I need advice and the wisdom of the members of this group. I’ve just had my Gabapentin increased to 900 mg at night and my Tramadol increased to 200 mg from 150. I got about a week of half decent sleep before it went downhill again . I’m up every hour or so and it takes from 15-30 min to settle after each bout. I’m exhausted physically and mentally. I’m on a very restrictive anti inflammatory diet and don’t take alcohol or caffeine . Could I be augmenting from either of those drugs ? I took Ropinarole in the past and had the problem with that. I’m so discouraged and don’t know where to go from here. I have a family doctor who is disinterested and doesn’t know a lot about RLS but the last time we spoke he thought I should try Pramapexole which I am reluctant to do . Advice is appreciated and thanks in advance .
At my wits end : I need advice and the... - Restless Legs Syn...
At my wits end
Medications (IMHO) are only patches, so usually they only work for a while. You're smart to cut alcohol and seeking anti-inflammatory foods.
What's been helpful to me of late is supplement, ALCAR (Acetyl-L-carnitine) a short-chain ester of carnitine (as in meat). You can buy it in powders or capsules (best IMHO cause it tastes nasty). I had read several people (from an FB group) say it helped but I had to first wrap my head around how you supposed to only take it in the day - cause it can be stimulating. BUT then I remembers how disasterous Melatonin, Serotonin, 5HtP is for us kickers, and it made sense. What helps most people sleep, gets us running marathons in our beds instead, and what other people find stimulating (ALCAR) helps calm us down.
thank you for the info. I have a question. Are you saying that the supplement recommended can have the same side effects as melatonin? Because I definately cannot take melatonin. Everytime I took it it kicked up RL like crazy. I figured this out even before I read up about the connection. So all that to say does this supplement mimic melatonin or not in your opinion. thank you! terri
No. The very opposite. ALCAR is nothing like melatonin - which you are right about. Almost everyone who has RLS has a big problem with any of the L-Tryptophan pathways chemicals (so 5HTP, Serotonin (including SSRI drugs), and melatonin.
What I was trying to say was that most of the stuff that makes people sleep - makes our RLS bad. And many of the 'stimulating' supplements (or drugs) calm our legs down.
If you read sources about when to take ALCAR - it says "morning or noon, but never at night". But for us 'Kickers', taking it at night can work to help us sleep. Remember the ‘Bizarro’ episode from Jerry Seinfeld? In the world of insomniacs, that’s basically us.youtube.com/watch?v=0LPIc5J...
One more tip: If at all possible, try to get outside or open a window (no glass, but screen is OK) and get some morning sun exposure on your retinas. So if you wear glasses take them off or lower them so you can let the rays hit your open eyes. You don't have to look at the sun, just look away, but make sure the eye is exposed to it. AM sun hitting your retinas will stimulate a number of helpful neurotransmitters, including dopamine. Wishing you peaceful nights.
It can be difficult to get a regime that works but try not to get too disheartened. Most people achieve a reasonable quality of life but it can take a lot of trial and error. I don’t know that much about gabapentin but I seem to recall that 900mg is not a particularly high dose so you may need more. It can also take a few weeks for the drug to build up in your system as you titrate up.
I have seen some people report that they experienced relief from pregabalin when gabapentin wasn’t effective. I have also seen reports that the timing of the dose with those drug can be important. I seem to recall people finding that splitting the dose - taking some in the early evening and more at bedtime was helpful. However, it’s also worth bearing in mind that they don’t work for everyone and there seems to be a higher rate of failure amongst those who have suffered augmentation on dopamine agonist.
Have you had your serum ferritin tested? It should be over 100. Raising this can help some sufferers. A recent study also found that rls sufferers responded well to the drug dipyridamole. So that could be another option I’m due course.
An anti-inflammatory diet can take a while to improve symptoms but also doesn’t work for everyone with rls. Some people continue to experience symptoms irrespective. Some sufferers actually find that a cup of coffee helps when rls symptoms strike. It may be to do with adenosine receptors.
There are other diets such as fodmap and low oxalate which are quite different from anti-inflammatory and some rls sufferers report great success on these so maybe worth looking into.
