I had my first appointment with my new neurologist today.
The only RLS medicine that I now am taking is pregabalin (2 x 75 mg, in a single evening dose). I informed the doctor that pregabalin did not relieve my late evening and early morning RLS, and asked what other medicines might be prescribed.
The doctor's reply was one that I had not anticipated: split the dose! Instead of taking 2 x 75 mg at the same time, take 1 x 75 mg as the discomfort begins to worsen in the late evening, and take 1 x 75 mg an hour or two later. We agreed to proceed as she had suggested and that we would consider increasing the dose as/if necessary when we next discuss two weeks' hence.
My RLS discomfort was atypically severe this afternoon. Had I forgotten to take any pregabalin yesterday evening? Unable to delay further, at 7:00 PM this evening, I took 1 x 75 mg pregabalin. Within about 30 minutes, much of my RLS discomfort had abated. I will take the second dose around Midnight. Tomorrow, I will begin the new dose schedule.
Before increasing the dosage of a medicine--or abandoning it in favor of another--it may be prudent to discuss with your doctor if a change to dose timing may be all that is needed.
That's very interesting. Glad it worked. Do keep in mind before abandoning pregabalin that your total dose is still low. According to the Mayo Clinic article, 200 to 300 mg is what most patients need to control their RLS. And since splitting the dose has worked, it is obvious that you are one of the people helped by pregabalin.
Hi, SueJohnson, and Good Morning to you. Actually, it's late morning. Just had one of the best night's sleep in a long while. I woke up ~10:30 AM local time with typical (minimal) RLS morning discomfort.
I did discuss at length my tortured RLS history, various medicines taken, and whether or not current dose of "only" 150 mg pregabalin should be increased. The doctor was not averse to increasing the dose but first wanted to proceed cautiously.
And, yes, I appear to be one of the people helped by pregabalin--this time around. We discussed the impact of earlier augmentation and DAWS. She said that she was knowledgeable about both augmentation and DAWS and believed that I was sufficiently beyond both that pregabalin might work for me.
Incidentally, I had been referred to this neurologist by my GP with the understanding that the neurologist was a "sleep expert" neurologist. Burned in the past, I asked this office in advance of the scheduling of this appointment if this neurologist was, in fact, expert in sleep disorders including RLS. Once confirmed, I scheduled the appointment.
You can imagine my surprise when the neurologist volunteered that, though she had treated many patients with RLS, she was not a "sleep expert" on the cutting edge of all things RLS and, that, therefore, I should seek help elsewhere if that was a concern. But it was not a concern to me.
This neurologist's examination of me was extensive--more so than any of the other supposed sleep-expert neurologists (except for the Swiss and German doctors who had examined me at Johns Hopkins University as part of an NIH study decades ago). She appeared to be knowledgeable of RLS, was courteous and professional, and dedicated more than one-half hour of uninterrupted medical attention to me. I repeated what I earlier had told my GP: I was not impressed by paper credentials; I would accept treatment from a GP without any referral elsewhere if such had been suggested.
HI, SueJohnson, and thanks for your further reply. I don't know the answer to that. In my case, the neurologist confirmed what others had said: that my RLS was at the top end (among the worst) of those whom she had treated for RLS.
I also think that 150mg is relatively low although if that worked then of course there’s no need to go higher. I coped pretty well on 300mg a day although I was still glad to get off it when I was able.
Good morning, Munroist, and thank you for your reply. I concur that the current dosage is too low. Not because it may be insufficient to provide any relief. Rather, because thogh effective, the duration of relief is insufficient.
The neurologist anticipated that I would take the 1st capsule ~10:00 PM or so, and the 2nd capsule an hour or two later upon the theory that this approach would relieve the worst of my symptoms and that I could endure the rest of the day w/o medication.
As it turns out, I could not wait until ~10:00 PM to take the 1st capsule. This past evening, my discomfort was such that I took the 1st capsule ~8:00 PM, and the 2nd capsule ~Midnight. I slept soundly only until ~3:45 AM, at which point my discomfort returned with a vengeance. I was tempted to reach for a 3rd capsule, but refrained from doing so.
