Hello, as some of you might have read, I was prescribed 75mg of pregabalin to control my PMLD and RLS. This is the first medication I ever tried in my life to try to work on this.
During the first few weeks, although I experienced side effects such as feeling sedated, tired, and drowsy in the morning (which eventually all subsided), I slept extremely well. I was surprised by the almost immediate effect, but I was finally able to sit still in the evenings without twitching or jerking of my legs, and to sleep up to 8 hours!
Over the last few days, RLS has come back.
I had a chat with the GP this morning who suggested increasing the dose to 150mg, 75mg to be taken in the morning, 75mg to be taken in the evenings.
He also suggested I read extensively about it to see what other things I could do to help eg manage caffeine, alchol, etc - which if I'm honest I don't think ever majorly affected my RLS.
He said that splitting the dose works best, but should I feel to tired in the day, to then start taking it all in the evening after a couple of weeks trial time.
Has anyone else started splitting doses when increased, and how did it go?
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Figar
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Hi Sue, it was suggested by the GP as apparently splitting the dose is the most beneficial way to take it for RLS - I do not experience symptoms in the day. I experience PMLD in the evening and RLS at night; calms down around 6pm!
More than what I want to do, is what I have been told to do by the GP! I raised some concern over a morning dose myself. Confusing and frustrating to say the least
Unfortunately GP',s normally know next to nothing about RLS -,they don't teach it in med school .Taken for chronic pain then yes it is advised to take a dose morning and evening but not for RLS unless you get daytime symptoms. As Sue says your doctor is incorrect Best wishes Pipp
Hi Pipp, I'm not dismissing what Sue is suggesting. The fact that the GP is now looking to have advised incorrectly, makes me wonder about the first prescription in the first place!
Good morning, Figar. Your experience is very similar to mine. I am going through this experience at this time, so I can share my experience in "real time."
Supposedly, one does not feel the benefits of pregabalin until several weeks or more following first administration. Such was not the case for me. I felt improvement following the initial dose; and somewhat incongruously, I perceived less of a benefit as time went on. By increasing the dose amount and modifying the dose scheduling, the maximum relief was attained.
Because of my age, my new GP (whose competence and professional judgment I respect) prescribed an initial dose of 1 x 50 mg pregabalin at PM, increased one week later to 2 x 50 mg PM, and later to 2 x 75 mg PM. Though I experienced relief following the 1 x 50 mg PM dose, that relief lasted only one or two days. RLS agony during late evening/early morning hours (esp. ~1:00 AM - 3:00 AM) returned. Then I visited my new neurologist.
The neurologist suggested that instead of taking 2 x 75 mg PM in a single dose, I stagger. This was predicated on the facts that: (1) Pregabalin is quickly absorbed (30 minutes); but (2) insofar as RLS is concerned, the benefit of pregabalin lasts between 4 - 6 hours. Thus, by staggering the dose (i.e., 1 x 75 mg pregabalin @ 10:00 PM; and1 x 75 mg pregabalin Midnight), I could attain a blissful 6 - 8 hours of RLS-free sleep. This approach was designed to tackle the worst of my RLS (late evening/early morning); I would "just have to live with" RLS discomfort during the daytime.
Initially, the revised schedule kind of/sort of worked for a day or two. However, I awoke around 6:00 AM with RLS discomfort. I asked my neurologist if she would increase my prescription to be for 1 x 75 mg three times daily so that I might take the 3rd dose to fill in the gaps. I tried this new approach. Again, any relief was short-lived. In a matter of days, I no longer experienced any relief when I needed it most. Instead of 6 - 8 hours of RLS-free sleep, I had only about 2 hours of RLS-free sleep, from about the first PM dose to around 1:00 AM, at which time my RLS returned with a vengeance. What to do with the 3rd dose?
This past evening, for the first time, I did not wait till 6:00 AM to take the third dose. Instead, I doubled-up: shortly after my 1:00 AM discomfort commenced, I took the 3rd 75 mg pregabalin. Within 30 minutes, I felt its effects. I slept soundly till 7:00 AM. Though I had some morning discomfort, it was minor.
This evening, I will take 1 x 75 mg pregabalin in the late evening (~10:00 PM - ~11:00 PM), and then take 2 x 75 mg pregabalin around Midnight. If all goes as planned, it should provide the optimum relief without horrific RLS discomfort @ ~1:00 AM - ~3:00 AM.
