When will I know to give up on gabapentin? Three months ago I started taking 600 mg right before bed. No RLS for 4-5 weeks. I thought I was healed. Then, the symptoms came back. I upped to 900 mg, in two doses, 300mg and 600 mg. I gave it a few weeks, and it seemed to be working...until the symptoms returned again. So I upped it to 1,200mg in two doses. The twitching (although attenuated) is still happening, and waking me up with the associated hyper-arousal. Is this an unusual pattern when starting on gabapentin? When I do sleep, it's usually out of exhaustion, and lasts about 5.5 hours. I am unable to sleep more than this, which is unfortunate, because I need more to face a work day. On this amount of sleep I have no energy and feel awful. I'm not sure if this is a function of the gabapentin or not. Today I attempted a nap and my torso twitched, waking me after 3 minutes. I emailed my Dr. and asked to be switched to pre-gabalin. I know she would like me to go on Mirapex, but based on this forum's contributions, I know that could be a big mistake.
Gabapentin concerns: When will I know... - Restless Legs Syn...
Gabapentin concerns
Just be careful as that can be addictive. Is your Dr a Neuro? Are you in the US or elsewhere?
Yes I'm aware that gabapentin can be addictive, but hopefully less so than many other drugs. My Dr. is a GP and I'm in the US.
As I’m sure you’re aware that it is a sleep and Neuro issue.
No I haven't tried the neuro patch. Do. you have experience with it?
Yes. But i couldn’t deal with it as it made me sick, and well let’s just say I felt like I was 16 again sexually! Lol plus it itches my skin way too much. What state are you in? I’m in NYS.
I believe "neuro" is an abbreviation for neurologist not NEUPRO the rotigotine patch.
You may wish to switch to pregabalin if you need more than 1200mg gabapentin.
200mg pregabalin is equivalent to 1200mg gabapentin and you can do a straight switch i.e. stop taking the gabapentin one night then take the pregabalin the next night.
The maximum dose of pregabalin for RLS is 450mg.
Pregabalin is potentailly addictive, but this usually only occurs if you misuse it by exceeding the prescribed dose, taking it more often than you should or taking an opiod at the same time.
Thanks. It just seems odd that the more gabapentin i took, the more my symptoms seemed to increase. I'm now experiencing more twitches during the day, and on different parts of my body, mostly my torso. Last night I took kratom, trazadone, and valerian and was rewarded with a few hours of sleep. For the pregabalin - would you suggest that I start at 200mg and see how I react, then gradually increase the dose if needed? Does it take 3-4 weeks to become effective, like gabapentin? Is it taken two hours before bedtime, or right at bedtime, or does it matter?
Take pregabalin 2 hours before bedtime as it takes 2 hours to work.
Since pregabaliun is almost identical to gabapentin then it shouldn't tkae weeks to work.
However, if you're certain that the gabapentin is making your RLS worse, then you may need to reconsider this.
Can we take both gabàpentin and pregabalin together. Gaba doesn't seem to be doing anything for me
Gabapentin and pregabalin are very similar medicines. It seems ofd to combine them. Pregabalin is the stronger one and has a hogger and more consistent absorption rate. Also, pregabalin has been trialled for RLS (studies to assess its effectiveness, also ones that compared its effectiveness for RLS against pramipexole) and came out well. If you can and you get your doctor on board, maybe switch to pregabalin. If you were on gabapentin before try to find about the dose of pregabalin with similar strength. Your pharmacist can help you with that (and will know better than your doctor). If you do, I hope you will find the pregabalin more effective than tue gabapentin. 🤞🏼
Thanks LotteM. I'm British but live in Greece and some meds are available easier than others. This morning I went to my pharmacy and he gave me pregabalin. It's less in amount than the gaba but I know that it's more potent. I have an appointment next Tuesday with a new Neuro but I'm not expecting miracles. This site is so much better than any neuro I've seen. They all want mirapexin and it's a fight as they think they know it all. My daughter is going to live in San Fransisco next year so I hope I can visit Dr Buchfurer (I know that name isn't right)Can I make an appointment even if I'm not a US citizen
Yes I believe you can see Dr B even though you're not American.
You can also email him at somno@verizon.net
Be careful of just taking pregabalin and stopping the gabapentin at the same time. You can do this if you take 200mg pregabalin. If you take any less, you are in fact reducing the dose and can expect withdrawal effects.
It's not advisable to take gapentin and pregabalin at the same time. In fact, there's no point. They both have the same action.
Adding one to the other is therefore the same as just increasing the dose of one of them.
