PLMD

Sojourner · Post by **Sojourner** » Sun Aug 26, 2007 5:19 am

Did a search and not sure I saw a relatively recent dedicated thread with respect to PLMD so I thought I would start one.

I have PLMD both asleep and awake (per sleep study) but they mostly occur during sleep or while I am trying to sleep. Currenly taking 1200 mg neurontin with ultram/vicodin with some success but period unusual med response and I think the neurontin is loosing effectiveness at this range. Got ok in last dr. visit to try up to 1800 mg of neurontin--but haven't started yet. He was reluctant to do that but I mentioned dr. b's book and that he mentions the average theraputic dose is 1500 mg.

Discovered at my dr. appt that he does not believe in PLMW..Mmmmmm. Also, as an alternative to increasing the neurontin he suggested tryin xanax 3x daily (not sure of the mg) for one week. I declined. He also suggested trying a bi-polar med. whose name I can't remember but it began with a g or j and was only one or two syllables to try to help with the sleep. I declined. He wanted to know why I was being so stubborn for which I gave him a reaonable explanation. May try these at some futrue point. Also, believe it or not, he had not heard of Lyrica but said he would look it up.

My PLMD began soon after stopping Klonopin and an unsussessful attempt with requip.

Wondering about others with PLMD, their medications, how successful they have been, suggestions/hints and other tidbits.

Post by **ViewsAskew** » Sun Aug 26, 2007 6:56 am

I'd also like anyone with PLMW to tell us about when it started.

Did you always have it? If not, when did it start and what drugs were you taking at the time?

I had PLMs while asleep for 25 years. But PLMW started only after I augmented on a DA. I had it for a two year period. Once I got the drug out of my system, the PLMW has mostly stopped, though I occasionally have a bit of it.

SquirmingSusan · Post by **SquirmingSusan** » Sun Aug 26, 2007 7:21 am

Hmm, I didn't know that a doctor could decide not to believe in something like PLMW :roll:

Of course I like to refer to mine as "myoclonic jerks" because it's just so much more fun to say, and there's nothing periodic about my jerking... Ask you doctor if he believes in myoclonus, or myoclonic jerks? Or what does he call it when your body jerks all day long...

What's up with you doctor and bipolar meds? Almost all of those can exacerbate RLS. Xanac could work, though. Did the clonazepam help you with the PLMD, Mark?

I've only had the daytime jerking since augmenting on Requip. It seems like Ativan helps a little, but I can't get a doctor to prescribe it for me, so I have to conserve my little stash for when I really need to sleep. My pain doc gave me clonazepam, but it made me sleep all day the day after I took it, and it didn't seem to help the jerking, so I don't take it. I take Neurontin, but it just seems to help me sleep, not help with the jerking. But I only take 300mg., and then only when I remember.

The only thing that seems to help a lot is Wellbutrin. I take the lowest possible dose in an extended release form - 150mg. released over 24 hours. It doesn't help with depression at all, so I quit taking it. The jerking went crazy and it took a while to figure out why. I realized that the jerking went nuts after I quit taking the Wellbutrin, so I started taking it again. It cuts the intensity by about 50-75%

I'd really like to try a low, low dose of a DA and see if I could tolerate it and if it would help with the jerking. But right now I'm really sick of doctors, and have really great symptom control apart from the jerking. Next time I see a doctor I'll ask for a script. Optimally I would like to try the Neupro patch, since I have the (*Y&^ jerking all day long.

cornelia · Post by **cornelia** » Sun Aug 26, 2007 7:48 am

I have severe PLMW and no PLMS. I had the PLMW's already before I was on meds.

In another thread I wrote that in my opinion PLMW is just a severe form of RLS. Well, of course I don't know if that is right.

Corrie

Sojourner · Post by **Sojourner** » Sun Aug 26, 2007 8:20 am

Looking at the time on some posts we are all up a bit late. Sorry for that. I was on Klonopin for several years and then it seemed to stop working. I did read somewhere that PLM can be a side effect of Klonopin withdrawal. But for how long! Ann, I'm glad your PLMW got somewhat better anyway but still.... Xanax seems like just another benzo but perhaps that is in the future if it helps. Some comments again seem to depict the dilema we are in...that is we take a med in hope it helps and unfortunately it may in fact make things worse in the long term. I think that's why I resisted the dr.'s recommendation for other meds and perhaps want to stay with the neurontin a bit longer. But who knows, the neurontin may ultimately prove to be in the problem creating category when I eventually need to go off it.

