In September a sleep specialist put me on a 9 week regime of successive and concurrent medications to tackle PLMD. I started on 3 weeks of Melatonin alone (during which I had to struggle with several unmedicated PLMD attacks a night). This was succeeded by 3 weeks of continuing Melatonin (which had had no effect whatsoever during the previous 3 weeks since I identified my occasional insomnia to the specialist as a direct product of the PLMs) alongside 3 weeks of Clonazepam (to which I had reported myself at the consultation as now resistant!)
That 3 weeks - marked by continuing PLMD attacks to the tune of 4 - 6 a night, each necessitating between 5 and 10 minutes of walking around the house - is about to come to an end. The final 3 weeks is to comprise continuing Clonazepam usage, now to be supplemented by Mirtazapine, at the end of which time the situation will be reviewed.
I'm completely baffled. In the first instance, I don't understand why I was lumbered for the first 3 weeks with just a mild anti-insomnia drug and then with a continuing 3 weeks of Melatonin supplemented by a benzodiazepine whose efficacy had long-since ceased.
Now I'm to start a final 3 week regime of the entirely ineffectual Clonazepam alongside an anti-depressant drug with a known (if fairly recent) causal association with PLMD when a.) I'm not depressed, and b.) I already have PLMD, thank you very much!
Access to the specialist is difficult. I'm seeing him privately and would have to arrange a special meeting (whose fee, incidentally, exceeds my insurance allowance for consultations) at least a week into the final part of the regime. The probability is that I'll pass on the Mirtazapine, tail off the Clonazepam and hand over to my local GP (who's good but not an expert in the field) for alternative treatment (part of which might comprise time at a sleep clinic).
However, before I take that decision - which has to be implemented by Saturday - does anyone have any comments, observations or advice that might either clarify the reasoning behind the specialist's 9-week regime or provide guidance as to what course of action to take?
Finally, I'd appreciate testimonials to any particular medication that has proven effective against RLS and/or PLMD. I understand that it's different strokes for different folks, but it would be useful to have something of an empirical database when I go to see my GP.
Written by
dickJones
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Hi, i have no idea of why you have been given those meds or the 3 week regime.
The only places i can direct you to is these two websites which gives meds available for RLS/PLMD rlshelp.org look at the treatment page, this website also has a email available so you can ask the doctor of that website for advice. rls-uk.org is the UK based website.
Thank you, Elisse. I have the first site on my PLMD database. The drugs list notes that whilst Mirtazapine has fewer side effects than SRIs and tricyclics, it has been reported as exacerbating RLS. I assume from this that it might also increase and/or intensify PLMs. It looks as though my reading is more up to date than my specialist's!
The Mirtazapine was only studied in RLS in 131 people, I know it was a small study and has not REALLY been studied for RLS, but it does have about a 20% chance of making RLS worse. Dr. Buchfuhrer knows his stuff.
That is sure an odd combo of meds for RLS. Melatonin is only to be used 10 to 14 days at a time for something like jet lag, and melatonin can actually make RLS worse, it can block the neurotransmitters. 2nd, Clonazepam can be useful, but in combination with RLS meds. And, Mirtazapine is an antidepressant in class all by itself and is not a benzo. I take it and have taken it for about 7 yrs. it is no way meant to TREAT RLS. I do not understand what that doc is trying to do to you. You need to go over your meds again with the doctor and bring in some info with you. That is a ridiculous list of meds for RLS. The Clonazepam can have a tolerance build up quickly in some people. I have been taking it with other meds for RLS for about 10 yrs and it does help me relax, but it alone would not help my RLS, and Mirtazapine has nothing to do with treating RLS.
I'm more or less decided on a switch from the specialist and back to my GP. For the past 7 days I've dropped the Melatonin, continued the 0.5 Clonazepam and added Magnesium tablets, taken with the evening meal. I've had four days of relative relief from the intensity and frequency of the PLMs (I have PLMD, not RLS, but medication-wise they hang together). If I can get an appointment with my GP of choice this morning, I shall consult in the first instance and then probably bail out of the specialist programme.
Hi, thanks for your interest.. I stopped the Melatonin on November 16th and immediately there was some reduction in the number of nocturnal PLMs and some relieving of their intensity. However, the Clonazepam had clearly run its course so I packed that in on November 24th (no point in absorbing an ineffective benzodiazepine!) and I've been medication free since.
Now I'm averaging four PLM attacks a night. The moment one I'm awakened by a muscular contraction I get up and do five or six downstairs circuits of the house to walk it off. So far this has done the trick, but there's an investment of a good 10/15 minutes in each exercise so I'm averaging 5 hours 30 mts sleep a night.
If I could be sure that my nocturnal wanderings would manage the PLMs and provide sufficient deep sleep in between, I'd stick with them rather than ingest chemicals indefinitely. But no pattern has emerged, beyond the apparent restoring of a couple of complete sleep cycles - i.e. sleep intervals of 70 minutes-plus - so I went to my GP this morning and he's prescribed a low dosage of Carbamazepine, an anti-seizure medication. I'll try that out over the next couple of weeks (unless it's horrendous, in which case I'll resort to my nightwalking!)
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