Gabapentin not working anymore for RLS

[magarlick]

Dear all

I started taking 1200mg Gabapentin for RLS and PLMA a few months ago. I take 600mg at 7pm and another 600mg at 9pm. It has been a life-saver, quite literally. Until now. After such a short time, it's no longer working. The symptoms started to come back about a week ago. So last night I took 1800mg (7, 9 and 11pm) and that had no effect either. I am at a loss as to my next move.

My understanding is that I can't take more than 600mg at once as the body cannot absorb it, which is why the doses are two hours apart. I could take more 600mg doses, but I'd have to start at 3 or 5pm, and by the time I get to bed, those earlier doses would be just about leaving my system.

Please can anyone advise.

With much gratitude.

Mark.

[SueJohnson]

It is normal to have to increase your dose in the first year but usually by only 100 to 200 mg so it is very strange that increasing it by 600 mg didn't work so I would look for some other cause for your increased symptoms. Have you changed anything at all from OTC supplements to medicines to food to lifestyle changes to timing of taking other medicines?

As to your other question, when you need more than 1800 mg you can switch directly to pregabalin by dividing the gabapentin dose by 6 so for 1800 mg that would be 300 mg. Pregabalin can be taken all at one time.

[magarlick in reply to SueJohnson]

Thanks for your reply, Sue, as ever. No, no changes at all so I'm at a loss. I could give Pregabalin a go. What's the maximum dose? Are there any other meds, aside from the abandoned ones that cause augmentation?

[SueJohnson in reply to magarlick]

The usual maximum dose is 450 mg although one could take up to 600 mg. The dopamine agonists are the only ones that cause augmentation.

[MrCrow]

Doesn't gabapentin usually take a couple of weeks to show its full effect? I know that this is usually said when you are starting it but perhaps it also applies to dose increases too. Maybe that's what's happening here and you just need to wait longer before the full effects kick in.

It could also be that you simply aren't absorbing it well beyond 600 mg. There's another drug called Gabapentin Enacarbil aka Horizant which afaik has improved absorbability. Maybe that could be worth a try?

[magarlick in reply to MrCrow]

Thanks for your reply. Yes I have heard of that med. Certainly that or Pregabalin are worth a try.

[SueJohnson in reply to MrCrow]

It takes 3 weeks to be fully effective but after that it can be increased every 2 days and is immediately effective.

[Islay9]

I had to increase gaba until it was not viable to take the higher dose because of timings.

So I’ve switched to pregabalin. I find it so much better as I don’t take it until 10pm which means I can now function again in the evening unlike when starting the gaba at 6pm!

I’m at 450mg (10pm) now with a 30mg dihydrocodeine (10:20pm) and it seems to be working. It took a few weeks to kick in properly (no pun intended!) but the last several nights have definitely seemed better.

I’m also on ferrous sulphate to work on my iron.

[magarlick in reply to Islay9]

Thanks so much. Long may it continue to benefit you. This disease, or whatever it is, is a bloody nightmare.

[MrCrow in reply to Islay9]

If you count the total number of years since you started gaba till the time it was able to provide relief at the maximum dose, how much would that be?

[Islay9 in reply to MrCrow]

Started gaba March this year switched to Pregabalin in August.

[MrCrow in reply to Islay9]

Is this the first treatment you’ve done for rls?

Because you’re already at the highest recommended dose of 450mg for pregabalin.

I was wondering why you reached peak dose so fast.

[Islay9 in reply to MrCrow]

I’ve been suffering severely for 5 years now and have tried everything except DA’s.

[MrCrow in reply to Islay9]

What did you take before mar 5 this year?

[Eryl]

Gabapentin works by bocking the nerve signals but does nothing about what's responsible for causing the neurons (sensoly nerve cells) to send out those signals. The cause is often inflammation of the neurons caused by foods in the diet. You can google lists of 'foods that cause inflammation'. Some foods fight this inflammation to some extent but it's more effective not to cause it in the first pace, you can google 'foods that fight inflammation'. The inflammation could also be caused by fungal infections, mould or heavy metal poisoning but these causes are rare.

