Sleep study results

Hi all,

I finally met with my neurologist about my 24hr EEG (I've had several seizures while sleeping, controlled with medication) and my sleep study. The EEG didn't show anything except some PVC's on the EKG monitoring - I'll be going to a cardiologist soon to follow up.

The sleep study was as I feared, no apneas, etc. and only 2 hypopneas. AHI was 0, RDI was 0.3. The only thing it showed was that I was fairly active with Periodic Limb Movements - 89 total, 42 arousals, PLMS index of 11.2 (abnormal) and the PLMS arousal index was 5.3 (abnormal).

It said my Stage N1 sleep was 10.8% and was increased due to sleep fragmentation. REM sleep was 10.7% which was decreased. The other Stages, 2 and N3 (SWS) were normal as was sleep onset time.

So, now it looks like I've got something new to look into, this Periodic Limb Movement stuff. I've already done some research and it's not looking to promising, sigh. The neurologist even gave me a prescription for clomazepam (Klonopin) and I took 1 last night to see if it would help . . . let's just say I doubt I will be using it again, as I could barely get up after nearly 11 hours of sleep and I'm still fighting off drowsiness 5 hours after that! I can feel that way without any drugs, thank you, and it wouldn't last quite this long.

You all seemed like such a great group and I was definitely planning on joining in if I got diagnosed with apnea. I will probably just pop in from time to time now.

Firefly (Heidi)

You might want to contact forum member kteague. She has first hand experience with PLMD that was/is really significant.
She won't mind....send her a private message.
memberlist.php?mode=viewprofile&u=5578
also in her signature is a link for her sleep dancing video...go watch it. She video taped herself asleep. It's an eye opener for sure.

She will have a lot of ideas that you might try besides doping yourself up with the Klonopin.

I too have PLMD, which was considered severe, with mild apnea. Sorry your experience was rough. I've had my share of bad experiences with meds as I have quite a few chronic health problems. Klonopin is no longer considered a first line treatment for PLMD. Its not the type of med you want to be on long term if you have any other options. It is much more common to try Dopamine Agonists, such as Mirapex and Requip.

If those aren't helpful or tolerated, then meds such as Gabapentin or Benzos (like Klonopin) could be tried. Some get relief from other therapies such as a Tens unit. I'm on Gabapentin and it reduced my limb movements and associated arousals significantly. Hubby realized only afterwards how much my poor sleep had been affecting him. Neither Mirapex or Requip was good for me as they caused daily migraines with even a tiny dose, but many will tolerate one of them quite well.

Agreed that kteague may be particularly helpful. I messaged with her a few times after my PLMD diagnosis. I hope you find a successful treatment and your symptoms decrease. PLMD can cause quite a few daytime symptoms, due to the frequent arousals preventing deep sleep, just like apnea, so its definitely possible this is causing or at least contributing to your symptoms. Best wishes.

Your PLMD numbers look a lot like mine. I just started on Pramipexole ER as a med of choice. Not sure how things are going as I don't have the most recent sleep study results that will give me a new set of numbers.

Hang in there, its treatable and likely does contribute to your daytime symptoms.

Thank you all!

I've PM'd kteague as suggested.

I won't be taking any more of that Klonopin - I ended up taking another nap late this afternoon and I'm still tired (whole body tired, ya know?)! Plus my friend was talking to me a while ago and said it looked like part of my face was a bit swollen and when I looked in the mirror, I think she's right. Sigh. That medicine is the only thing I've done different.

Thanks for sharing your experiences. I will be checking out those other meds. Not sure why the neurologist gave me the klonopin if it's not the most forefront med for this condition.

Thanks again,
Firefly

Different doctors have different opinions. Awhile back it was probably more commonly used for PLMD, but things change, and now the Dopamine Agonists are considered safer and more effective. Plenty of folks get helped by their PLMD by Klonopin though. Sometimes doctors hope to get multiple effects from a single medication, such as if the patient also complained of other symptoms that could be helped by it.

I wish more doctors would explain in detail why they are prescribing a specific medication and their hopes for the patient with it (such as how they would define success). Too often its just a try this pill and push you out the door sort of thing. I hope you're able to get back into the doctor soon to discuss other treatment options. If they don't prove helpful, don't hesitate to find another one. Do they specifically specialize in sleep medicine? Best wishes.

Did somebody call my name? And I got the PM's. I'll try to reply here in case someone else is interested in the conversation, but do feel free to PM me. Been busy lately and might miss some things on the board. Family members have a big project wrapping up (grandson putting out his first music EP) so it's been all hands on deck.

