This is CRAZY. As you all know I am on 2,100mg of gabapentin but here I am at 7.30 UK time with my legs still driving me mad.So I have to admit gabapentin clearly not working and as you know I cannot tolerate pregablin.
Sue, I will ask my GP about opioid but am terrified of becoming addicted.
Does anyone in the group take opiods?
Many of us do.
There is a huge misunderstanding about opioids and addiction.
I covered this in a recent post.
Unless you are an addictive personality, you will NOT become addicted or tolerant to low dose opioids as prescribed for RlS.
I have been on 25 mg total of oxycontin and Oxynorm for about 7 years, with absolutely no desire to run amok down to the boardwalk to get more scores.
Go for it.
I agree with Madlegs1.
yes I’m on oxypro with pregabalin and it definitely works and I believe that increasing the dose generally isn’t needed for opioids.
I’m sure someone mor knowledgable than I will give you more info.
I’ve been taking 15 to 20 mg of Oxy5 for at least 10 yrs. It doesn’t seem to impact the RLS one way or the other but is an absolute necessity for RA, neuropathy and Charcot feet. All I ever feel is an easing of pain, not the ‘high’ the drug seekers crave. There is a vast difference between drug dependency and addiction, a difference the general public is ignorant of. Hence, Im suggesting it’s no one’s business but yours and your doctor’s. I had the unfortunate experience of ‘friends’ who knew I regularly used Oxy accusing me of being addicted simply because I took it. The opiate crisis has badly affected those of us who suffer from chronic pain due to public perception and stigma. I wish everyone was as well informed as the wonderful supportive people in this group. The percentage of people taking Oxy who become addicted is reassuringly small.
I take 10-15mg of oxy5 every evening/ night. I can’t say it works perfectly for me but definitely greatly better than without. I never sleep uninterrupted and have to get up at least once a night for about an hour and take another dose, but I never want nor take more than allowed. If it weren’t for my rls I wouldn’t even think of taking the medication. As others have said, the opiod crisis has created a fear and stigma that has harmed people who need the medication and use it responsibly.
I read that Oxycotin is now banned for prescription by GPs following lawsuits in the States. How do you obtain it if this is the case?
That is not the case.
Sorry to be persistent on this but I understand Oxycontin is a potent opiod produced by Purdue Pharma which had disastrous effects on patients and was banned by the Federal Drug Administration for general us
"The new company that emerges from the ashes of Purdue Pharma will be allowed to continue making and selling opioid products, including OxyContin" houstonpublicmedia.org/npr/...
It is a schedule 2 drug.
you're on an extremely low dose of Gabapentin. That would have no effect on me whatsoever. I started on 3x300mg, 10 years ago. I wake up with rls, so take it morning, evening and before bedtime, to keep it in my system. Some people take it evening and bedtime - whatever suits you.
just recently I've been taking an extra 300mg at bedtime, but I think my rls has suddenly got even worse, as my husband suddenly died a few weeks ago.
I'm in the UK and opiods of any sort were not advised by my GP. due to their addictive and augmentation side effects. I'd be asking for an increase in the Gabapentin to an effective dose and then taking it when it's most effective for you. All the best.
And what you are taking is also a low dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." 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. If you haven't 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.
Thankyou. I am taking 1200mg now, but I do think that's partly due to losing my husband. I'm going to take a note of your advice and hope I can see GP who understands a little about rls. It's very hit or miss at my local practice, but your advice will give me confidence when I next make an appointment.
I am so sorry about your husband. The stress from that can certainly make your RLS worse, On the gabapentin the thing is that the 1200 to 1800 mentioned is usually taken only at night so the 300 you are taking at night is very low by comparison. 3600 mg daily is the maximum dose. Ask your doctor for 100 mg capsules and add 100 mg every 2 days to find the dose that works for you.you. Take it 1 to 2 hours before bedtime. If 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 don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of it. 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...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
I was told by an RLS specialist that large doses of Gabepentin does not necessarily alleviate symptoms . She said taking 500 mg is the same as taking 2000 mg . She called it Kenetic Saturation. I was taking 600 mg and she said less can be more so she put me down to 300 mg and it works just as well.
Also on high does I felt dizzy and had some balance issues.
