is Gabapentin helping me?

[Ruffabug]

Hi. You’ve heard from me before and my case is very different to most. I have terminal cancer and decided I couldn’t cope with trying to withdraw from Ropinerole. So I am now on a 4 mg Neupro patch plus 2 mg Ropinerole. My neurologist is letting me increase the dose as the augmentation kicks in as I only have a few months left to live. My question is do I really need to be also taking the 1200 mg of Gabapentin as well? I’ve been on it for years as a support for the Ropinerole but I’m not sure it is doing any good whatsoever. It makes me very dopey at night ( when I take 700 mg) and also dizzy. As I have to get up 2 or 3 times in the night I feel at danger of falling. I take the rest at 6 PM and feel sleepy in the evening but that’s ok. I have an appointment with my neurologist coming up and want to know whether I should ask to wean myself off it. I don’t think he will know the answer. My wonderful support team here will, I am sure! BTW he has said I can take Buprenorphine and I think my GP surgery will prescribe it, but am putting that off for now as I know it will make me very constipated as I’m prone to that.

[SueJohnson]

You don't need the gabapentin for your RLS. It doesn't help much since you are on ropinirole. To wean off it, reduce by 100 to 200 mg every 2 weeks to avoid withdrawal effects.

[Ruffabug in reply to SueJohnson]

Thank you Sue. I thought as much. And when the time comes for me to very probably be on some stronger drugs, it would be good to have come off these or at least to be on a lower dose. As others here have said to go more more slowly I will follow them to be on the safe side.

[Joolsg]

Most doctors mistakenly prescribe gabapentin when augmentation starts in the belief it will reduce the severe RLS.It won't. Augmented RLS always breaks through. Gabapentin only works when you're completely off dopamine agonists.

So, as it's making you dizzy, and it won't be stopping breakthrough augmentation, you could start to reduce.

BUT, as you've been on it for years, you WILL get withdrawal symptoms if you stop suddenly. Any withdrawal would have to be done slowly.

Tell your doctor that you want to reduce it, and the reason why.

It might be reducing some of the nerve pain caused by your cancer, so keeping a low dose might be beneficial.

If your doctor is onside, reduce by 50mg a week to avoid withdrawal symptoms. That way you can also monitor benefits versus downsides of the dose.

Thinking of you and sending virtual hugs.

[Ruffabug in reply to Joolsg]

Thank you Joolsg. Your first para is very interesting. I was suspecting as much. Yes I will reduce very slowly as you recommend. Thanks too for the hugs! I am actually doing really well with treatment. However the longer I last the more I worry about my RLS at the end of life. Just pinning my hopes on the Buprenorphine if the dopamine agonists stop working on the higher doses.

[Joolsg in reply to Ruffabug]

Yes, the Buprenorphine can reduce augmentation symptoms and withdrawal symptoms.It is terrible that you are having to worry more about RLS than your terminal cancer. I do hope the MacMillan nurses are able to help and look through the RLS information on this site and RLS-UK.

Xx

[Classof69 in reply to Ruffabug]

Ruffabug, I know this is a forum for rls and I use Seratame, which is an over the counter 100% natural answer to my years of misery that the extreme RLS that i have , has given me and now is gone thanks to Seratame, b6 and magnesium citrate. More important is your cancer. I have a close friend that has stage four cancer, brain, base of the neck, privates etc. He has been given 6 months to live 4 to 5 times in the last 4 years. He is still working, he is a carver that works with wood. He uses NONI juice that has been developed by monks in Hawaii. Its called Wailua River Noni juice. Big Pharma showed up on the monks door step and now the label says nothing about cancer and helping. He also uses "balance 7 ". Also Essiac tea out of Canada that was developed by a husband and wife research team and it has help many people in the final stages of cancer. Make sure its the Canadian Essiac tea the US version was bought out by big pharma.

[Ruffabug in reply to Classof69]

Thank you for concern and advice.

[amrob123]

Hi Ruffabug,

It's a bit of a catch-22 situation. You really don't want to be in a position where you're vulnerable to falls. At the same time, given you have been on it for years there is a very high likelihood of withdrawal effects if you come off it with any haste.

I am currently reducing from pregabalin having been on it nearly 10 years.

For this reason, I have read very widely on other forums documenting other's experience of gabapentin / pregabalin withdrawal. The rule of thumb is to reduce by no more than 10% each month (and even then some people find it too much). In your case that would be dropping by 120mg for the first month, then 108mg, then 97mg and so on. This rule of thumb is hammered home by people who have helped hundreds of people through the withdrawal process.

I'm experiencing withdrawal symptoms doing a 10% per month tapers. Some people experience debilitating physical symptoms, while others have terrible psychological withdrawal symptoms. Paradoxically, withdrawal symptoms from gabapentinoids tend to mirror the side effects of taking the drug eg. brain zaps, fatigue, balance issues, tinnitus, vision problems etcetera.

I appreciate that having a terminal illness puts you in a different category to most but my advice would be to go slowly, and be aware that any unexplained symptoms you're having may be attributable to withdrawal. All the best.