Example, if you were taking 1200mg gabapentin and added 50mg of pregabalin it's the same as taking 1500mg of gabapentin OR 250mg pregabalin.
If an alpha 2 ligand is going to work for your at all, it's better to entirely switch to pregabalin. The equivalent of 1200mg gabapentin is 200mg pregabalin. This can be increased to 450mg.
If that doesn't work then you have refractory RLS and need some other medications.
What is refractory rls?
I'm not sure why opioids aren't an option.
It's a bit contradictory that apparently you can get pregabalin without a prescription, but can't get an opioid.
Pregabalin is a controlled drug in rhe US and UK.
"refractory" RLS means severe RLS for which first line medications (dopamine agonsists alone or alpha 2 delta ligands alone) have failed.
see this link
mayoclinicproceedings.org/a...
opioids are recommended for RLS.
Yes it's strange how they think. I've just been reading about refractory rls but as mirapexin worked well, I hope and don't think I have it. I'm seeing a new Neuro on Tuesday let's see what she says.
The question isn then if mirapexin worked, why have you stopped taking it?
You may have said why, but I can't recall.
If you're still taking it and it works, why are you also taking pregabalin?
If you stopped taking mirapexin for any reason, then it failed.
The usual reasons for stopping mirapexin are
side effects are intolerable
it stops working#
it causes augmentation
it causes an ICD.
Th main point is, opioids ARE a recommended option forRLS.
It's 3 weeks today since I stopped mirapexin. It had .stopped working well although I was only taking 0.09mg and I was afraid of increasing as I think I was augmenting i.e symptoms starting earlier and rls in arms. I started gabapentin after a day or so but no improvement unless I also take tramadol. But as I have explained it's very difficult for me to get tramadol and my supply is running out. That's why I'm going to try pregab although I'm terrified of putting on weight
Firstly, if mirapexin was causing augmentation then it failed. Therefore you could say you DO have refractory RLS.
You were right NOT to increase it in that case.
Since it's only 3 weeks since you stopped taking the mirapexin you may still be experiencing withdrawal effects.
It takes 3 weeks or more for gabapentin to start working. It doesn't work immediately. Hence if you've not being taken gabapentinfor at leastr 3 weeks and yo're still withdrawing withdrawla effects, the tramadol may be necessary.
I'm afraid you're in too much of a hurry.
Both pregabalin and gabapentin can cause weight gain
It seems that the pregabalin is working well. For the last two nights I have slept with no rls whatsoever. I'm so so happy I can't believe it after many months. Two nights ago I did take some codeine but last night nothing except half a teaspoonful of Kratom. I had 7 hours uninterrupted wonderful sleep. Today I'm going to see a neurologist so she will prescribe the meds for me and I won't have to pay for them. I will ask about tramadol to see what she says and how knowledgeable she is about rls. I'm sure she doesn't know half of what I've learned on this site. I hope I don't start putting on weight. Thank you for all your help
This is great news, I'm so pleased for you.
It sounds the same as I experienced with gabapentin after coming off pramipexole.
Getting a life back!
I am so pleased for you. And applaud you for your persistence. I hope it lasts. Do you experience (negative) side effects of the pregabalin? I hope not! Not everybody gets these. And if so, how are they?
I really hope you can soon 'forget' about RLS for most days and nights. Well done Memmy!
No nothing yet. I'm scared stiff of putting on weight as it affects me both psychologically and physically. I'm being ultra careful with my diet. I went to a neurologist this morning. She was lovely but looked shocked when I told her about coming off mirapexin. She couldn't understand why. I explained about the site and how UK doctors weren't informed about Rls ( I didn't want to say Greek doctors as I didn't want her to feel bad)Anyway she has prescribed me with 3 months supply of pregabalin. When I asked about opiates she said she wasn't allowed to prescribe them . It seems only pain doctors are allowed to do that in Greece. She was very interested and said she would read up on Dr Buchfurer. Good experience generally. I hope tonight will be like last night. I'm even looking forward to going to bed.
I wonder whether pregabalin causes constipation. I've never had it before but now it's a bit difficult to go to the loo. I'm now eating a couple of prunes ( which I love) before bed. I am not bothered by this but just wondering. Maybe the build up causes weight gain(just joking)
As far as i know pregabalin doesn't plug you up. On the other hand, the iron supplement I've been taking the last few months....oh my... I think I need to stew me some prunes as well...
Hi Fatniss,I’ve recently had the same experience as you.
I’d increased my Gabapentin to 1400mg per day, (splitting the dosage in two during the evening), but my symptoms were getting worse.