Your doctor is wrong. But I am glad it works for you.
she is a doctor recommend by The RLS foundation ! She is not wrong if it works for at least one person.
A doctor recommended by the RLS foundation means that one person found her helpful and recommended her, not that she is an expert on RLS. She is generalizing and just because it works for one person does not mean she is right. For example, just because one person does not suffer from augmentation on mirapex does not mean that nobody suffers from augmentation or just because 1 person does have their RLS improved by raising their ferritin over 100 does not mean no one will be helped.
ok Sue thanks for the kind words and support
Are you a doctor ?
I found her via the RLS Foundation, she is in one of the fewRLS facilities recommend by the RLS foundation , she is represented in the Night Walker magazine , she specializes in sleep medicine
This sight is suppose to be for support. However , you seem to be the only one who dictates the conversation as you are a physician or the only expert in the field
That makes it hard for others to speak up and share for fear of negative unhelpful responses
I am sorry you feel that way. It is certainly not my intention. No I am not a doctor. I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.
Just curious - what is her name?
I'm so happy it's working for you. Did you do a taper or just switched doses? Did you have any withdrawal symptoms?
thank you ! After having negative side affects from the high dose of Gabepentin a local “sleep medicine “ doctor put me on I switched to a doctor recommend by the RLS foundation. The doctors recommended have had specific training in the area of RLS. She switched me to the lower dose of 600 mg but now I am taking 300-400 mg and it’s working just as well. I realize that is a very low does however it is working for me. I have had RLS for 30 yrs. I did not taper down
well, I for one will never ever consider taking Gabapentin! It may be recommended by Mayo but just you wait and see all the problems that it will cook up in the future for folk going down this route . The withdrawal from it is horrible as well. As for Opioids, I’m still very reluctant to try them despite reassurances regarding dependency. It’s nothing to do with having an addictive “personality”. If it was purely personality, you could just as easily be addicted to shopping. It’s to do with how your body reacts to medication. It’s physical. I take nothing at all at the moment having suffered big time with RLS and PLM for decades and gone through detox hell but I am feeling huge benefits all round. I’m not saying I am completely free of symptoms but they are now minor and not interfering with life at all. The prescribing of dopamine agonists was a huge mistake by the medical profession and frankly we all deserved better. We still deserve better!
What problems will Gabapentin give me in the future? I've been on it for 10 yrs and couldn't do without it. I know some folk find the initial side effects that some, not all, patients experience, can take a while to get used to, but I've no knowledge of future problems. I should imagine, if you're fortunate to feel you no longer need the tablets, a slow cutting down, under your GP's supervision ,should present few problems.
Agree 100%. I ct off of cocaine, alcohol, antidepressants and nicotine. Was just preparing to taper off of benzos when I had to have open heart surgery and they kept me on beta blockers for 11 months and then stopped abruptly and instantly went into withdrawal and then tolerance withdrawal from the benzo and began to taper off it. 98lbs, collapsed in the street and ended up in hospital and with the mention of benzo and withdrawal was immediately considered for psychiatry. My spouse broke me out where I was surrounded by covid and being ignored. Now my central nervous system is damaged and I am on that damn pregabalin and a benzo. Bedridden for 2 years now. The Dr.s are murderers and I will probably not make it and Dr.s don't want much to do with me as they made me sick. I was perfectly healthy 13 years ago when I was having some trouble sleeping because of difficulties with my narcissist boss. I was prescribed benzos when a little therapy would have done the job.
I just felt generally unwell whilst on it initially , far too drowsy, and then when I tried to withdraw, I suffered hypersensitivity , itching, agitation etc so for me it’s a no go area.
The study by Doctor Winkelman of Massachusetts General Hospital shows that the danger of addiction is virtually nil. (this is a five-year study, now in year three).
Most patients did not increase their dose over two years. Some decreased.
Those that did increase the dose, by no more than 10%, had good medical reasons to do so, including dropping other RLS drugs, or severe pain conditions.
So no, the danger of addiction is virtually nil. We do not react as addicts, we react as sufferers from RLS, and it is an entirely different thing.
Doctor Christopher Earley, one of our heroes, has said that "RLS could as well be called an opioid deficiency as a dopamine deficiency'. Brain-tissue studies show that we do not have sufficient endogenous opioids.
Do not be afraid, there is absolutely no reason.
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