[Ruffabug in reply to amrob123]

Thank you for your long reply which is really interesting.i will explain it to my neurologist and make sure I decrease really slowly. The 10% each month sound good. I will look out for any of those withdrawal symptoms and know what they are if I experience them. Hope not though!

[LotteM]

Kust want to add something about the buprenorphine. I hear you re the constipation issues. However, you could discuss with your doctor to trial it. And start with a low dose of a sublingual pill (0.2mg is the lowest, or cut the 0.4mg general in half). It works quickly, usually within half an hour. Just to see how you react to it. If you find it helpful, on a linger term you may want to discuss replacing it by a patch (if your skin can handle it), as it will give 24h coverage and one usually needs a lower dose that with pills due to the resulting more even level in the blood. I don’t don’t know how likelihood of constipation differs between pills and patch. Most likely that is an individual thing anyway. Just some things to think about.

Take care.

[Ruffabug in reply to LotteM]

Thank you for your thoughtful reply. He says he would start me on 2mg tablet. I would be prepared for the constipation with plenty of laxatives and fluids. Exercise is the one I would struggle with but I do try to keep mobile. I will bear in mind the patches. My skin seems ok with the Neupro patches.

[LotteM in reply to Ruffabug]

I don’t know whether there are smaller = lower dose tablets. If so, ask for them so that you can build up a little more slowly. Otherwise, cut the 2mg tablet in half or even quarters. But of course it is up to you. I am always very prudent with new meds as I react already on low doses. Hence I prefer to start low and build up. But that is me. I only want you to be aware of the possibility. And: I hope it works and agrees well with you! 🤞🏻🤞🏻🤞🏻.

[707twitcher]

I’ve been on buprenorphine for 6 months, generally at .4 mg of sublingual at night, or a 7.5mcg patch when I used that. Constipation has been my primary side effect. Bad enough that I tried other meds (dipyridamole, Tramadol) and the buprenorphine patch (because of the lower level of medication in your system compared to the sublinguals). For the last month, the constipation has been much better. I’m not sure if it’s because the side effect lessens over time (5 months is a long time to wait) or the discovery of how well a few prunes work for me (I learned that it’s not their fiber content but their chemical makeup that makes them work).

I have noticed that my constipation wasn’t any different on the patch vs sublinguals, and also that it is greatly affected by a larger dose. (I’m having to use steroid eye drops for a few weeks after cataract surgery. They aggravate my RLS, so I’ve had to increase by buprenorphine dose by 50% to cover the RLS.). So my advice would be the same as Lotte’s - start with a low dose of .2 or .4mg. And stick with sublinguals as they are fast acting and will better enable you to experiment and find the best dose for you.

Good luck!

[Ruffabug in reply to 707twitcher]

Thank you so much for this.

[Jumpey]

I just wanted to cheer you on. I dearly hope your remaining time will be comfortable and peaceful. X

[Ruffabug in reply to Jumpey]

Thank you so much. You are very kind.

[Nikos64]

The opioid constipation is fairly well controlled with a stool softener, plenty of hydration and with magnesium citrate (which has a positive effect on RLS too!)

Please be comfortable, peaceful and be surrounded by loved ones !

[Ruffabug in reply to Nikos64]

Thank you. Some good tips!

[HipHop1972]

oh my dear Ruffabug, what a lot you have to contend with when all you need is peace and to enjoy what is remaining and not being sidelined by RLS and this or that medication. My thoughts are with you and loads of virtual hugs 🤗 🤗🤗🤗🤗

HipHop1972

[Ruffabug in reply to HipHop1972]

Thank you so much for your kind words and hugs.

[HipHop1972 in reply to Ruffabug]

You are very very welcome Ruffabug and by the way love your title, it’s so very cute.

HipHop1972 😁

[Ruffabug in reply to HipHop1972]

It was my family childhood nickname!

[HipHop1972 in reply to Ruffabug]

Hi, Ruffabug, oh that’s so lovely. 😁

[AmyMac5]

My RLS is well controlled by keeping iron levels up and prescription co-codamol but constipation was a problem. A friend gave me some kefir grains and I soon had a good going culture established. It relieved the constipation problem within a few days of taking two small bowls a day (lovely with runny honey). If I don't take it regularly I'm back to being constipated.

Have you tried something like kefir? I don't know if different strains have different properties so not sure if supermarket brands would have the same effect. It's very robust and needs very little maintenance. Mine is cultured in cow's milk so obviously not suitable for a dairy free diet, though I believe other milks can also be used.

I'd be more than happy to send some 'mother' culture to you in the hope that it would ease your situation a little.

[Ruffabug in reply to AmyMac5]

Thank you very much for this suggestion. I am actually lactose intolerant so it wouldn’t work unless made from lactose free milk. But thanks for your offer of sending me some of yours. You are so kind.

[violetta254 in reply to Ruffabug]

There is a lactose free kefir, I think it is Green Valley.

[Ticki]

God Bless you.💜