Following on from previous posts, I'm now taking 600mg gabapentin at 20:00 and another 600mg at 22:00.
Unfortunately it still isn't having any effect at all, in fact the RLS symptoms are have gotten worse again and I now find it almost impossible to sleep for longer than 1.5hrs.
Is gabapentin a lost cause for me or should I still continue to increase the dose?
I know it's gonna take a while for the DAWS to calm down but I had hoped that after 2 months there would be some improvement, as you can tell I'm starting to go insane!
Thanks and happy holidays to you all!
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Hazuki
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Yes - increase your gabapentin by 100 mg every couple of days. According to the Mayo Clinic Updated Algorithm on RLS, most people require 1200 to 1800 mg. How long were you on the ropinirole?
Hi Sue, I was on it for around 15 years. I have read that gabapentin doesn't absorb well at higher doses, should I split it into 3 times per night.. eg 19:00, 21:00 and 23:00?
You are correct. Above 600 mg it isn't absorbed as well. You previously were taking it at 20:00 and 22:00. The last dose should be 1 to2 hours before you go to bed. So if you go to bed at 23:00, I would take 600 mg at 22:00, 600 mg at 20:00 and the added amounts at 18:00.
I would say if you get to 2400 mg which is not the max dose (3600 mg is) it is probably not going to work. When you get over 1800 mg you will probably want to switch to pregabalin so you can take it all at one time. If you do get to 2400 mg and it is still not working then your dopamine receptors were probably damaged by taking ropinirole. In that case you will want to reduce the amount you take slowly to avoid withdrawal effects. If you do so, you won't have any.
Opioids. Or 1) You could try clonidine - see my post a couple of days ago 2) You could try dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...movementdisorders.onlinelib...
Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.
Greetings, Hazuki.
As I may have said in my reply to your early comment, I too suffered DAWS. In my case, the worst aspects of DAWS lasted for about three months and continued in lesser form for months longer. When it was at its worst, I would have envied you for 1.5 hours of sleep per night: for days on end I averaged only ~0.5 hours, if that much, all the while writhing in twisted agony on the floor or on either of two love-seats.
In retrospect, the yardstick by which I am able to judge the larger portion of the duration of DAWS is the period between the onset of the disruption of my sleep-wake cycle and its restoration (i.e., a manifest change in the time that I customarily went to bed and the time that I customarily arose from bed). Instead of feeling sleepy at 11:00 PM, and arising from bed at ~7:00 AM, I was wide awake watching reruns of 1950's TV Westerns till 6:00 AM, and arising from bed sometimes as late as Noon. To this I add the months during which the collateral damage induced by DAWS rendered ineffective RLS medicines (pregabalin and Horizant among them). All tolled, I was not completely free of DAWS for about one year.
There is literature suggesting that once a person has augmentated--and in any event, while a person is experiencing DAWS--some RLS medicines (including pregabalin) may not be effective against RLS. At my first meeting with my new neurologist yesterday, I broached my concern that some potentially effective medicines no longer may work. I was relieved at my neurologist's observation that, in my case, DAWS appeared to be well behind me and that, therefore, pregabalin might work. Such appears to be the case.
Yesterday, my new neurologist tweaked the dosing timetable of the pregabalin Rx that had been filled at the behest of my new General Practice physician just weeks ago. Preliminary observations are that the tweaking worked.
I empathize with your current plight, and wish you a speedy recovery from your DAWS-induced Hell. The worst soon will be over.
Thank you for your detailed reply, very very helpful to be and others! In truth, if I wasn't taking kratom at night then I'd be on 10 to 30 mins sleep at a time, when I briefly ran out I had a night where the only respite from RLS and the fatigue of fibromyalgia was to be in the child-pose in the floor. I stayed there for about 30 minutes, got up to stretch, then back to child pose, occasionally I would drift off to sleep for about 1 or 2 minutes.
If it had carried on for more than anothe night it two there's no doubt I would have committed suicide, or gone to get myself committed to a psychiatric hospital in the hopes of being morphined into oblivion.
Although suffering another month of this is not appealing it gives me some relief that it will begin to ease off.
It makes me very angry and upset that we all have had to go through this, and that many others have it coming and they don't even know about it.
I'm glad you have a good neurologist, in my experience they are all clueless and seem to want to make the situation worse. The last one I spoke to said I should try to cure RLS with CBT!!
Good morning, Hazuki, and thanks for your further thoughts. I too was and remain angry that we had to go through this. Though I didn't mention, I had both tramadol and Vicodin handy, but neither one relieved my discomfort during DAWS--both were among those rendered ineffective. Though I understand that kratom is legal where I live, I chose not to take any. I suffered; and then suffered some more.
I read here and elsewhere that the suicide rate (risk) for persons with RLS is the highest of any group of persons who have committed suicide--even much greater than those who have committed suicide due to pain from terminal cancer. Clearly, you are not alone. Best to seek medical attention before taking more drastic and final step.
Hi, it stands for Dopamine agonist withdrawal syndrome... It should be called HELL ON EARTH SYNDROME. It referred to the prolonged symptoms (months or years) when coming off drugs like Ropinirole or Mirapex.
If you're taking a Dopamine agonist then you were probably not informed about augmentation and DAWS because most medical professionals dont even know they exist.... In my experience at least.
In the new year I'm going to contact a law firm and with any luck begin proceedings against the manufacturer and possibly the health service, it's the only way they'll stop prescribing these horrible drugs without gm informing people of their true nature.
Well I was on pramipexole for years with great success.Then as with all things they stopped working and yes I went through hell on earth coming off pramipexole.
I found it a terrifying experience and as you say hell on earth x 10.
The GPs THEN knew nothing about augmentation.
I have learnt about augmentation from the RLS Society.
I just had not heard of DAWS but now realise it stands for dopamine agnostic which I do know about.
2,100mg gabapentin not working for me yet but as Sue says I can ask to go higher in dosage if GP agrees.
Ask your dr about increasing your gabapentin. I also have problems with RLS when i dont watch what I eat. Last night ihad Chinese takeout...probably had MSG in it. Warch glutamine levels in food . Im off requip a week now. No alcohol, sugar, chocolate(sometimes coffee actually helps).i was doing pretty well on 600 and 300mg gabapentin. Pain is also a factor. Try to keep ahead of it with tylenol, advil or tramadol if necessary. I also took 750mg GABA suppliment this morning...VERY DIZZY...its doing something! Rather take this than gabapentin if possible.
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