Now on Gabapentin, not sure about it.

[Gmc54]

I have had rls for over 30 years, and many years ago I was given Pramipexole. I refused to increase the dose, so my GP begrudgingly gave me Tramadol. Like the Prami it worked for a while, then stopped working. GP offered my Ropinerole, I declined, he said there was no other option.

Long story short - This GP retired to be replaced by a young doctor........she gave me Gabapentin, which gave me some relief, I was getting 4/5 hours sleep most nights, however the dose now needs to be increased. I was on 600, for about a year, now on 900. I know this can be increased further if necessary, but I wonder if this is wise.

There are so many horror stories about this drug, in fact there are Facebook groups for people who have had negative side effects from it. At the moment I have no side effects at all. Not sure if I want to keep increasing the tablets if they are going to be as hard to get off as the da drugs if I have to keep increasing, and I end up on the maximum dose.

I would appreciate your thoughts

[ChrisColumbus]

1. The Mayo Clinic Algorithm states: "Most RLS patients require 1200 to 1800 mg of gabapentin daily, but doses up to 3600 mg daily can be used.......multiple doses of gabapentin, spaced at least 2 hours apart, may be necessary to enhance absorption and efficacy."

2. There can be side effects, with some being more susceptible than others - particularly in the early days of taking the drug. Some people who can't tolerate Gabapentin find that they can take Pregabalin.

3. For more detailed advice, including on timings and when to take other drugs and supplements - and which to avoid- check past replies by Sue Johnson, who may well Reply here.

[SueJohnson]

If you haven't had side effects after a year (they usually develop right away, certainly within a month) you won't have any, not even with increasing the dose except possibly one - which is slight edema in your lower legs. I take 1500 mg but didn't develop the edema until I was on 1200 mg. It doesn't bother me at all. The maximum dose is 3600 mg and unless you are 6 years old, you will never need that much since 600 mg apparently worked for you at one time. Yes you can develop dependence, but then you only need to increase it by 100 mg to gain many more years before needing to increase it by 100 mg again. And if somehow you needed to come off it you can always do so slowly without any withdrawal effects. That said you need to take it the right way. Take it 1 to 2 hours before bed. Since you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption.of gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a... Have you had your ferritin tested? If so what was it? Increasing it to 100 or more reduces symptoms in 60% of people.

[wildlegs]

I have had RLS for 30+ years also. I’m 78 and live in Wisconsin. I’ve tried several different drugs over the years but the only thing that ever worked for me is Tramadol. Was prescribed 100mg about 12 years ago and it really helped. After several years my doctor increased it to 200mg a day and again I was 95% pain free (no more walking the nights). But then about 7 years ago the FDA decided that Tramadol was a opioid and it became hard to get. I went for five years with just being able to get 100mg and it was about 60% help for me (back to walking until 3 or 4 am). I’ve changed doctors three times in the last five years but I think I have one who will listen and help. I’m still taking 100mg of Tramadol but I also take 1mg of Pramipexole and the combination is working great. I’ve read articles in this site that say this combo doesn’t work but for me it’s been great. I went to pain doctors for a while but they just didn’t seem to understand RLS. I now go to a sleep disorder doctor and he seems to know all about RLS . Good luck with RLS and don’t give up on Tramadol.

[Rosyrestless1]

I understand the dilemma and it's exactly why I don't use any prescription except tramadol. Tramadol is an old drug with very few short/long term side effects. I still use it successfully much of the time but I do have to use magnesium oil or cream every night and I also take oregano oil which stops some of my symptoms associated with digestion. I have found that rls is greatly increased by large meals and high carb meals so I eat small and high protein foods. It's by no means a sacrifice and I mostly eat what I want but often less of it. I use emulsified oregano oil tablets but they are hard to get and expensive so give some drops or soft gells try. Between the three I have pretty regular sleep. There are no complete relief solutions that I have found but it is manageable. I also drink carrot juice when it's particularly aggravating. Carrots are one of if not the most anti inflammatory veg there is and once my gut is calmed my rls is far less of a problem. The only other useful herb I sometimes use is skullcap, which calms my legs down from the rls that isn't gut related. It's helpful and good to have extra options.

[Kayaks]

I didn’t like how Gabepentin made me feel. I have been using Tramadol for 15 years or so and am currently taking 250 mg/day. It works for me. Sometimes it feels like it takes too long but without it I would go mad!

[Sunrise2525]

I , like you have had rls for over 30 years. Every medication known to man has been subscribed. I was even on a three day fentanyl patch. My body kept getting accustomed to each medication and the dosage had to be increased so I even got just a few hours of sleep. Tramadol was the same way. I finally watched a video online where the sufferer found that kratom helped. I ordered some from a place he recommended and started taking it nightly. That was 2 years ago. Aside from a few bad nights, it has worked. It is not legal in all states and the FDA has tried to schedule it, but the Kratom association and some congress members have stopped them. Goggle kratom association and do your research. You will have to vary taking different strains to avoid having your body getting used to it. Kratom is a member of the coffee family. The two active ingredients that work on rls are found in the leaves. I've had no side effects. It has worked to calm the legs and to work against the other evil of rls: too much glutimate and the general restlessness that it causes.