Doctor visit yesterday -- a couple of issues

[needzzzzs]

After almost a year on CPAP, I'm still having a few issues, although in general I do have more energy and feel better.

However, I''m still waking up at least once a night (more often too), and I'm having what appears to be REM sleep behavior disorder -- some yelling/other vocalizing and some limb movement. This seems to be worse (more frequent) since I started CPAP.

So after doing some research on my own (I'm a medical librarian), I went to see my sleep doc yesterday.

I had already determined that the Effexor I've been taking for 13 years (originally for depression, but it has "cured" my IBS) interferes with REM sleep, and can cause vivid dreams and be the cause of the REM sleep behavior disorder symptoms. I've been thinking about weaning off it (or at least cutting the dose) to see if I can do better with less or without it (it does have some other adverse effects for me, like some taste/smell problems and loss of sex drive), but this turns out to be one of those antidepressants with the worst withdrawal symptoms, so it's not an easy task. Would like to hear from others who have gotten off Effexor how you did it.

The other issue is caffeine, which he recommended I eliminate from my diet. I don't really want to do this, since I love my morning cup of good coffee, and my afternoon cup of tea, but I'm a slow caffeine metabolizer (did one of those genetic tests and found this out recently), so I guess I'm willing to try (or at least cut back). Again, would love to hear your best schemes for dropping caffeine.

If I do both of these things, and am still having these issues, then I'll do a full-fledged sleep study to see what else might be going on. I know that REM sleep behavior disorder that doesn't have other causes is often a harbinger of some neurologic problem, and my dad did have Parkinson's disease, so I'm a little worried about that possibility.

In any case, thanks (as always) for comments/help, and I wish all of you who are celebrating Thanksgiving a wonderful day with whoever you are sharing it with! I'm very grateful to be part of this community -- have learned a lot from all who comment.

BTW...totally off topic -- but I've been watching The Sopranos, and in the episode I just watched, Uncle Junior gets fitted with a CPAP mask.

Debbie

[RocketGirl]

Good luck with it all! I hope you get some answers. I'll confine my answer to reducing caffeine, since that's the only part of your questions that I have experience with. I used to be one of those who could sip coffee all day long with impunity, but after years and years I did get to the point where I would get a headache if I skipped my coffee, and I didn't like that.

I didn't want to give up my favorite drink entirely, though, so what I did was to wean myself down to two cups per day (both in the morning), and also to very gradually mix water-processed decaf with regular ground coffee and then brew as usual. The first month I just used a little bit of decaf. Second month, the mix was about 1/4 decaf to 3/4 regular, and the third month, the mix went to half decaf, half regular. I don't remember exactly but I think I stayed at that level for a few months.

For me, the taste of the coffee is really important, and decaf just doesn't have as good a taste IMHO. The lowest I was able to take the caffeine level without ruining the taste was 1/3 regular, 2/3 decaf, and that's the mix I still use.

Overall, I took a good six months to make the change. At two cups of this mix per day, I'm getting the caffeine equivalent of less than one cup of regular coffee, and that seems to work for me. At this level I can go without coffee whenever I don't feel like having it, with no repercussions.

Of course it's a slippery slope back to mega coffee intake for me - especially if I go to an all-day meeting where the coffee urn sits invitingly there at the back of the room aaaaalllll day...

[yeti]

I have RBD also. I was told in women it does not seemto link to Parkinsons like it does in men and is not so dramatic. Klonipin controls it completely for me but also decreases stage 3 sleep which is a huge issue for me. I have not been on effexor but have weaned off other antidepresents very slowly. first make sure your doc and family know so they can be alert for concerning changes. then par a tablet to take off a quarter dose every three days for about a week and then every other day for about a week. then daily for a week, then do the same with a 1/2 dose, followed by a quarter dose. very, very slow. worked for me..

[Hose_Head]

I've been on cpap now for almost 4 years. While I did feel a little better almost immediately, low energy and sleepiness persisted. What made a big difference was retirement. After I retired, I was able to sleep in in the mornings, and I started to get more sleep. While I only got about 7 hours (or less) per night when I was working, I now average about 9.5 hours. That extra sleep makes a big difference and I now feel rested. Makes me wonder how many of us complain about daytime sleepiness and assign that to ineffective cpap therapy when the real problem is not hitting the sack early enough each night.