I guess a dr. can choose to believe whatever they want.

Don't know if this is the same with others but what I hate about the PLM is the feeling that goes with it. Can't explain it really. But each "jerk" is like a mini anxiety attack.

Post by **ViewsAskew** » Sun Aug 26, 2007 6:52 pm

Corrie, interesting theory. Maybe for people with RLS it is. Yet PLM exists in people without RLS. . .and for some, it doesn't even bother them. Weird.

I agree about the mini-anxiety. Until I started the methadone, I dreaded every day of my life. I really thought that it was the augmentation - the increased RLS, the PLMW; gosh it was awful. But, Mark, for you, it's not augmentation. But, it definitely sounds as if the PLM and the RLS are no where NEAR under control.

It also sounds as if you may be due for a "doc trade-in" as your current model isn't working so well these days. Anyone who didn't believe in PLMW...I know I wouldn't be happy working with that person, as I know just how real it is. And how anxiety provoking.

FidgetBoy · Post by **FidgetBoy** » Sun Aug 26, 2007 8:07 pm

Interesting thread-- when I went my local sleep center a year ago, my wife told them she was getting kicked by me all night long-- and that I was thrashing and jerking constantly. The sleep specialist said that I had PLMD and that it was something everyone had and that it had nothing to do with my fatigue and RLS. I wanted to kick him in the ba**s and see if he felt my kicking was insignificant! jerk. :shock:

I still startle myself every night just as I'm falling asleep---I experience a sudden myoclonic kick that is so hard I feel like I can hear my quad muscles snap. It's awful-- and NOT as innocuous as some health providers would have us believe. Any health care provider who says otherwise has clearly never experienced how exhausting and painful it is to wake up the next morning after their legs ran a marathon all night.

Sojourner · Post by **Sojourner** » Mon Aug 27, 2007 4:06 am

Josh, I get that startle response just as I think I am about to fall asleep also. Doesn't matter if it's bedtime or nodding off in afternoon after no sleep. My PLM is not the big thumping jerk. It is more subtle and confined to an area of perhaps several inches. Every now and then I have the big one. Again, the mini-anxiety is more distubing then the leg action/sensation. Ann, I'm so sorry if the mini-anxiety continues to plague you.

Don't know why my doc. does not think PLM happens when I am awake. I may have to discuss that with him next visit. He was very good to me about a year ago when I went through the requip crisis. Don't know that there are lots of other RLS/PLM providers nearby. I probably could get treated at the Univ. of Mich. Hospital where I went for a consultation a while back. However, I was not particularly impressed as I did not think they had lots more insight into the condition and it also seemed so impersonal. Also, I got the impression that because they are a big time name there is less room and time for discussion/quesioning. I'm sure they would not remember me from visit to visit. I do feel I get more of the personal touch in my small town but I guess that does not always guarantee the best or most competent care. I think the thing that bugged me the most about my last visit was the "Are you depressed/anxious questions (several times). Well, duh! Yet, all things considered, I really do think I am doing very well.

I'm going to try my first night on an increased dose of neurontin this a.m. I try to re-read the neurontin posts to see how people are doing on similar dosages (1500mg) and any side effects etc. Hopefully this thread will also give me more info. on the types of meds people take for PLM (as opposed to RLS--if they are different).

Again, maybe this thread will be sufficient but I again wonder from those who post here if a seperate PLMD topic would be useful. Not pushing for it or anything like that..just wondering.