I am to call my neurologist to prove a status update two weeks hence, and then am scheduled to meet with her some weeks later. Hopefully, I will be able to report success.
As for side effects: initially, I felt sleepy ("somnolence) and experienced extreme dry mouth. In time, the somnolence abated. The extreme dry mouth waxes and wanes dependent upon the dosage and timing of pregabalin.
NOTE: It is imprortant to monitor pregabalin side-effects and to discuss same with your doctor. This is my second go-round with pregabalin. Because of conservative dosing and titration, my side-effects are minimal. However, my first go-round at behest of now former "sleep expert" eventuated in horrible and dangerous side effects, that, in my case, included: somnolence and unexpected dosing off; proclivity toward accidents; blurred vision; unsteady gait; and extreme dry mouth. These side effects potentially are life-threatening! I recommend that you do not drive a car, operate heavy equipment, shave with a razor, or engage in any activity where balance, alertness, a steady hand, clear vision, and full time and attention are required until you are sure that you can do so safely.
May I ask, did your GP refer you to a neurologist or did you down the private route?
I was a bit disappointed that when I mentioned to my GP practice the terrible side effects I experienced the very first few days, especially in the morning, they considered that as an not urgent matter (I know they are busy, but I do have to drive for work and there is no way to avoid that for me).
I mentioned to the GP I talked to today (a different one) that I can't afford to be sleepy in the morning as indeed I have to work and drive. I also work with people and animals so besides the driving part, I have to be 100% on the ball all the time. He said that as I'm already taking pregabalin, I shouldn't expect those side effects anymore, but now I'm not sure when to start increasing the dose as I don't want to run the risk to take it and then be unable to work.
Like yourself, I experienced positive effects almost straight away, which to the GP was a sign that we are on the right track.
I hope the approach you now described will be successful for you! Have you tried other things (from diet to meds) for your RLS before?
Good afternoon, Figar. I am glad that you found my earlier reply helpful.
Your first question suggests that you do not reside in the US . Hereabouts, in general, a specialist (neurologist) will not see you absent a referral. So I suffered for the better part of a year under the supposed care of my now former sleep expert until I finally "fired" him and went hunting for a new doctor to treat me. I was impressed with my new GP (saw her first only this past December), and told her that, if she could treat me, I did not desire a referral to a neurologist.
My new GP is knowledgeable about RLS. She suggested that we give pregabalin another chance in light of the fact that both pramipexole augmentation and DAWS now were behind me, Nonetheless, she urged a referral to a neurologist expert in RLS for further treatment, and made the appointment for me.
It is unfortunate that your physicians were dismissive of your concerns regarding the side-effects. My new neurologist confessed that though she had treated persons with RLS, she did not consider herself to be an expert on this disorder. Still, she was sufficiently knowledgeable about both pregabalin and RLS that she asked me whether or not I had experienced any of various side-effects. I said yes to a few. She then jogged my memory by listing others that I had forgotten about.
The first go-round that I had with pregabalin was worse than useless. My now former "sleep expert" neurologist titrated me up too quickly (I later found out that pregabalin wouldn't work if a person had augmented on pramipexole and, in any event, would not work while a person was suffering from DAWS). Though I already had augmented and though I was at that time undergoing DAWS, the "sleep expert" persisted: from 75 mg initial dose (literature says to start with only 50 mg for RLS in case of seniors such as I), to doubling to 150 mg, and again doubling to 300 mg. I said "Enough"! when the "sleep expert" said "Let's try 600 mg."
First go-round I had all of the side effects earlier noted. I informed the "sleep expert' of the various side-effects that I had experienced. Among them: I inadvertently had sliced my throat with a razor while shaving; I bled for days from the 3" slice for which a trip to the ER and stitches would have been indicated. I mentioned this merely to inform the "sleep expert"so that he would be wary next time he prescribed pregabalin for other patients with RLS. True to form, however, the "sleep expert" reacted defensively as if I was alleging medical malpractice on his part.
