Need Some Suggestions, Please!

[need2snooze]

When I was diagnosed with OSA four years ago after complaining of being tired all the time and having daily morning headaches (in addition to the migraines I was already being treated for), I thought I was on my way to feeling great. True, the morning headaches disappeared. But although I consistently use my CPAP and definitely notice a difference if I don't use it, I'm still waiting for the feeling of being refreshed, energetic, not needing a nap, etc. My neurologist/sleep dr. has been great in listening to my theories and suggestions, and I've tried most everything she has suggested, but quite frankly, I'm frustrated. I don't sleep through the night at all. I can be dead tired when I go to sleep but will wake up after three or four hours. I may or may not go back to sleep. If I'm lucky, I may get a total of 6.5 hours of sleep/night. That's if I'm lucky. That's not enough for me.

I invested in a Zeo. My typical score hovers around 45-50. I thought the Zeo wasn't working right until I had my teenage son try it for a night. His score was 118 with no "Awakes". I routinely have 6-7 "Awakes". Deep sleep runs about one hour or less/night. I've done everything I can think of with regards to sleep hygiene, food (pretty much only eat meat, veggies, fruits b/c of the migraines), and no caffeine. I have an appt. with my neuro/sleep dr. Wed. a.m. and am needing some ideas.

I had full bloodwork done a couple of months ago by my internist. Also my neuro routinely checks my bloodwork b/c of the Topomax I am taking for my migraines. Because of some high creatinine levels, the neuro suggested I see my internist. My internist wasn't concerned about that when she tested me. Also, my GFR was 59 (technically, Stage 3-chronic kidney disease). For my age (54), it should be a lot higher than that. Again, my internist wasn't concerned. I will show my neuro/sleep dr. those test results as well on Wed. My neuro did test me for thyroid about six months ago in looking for why I can't sleep through the night. Test results were within range. My CPAP numbers are to die for, always well below 1.0. Blood pressure is usually 100/55 or lower. I'm 5'4, 115 lbs. I know I do have PLMD, but really, could that be waking me up every night at the same time?

Does anybody have any ideas, any experience with how to sleep through the night? Thanks for reading.

[RT4SLEEP]

It is possible that your PLMD can effect your sleep depending on it's severity. It is also possible for someone on CPAP already to have additional problems. Narcolepsy, hypersomnolence, etc. It may do some good to discuss with your Dr. about doing a FU CPAP titration, starting at your current pressure and only titrating up if needed. Then follow by a Multiple Sleep Latency Test (MSLT) which is a series of 5 nap sessions with two hour intervals between each one. You would need a two week sleep diary prior to the MSLT. If anything it can help rule out other causes for your symptoms. I wish you luck and keep us posted on what you and your Dr. decides.

[need2snooze]

Thank you for your suggestions. Several months ago I asked my dr. about the possibility of having another sleep study done. She said I didn't need it since my AHI numbers were so good. I wonder if that means she couldn't justify the cost to the insurance company?

[kteague]

If you are already diagnosed with PLMD, I'd think getting more specifics would be high on the priority list. Neither another diagnostic study or re-titration starting from scratch will give you exactly the info you need regarding your legs. Good luck getting your doc to agree to this, but if your CPAP data shows your treatment is effective, a sleep study with you using the machine at your usual pressure is the best way to see exactly what is happening with your legs at home. That would show how many arousals your legs are actually causing. An MSLT may yield new information but they are not advised until any sleep disruptors have been addressed or you will have excessive sleepiness due to broken sleep, not necessarily narcolepsy. You are supposed to meet certain criteria of sleep for the overnight portion of the test before doing an MSLT, or else it's like trying to get a clear picture through a dirty lens.

Do you have copies of your prior studies? Just wondering what they said about the PLMD. If you take this concern to a doctor, there's a good chance they will want to try you on some meds and "see how you feel". I would just like to suggest you #1 Be certain there is even a need for treatment of the movements. #2 Research things you can do on your own to try to help your legs. Hopefully your ferritin level was already checked and is above 60 and your magnesium and Vit D are ok. If you do end up on a dopamine agonist, current wisdom says getting your ferritin level up before starting the med could lessen the risk of problems with augmentation.

Sorry to dump so much so fast, I just know I've got a busy few days coming up and might not get back to another reply as it develops. Use what you need - disregard the rest.

[JDS74]

PLMD can cause disturbed sleep. It's a neurological disorder so seeing your neuro doc is a good start.
You didn't say how you got the diagnosis but the only medical way is a sleep study. That may be enough to justify getting another one done. There are a variety of specialized tests that can identify treatable causes.

BTW having test result within range doesn't mean the results are normal for you. The range limits are usually +- 2 standard deviations from the mean for the test. So if your value is close to one of the range endpoints, then about 95% of people get a result less than yours (assuming your result is at the high end)

I do the waking up thing without a diagnosis 2 to 4 times each night. Fortunately I can usually get back to sleep. The best guess is a really tiny neuroendocrine tumor that is too small to see on any scan. Good luck at the docs tomorrow.