Just over two weeks ago, switched to Pregabalin, taking 150Mg in one go before bed.
It’s made a massive difference to my life.
I’ve actually been sleeping all through the night, without any side effects.
It does take me sometime to come around in the morning and my legs are sometimes twitchy whilst having breakfast. But no more getting up in the night bouncing my legs up and down.
I just hope that It continues to be effective.
Thanks for sharing this. It gives me some hope that this drug will work. I'll do anything to stay off a dopamine agonist. I'm curious if you have any theories as to why the switch worked? Maybe differences in how each drug is absorbed?
Hi Fatniss,I believe it is something to do with how it’s absorbed. I’m only able to share my experience on this forum, but posts from so many here have been so informative. The likes of Madlegs, Jooslog and certainly Elffindoe have been particularly helpful. The latter may be worth searching as they responded to me on this subject.
I am on Gabapentin (600mg per night) and it works well with me. I was on Premapexol (hope this is spelled correctly) before and augmented. Went through hell to come of them. Now on Gabapentin very rarely suffer. Dopamine agonists and calcium channel apha-2-delta antagonists (gabapentin, gabapentin enacarbil and pregabalin) are first-line treatments; calcium channel alpha-2-deltas are preferred over dopamine agonists because they give less augmentation. So I don't think Gabapetin is a dopamine agonist,
The absorption rate of gabepentin is variable.
It seems to depend on which source you read, but there seems to be some consensus that if you take 300mg 80% will be absorbed
900mg 60% will be absorbed.
3600mg 33 will be absorbed.
With yet higher doses this can fall to 20%
I think these numbers are based on the total daily dose.
The absorption rate of pregabalin is 90%
It doesn't matter what the dose is.
Hence pregabalin is more potent than gabapentin.
Chemically it's also slightly different so, this may ecplain why sometimes pregabalin works better than gabapentin.
I've got exactly the same problem. I stopped mirapexin and started gabapentin slowly. I'm up to 1900mg and it still doesn't work. I'm so disappointed. It's 3 weeks and I haven't had a good night's sleep except when I add an opioid. I can't see any point in this as I don't want to use opioids as they would work on their own. I'm now considering trying pregabalin but I'm scared as I don't want to put on weight and they say it's a side effect. I struggle to keep my weight down. Has it affected you in any way
Hi Memmy I've only been on pregabalin for about a week so I may not be the best one to ask. For me, up to this point, it does seem to be more effective than the gabapentin in controlling the RLS, but I thought the same thing about gabapentin after a week. The question is, does it have long term staying power? It's suppose to help you sleep, but for me it's not that clear. I've been sleeping 3-5 hours on it, not enough. Too soon to tell about weight gain. I followed Effindoe's suggetion that if you need to take more than 1,200 mg gabapentin, consider switching to pregabalin.
1900mg is quite high.
I'm afraid if pregabalin doesn't work for you, (and also causes weight gain), which are possibilities then you will have to consider an opioid.
This may not be as bad as you think it is.
You can use a ,low potency opiod in conjunction with a low dose pregabalin OR take a low dose of a high potency opioid on its own.
REad the following link under the heading "Refractory RLS"
How much pregabalin do you take and has it affected your weight at all. Glad it's working for you
Hi Memmy,I’ve been on Pregabalin for 1 month, after switching from 1400mg of Gabapentin.
I take two 75mg Pregabalin tablets together (so 150mg total), at 10.00pm. This is against my GPs advice of taking them separately some hours apart.
For me, so far the results are fantastic. Sometimes I sleep right through the night, other times I do get up, but I don’t need to bounce my legs at all.
I do feel a little groggy in the morning, which soon passes as I get to work, however, I don’t have any side effects, but like Fatniss said, maybe it’s a little early to know.
Im currently on 1.2g of gabapentin and the same thing with it. Started off on 300mg then 600mg then 1.2g due to.it helping then stopping then helping then stopping. Yesterday i was given the nuro patch to go along side my gabapentin. So fingers crossed it works!!!
Did you ever consider pre-gabalin? Some report success with this after gabapentin fails
Im in the UK and my consultant is running it. Meaning i make suggestions and he does the opposite. Im 32 so im relatively young and have suffered over 5 years. They say in the young that RLS is harder to treat! I have been on oxy but couldn't deal with the hangover effect the next day, ropinarole but it made it worse. My iorn is usually low but cant cope with the constipation when taking iorn. Gabapentin has worked the best but im still suffering. I have RLS and PLM. If this patch and gabapentin doesnt work which i think it wont, ill suggest pregab
HI Yvette Sorry to hear about your challenges at such a young age. There are many members of this forum that use opioids to control their symptoms. I understand oxycontin has some problems. For some it can lead to insomnia. One opioid that seems to be winning some favor though is buprenorphine. Dr. B in California prescribes methadone for refractory RLS. You may want to consider low doses of these if the gabapentin doesn't work.
