A long rant. Sorry. PLMD? Sleepwalk? Epilepsy?

[MelindaJoan]

My sleep study results indicated severe OSA and I've been very compliant with my machine over the last 30 days. Both the sleep and the titration study uncovered even more awakenings from PLMD and I had 119 shift changes in sleep stagess over 3 hours. Obviously, not good sleep! The reason the whole sleep study was started was due to a sleepwalking incident where I injured myself. Copies of the sleep study were sent to a local neurologist.

I had my meeting with the neurologist who proceeded to tell me he thought it was epilepsy. I'm 60 years old, no history of anything like that ever, ever. Ever. Did I say ever? I've been married to my husband for 31 years and although I've not had the best sleep in the world the last few years he's not noticed anything unusual except for the kicking. I think the neuro is full of BS. I had a sleep-deprived EEG; the result is normal. My ferritin results just came back and instead of being somewhat low, the ferritin is actually mildly elevated (range 0-160, result 178)! I have numerous autoimmune problems, most notably rheumatoid arthritis. My sed rate was also mildly elevated ( and my wrists, feet, and fingers were hurting nastily at the time which explains that.) Quite frankly, when the neuro told me he thought maybe epilepsy, my until-then controlled IBS went into high gear and I've been suffering since. And, then the ferritin test. The fact that it was only mildly elevated is a minor miracle so far as I'm concerned.

I know from reading that the first line of defense for PLMD is Parkinson's medications. Frankly, my husband has Parkinson's and I think that one person in the house on agonists is enough and I will not take them. I've witnessed the possible issues.

My take on this is this: between the OSA and the PLMD (along with menopause) my sleep has been horrid for at least 10 years. Sleep deprivation MAY cause sleep-walking. But epilepsy? He couldn't answer me insofar as anything on the video during my 2 sleep studies.

My question is this: I've looked at the other options for medication....melatonin (I often take a reduced dose at bedtime), clonopin....anyone with any input here? I'm also going to post on the RLS board but you all are way more helpful. Any dietary recommendations?? Help, and thanks for listening.

[kteague]

I wouldn't place much stock in a mention of epilepsy without any evidence of such. Were they just throwing out possibilities or making a diagnosis? Finding out exactly what is causing your issues may be a bit like unraveling a knot and take a bit of time and maneuvering. Keep in mind I am not a medical professional, just a person with PLMD. I've used several of the meds out there, but currently control my legs at night by using a TENS Unit on my lower back before bedtime.

[avi123]

My sleep study results indicated severe OSA and I've been very compliant with my machine over the last 30 days. Both the sleep and the titration study uncovered even more awakenings from PLMD and I had 119 shift changes in sleep stagess over 3 hours. Obviously, not good sleep! The reason the whole sleep study was started was due to a sleepwalking incident where I injured myself. Copies of the sleep study were sent to a local neurologist.

I had my meeting with the neurologist who proceeded to tell me he thought it was epilepsy. I'm 60 years old, no history of anything like that ever, ever. Ever. Did I say ever? I've been married to my husband for 31 years and although I've not had the best sleep in the world the last few years he's not noticed anything unusual except for the kicking. I think the neuro is full of BS. I had a sleep-deprived EEG; the result is normal. My ferritin results just came back and instead of being somewhat low, the ferritin is actually mildly elevated (range 0-160, result 178)! I have numerous autoimmune problems, most notably rheumatoid arthritis. My sed rate was also mildly elevated ( and my wrists, feet, and fingers were hurting nastily at the time which explains that.) Quite frankly, when the neuro told me he thought maybe epilepsy, my until-then controlled IBS went into high gear and I've been suffering since. And, then the ferritin test. The fact that it was only mildly elevated is a minor miracle so far as I'm concerned.

I know from reading that the first line of defense for PLMD is Parkinson's medications. Frankly, my husband has Parkinson's and I think that one person in the house on agonists is enough and I will not take them. I've witnessed the possible issues.

My take on this is this: between the OSA and the PLMD (along with menopause) my sleep has been horrid for at least 10 years. Sleep deprivation MAY cause sleep-walking. But epilepsy? He couldn't answer me insofar as anything on the video during my 2 sleep studies.

My question is this: I've looked at the other options for medication....melatonin (I often take a reduced dose at bedtime), clonopin....anyone with any input here? I'm also going to post on the RLS board but you all are way more helpful. Any dietary recommendations?? Help, and thanks for listening.

Comment,

You should posts some results of events from the S9 Autoset's screen. Your sentence "my sleep has been horrid" does not mean much to me. Also, what are "shift changes"? Sleep walking is caused by several medical conditions besides sleep deprivation, if you are correct on this one. As to medications for RLS and PLMD check this:

http://www.aasmnet.org/Resources/Practi ... entRLS.pdf

A neurologist could easily check if you have Epilepsy by doing an EEG test. So what if you have Epilepsy? It's not the end of the world. Besides Rxs, a surgery costing around $120,000 could take care of it.