Firefly, if you've read any of the previous threads on this topic, you've probably already read that I usually suggest making sure you're not deficient in any of the things people with PLMD have said was an issue for them. I can't vouch for anyone's experience as being scientifically sound - even my own. But I don't think it's off base to suggest you have your ferritin level checked and make sure yours is in the upper end of the normal range. From what I've been reading lately seems some people's doctors are suggesting it even being up to around 100. That was my doctor's advice also. it's also a frequent refrain to make sure your magnesium and Vitamin D levels are good. Maybe it will turn out you have some sort of deficiency that correcting will help with your movements. You might try a warm foot soak before bedtime, and a pillow between your feet and legs can buffer the movements and maybe reduce arousals even if not the movements.

Another point is to find out if you are on any meds known to have limb movements as a possible side effect.

About the use of the TENS Unit, I'm guessing the sensations caused by the TENS somehow interrupt or distract the messages between the legs and the brain, reducing the legs' activity. It's not a cure, but I think most sufferers would just be happy for some relief until a cure comes about. Not everyone has trouble on the meds most commonly prescribed (dopamine agonists) so it's up to you if you want to try them, but if so, I strongly suggest you deal with the ferritin level question first. It's thought that those with lower levels are more prone to problems with the meds like augmention. In using the TENS I use it exactly as it was prescribed for my lower back pain except before bedtime. It gives me enough relief to get some decent sleep. BTW, if you feel you were symptomatic for sleep apnea other than the sleepiness, it might be a good idea to revisit that possibility after you get your legs quieted down. It was my 3rd sleep study before my apnea showed up. My legs caused too frequent of arousals to even give me a chance to have apnea events. Good luck going forward.

Hi kteague,

I definitely plan on getting my ferritin, D and B-12 levels checked, as well as magnesium. I have results from some testing last fall that showed my D, B-12 and ferritin levels were low (41, 347 and 54 respectively) but at that time my doctor (not the neurologist) and I didn't have these ranges recommended for good sleep. I've been on supplements for all 3, but haven't been tested since last fall and haven't felt much better. I would not be surprised if my levels are still low, especially after reviewing Dr. Gominak's findings with her patients and the dosages and frequencies used to get them to the ideal levels. A friend of mine takes the large doses of D3 two times a week and she can tell the difference in her energy level, etc. I took the large dose once a week for a while, felt no difference so I stopped. I figured I might need a daily dose, but didn't feel much on that either. I am now taking 5000 IU a day, but not feeling any better. But if the levels of ferritin, b-12 and magnesium aren't right, maybe that's why.

I was hoping the Klonopin would help a little until I can get in touch with that doctor and arrange for testing to be done, but, alas, it was not to be.

"You might try a warm foot soak before bedtime, and a pillow between your feet and legs can buffer the movements and maybe reduce arousals even if not the movements."

I'll give the warm foot bath a try, thanks. I had to laugh when I saw your recommendation for the pillow - I've been using a pillow between my legs for years now, as I am pretty thin and it was uncomfortable to sleep on my side with my knees resting on each other (maybe they were actually hitting each other in reality). I thought my shifting back and forth at night with that pillow was what was pulling my sheets all askew, but now I think it's the PLM stuff. I mean my covers would be sideways sometimes and I would just shake my head as to how they got all turned around!

"Another point is to find out if you are on any meds known to have limb movements as a possible side effect."

I think I checked this already, but will look again. If I did see something, I may have dismissed it, as I've been tired for years and the only medication I really added was my seizure medication in 2012. ANd I'm only taking 1/2 the dose I'm prescribed, as the full dose made me feel too weird and the half seems to be working just fine. Only time I've had a seizure was when I forgot a dose one night.

"In using the TENS I use it exactly as it was prescribed for my lower back pain except before bedtime. It gives me enough relief to get some decent sleep."

So your TENS was a prescribed thing? It's not one of those I've seen advertised recently on TV that you can get at Walmart or someplace off the shelf?

"BTW, if you feel you were symptomatic for sleep apnea other than the sleepiness, it might be a good idea to revisit that possibility after you get your legs quieted down. It was my 3rd sleep study before my apnea showed up. My legs caused too frequent of arousals to even give me a chance to have apnea events. Good luck going forward."

Wow, so you DID have apnea! Did you have ANY indications in those first 2 sleep studies that you might really have it? I mean I look at my numbers and there's nothing to support it - basically 2 hypopneas is all that showed up. And they explained the increased Stage 1 sleep and the decreased REM sleep was due to the PLMS interruptions. To me, the only thing that makes me think I may still have sleep apnea is the fact I often wake up with my pulse pounding and have done so for many years. It happens during the daytime sometimes too, so it has never freaked me out when I wake up. But when I read it could be a sign of apneas, it made me wonder. What made you repeat your sleep studies?

