New Here - questions about PLMD

[lindaplmd]

Hi..just joined. I have PLMD, not RLS. Have been on mirapex for 2 1/2 yrs It worked great at first...it changed my life waking up earlier and rested. But after 18 months, I had to increase the dose and have increased it several times. Not working very well so I'm exploring other things.
What is a tens unit? Also, what is a Sleeptracker watch? Where does one get either one?
I have been on Luvox for many yrs....my neuro said decreasing the dose may help. Has anyone decreased a dose of SSRI? Did it help?
May add Horizant and possibily transistion to Requip...anyone have experience with either drug?
Am thinking of cutting out sugar, though that seems like it would be very hard!
What about taking a drug holiday, such as reducing the dose by half for 2-4 wks? Neuro dr. said that can make the drugs effective again but no guarantee.
I'm tired of waking up tired!

[ViewsAskew]

Hi Linda,

Sounds like you may be augmenting. Lots of posts here about that. I initially took Mirapex for PLMs (only had mild RLS/WED), but augmented.

SSRIs may make symptoms worse, and may not. The latest study says a max of 10% of people taking an SSRI have increased WED/RLS symptoms. So, could help....more likely it will not.

Before you do anything related to another dopamine agonist (such as Requip), please get your serum ferritin tested in case you haven't. It should be at least 50 and preferably 100.

Cutting sugar doesn't help most of us....but it does help a few.

Drug holiday...could work. But, if you've augmented on the drug, you'll probably have to take a significant holiday and then you shouldn't take it regularly again until your ferritin is higher.

TENS unit - it provides electrical charges http://en.wikipedia.org/wiki/Transcutan ... timulation . To my knowledge, most of us have not had luck with it, but one person has had tremendous success. Search on TENS to find posts out it.

Sleeptracker watch: http://www.sleeptracker.com/

[Chipmunk]

Reducing my SSRI helped with symptoms. You could also try a different one.

I have a Zeo sleep monitor, as do a few other people on the board. I have found it very helpful when trying new meds.

[Angierob]

Hi Linda
I'm new to this forum (as from today!) and have RLS and PLMD at night. I'm on Requip - up to 3.5mg now and probably about to increase - and find that it does stop the symptoms. You do seem to grow immune to it though - I started on .25mg which worked great for some weeks, but have had to gradually increase the dose. But, if I have sugar, salt, alcohol or caffeine after around 7pm, then I don't get to sleep until around 2am for the twitching! So I have to avoid those things, hard as it is, at that time of day. I get on OK with Requip, although it has a tendency to produce horrible nightmares for me occasionally and also it can make me feel sick. If I take it too soon before going to bed, it can make me physically sick, so I take it about 20 mins before and that works well for me. I can put up with those side effects though if it means a good night's sleep.
Hope that helps.
Angie

[badnights]

Linda:
It's not actually a drug holiday if you merely reduce, a holiday is when you stop completely for a time. I don't know if reducing has been effective for anyone in allowing the drug to regain its effectiveness; I've only heard of stopping completely.

Angierob:
I would be very leery of increasing your Requip further. You might be augmenting, if your dose has increased that much over a span measurable in weeks.

Before you raise again, get your serum ferritin checked. It really ought to be over 100 ng/L before taking Requip (or any dopamine agonist), since the risk of augmentation is much higher in people with low ferritin. Ferritin is a protein that transports iron in the blood, and it's not a part of the usual iron bloodwork so you might have to ask for it specially. Levels of 20 are regarded as normal in people without RLS/WED but at least 50-100 is the desired level for people with RLS/WED.

Requip takes 1-2 hr to kick in, so you;re lucky to be falling asleep after 20 min !

See http://www.rls.org/Document.Doc?id=1985 for augmentation definition and treatment

[Angierob]

Hi Beth
I think you're right about me augmenting. Before I get my next stock of Requip from my GP, I think I'll go and see him and explain all I've learnt here about augmentation and gently suggest some of the alternatives or additional drugs which I've now discovered you can take with Requip to reduce augmentation - and I must get those ferritin levels checked too! Thanks very much for the link about augmentation - will take that along to the GP when I see him.

As for falling asleep within 20 mins, it doesn't always happen, only on a good night, but perhaps it's a case that my PLMS doesn't always kick in until after the Requip has started working. Requip does seem to have an effect in me quite quickly though - I start feeling queasy around 30 mins after taking it, so I guess something must be happening at that point.

As for the freaky dreams that I seem to get since I've been on Requip, the other night I dreamt there was a killer mouse in the bed and, before I'd woken up properly, I'd bounded out of the bed, pulled off all the covers and was over the other side of the room! Makes for an interesting night I suppose.
Angie

[badnights]

Not funny but funny
I have done similar things but not from a med side effect, rather, from being tired beyond exhaustion.

[helenhugs]

I am sorry I have no useful advice I'm still very much learning. However I too really suffered with the sickness on requip and the doctor gave me domperidone to help, I don't know if that is an option for you?
Hugs

[Polar Bear]

I also was sickly when I started requip and also took domperidone. However, splitting the dosage and also taking it with some food helps this and I no longer take the domperidone. Remember that taking the requip with food delays its onset somewhat.

[Angierob]

Thanks very much for your suggestions about the sickness. It's not too bad as a general rule, but I plan to see my GP soon and will mention the augmentation and see if I can supplement the Ropinirole with something else and reduce the Ropinrole a bit, which might help with the sickness. I thought I'd found the answer for this condition a few years back whilst in the States. I found some tablets in a pharmacy called "Restful Legs". They worked wonderfully for some months but I gradually became immune to them, which was a real shame. I'd even discovered that you can get them via Amazon in the UK and was in my element for a while! They were great until they stopped working because there were no side effects for me. I hate having to take such heavy duty drugs for it but, if it means I get to sleep at night, then I guess I have no choice - killer mice notwithstanding!!