Thankyou for you response. I am on anti inflammatory diet and have crises over to low fodmap due to gut issues. My ferritin level is 40 and I take iron supplements .
I’ve have not tried coffee as I’ve read it should be avoided on the anti inflammatory diet, but I might try it next time I have a troublesome night…which will be any night now. I also find that fatigue or being overtired exacerbates my RLS symptoms .
Fatigue is a huge exacerbant for me. Far more reliable (ie will reliably make things worse) than anything I can identify in my diet.
Hi, I've been taking Gabapentin for two and a half years for neuropathic skin pain. I take 800mg 3 times a day. Last autumn I started to get hot feet syndrome and RLS, so I don't believe Gabapentin does much as a preventative or treatment for RSL. I have had other neuropathic problems (which doctors couldn't cure only prescribe drugs for) CURED with acupuncture. I would recommend this as a try-out treatment rather than throwing toxic pills at it. My acupunctutist uses a combination of western and eastern techniques which is the very best method. Sessions of treatment usually cost around £45 each and can take several treatments. At present I am paying for private treatment for a back problem as soon as thats sorted I'll be going back to my acupuncturist to see if she can cure the hot feet and RLS. If you can afford it, I would recommend trying this as a solution. But, get a good practitioner (but not a Traditional Chinese doctor).
I'm sorry to hear that gabapentin didn't help prevent your RLS, it's true it doesn't work for everyone.
However whereas it might be unpredictable whether it will work for any specific indivudual, clinical studies demonstrate that it is effective for the majority.
Otherwise, prseumably it wouldn't be recommended.
it also seems as if you're implying that gabapentin made your RLS worse. That would be highly unusual. There are many other medications that are known to make RLS worse, however, so perhaps you're taking one of these.
Another point is that since you have neuropathic problems anyway, the symptoms you are identifying as RLS may not be RLS at all. It's just a thought.
No, I don't think Gabapentin is making the RLS worse it's just that as it started 18 months after taking it, I kind of deduced that it might not be effective as a treatment. Well, not for me at least. My daughter also takes gabapentin and Tramadol amongst others for Lupus and also has RLS.The hot feet syndrome is more of a problem than the RLS at present and could get worse as the summer heats up. The HFT leads to the RLS if i dont keep my feet cold at night. I have a pet cooling mat for day use and I soak my feet in ice water for 45 mins before bed and sleep with an ice block between my feet. I am definitely going to try acupuncture. Just got to save for it first.
Thanks for responding. I should have made myself clearer. I have been taking 300 mg Gabapentin for about 5-6 months. It worked well for me for 3-4 months but my RLS became worse since then . I was also taking Tramadol 150 nightly. My Gabapentin was increased then several weeks ago because it was becoming unbearable , to another 300-600 mg nightly . After several nights at this dose it seemed that it was worsening . I wondered if it might be augmentation from the Tramadol. I even increased the Gabapentin to 1200 mg one night but it did not help. I was really worried because I don’t know where else to turn. And I know how bad it can get from when I augmented on Ropinarole . My doctor indicated that maybe I should try one of the other anti Parkinson’s , but I can’t do that. Things seem to have settled a little now in the past couple of nights so hopefully it will remain helpful. Thank you for your response.
Thankyou for your response. I appreciate your recommendation . I would never throw toxic substances at it initially . I have had acupuncture for it and the effects of treatments lasted 2 nights and then not at all . I have also tried a myriad of other treatments over the past 10 years and I will continue to do so before resorting to medication . But it’s been a necessary evil at this point . I’m so greatfull for the advice and opinion of this group.
I'm sorry in advance at how long this is 😊
Tramadol can cause augmentation. I thought for over 10 years that my RLS was just getting worse because I had a severe case of it. Turns out I was experiencing augmentation from the Tramadol. I got up to 400mg a day and continued to just get worse. I had symptoms 24/7 from head to toe and the Tramadol would help for a couple of hours at a time but then just come back worse. I was taking 4 or more hot baths throughout the day and night for years just to ease the symptoms a little. I got desperate and went searching for an answer and learned about augmentation.