Again, thanks for all the information. Now, once again, I can't wait for the weekend to end so I can contact my doctor to get the tests run - I think he'll arrange it so I can get the tests run BEFORE I come and see him. And also to contact the cardiologist to get that part of me checked out.

I can add that I've had three diagnostic sleep studies. First one was over two years ago and wasn't able to diagnose anything (a few apneas & limb movements but nothing major). Second one was last fall and had the severe PLMD and mild apnea (AHI of 5 point something). Third one was after we started Gabapentin & Folic Acid for the PLMD and the PLMD had dropped to mild and the apnea was still mild but AHI was 9. So as expected, the PLMD had been preventing the apnea from fully appearing.

My sleep doctor had my Ferritin checked after the PLMD diagnosis and didn't suggest supplementation as it was considered normal (although definitely not anywhere near 100 like some doctors recommend). However, lately my primary doctor ran some bloodwork including Vit D, and that was very low, so I started 4,000 IU/day. I'm due for a retest soon.

Its typical to at least run a repeat study to check that any treatments started for PLMD are working, so if that shows the PLMD is under control and you still didn't have significant apneas show up, then you could drop the subject. Or if it showed significant apneas, a titration could be scheduled and/or an APAP could be provided. Unlike apnea, where a full data machine can tell you how you are doing, it can be difficult to know if the treatment is working unless you have a bed partner to tell you, or you feel better during the day.

How my husband sleeps is also a good indication of the level of control over my PLMD, so I knew even before the repeat sleep study that there had been some improvement, but I was curious as to how much. I unfortunately have had little difference in how I feel during the day as far as daytime sleepiness and such even with the PLMD and apnea under decent control, but I have other factors going on, such as medications causing drowsiness, so I've continued on Ritalin as needed. I feel better knowing that I'm getting better sleep (less arousals so likely more deep sleep) and am healthier (less apneas). Best wishes.

Sounds like you're on top of things, so let's hope that leads to information that will help you. About the bed covers, yeah, I used to wake up and look around and say to myself, what happened in here last night?!?!?

Glad you're getting the heart pounding thing checked out. Waking like that at night is a characteristic of sleep apnea, but since since it happens during the day for you, something else may be going on. I have read some arrythmias are tied to sleep apnea, not sure about your description. When I had my first study they were looking for sleep apnea based on my classic symptoms - daytime sleepiness, waking with racing heart and short of breath, dreams of suffocating and choking, waking up coughing and choking, fleshy mouth and large scalloped tongue. But no apnea showed up. It was in retesting to see if the meds were working for my legs that revealed the OSA.

Thanks for sharing your experiences tortoisegirl. I'm really hoping that once I start treating anything that's low (vit D, b-12, ferritin, etc.) that I will start feeling better and won't need another sleep study to tell if things are improving.


kteague you said "I have read some arrythmias are tied to sleep apnea, not sure about your description. When I had my first study they were looking for sleep apnea based on my classic symptoms . . ." I have the daytime sleepiness to the point I often have to rest for a bit when I get home from school (I'm a teacher), the waking up with racing heart and shortness of breath, and the scalloped tongue (do you know WHY that's a symptom?) but I don't recall dreams of suffocating and choking or necessarily waking up coughing and choking. The only time I had weird dreams was last fall when a different neurologist put me on a different anti-seizure medication (from Keppra to Dilantin). It took me about a month to realize it was the Dilantin that was causing me to have very disturbing dreams (I'm talking horror-film like dreams) in addition to some other side effects. I got off of it as soon as possible and back onto the Keppra. Now I only recall having dreams (fairly normal ones) once in a while, not every night.

Oh, I was wondering what brand your TENS unit was and if your doctor prescribed it for you?

My doctor did prescribe my Empi Select TENS several years ago for my lower back pain. It was not prescribed for my jumpy legs because it is not yet recognized by the medical community as a viable option. I found out it helped by experimenting out of desperation.

On the scalloped tongue thing, my tongue became so enlarged it was barely contained in my mouth, with teeth marks all round from pressing against the inside of my teeth. I bit it often. I've read that low thyroid can cause the tongue to swell, but my thyroid tested out ok. Over time my tongue has gone back down to normal. Not sure why it all happened, but I'm sure that big tongue made my sleep apnea worse.

Hopefully some of your efforts will calm your legs down. If you decide to try a TENS, I doubt you'll be able to get a doctor's backing, so you'll be on your own. If you do get them calmed down, if symptoms of sleep apnea seem evident, I think another study would be a good idea. I just don't think it would show anything different if nothing has changed about your situation. I'm interested in hearing how things progress for you. Thanks for the PM. I had missed your followup post.