Yvette.
Have you tried ferrous bisglycinate (gentle iron). It's called gentle because it is less likely to cause constipation.
Another thing you can do is only take it every other day, not daily.
It has been demonstrated that taking doses of iron less than 60mg, (which I believe gentle iron is) and taking it bi- daily can actually increase how much is absorbed by up to 50%.
My dr just prescribed me Gabapentin , I’m wondering what makes it addictive and will I be able to just stop taking it at once if it doesn’t work ?
Also when I mention opioids to my dr it is a complete shut out.In Canada they really only prescribe pain meds to cancer patients , terminally ill etc.I am convince my dr has no knowledge on rsl the torchure it brings and the desire to treat in so I don’t have to suffer any longer
There is hardly any doctor in any country that is particularly knowledgeable about RLS. I don't think that Canada will be any different.
It's a real shame because all over the world, people with RLS are being badly treated or even mistreated for RLS. Sometimes doctors causing more harm than good, e.g. prescribing meds for RLS that actually make it worse.
IT is "potentially" addictive.
This doesn't happen in the normal course of events.
Most cases of gabapentin addfiction happen when it is misused.
People misuse it to get a "high" not to treat a condition such as RLS.
Misuse usually involves taking excessively high doses
Taking the powder out of the capsule = "popping"
using it in conjunction with an opioid (also being misused).
If you want to avoid addcition don't do any of those. Take the med exctly as prescribed. Don't take it without a prescription.
If you think the dose is too low, discuss an increase with your doctor.
Your doctor may not be aware of the following.
For RLS, it is usually prescribed only once a day, 2 hours before bedtime is best. Or twice a day at most, the second dose being about 2 hours before the bedtime dose.
The starting dose is 300mg (under 65) or 100mg (over 65). It's best to start low beause initial side effects can be dangerous = dizziness, drowsiness and walking difficulty. It's possible to have a fall.
These side effects usally wear off after a few weeks.
The dose can then be raised in steps of 100mg (every one or 2 days) or 300mg (every 3 to7days) until an effective level is achieved., Thius varies between individuals.
A typical minimum effective dose is 900mg, but most people need between 1200mg and1800mg. 2700mg is the maximum.
I say this as many doctors underprescribe.
Note that it may take 3 weeks for the drug to start to fully work.
see this link for further information.
Please note that your doctor should also have taken blood tests for serum iron, transferrin saturation (TSAT), ferritin and haemoglobin.
If setrum irona dn TSAT are low then you have iron deficiency.
If haemoglobib is low you have iron defciency anaemia.
These are medcial considitons and NEED treatment.
However if your doctor syas that htese are all "normal" then it is recommended that you find out the excat result for ferritin and if necessary raise it to at least 100 and ideally over 200.
The recommended ways of doing this are
1) If ferritn is less than 75 take an oral iron supplement.
2) If it's between 76 and a100 you may need an IV iron infusion.
Do NOT ignore this even if the gabapentin works.
50% of people getting their ferrtin up to100 benefit from this.
Up to 60% of people getting an IV iron infusion can be treated successfully = no need for any medication.
Iron is not a quick fix for RLS like gabapentin and many Doicotrs are ignorant about it. Note it can take months to work.
You should also identify if there is anything making your RLS worse and if possible avoid it.
The main triggers for RLS (make it worse the same day) are alcohol, nicotine, sugar, caffeine or other stimulants.
The main things which make RLS worse longer term are other medications
Notably antidepressants
Sedating antishistamines (neuroleptics or as found in some cough medicines, anti-allergy remedies, over the counter sleeping aids and anti-nausea remedies)
Dopamine antagonists e.g. some anti-nausea remedies.
Proton pump and H2 inhibitor antacids
PLUS many others.
Diet and inflammation can be a a factor in RLS and the two are related.
Several underlying conditions canncasueRLS if nay are suspected in your case Thjese are
Rheumatoid arthritis
Thyroid dysfunction
Diabetes
Renal failure
Peripheral neuropathy
Vitmain B12 /folate deficiency
Read this link
If you need to stop taking it, gradually reduce the dose. It's technically not "addictive", but your system certainly adjusts to having it.
