kitty............ha ha!

Another MSer I read. Which form, RRMS, SPMS or PPMS? I am still long time RRMS. I am on copaxone for a DMD & amantadine for fatigue so far.

I also wake frequently during the nite, not sure if its due to the OSA , PLM or something else.

I had my first sleep study recently and had my follow-up w/sleep doc this week. The verdict is I have mild OSA and PLM. He said my PLM needed medication, and I go for titration study soon. My sleep doc said my MS specialist doc should be the one to Rx something for the PLM. I hope to get everything sorted out before long.

Hi gomer,
RRMS, I'm on heavy prednisone during each episode & nothing for fatigue, tried copaxone, side effects clashed with some of my other meds. My MS dr & sleep dr are one & the same - my neurologist. Since I have so many medical problems, my neurologist believes treat the MS when he has too, then work on treating each disorder as minimally as possible. He says if sleep disorders are under control, that will help keep the number of episodes down. Seems to work, I average 1-2 episodes a year, some years less/none. Although when they do start, my flares begin in my legs, quickly moving upward. My left side is permanently my weaker side.

My OSA is significant (pressure 19), and other aspects of my sleep disorders are pretty far out there too (sleepwalking, sleep eating, sleep talking, hubby keeps car keys away from me when I sleep, etc). I do take drugs for RH that cross help with the MS & sleep disorders - Plaquenil & Amitriptylline, to name a few. I also go to water aerobics/water therapy twice weekly to maintain muscle/leg control, as well as exercise in hot tub at home, weather permitting. So far that works. I have already had 2 joint replacement surgeries & need 4 more. Keeping my muscles going with minimal drugs is a goal among all my related drs. My CPAP therapy is a large part of helping with that, since if I'm too tired to exercise, I may loose more muscle control. Also, likewise with fatigue.

I do find it puzzeling that my neuro has not picked up on the fact that I'm not getting adequate CPAP therapy from my data, I learned that from this forum thru getting my own data. I am working to contain leaks from my mouthbreathing, which dr has not mentioned. I plan to discuss with him next appt & take my own data with me, so he can see what I see regarding significant leaks. When dealing with MS & OSA, my personal opinion is that optimizing therapy both ways should equal the best treatment outcome.

Good to know I'm not the only MS'er here.
Jen
Meow.....

[Mongo]

My o2 levels were fine at my sleep studies too. A couple months later they gave me a recording oximeter to use for i night and found that my o2 levels were to low. Been oxygen ever since and feel better. My bed is a lot softer then the sleep labs and I tend to prop my head up more in my sleep, I'm not sure if that makes a differance or not.