I have a new car that I love; however, I abstained from driving as much as I would have wanted until I was over the worst of the side effects. These side effects were pernicious, and ironically were exacerbated by the very condition that pregabalin is supposed to treat: RLS. Without warning, I sometimes would be sitting on the edge of my bed or wherever; next thing I knew, I dropped over sound asleep. I thanked Heaven that I was only sitting on my bed (or wherever) and that I recovered just before my head and body crashed to the floor. Can you imagine this experience while driving a motor vehicle or while operating heavy machinery or even while just sitting on the edge of an overlook while admiring a scenic mountain view?
Have I tried other things before? Yikes! I've posted many (lengthy) comments and replies to others' comments about the long, tortured (and tortuous) road that I traveled over these past 30 years and more seeking relief from RLS.
I hope that the foregoing treatise is responsive. Be well.
Generally speaking the side effects do not increase with increased dosages. The exception being if one develops edema in the lower legs. That usually doesn't appear at all until you are on larger doses. I have it, but it is not a problem.
Hi, SueJohnson, Happy New Year if I didn't earlier wish to you.
It was my understanding that one reason that pregabalin is titrated slowly is to minimize side-effects caused by higher doses. My own experience was consistent with the available literature. Maybe my experience was just another exception to the rule.
It is advised once 3 weeks is past to increase it by .25 mg every 2 days. The reason is to see if it works at the increased dose and if so to stop rather than increasing. Every 2 days is not really slowly and I have not seen anything about doing it slowly to minimize the side effects. "The proportion of participants reporting at least one adverse event was not affected by dose, nor was the number with a serious adverse event (pregabalin)" cochranelibrary.com/cdsr/do...
Hi, SueJohnson, Good morning. Thanks for your reply. Like much of the RLS literature, scholarly articles on both sides of the same issue. I found some arguing against more than 300 mg pregabalin for RLS and others suggesting that 600 mg pregabalin was OK. To the point: I did a quick search just now (before morning coffee), and found three posts that suggested to me that the side effects of pregabalin were dose-dependent.
(1) NHS, Pregabalin slow dose increase Patient Information Leaflet April 2015 (Review Date April 2016), "Slowly increasing the dose should lead to fewer side effects. If have any problems at any time, drop back to the previous dose." northoftyneapc.nhs.uk/wp-co...
(2) A package insert for pregabalin, approved by NHS, "You are being started on a low dose of pregabalin and this will be increased slowly. This is to allow your body to get used to the pregabalin and to reduce the chances of you experiencing side effects. If after a dose increase you start experiencing worsening side effects ...try reducing the dose back down to the last dose you were able to tolerate for a few days. Then try to increase the dose more slowly." Patient Information Slow Titration of Pregabalin for Pain Relief (February 2020) //knowledgeanglia.nhs.uk/Link...
(3) An answer posted by a Dr. Marshal Bedder, Healthtap, in response to a question regarding pregabalin's side-effects, "Titrate slowly: The anticonvulsant class of medication, such as pregabalin, have side effects that are variable between patients and are often dose related. You are always best to slowly increase the dosing (titration) to the final prescribed dose." healthtap.com/questions/272...
Not sure how you arrive at that understanding. With most medications - including pregabalin - side effects effects tend to correspond with dose.
Hi, Figar, me again. I spoke too soon! It's about 2:45 AM local time now (US East Coast). I made the mistake of splitting the pregabalin dose: 1 x 75 mg ~10:00 PM; and 2 x 75 mg ~Midnight. Doing so left nothing in reserve. Am in horrific agony now (~9 - ~10, scale 1 - 10). Can't sleep.
The tragedy here is that I was so atypically discomfort-free at 10:00 PM that I wondered if I should take an evening dose. I relented and now suffer.
Some experts have said that once a person augments on a dopamine agonist, their brain is permanently rewired and, as such, pregabalin may no longer be an option for them. I may be among those poor souls. I'll give it one more go tomorrow by returning to earlier dose: 1 x 75 mg 10:00 PM; and 1 x 75 mg PM. The 3rd 75 mg capsule will be in reserve as/if needed.
Regardless, there now appear to be no other options as I've tried just about every known medication and the only one that worked w/o side effects or tolerance (Tramadol) is beyond my reach as I refuse to sign a Pain Management Plan.
Be well.