Your phrase "i make suggestions and he does the opposite." I've experienced myself a few times in the past. Some doctors just don't like being told what you think what's wrong with you and what they need to prescribe.
It may come from patients being wrong most of the time.
You have to kind of gently lead them round to prescribing what you know you need, Giving them relevant information sometimes works. Not always, because some doctors can't seem to accept their own ignorance.
It's easy for doctors to dismiss any imformation you give them especially when it's taken from Dr Google, popular health websites, magazines etc. You need authortiative information from known edpert organisations or articles from medical/research journals.
Some thoughts on what you've written.
I'm not sure that RLS is harder to treat the younger you are. This may have been taken out of context. Sorry to say, RLS is progessive, it gets worse as you get older.
Ropinirole made it worse. If you mean ropinirole made the hangover worse, I think that's possible. If you mean ropinirole made the RLS worse then, to me, that suggests you do not have RLS at all.
Your iron is low. The test for iron levels in RLS are serum iron, transferrin saturation (TSAT), ferritin and haemoglobin.
So what's low?
If serum iron and/or TSAT are low (less than 16%) then you have iron deficiency.
If haemoglobin is low then you have iron deficiency anaemia.
These are both medical condiitons and NEED treatment.
If they're "nbormal" and TSAT is less than 45% then it's the ferritin levl that's significant for RLS. A ferritin level of 100 is of benefit for 50% of RLS sufferers.
Hence if your ferrtitin is less than 75 then it's recommended you take an oral iron supplement.
If you take a prescription iron supplied by your doctor, two things will probably happen -
1) You'll suffer constipation
2) The iron will probably be ineffective.
Here's a better plan.
Take an over the counter supplement, ferrous bisglycinate (gentle iron) which is less likely to cause constipation.
Only take it once very two days, i.e. every OTHER day, not daily. This will also help prevent constipation.
In addition, this will actually make the iron more effective, up to 50%.
Also
take it in the evening at least 2 hours aftere eating
take orange, vitamin C or folic acid at the same time
do NOT take anntacid or magensium at the same time
Here a link to some authoritative information form a recognised RLS expert organsiation on the tgreatment of RLS you can try to show yor consultant.
mayoclinicproceedings.org/a...
Actually, if you have a decent primary doctor, there is no need to see a consultant. Consultants are not necessarily any more knowledgeable about RLS than a primary doctor.
It doesn't seem as if the gabapentin is working for you.
The reason for this may be that you're not taking a sufficient dose. For RLS this is typically 1200mg to 1800mg. The maxiumum is 2700mg.
Pregabalin is more potent.
If neither work, one possibility is that you don't actually have RLS.
Have you checked ferritin levels. Needs to be at least 75
Two things:
My experience, and I think it may apply more generally to those who respond to gabapentin/pregabalin/horizant, is that the medicine will not cover food sensitivities. In other words, you cannot take the pill and think you can eat whatever you want. Especially refined sugar in any form (probably at anytime of the day), and high glutamate foods (tomatoes, walnuts, aged cheeses, spinach, MSG in all forms, etc. Also, likely prepared foods because of emulsifiers and other additives.) Of course you can choose if you prefer eating these things over sleeping. That's your choice.
Secondly, as to addiction to these drugs: unless you are switching between them, you have to come off slowly, "addiction" or not. VERY SLOWLY.
Hi, thanks for your response. Although I gave up sugar a few moth ago, I do eat a fair share of aged cheese, including tomatoes in various forms. I will take your recommendations to heart and consider eliminating these, and reduce some of the high glutamate foods such as soy sauce and miso. Thanks for the warning on the addiction issue -it is a can of worms.
I am sorry to sound silly but what has sugar and RLS got to do with each other. I ask as i eat lots of crap so if theres a link i would like to know more.... as this could be the reason i struggle.
Apparently consuming high quantities of refined sugar can cause inflammation. There's information on the internet about his. For some (many?) inflammation aggravates RLS symptoms.
It's an easy test: only takes one day of changing your diet and seeing the effect. Sugar is one of the most common triggers, refined sugar in particular (although I find I can't eat a lot of fructose in the evenings either). For one day cut out all refined sugar, all prepared foods, all foods high in glutamate (google it). That means alcohol too. Oh, and unfortunately caffeine too. I'll be interested in your results. Assuming there is a positive change, add back in things day by day so you can find the culprits. And some of us have found we can tolerate things earlier in the day (I just had a low sugar candy bar. Dr. B said jokingly you can probably drink alcohol if you have it with breakfast.) But be strict at first. Good luck.
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