Sorry for the rambling. Seems I have so much to say these days but sadly so much about me. Apologies. Sincerest best wishes to all who journey here this night.

abbycakes · Post by **abbycakes** » Mon Aug 27, 2007 5:17 am

Hi Mark,
Thanks for bringing up the topic. I'm going to a new doc. tomorrow at the sleep disorders center at the University of Washington and I'm hoping they'll help me with my PLMD. I've been jerking more than ever, especially when I'm falling asleep. My husband told me that last night was REALLY the bad--the worst, he said--and that I woke myself up several times. I don't even remember doing that! Geez, no wonder I'm so exhausted! :roll:

Reading this particular post must have been a blessing because of my appt. tomorrow--I've been very anxious about hoping that these people will understand me. I've taken soooooo many meds. for PLMD and RLS--I need to print out the list of meds to take with me so that I know to show them what didn't work!

One question...what does PLMW stand for? It's a new acronym regarding PLMD for me...thanks!!
Jen

Sojourner · Post by **Sojourner** » Mon Aug 27, 2007 6:12 am

Jen, PLMW refers to Periodic Leg Movement during Wakefullness (per Dr. Buchfurher's et al. book). His book has some information regarding PLMD (Periodic Leg Movement Disorder) and other acronyms related to PLM. I sincerely hope your visit to the sleep disorders clinic will be helpful for you. Please let us know how things went. This evening (Monday) is typically the day for the "chat" room. Maybe you could visit there and let us know how great things went for you! If not, we will look forward to your post. Best of Luck.

Post by **ViewsAskew** » Mon Aug 27, 2007 6:16 am

A quick reminder to everyone. . .we have a little "dictionary" in the Managing RLS sticky post (in the New to RLS section).

Sojourner · Post by **Sojourner** » Mon Aug 27, 2007 6:18 am

Thanks Ann. Must be some of us up a bit late tonight! I hope you are doing well.

SquirmingSusan · Post by **SquirmingSusan** » Mon Aug 27, 2007 6:20 am

Hi Jen, good luck with your appointment tomorrow. I think it really is a good idea to type up a list of meds that you've tried for the RLS and PLM, and if they were effective or not, and the side effects. It's amazing just how many different drugs some of us have tried. :shock:

PLMW = Periodic Limb Movements aWake, I think...

BTW, those big jerks that happens as we're falling asleep are usually not PLM, but rather "hypnic jerks." Somehow the reptile brain in all of us interprets some of the relaxation that happens when we're falling asleep as actual falling, and it's a reflex to right ourselves. I hate those! After one of those I really have anxiety about trying to go to sleep again.

Out of curiosity... PLMs are supposed to be periodic, usually happening about every 30 seconds or so. I heard a doctor on TV say that they are usually so regular that you can set your watch by them. Mine - at least the ones that happen when I'm awake, seem completely random, that's why I prefer to call them by their older name, "myoclonic jerks." How do you all experience them? Are they "periodic" or are they random?

Post by **ViewsAskew** » Mon Aug 27, 2007 7:26 am

Interesting thing about the hypnic jerks - they are a myclonic movement. And PLMD was originally thought to be myoclonus. Still is called that sometimes. I just wonder if somehow things will be found to more related than they think. . .

I had mild or no hynic jerks at sleep onset before methadone. Now? You'd think I was getting shock therapy when I fall asleep. But, to make it more interesting. . .since I started the Mirapex again? Yep, you guessed. No hypnic jerks any more.

Hmmmm.

abbycakes · Post by **abbycakes** » Wed Aug 29, 2007 3:28 am

Hi Everyone,
Thanks for the acronym update.

OK, so, how is PLMW different than RLS?

I went to the sleep clinic and found the doctor to be patient and thorough. I showed him the list of meds, and he decided to put me back on Mirapex. I couldn't remember why that one didn't work, and last night it came back to me. With only taking 1 pill (.25mg), I wound up dizzy with hot flashes and a terrible stomach ache that lasted all night and into today. I felt like crap in the shower trying to get ready to head back to the new school year, thinking there's no way I can do this! I called and left a message for the doc. Hopefully he'll prescribe me something else. I'm still on the oxycodone ER, but I have to go two days without because I can't get into my neuro until Friday to get my new script. I can't believe I let it run out like that! An MS moment, for sure... :roll:

So, any advice on how to cope for the next two days?

I appreciate the comments that you all give...it's amazing how much one person can know about sleep disorders, but you tell someone who doesn't have to deal with it, and they look at you like you're crazy!

Sleep well!
Jen