• in reply to
Hi, All. To update my last reply: I too 2 x Advil Dual Action (combination ibuprofen and acetaminophen [paracetamol], "collapsed" in place face down on my bed with my legs dangling mid-thigh off my bed. Fell asleep shortly thereafter. Awoke six hours later in the very same position, feeling rested. Will try 1 x 75 mg ~10:00 PM, and 1 x 75 mg ~Midnight this evening. Hopefully, that will work. Be well.
Hi, SueJohnson, and thank you for your reply. Hmmm! Not so sure if pregabalin works for me on a sufficiently consistent basis as to consider myself fortunate. The only medicine that ever fit that bill was tramadol which, due to my princinpals (stubborness?), I no longer can get due to unwillingness to sign PMP. I still have the remainder of unused Tramadol from last Rx in late August, but am unwilling to take any more as I just titrated off same. Still, I have not yet returned unused supply to pharmacy nor tossed. Sort of like an empty bottle kept by a reformed alcoholic to remind them of their former ordeal.
Per previous, around 10:00 PM this evening, I will take 1 x 75 mg pregabalin, then another about Midnight. Hopefully, I will gain some semblence of a good night's sleep.
Regrettably, despite my imagination to the contrary, my mysterious shortness of breath/ chest tightness continues unabated. Will see pulmonologist and then cardiologist over the next few weeks. Am hopeful they will be able to diagnose and treat. If not, I am not sure how I will be able to cope with RLS + whatever else is found.
As someone who ALWAYS ends up with the “uncommon” side effect trust me that it is possible.
• in reply to
Hi, SalemLake. Hadn't heard from you in a while ...figured you were trying out new skis. Anyway, per usual, thank you very much for your insights.
It would be the easiest thing in the world to attribute my shortness of breath/chest tightness to pregabalin. "Unfortunately" from the diagnostic perspective (and quite ironically), I first incurred these symptoms while fast walking toward home in the rain following my first visit with my new GP who had just electronically sent to my pharmacy her first Rx for pregabalin. I took the first dose later that evening.
I discussed my symptoms with my GP two weeks later during a follow-up at which time she did an EKG and other tests. I again discussed with her two weeks from then when the results of the thoracic ultrasound were reported. She examined me carefully and I believe thoroughly mindful of the test results. Her conclusions were that I did not sustain a "heart failure," that my only heart damage was (as you earlier suggested) a mild-moderate mitral valve regurgitation that appeared not to adversely affect my normal functions. Nonetheless, she did refer me to a pulmonologist and to a cardiologist for further examination. I will see them in the coming weeks.
Whence cometh my shortness of breath and chest tightness? I did some informal lung-capacity tests based on YouTube videos (silly, I know, but what the heck), and found that my lung function appeared very good (based on ability to hold breath w/o exhaling for ~60 seconds or more; and ability to walk up five flights of stairs (~70 steps) to my apartment w/out need to catch my breath). Still, at the conclusion of my mountaineering (stair-climbing), I experienced awful chest tightness, shortness of breath, and pain in my back. With RLS, I can not abide this much longer.
I also thought it might be vaccine-related, but my last vaccine was months before. I then researched COPD, Asthma, allergies, etc., but found that my symptoms didn't fit into any of the common symptoms (my lips are not blue; I don't have a fever; I am not sweating; my lower limbs are not swollen; pollen count is nil; if exercise-induced, the symptoms should have abated after rest; etc.). And, though there are now many dogs in my "pet-free" building, in the past I previously have petted many w/o any allergic reactions. Cats are another matter (I am allergic to them), but fortunately I have not yet seen one in the building.
Per GP's instructions, I continue to take Nasocort nasal spray. It kind of/sort of provides interim relief from nasal congestion. Then, it's back to scratch.
Thanks again very much. Hopefully, the cause will soon be diagnosed.
Be well.
• in reply to
Yes I am confident you will get to the bottom of it.
• in reply to
what were you taking for RLS at the time of the first incident?
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HI, again, Salem Lake. I was in the final measure of titrating off tramadol; other than some Vitamin supplements that I had been taking for a while (D3; B12) per suggestions of previous doctors, and some topical medicines for unrelated matters, that's it. I had jogged/exercised/climbed stairs earlier while on these medicines many times w/o any similar reactions. Who the heck knows? May never be diagnosed correctly. Leads me to another story but unrelated to RLS, so I'll defer. Be well.
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