[jencat824]

There are medications for PLMD, but if you can treat it with natural methods, that is best. So far, it sounds to me the PLMD may be waking you every few hours. Are your bed clothes tangled & all over the place/on the floor? Do you sleep with a partner who says you kick? If you answer yes to these questions, it probably is your PLMD waking you.

Your GFR is about the same as mine (stage 3 kidney disease), so what you take needs to be approved by either your internist or nephrologist, whoever is monitoring your kidney disease. I am on Mirapex & that seems to help, I am also on Klonopin, but I DO NOT suggest letting drs put you on the Klonopin, unless it is a last resort. Klonopin is a benzo & hard to get off of. I am on it for seizures, started on it for PLMD & migraines. The Mirapex is what worked for that, but after finding something else that worked, I was taken off the Klonopin, only to be put back on it a few yrs later for seizures.

Whatever drug they may put you on, research it carefully & see if it can be used short-term, or if it is a long-term drug that will be with you for life. Then you can decide if the benefits outweigh the side effects. Since you have kidney disease, drs may be uneasy about prescribing anything for the PLMD, but your chasing your tail on that. If you don't treat the PLMD you won't get quality sleep, which in turn is harmful to the kidneys. See what I mean about chasing your tail?

Anyway, you do need to plead with your neurologist to treat the PLMD or to help you with a natural solution, so you get quality sleep. Lack of oxygen in sleep damages the internal organs, so this won't just 'go away', it needs to be addressed.

Let us know how it goes with the dr.
Jen

[need2snooze]

My PLMD was diagnosed in my sleep study 4.5 years ago: "PLMD - Moderate (32.hr), Limb Movements Arousal Index (3.06/hr)". This was the first night, w/o CPAP. The second night, with CPAP, the PLMD (26.0/hr)., Limb Movements Arousal Index (2.43/hr.). My first sleep dr. didn't really do much of anything regarding my sleep apnea treatment, I'm sorry to say. When I moved and found the doctor I am currently with, she switched me to the S9 and has really tried to figure out what's going on. My husband doesn't notice me kicking, unless I'm kicking him to stop snoring. Six months ago my ferritin level was 34, but with the addition of an iron supplement, I have recently gotten it up to 48. Vitamin D level is 40. Iron is 90, up from 51.

[kteague]

Are you continuing to try to get your ferritin level up a bit more?

Your results in the lab may or may not be a full reflection of how your legs are during sleep at home on CPAP. In the sleep clinic for titration some of the night is spent getting up to an effective pressure, and sleep is not always the same as at home - all the wires, strange equipment, sounds and sensations aren't conducive to good sleep. PLMD movements can be as small as just a repeated flexing of the big toe all the way up to wild flailing.(Have you seen my video in my link?) A person whose movements aren't very pronounced could escape detection by a bed partner, especially if that partner is a sound sleeper and/or goes to sleep first.

I know this may sound way out there, but one time I sprinkled powder all over the foot of my bed and layed down to nap for a while (no covers). That was before I videoed myself - I was pretty desperate to know what was going on. Anyhow, I got up the moment I wakened to check out the bed and found evidence my legs were doing a lot of moving I wasn't aware of.

Good luck as you go forward and figure out how to handle this.

[need2snooze]

I like the idea of videotaping my sleep, as opposed to sprinkling powder at the foot of my bed I saw my sleep dr. yesterday and she said that I could try another 45mg. supplement of iron in an effort to get the ferritin level up higher from 48. Previously, it was at 32 before I started the first iron supplement. She really didn't seem to have too many other ideas. Sometimes I think that this whole area of sleep medicine is rather like taking a stab in the dark. You just try something and see if it works. If it doesn't, then you try something else. No one really knows for sure...

[Janknitz]

Have you considered dietary changes? People are reporting near miraculous "cures" for migraines and other conditions by eliminating grains from their diets. You'd know within two weeks if its helping you or not. It doesn't cost much, no side effects, either.

[need2snooze]

Dietary changes have been a huge factor for me. A few years ago, I eliminated preservatives, soy, wheat, rice, dairy, gluten and anything I cannot read from my diet. It made an immediate difference, but I still wanted to completely eliminate the migraines. Just three weeks ago, I finally eliminated all added sugar in my diet. I've had only one migraine (and a very short one) since. My internist told me that she, too, cannot eat any sugar b/c of migraines. Now, if I could just find the fix-all for my interrupted sleep.

[tbhit]

Hello,

Maybe you could talk to your doctor about Ambien CR or Lunesta? I hope you can start feeling better.

[need2snooze]

Thanks, did try Ambien and a couple of others, but not much success. I'd really like to try and find the source of the interruptions, so I'm working on that angle. Looking at anything and everything.