My family doctor retired and another one replaced him. He refused to prescribe 400mg a day to me so we spent 6 months titrating me down to 200mg. It actually helped my symptoms to get to a lower dosage for a few months. But then, of course, the augmentation kicked in again. He wouldn't prescribe me anything stronger either so I just suffered for another 2 years. Finally I looked up neurologists that specialize in RLS and made an appointment to one I found 2 hours away at a teaching hospital.
She had me try a few different meds that I had never tried before and when even they didn't work she started me on methadone. It sounded really scary to me to take it but she explained that it's a very small dose and it's the treatment for tramadol augmentation. It helped to get me completely off the Tramadol in about 2 months. As I was titrating down on the tramadol by 50mg every 2 weeks she was increasing the methadone by 2.5 mg every week. Now I'm not taking any tramadol, had barely any withdrawal symptoms, and I'm taking 5mg of methadone 2 times a day. I barely have had any RLS symptoms in months now. The Augmentation is healing. If I do get any symptoms it's only in my lower legs. Not my whole legs, arms, back, hands and wherever else I would get it. I'm at the point that after my next appointment next month I'm going to start slowly decreasing the methadone to see if my daytime symptoms from the augmentation is getting better. I've taken 2.5 mg in the morning a few times. Once I was fine until about 4pm and another I lasted until 7pm. I haven't tried it anymore just because I decided to wait a little longer. But I really think I'll be able to eventually get to where I'm just taking a bedtime dose.
I could go on 10 more paragraphs about how wonderful I feel and how this was the best decision I've made and how I wish I had decided to find a neurologist years ago.
But I will stop now, lol.
If you have any questions please let me know. I hope you can find relief soon somehow.
Thank you for your response . I am on Tramadol as I mentioned and I have wondered if I may be augmenting . I do not have the dreadful feeling in other parts of my body but I do have it in my legs anytime after 12 noon and earlier some days if I try to rest after a poor night. I'm only taking 150 of Tramadol at night and my doc said to increase it to 200. I did that one night but I just couldn't deal with the dizziness and light headedness with the 1500 of Gabapentin, so I've stayed at the 150 Tramadol. I asked the doc about Methadone but he won't prescribe it. I can't see a neurologist without a referral from him and I cant even talk to him for another month as he has not been seeing patients since Covid . We have a shortage of family doctors so I cant just switch to someone else .He does send in the prescriptions however. I have been trying to treat myself as best I can with advice from wherever . Pharmacy has been helpful re dosing times and this group is helpful with knowledge and the opportunity to see how others are coping . But I really don't know where to turn .
Thank you for your story of great help. I cannot take gabapentin or tramadol. Requip worked for awhile then I got the backlash so I stopped. I was only taking .25 for 6 months because im very sensitive to meds. Long story short I'm so interested in the methadone and am willing to take anything to get a good nights sleep. If the benefit outweighs the drug its worth it. Because face it if you cannot sleep you cannot function much during the day. I'm going to look for a doctor here in Ca if something does not get better. thank you!!!
My dr wanted me to try Pramipexole as well but I’m also reluctant. I asked her to increase my targin by 5mg from 10-15 mg at night and it has helped quite a bit.On nights it doesn’t I take one paracetamol/codeine and that nearly always helps.
I think small increases in your drugs is the way to go, good luck
You can't augment from gabapentin. As Manerva mentioned 900 mg may not be enough. I disagree with her however that if 1200 mg doesn't work it is not worthwhile to increase the dose. I take 1400 mg, 700 at 7:15 pm and 700 at 9:15 pm and have no restless legs as a result.
Thanks for your response and your experience . All of the information is helpful .
I should have mentioned that while augmentation is more usually associated with dopamine agonists, tramadol is one of the few additional drugs where it has been observed. I see that SueJohnson has said that it is not possible to augment from gabapentin but there are at least two regular contributors on this forum (both very knowledgeable; one a former GP) who are confident that they did augment on an alpha2delta ligand. I'm not sure if it was gabapentin or pregabalin in their cases. In any event, I would not rule out the possibility of augmentation - in rare cases - on these drugs. However, it does not sound as though you are augmenting, Muftah. More, that you need more experimentation to get the dose right.
Also, I think you are right to resist starting pramipexole at this stage.
Thanks so much for your wisdom and insight. I have only recently been on increased Gabapentin. I have not really seen much improvement yet, but I don't like how it makes me feel . I know there are side effects to drugs , some worse than others .