[magarlick in reply to Eryl]

Cheers. Will definitely look that up.

[calschwartz27]

I would suggest taking 600 at five and 600 at seven and 600 at nine if you need it. The same thing happened to me but when I backed it up to 5 PM I was fine. I also don’t drink anymore no alcohol at all. If I have even one drink alcohol. The gabapentin doesn’t work at all. I also take iron every other day one tablet. I was taking a daily, but I have Dr. Winkleman as my doctor in Boston and he told me every day is too much and it actually backfires.. I also take a multivitamin for women every day. Avoid other meds there’s a whole list that can make the gabapentin not work, including Pepcid and other stomach pills. So I avoid Pepcid at all cost. I’m so sorry I feel for you. It’s awful. I never had to go to pregaba , but I did get a prescription because I was in the same boat, I changed the things I recommended and the gabapentin worked again. I’ve been good for 10 years on this regime. Of course I have breakthroughs where there’s sometimes several nights in a row and I can’t figure out what caused. And then I get into a hot bath. And that seems to work pretty quickly. Good luck take care and try to hang in there ! Also, Sue johnson is a saint. I’m so glad I found this support group because I was so depressed as well. And nobody really understands, friends family they don’t get it.

[magarlick in reply to calschwartz27]

Thanks so much for your answer and support. Much appreciation and gratitude.

[TheDoDahMan]

If all else fails, remember that low-dose opioids have helped many who thought they were beyond help.

[Kayakcarole]

I have endured RLS for 50 years and only in the past 5 months have I been able to say it’s really improving . I have a strong genetic link to this disease. I now believe the root cause is not low iron but inflammation. I’ve been working with a Naturopathic Physician who ordered many blood tests which showed different sources of inflammation & toxicity. I’m now on multiple supplements as well as homeopathic remedies and have eliminated foods that I showed significant sensitivity to. Those foods really increased my inflammation. Wish I had known this info years ago. My ND is quite sure we can significantly reduce or eliminate my RLS.

I’m able to control symptoms with 600 mg Gabapentin, 2.5 mg Low Dose Naltrexone, and an occasional puff of cannabis flower.

[MrCrow in reply to Kayakcarole]

What foods did you have to give up?

[Kayakcarole in reply to MrCrow]

I’m blood type O which for most of us means all dairy is very inflammatory. I also tested quite high to almonds and peanuts but that could be from consuming them both on a daily basis for years. I have leaky gut and digestive issues like SIBO ( sm intestinal bacterial overgrowth) so fo much better on low a low FODMAP diet. Sugar is very inflammatory to everyone so I avoid that. I think food sensitivity is quite individualized except for the classic offenders.

I had iron infusions and took iron supplements for years and never had any benefit. I’ve recently read several articles that also suggest that RLS is not a lack of ferritin in everyone but is clearly an inflammation issue.

[Graham3196 in reply to Kayakcarole]

Its so difficult to have so many issues at the same time Can you remember where the articles relating inflammation with RLS were published?

Can a pathology lab measure inflammation?

[Kayakcarole in reply to Graham3196]

facebook.com/share/p/xnTgBQ...?

[Kayakcarole in reply to Kayakcarole]

Hoping you can read this article.

[Kayakcarole in reply to Graham3196]

Lab blood draws like C-reactive protein etc show inflammation but not the source of it. A functional medicine dr or Naturopath can order blood work that shows more detail concerning food sources as well as heavy metal and other sources of toxicity.

[magarlick in reply to Kayakcarole]

Thanks! Like the other person, can I ask what feeds were causing your symptoms?

[Kayakcarole]

see my reply to Graham3196

[magarlick]

Just to update you all. Have been on 1800mg gabapentin now for two weeks and can confirm that the increased dose (up from 1200mg, which had previously been effective) has made no difference. For whatever reason, it's like I'm taking nothing at all.

It took two weeks to get a phone call with the GP (don't get me started) and he has suggested Pregabalin. I'll start on 150mg a day, which will probably not even touch me, then increase slowly.

Does anyone know if I have to split it into multiple doses because of poor absorption, as with gabapentin?

Thanks for helping.