[Jay Aitchsee]

Hi Melinda, welcome.
I have a couple comments for you. First, I think you should give your cpap treatment a little more time and make sure you have your OSA controlled before doing anything else. Fragmented, non restorative sleep requires a bit of detective work and often the only way to determine the cause is to rule things out one at a time. OSA, is one of the easiest. As Avi said, post your results here and people will help you if needed.
After your OSA is well controlled you can try to determine what else is causing disturbances like poor sleep hygiene, pain, PLMD, etc.
As far as Meds go, I would approach them cautiously. Having PLMD myself, I've done a fair amount of research and tried most that are prescribed for the condition without much success. My research indicates there are few drugs which promote deep restorative sleep. Many, like clonopin, are sedating, but don't promote restorative sleep. If you do a web search for "drugs which promote deep sleep", you won't find many. Some that are promising are gabapentin and it's derivatives, Neurontin, Horizant, Lyrica, etc.
At this point, based on my own experiences, if I were you and needed something for sleep, I would consider ambien over clonopin - less addicting, not as likely to produce a drug hangover, and doesn't adversely affect sleep architecture. Its shortcoming is a short half life of about 4-6 hours, which means it only provides relief for about half the night.
Best of luck to you.
Jay

[MelindaJoan]

Thank you kteague and JHC, I do intend to research the medications and treatments for PLMD and think I will work with my family doctor on this. I'm not anxious to take any additional medications. My sleep has much improved over the last month since I've been using the cpap. I definitely intend to keep it!

Avi, I did have a sleep-deprived EEG and the results were normal, just as I would've expected since the whole diagnosis was full of cra*. Just to throw that out there to an unsuspecting client and not have any justification for it is irresponsible on the part of the physician. Epilepsy may not be a big deal in your world but it is in mine. Your statement regarding the $120,000 is cavalier.

[nanwilson]

Melinda
There are some forms of epilepsy that are breathing related. I have 3 of my family with it. One of my children has full blown epilepsy and takes meds for it, my youngest and I have a very mild case and do not take meds. All three of our eeg's show epileptic activity during the breathing portion of the test. Your eeg may have shown the same spikes and valleys during the titration and that is what he was basing his dx on. You would need to have a full eeg test to show exactly what is there. I have seen the test results of all three of us and it does show the spikes and valleys on the results.....but my oldest has many more and bigger spikes and valleys than ours....therefore has full blown epilepsy that is controlled by meds. Epilepsy is NOT a big deal these days and can easily be controlled, we each drive our own cars and one of us also has a harley. The disease does not have the "stigma" that it did many years ago....you are not "crazy or belong in the loonie bin" , people do not even know that you have it..it is easily treatable with meds and you do not need the surgery that Avi is advocating...that is for VERY bad cases that do not respond to meds.
I hope I have alleviated your fears...its no big deal anymore.
Good luck
Nan

[BlackSpinner]

Avi, I did have a sleep-deprived EEG and the results were normal, just as I would've expected since the whole diagnosis was full of cra*. Just to throw that out there to an unsuspecting client and not have any justification for it is irresponsible on the part of the physician. Epilepsy may not be a big deal in your world but it is in mine.

Epilepsy is no big deal in anyones world anymore. The check for it was well done, not at all irresponsible, it was his job to verify that. Of course you are unsuspecting, if you knew it you wouldn't be there to figure out what is wrong! It is something to rule out. Epilepsy doesn't always mean grand mal seizures, sometimes only an EEG can determine if you are having them, the person seeing you just may noticed you look spaced out for a few seconds. That is one reason that these kinds of tests need to be done for kids with learning disabilities, because losing a sentence every few paragraphs means you can get very confused.

[old64mb]

My sleep study results indicated severe OSA
Both the sleep and the titration study uncovered even more awakenings from PLMD
The reason the whole sleep study was started was due to a sleepwalking incident
I have numerous autoimmune problems, most notably rheumatoid arthritis.
until-then controlled IBS

I'm sorry you felt the neurologist wasn't fair to you, but I think it's important you be fair to him as well.

My gut is it sounds very much like he was trying to step back and say, "Hmm, ok, in my clinical experience dealing with weird stuff going on with someone's brain function, is there an underlying disorder that could be causing all of these things, even if they're saying "never ever ever?" He may be entirely wrong, but your distaste for some of the pharmacological treatments (which is fair) isn't a good reason to reject it either.

The better way to approach it is to ask him, "Ok, what specifically about my multiple comorbidities makes you think that I have epilepsy?" That opens a dialogue. Telling him (or any other doctor) "Hell, no!" is not a particularly constructive solution to try to make you better, because you then don't get the clinical observations that you can argue over, in the worst case with another MD.

That said, one thing to keep in mind is that many of the pharmacological solutions for RLS actually are anti-epileptic because for whatever reason (and it's not fully clear even to the best researchers as to why), that class of drugs ends up reducing sleep fragmentation and increasing Stage III/IV sleep. The difference between that and epilepsy is that when used for RLS, they are generally prescribed in far lower dosages, with fewer accompanying side effects, and being prescribed before bedtime means their sedative aspects end up working for you.

You're a complicated patient with a lot of stuff going on, and it's quite likely getting better sleep may be a good chunk of your problems. However, just keep in mind that the more problems you have, the less online help from forums can actually get you - because the biggest trick is to get diagnosed properly, and you're just starting down that path.

Just something to think about. Cheers.