My new neurologist felt that I might need to content myself with "some" relief for the period of my worst symptoms. Still and all, even if that approach is sound, it would require that I either remain awake until around Midnight each evening to take the 2nd capsule that will offer only about four hours of relief or that I wait till I am awakened to take the 2nd capsule. Either approach now appears to me to be wholly unsatisfactory.
What to do? I am tempted to cheat and to take a 3rd capsule of 75 mg pregabalin. But that would be contrary to the prescription and deplete my supply prematurely. I may call my neurologist to discuss or instead wait until my upcoming appointment next week with my GP. I note that the FDA just approved extended release Lyrica. I just posted a separate comment soliciting users' experience regarding same. Maybe that is an option? Meanwhile, I suffer.
You didn't say why you ceased taking pregabalin. May I ask why?
In summary I didn't like the side effects, albeit mild, and I wasn't aware of RLS or pregabalin's role in treating it.
The long version is that I was prescribed pregabalin for neuropathic pain and "nerve excitation" as I was getting a lot of worrying and sometimes uncomfortable or painful sensations which were related to a back injury (slipped disc which pressed on the nerves). At the time I wasn't really aware of my RLS as a separate thing although I had had interrupted sleep for a while which I assumed to be life stress and bad habits. The pregabalin reduced the sensations and also helped me with anxiety allowing me to become less stressed about the situation and to realise I could manage the nerve issues and actually it did heal and improve to a degree. I came off the pregabalin because I don't like taking drugs on principle and because of some side effects including the slightly inebriated feeling it caused, a little like a pint of beer or two, and other related behavioural changes such as being slightly disinhibited and finally a sort of stutter/hiatus occasionally during animated conversation, although these were not serious issues and I was able to get on with my life with no real issues. I only really became aware of the RLS as a defined syndrome and of pregabalin's use to treat it after I had tapered off the drug and I have been trying to manage it through other means such as diet, iron supplementation, careful exercise and better sleep hygiene and those approaches have been helpful to a degree although I still wake at least twice a night and some nights like last night are a series of of six or seven 45 minute naps.
I think the back issue definitely caused a worsening in RLS although I now see that there had been clear evidence before that, the waking at night, PLMD after intense exercise which partners and friends told me about at the time or later but I assumed I was just restless. I tapered off pregabalin very slowly because I didn't want to yo-yo off and on the drug and I was apprehensive about the sensations returning but once I'd done it there was a feeling of mental clarity and space that returned although I hadn't noticed it's absence. Lastly I don't think the pregabalin made a deal of difference to my RLS although it's hard to say because while I did keep a journal of how I was doing with the nerve stuff, I wasn't aware of the RLS as a defined syndrome until a bit later so I only have some unfocused comments about sleep to go on.
Good morning, again, Munroist, and thank you for your comprehensive reply.
Sorry to hear of your back-issues and related discomfort. I too had some back-issues following an auto accident almost twenty years ago (sandwiched between two vehicles while stopped at red light). Quick exam by "internist" w/o X-rays said "Temporary." Fast forward and I still have occasional albeit now minor back pain. As one now former neurologist said: "Your entire life is temporary." Such is life.
As for pregabalin (and other related medicines): I have found that some present severe side-effects that render continuation of a medicine counter-indicated, whether or not it relieved my RLS. In the case of pregabalin, I too had substantial side effects and little benefit when it first was prescribed (loss of balance; vision blur; accident proclivity; dry mouth; etc.).
Fast forward to about a year later (now) when it was again prescribed: The initial starting dose was lower, and I titrated upward after one week, then again some days later. With the exception of persistent and extreme dry mouth, I have no other side effects as I type this reply.
I too kept a journal of the various medicines prescribed and their effects. I too do not like taking more medicines that absolutely necessary. I hope that, insofar as RLS is concerned, a single medicine might suffice. In this regard, I just called my new neurologist to ask if they might increase the pregabalin to 1 x 75 mg three times daily rather than 1 x 75 mg twice daily due to the gaps in coverage that I now experience. Odd that though the side effects (extreme dry mouth) persist day-long, the duration of RLS relief from pregabalin lasts scarcely four hours.
