Sleep study results - now medicated!

[riteoh]

I first saw my sleep study doctor a month ago, and he advised me to start using a CPAP machine straight away, whilst waiting for the results of my sleep study test.

Well, I saw him again today, and he says I have moderate sleep apnea.

The concern I have, is that after using my CPAP machine for a month, I'm still not feeling a whole lot better.

He seems to think I am a candidate for many options - surgery, mouth guard, anti-back sleeping devices..... but for the time being he has recommended that I start using an anti-epileptic drug, to try and calm down my 'leg twitching' which he believes *may* be stopping me from having a good nights sleep. He has also changed my machine to start delivering a fixed pressure - I think he said something about setting it to a level slightly above my highest apnea - or something like that - but it would gradually ramp up to that position.

I'm more confused than ever about all the options, and would love to hear advice from anybody who has positive stories they can share. The medication is called Gabapentin - I'll give it a try tonight with the fixed pressure I guess and see how it goes.

Advice appreciated.

[caffeinatedcfo]

Please complete your profile with machine, mask, prescribed pressure. Do you have a machine that records "full data" meaning you can download it to a computer? If so, posting some graphs from a typical night would give us more to work with.

Were many leg movements noted in your sleep study?

[Pugsy]

There's more to getting good sleep (and thus hopefully feeling better) than just AHI and OSA control.
Leg movements can disrupt sleep and anything that disrupts sleep and causes arousals (even if you don't remember them) will disturb the normal sleep cycles that are needed for good restorative sleep.

One month is really a bit too soon to expect a whole lot of improvement for some people but it isn't too soon to look at additional factors playing a part in sleep quality and thus how you feel. That's what your doctor is doing.
For some people leg movements decrease with cpap therapy and for some they don't and for some they get worse.

I don't have issues with leg movements so not much experience there but I know someone who does and I will bet she will chime in.
I am going to send her a note and make sure she sees your thread.

Do add your equipment to your profile...if you have a full data machine it would enable you to monitor at least the cpap part of your therapy to make sure it is optimal.

[riteoh]

Thanks for the replies guys - it's all very confusing at the moment, getting used to the new abbreviations and what they all mean.

I have a month of data using both Sleepyhead and Encore - and whilst sum of it I understand, until I stop and take the time to digest what all the graphs mean - a lot of it is double dutch.

Signature now completed and added - hope it tells you all what it needs to.

Leg restlessness according to the study was quite severe, with O2 levels at one stage dropping to 82%, and only about 5 minutes of good sleep (don't have the paperwork with me, so can't remember what the definition of good sleep was)

It's bedtime now in my part of Australia, so here is to a good nights sleep!

[Julie]

Hi - quick thing - many people unknowingly become mouth breathers when sleeping and if on nasal Cpap lose most of their therapy that way. If you think this could be a factor, you might want to think about a full face mask that allows you to breathe with your mouth open but not lose Cpap air, or at least try a chinstrap and/or taping for a few nights to see if it makes a difference.

[kteague]

Thanks Pugsy for the "heads up".

Based on the limited information thusfar, I'm gonna go out on a limb and guess your study showed you have an issue with limb movements, probably PLMD (Periodic Limb Movement Disorder). Maybe you'll get lucky and the Gabapentin will help, but it is disappointing if your doctor did nothing to try to address a possible treatable cause. For people with RLS and/or PLMD, seems to be a common thread of a ferritin level in the lower end of the normal range. It is generally recommended for people with these issues to keep their ferritin level above 50. My sleep doc wanted mine to be nearer 100. Some other things to check is magnesium levels and vitamin D. I strongly suggest you do not allow the doctor to put you on any dopamine meds until you have addressed the ferritin. Those who take those meds with low ferritin are thought to have a higher risk of the medication causing augmentation of symptoms. If you do have PLMD, it can make things confusing with your CPAP treatment. Your CPAP may get the blame for symptoms your legs are causing. I suggest you confirm that your CPAP treatment is effective (through data) and persevere no matter how you feel. Switching to a dental device or having throat surgery will not help your legs, so I personally wouldn't want to see you chasing other sleep apnea treatments unnecessarily. Until I got my legs calmed down, I slept horribly and felt even worse. Fortunately from being here I knew how to be sure the CPAP was effective. It is also common for those with PLMD to have a worsening of leg movements once they start on CPAP, since before treatment the legs and apneas shared your nights, and with the apneas no longer competing for wake-ups, the legs are free to more fully manifest.

Let us know what your sleep study actually says about limb movements and their arousals. We can go from there, if it turns out to be a need.

[purple]

What kind of a doctor is helping you with your sleep stuff? What you write does not sound like a sleep doctor. And yes, How u feel is the best indication of success, whatever the numbers say.

Keep in mind in can take, for some, a few weeks before they begin to feel better. What you are saying does not quite sound like that.

[riteoh]

Hi all - thanks for the responses.

Ok - to cut a long story short, the sleep study that I had, was an ambulatory sleep study - so I was hooked up to a series of monitors, told to go home, then return everything the next day. Seemed like a better option to me than staying overnight in Hospital.

I'm not sure what results people like to see, so here is what I think you need to know:

Total sleep was 381 minutes, split N1, 4 minutes, N2 303.5 minutes, N3, 5.5 minutes, REM 71 minutes. (Apparently the N3 is not a good result)

Obstructive Apnea count 41, Hypopnoea 60

Periodic Limb Movement Index - 11.8 per hour
Total Arousal Index (including flow limitation events) 33.7 per hour

Having been on CPAP for around 4.5 weeks now, however, I'm not feeling a whole lot better - I still feel tired and sleepy in the afternoons, and no matter how long I sleep for, it doesn't seem to be any better. It's not severe - just a constant feeling of tiredness.

On the positive side however, the statistics from the machine (viewed on sleepyhead) indicate that my AHI has been averaging 1.57.

I intend to see my doctor to get blood tests done, to see if these indicate anything, but apart from that, I'm at a loss as to what to do.

Any advice, comments, hints any would like to provide would be welcome.

Thanks to you all.

[kteague]

Congrats on seemingly doing well on the CPAP therapy. Be sure to have the doctor do the tests I mentioned above. A few other energy robbers to be ruled out are are diabetes, anemia, thyroid dysfunction, heart problems. That said, I'd hate to see you on a wild goose chase without first knowing how big of a problem your limb movements are at this point. As explained above, if you have PLMD then there's a very good chance they are now worse than what that 11.8 index reflected. How many of those movements does the report say caused arousals?

A couple options now - maybe your doctor would order another overnight test to see exactly what your legs are doing while on your therapeutic CPAP. Short of that, video taping yourself during sleep could give you an idea how your legs are looking. If you wait on trying a med, seeing how you feel, adjusting the med, seeing how you feel, switching meds, seeing how you feel... lots of time could pass with you feeling miserable. I've been down this road. If the blood tests indicate a low ferritin, work on getting it up just in case that helps. You may want to try other meds once your ferritin is up. A problem I had with Gabapentin was it caused me to feel sleepy and not sharp. Not a side effect one needs when being treated because of being sleepy and tired.

All that said, 1 month in is not a long time in the big scheme of things. You may yet make gains just treating your sleep apnea. For what it's worth, I treat my PLMD with a TENS Unit. Spent about 10 years on various meds with some periods of a degree of relief. Have used only the TENS for about 3 years now. There is relief to be had, so don't give up on one day feeling better.