As for caffeine: I recognized decades ago that I was unable to tolerate any caffeine intake after 12 noon. I don't limit my coffee in the mornings (I drink about 12 oz each day), but rarely will drink it (or other caffeinated beverages) after noon. Works for me!

[needzzzzs]

Thanks for sharing your experiences, dear fellow CPAPers!

With regards to weaning off caffeine, I just purchased (online, so haven't received), the Zeo mobile so I can see what's happening with my REM sleep relative to caffeine intake. Hopefully that will let me figure out how to have my coffee/tea without messing up my REM sleep.

With regards to getting off Effexor, I know it has to be done *very* slowly and carefully. Believe me, I don't want to trigger all the nasty withdrawal effects if I can help it! As I think I said before, I'm not sure I want off it entirely, because it does control my IBS, but if I can take a smaller dosage and still control those symptoms, I'll be happy. Most of the antidepressants apparently do have an effect on REM sleep, but Effexor is, according to my sleep doc, one of the worst. Who knew that (when I was first put on it)? Actually, a lot wasn't known or talked about at that time -- one of the problems with being treated with any new medication. Despite clinical trials and testing, it's not until a lot of people have been taking a drug for a while that some of the adverse effects become known. Essentially, if you take a new drug, you are still in the testing process, whether you realize it or not.

Anyway, I'll keep you posted on how all of this goes. Thanks again for sharing your experiences!

[Mitch40]

zzzzzzs:
What doseage of Effexor are you on? And is it the regular release or XR(extended?). I was on the Effexor XR 75mg for about 1.5 years. Decided to get off it cause due to the medicine raising my cholesterol and BP. Those were known side effects. Once I weaned off the Effexor my cholesterol went back down to normal. Not to scare you, but withdrawing from it will be hell, but to lessen that , wean yourself off very slow. You will still get the brain zaps, etc. I went down to the 37.5mg tabs for about 3 weeks, then took one every other day, then every two days, every three days, etc. until the major symptoms were gone. When I was off completely, I still had some withdrawal symptoms but were tolerable for about a month later. I've read some people actually take the pill apart and "measure " out the powder every day using less and less of it. Good luck weaning off. I'm glad I did!!

[retrodave15]

Getting off Effexor - good luck. I tried and failed. Switched over to Celexa which went ok. Doc had me slowly lower the Effexor dose while slowly increasing the dose of Celexa over the course of a month. I found the side effects of Celexa were much worse than the Effexor and I was having better results on the Effexor. So I switched back knowing how hard it is to come off it.

Dave

[BlackSpinner]

My daughter was on exfexor and quit cold turkey. It was really hard on her. She was basically dysfunctional for about 2 weeks or more. Since she wasn't working (one of the reasons she quit $$) she basically zoned out for that time. She had tried gradually before but found it much too irritating.
I would not recommend it.

You may find that now you are on cpap you might not need it. OSA is linked with depression and anxiety.

Regarding caffeine, once I was on cpap I found I was limited to one cup in the morning, anything more, like the 4-5 cups I used to drink, and I couldn't sleep.

To find good decaf coffee you need a good coffee supplier/roaster. Most of them think the decaf should equal weak. I look for a good quality dark roast decaf. If I can't find it I mix in decaf espresso to give it more oomph.

[howkim]

To find good decaf coffee you need a good coffee supplier/roaster. Most of them think the decaf should equal weak. I look for a good quality dark roast decaf. If I can't find it I mix in decaf espresso to give it more oomph.

I just make mine twice as strong as the directions call for. Since I like strong coffee anyway, it's not a problem.

[avi123]

and my dad did have Parkinson's disease, so I'm a little worried about that possibility.


Debbie

Yes, I know it that those with Parkinson's do vocalize their REMs, sometimes quite LOAD, especially when it's a nightmare.

My question: should they be awaken when it happens?