Also, as regards the person who is considering acupuncture, it is one of the few complementary therapies that has virtually no reports of positive outcome for rls. I have nothing against acupuncture - it has a proven record in the treatment of some conditions but it has a very poor record as regards rls. Try putting it into the search bar to find some of the threads where it has been discussed for confirmation.
i am a believer in acupunture in general, but i found it made my RLS worse on the day (night) i received the acupunture treatment. keep a diary of how it goes and you will serif this is the case for you. i hope not!
Hi bupromorphine / temegesic has worked wonders for me . Doctors don't all like to prescribe it and I'm only on a low dose but I have no Rls unless I forget to take it . There is info on this site about it . Good luck it's an awful thing to have
I was on ropinirole for years but then augmentation set in. I am now on gabapentin. It works best for me when I take 300 mg at dinner time and another 900 mg about an hour before bed time. I was taking 300 mg at noon as my doctor recommended but then I felt a little lethargic the rest of the afternoon. That's when I decided to take the first 300 mg at dinner time, around 6:00pm. I finally fall asleep around 1:00pm. The difficult part for me is avoiding reading my tablet while in bed to pass the time, as I have found the light on the tablet has a negative effect on my sleeping. I have tried using sound to help. I have a device that simulates the sound of rain. Helps a bit. What I have found relaxing for me and it might sound odd, but I call up You Tube and watch episodes of individuals who have built cabins off the grid in Alaska, Canada, Sweden. Watching them build the cabins and embark on that life style is really interesting yet really relaxing as they have decided to leave the hurried world behind.
I absolutely agree with you on the absorption. On switching to pregabalin I agree with you on that too. In the US, however pregabalin is very expensive. It would cost $1,940/year on my medicare insurance plan, whereas, gabapentin costs $100.76. My only point was that more than 1200 mg of gabapentin DOES work. 1200 mg was not enough for me, but with 1400 mg I have no restless legs.
Yes Horizant isn't covered by my insurance plan at all and would cost $5,616/year.
Phew!
Talk to your dr. About smoking medical marijuana. I have been using it for years. Or take a trip out to CA and meet dr.buchfuhrer. He is the best rls doctor in the country.
Yes my gabapentin need would skyrocket over a couple weeks to crazy amounts… I would then take a three day “vacation” using l-dopamine that would reset me.
Ultimately I realized my 50 years of vegetarianism was destroying my guts and the cause of my low iron/ferritin/horrific rls .
One month as a grassfed Carnivore reversed all.
interesting approach. I have Ferritin in the normal range which is not the recommended range for RLS. Trying to get it raised but I realize oral iron supplements may not get you where you need to be .
indeed .. it took me 8 months with that method and then i relapsed two years later .There is no argument that iron in meat is waaaay more bioavailable than spinach etc. .. too crank it up more get beef heart .
Hi I would say to find a specialist in the field of sleep, this type of doctor should know about RLS. Not sure where you live but there is an amazing doctor at the Vanderbilt institute in Tennessee his name is Dr Arthur Walters, he helped me 25 yrs ago in NJ but he moved to TN. I was not happy! However I recently just had a very violent episode actually two episodes two separate days in hospital after spinal surgery. It was the worst experience I’ve ever had with RLS. I thought I’d rather give birth ten times rather then what was happening to me!! I am going to try and contact him to get a telemedicine appointment to explain what happened to me. Bc it was no joke . I wish he could educate other doctors about RLS. It must be done. Bc this cannot happen to anyone else. I feel so strongly about it. God bless you all. I hope you get info u need.
Thanks for the clarification . You have explained it very well Manerva . I am now on 1500mg and I am not certain at this point if it is more helpful. I think I need to give it some more time . Do you know if the effects may take longer as in weeks before improvement is noted? I cant find it in the literature but I think the Pharmacist may have mentioned it .
And in addition to cost ,the side effects of one may me more of a deterrant . I have not been on Pregabalin but a brief look at side effects was a concern.
Join the crowd. Being your owncare giver, you7 can google for a movement disorder Neurologist with a history for management or an endronologist. Our problems are not at the list. Talk to Maneva
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