I have been on 100 mg. of Pregabalin 3x/day for seven years, combined with 100 mg. of Tramadol 3x/day as a dosage cocktail for what was very severe RLS for the last 20 years. I had also experienced severe augmentation after three years of being prescribed very high doses (24mgs/day) of Ropinerol by a neurologist who misrep himself as a RLS expert when he knew nothing about it. I self- titrated off ropinirole with the help of the good people in this forum. When I looked for a good sleep expert Neurologist and called around their receptionists and list of online expertise all said they were experts or experienced with RLS. When I met with some of these so called experts, they knew nothing more than prescribing Ropinerol for RLS.
When I finally met a movement specialist, who had RLS herself put me on the Pregabalin & Tramadol combo. She and my pharmacist told me these two medication‘s need to be taken together at the same time every day at 6 1/2 to 7 hours apart due to the half-life of 6 1/2 hours of Tramadol and Pregabalin, with overnight being the only exception. So, I take this combo at 8 AM, 3 PM and 10 PM. Since I have been on this medication combo, I’ve had almost no concerns with RLS any longer, except occasionally when I’ve been sitting too long or I have exercised/walked too much.
A tip for you and others using exercise to manage exercise, too much exercise that causes swelling or inflammation/knee and or ankle pain can exacerbate your RLS.
What I’ve learned for any RLS experiences at night or any time, I use Magnalife’s Relaxing Leg Cream. It can be purchased in most pharmacies and online. It’s a wonderful non-greasy cream I just apply all over my ankles to knees, let it dry (5 to 10 minutes) before putting anything on your legs. Since my knee replacement a year and a half ago, I use it every night before bed at night now. It works so well to quell any night time occurrences due to some remaining swelling, pain and inflammation from the surgery. I also use Voltaren when I have some knee inflammation, which happens frequently again since my knee replacement.
When I started Pregabalin, it took about a year to get used to the effects of the medication, i.e. weight gain—about 10 pounds, which I lost after the first year, and sleepiness an hour after each dose of both meds, and a little spaciness. it took about a year, and it was worth waiting, before these three side effects abated. I have none of those issues now.
Like any medication it takes time to get used to it but hang in there, Pregabalin works. I would suggest you speak with your doctor or pharmacist (they know more about these meds than most doctors) about the importance of spacing out your dosage of Pregabalin. Good luck to you. ✅
Good afternoon, Bganim1947, and thank you sooooo much for your prompt and comprehensive reply. Our experiences--and if I may say so, our cynicism--appear to have much in common. To share mine, I only need change some pronouns, substitute Mirapex for Ropinerole, and mention some additional creams and ointments that I applied with various degrees of virtually no relief. Well said; extremely helpful and reassuring!
To the extent that I have any as yet unarticulated, substantive observations to share in reply, it would be regarding Ultram/Tramadol. Over the more than 20+ years that I took daily doses of 200 mg aggregate (2 x 50 mg AM; and 2 x 50 mg PM), I found it to be the most effective remedy (day or night) with little or no side effects. To be sure, this conclusion lay buried for decades as it was obscured and confounded by the various other medications contemporaneously prescribed for me.
Only after DAWS and discontinuance of Mirapex and Vicodin did I recognize Tramadol's true benefit. In fact, while successfully titrating off Tramadol during the period October 2022 - December 2022, I learned that, not only was Tramadol the best of the lot, but that four daily doses of 50 mg each (and later only 25 mg each) were equally if not more effective than were two daily doses of 100 mg each.. Why I never was prescribed the extended release formulation escapes me.
The efficacy of Tramado for the relief of RLS (even without other RLS medicines) is supported by the reviews posted at drugs.com/condition/restles... Tramadol wins by a large margin. But Tramadol no longer is an option for me. I discontinued only because no doctor with whom I consulted would renew my for same without me first singing a Pain Management Plan (PMP).
I'm not sure if you are familiar with same, but the PMP would have required, among other things: random blood and urine tests; Rx hand-delivered or mailed to me and only in paper format; requirement that Rx and all refills of same, if any, be filled at one and the same pharmacy; no new Rx if old one was lost or destroyed; and being blacklisted nationwide (USA) from further Rx for any opiate (or any scheduled medicine?) if I dared not to follow all of the "doctor's" orders! Thanks, but at my age and circumstances, I refused to be treated as a drug addict.
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