Hello all,
Anybody using gapabentin for rls? If so what are your thoughts about it?
I went to doctors and she prescribed me gapabentin , she said that it will help me with the hip pain too which is properly related with my back. But no referral to to specialist!!! I asked her about my iron levels and she said that it was 37 which could be normal for some but in my case it isn't enough so she gave me more iron tablets to take. (210mg 3 times a day)
What do you think?
TIA.
Bx
First, well done to your GP for prescribing Iron. Levels need to be above 75 preferably 100 for RLS.Most GP's would say 37 was normal.
A lot of people manage on gabapentin but it takes 3 weeks to become fully effective. I was on 300mg at 6pm and 600mg at 9pm with codeine but sadly, although it worked for about 2 months, they suddenly stopped. I suffered severe dizziness, double vision and diarrhoea while taking them.
I'm now on oxycontin and pregabalin. Pregabalin is similar to gaba but better absorbed in the gut and has fewer side effects.
Thank you , I can't believe the other doctor stopped me using them after 3 months and said it is back to normal when it was 37. He knew i had rls too! I think I will try just iron at the moment to see how I cope?
Time will show.
B.
Also I have been reading about the side effects and am scared. Should I be?
I'm on pramiprexole. No side affects or issues. I'm on 256mg and so much better
Like all these drugs- they differ with people.
You should start Gaba at a low dose (100) and titrate up slowly. 900 would be considered tops for rls- but can go up to 2 or 3000 for severe cases of pain.
There is a product call Horizant which is absorbed better by the gut- not sure if it's available in UK.
Worth trying- as Jools says- it takes a while to be effective- at least 3 weeks.
Tredlight will want to know which sort of iron- so you'd better have that at hand.😂
Good luck.
Hi. I got giving 300mg dose and told that I start 1 at bedtime and don't need to increase it if I felt ok with 300mg. I will stick to just iron route for a bit but at least I got something now if i am desperate.
Thanks for the reply 
300 should be grand- I had it for pain relief but didn't find it much good and didn't want to increase.
On oxy now and very happy.
I, as usual, don't want to argue with you as I know you've been researching this for a long time, but Dr. Early at Hopkins says 1800 of Gabapentin is the max.
Also, it didn't take 3 weeks for it to work for me. I've been 99.9% RLS free since February.
😀
Thanks- meds for rls seem to affect everyone differently .
My figure of 900 comes from Dr Buchfurer. As they say " Doctors differ , patients ###.😕
In general- the higher the dose the greater the risk of side effects.
I note that you just take 900.
Cheers.
Thanks for your reply. Everyone's different. I rather stay on the low dosage as I have gone through hell after coming off pramipexole even though I was at the lowest dose. I want something to calm rls down at night as I am one of the lucky ones not getting much rls during a day.
I was on prami for 3 weeks at the lowest dose possible and then awful side effects of huge weight gain in 1 week, nightmares, crying in the morning. I slowly got off and it was not fun. RLS went bizerk at night. Then Dr tried me on neurontin. I hallucinated and was sleep walking. Only on that a few days. Forget it! So now the klonopin and much better for now. But I don't want to take anything eventually if possible. We are all so different.
Here is to your good health friend 🌅
Amongst other things I take 1800 Gabapentin. I get up in pain and took 600mg at 6.00am. It is now 6.40am and the pain has calmed down. I have been on it for a year or so and do not suffer side effects
Thanks Martino, I think I ought stop reading reviews about the medicines. Some are them scary , it puts me off. Specially the ones with alcohol and gabapentin. Do you drink and what is your views on that? I am not a drinker but do like it some at special occasions.
I did take my first 300mg tablets last night and slept better after that... I am planning to feel the dose same but it is too early to say..
thanks again.
B.
Hi
I don't drink alcohol so the choice about whether to drink or not didn't affect me. I am glad the 300mg helped. If the doc's advice was to have it nightly then I would stick with it. I do read as much info as I can find but really only out of interest and to see what other meds people are taking. If I need proper advice I go to the doc or pharmacist.
I drink and find no side effects at all..
Great! I was so worried when I was reading the reviews as there were extreme comments about it. Thanks for your reply.
I to have heard bad things about gabapentin but to be honest I've always been ok.. I try to stay at one a night but when it's at it's peak sometimes end up taking 3 and this does make me groggy the nxt day until I come round.. hope they work for you
Thank you,
I have just started taking gabapentin and my PC doctor advised me to start with the lowest dose 100mg. and every 4 days to go up until i reach a maximum of 300 mg. So far i haven't rested well on the 100 mg. and have augmentation terribly. The doctor told me gabapentin works quickly in the system so i was looking for results within a week since i have been on it that long. I have a mild case but have the worse pain around bedtime. So far the gabapentin hasn't helped me any but maybe it is too soon to tell....
Re drinking-Me too. I also agree with Bkc1777, reading these posts is scary but, there is so much help, valuable knowledge and experience from such wonderful folks, we have to keep on. You never know (pie in the sky bit coming here) one day someone may just come up with a ground breaking solution, if not a cure!
Went back to docs yesterday, and started by asking what she knew about RLS, answer was nothing! The real experts live here! Having a couple of fasting blood tests next week for iron level and thyroid function.
Meanwhile, she asked if I wanted to increase my pramipexole dose, I refused!
Big question is, do I need to stop pramipexole before trying out an alternative or can I drip feed a new drug in to help ween me of the old one?
Keep up the great work guys!
Hi,
Glad you have got your blood test sorted. I went to mine this week and got iron tablets prescribed as the doctor (different one) thought my level was low when the other doctor thought it was all back to normal. It was 37! And it isn't normal for rls sufferers. I was taking iron bisglycinate but she thought that it was to low it wouldn't give me any benefit.
I am happy for you to speak out about pramipexole and refused to increase your dose! Doctors makes me angry when they prescribe anything .. when I told them that I don't want DA medicine anymore she said that they mostly are. But then when i named few they aren't then she suggested gaba. !! When I asked her about the pain on my hip/femur she said gaba will help that too! All I want to know is why I have this pain! better stop waffling!
I am off pramipexole for 9 days now! I was on the lowest dosage and it was working but after reading about it and I must add I was suffering depression from it (not too sure if it is one of the side effects) I decided that I want to give up! IT WAS THE BEST DECISION! I feel I am back to my happy self! I was quiet miserable and serious while on the pramipexole! so if you are planning to do it, do it now! I have gone cold turkey and went through hell but I guess it was worth it as I am so happy without it! There are lovely people here who would suggest do it slowly so it is up to you which way you would like to take!
P.s: I have given gaba 2 days ago and took 1 night, didn't take last night. I fell asleep normal but woke up at 1.10am and thought I take my iron tablet instead of gaba and see how it goes and I tell you what it worked! Treadlight is a strong believer that iron is the cure!
Good luck and keep in touch,
B.
I started crying every morning on the prami only after 3 weeks. I slept RLS free but other side effects started and depression hit hard. Ughhh
Hi Bkc, got your message but can't respond to messages. Glad to hear you are still doing well on iron. Remember, each day that passes without the DA your dopamine receptors get that much better and closer to baseline, I see you were prescribed Gabapentin. As you might imagine I don't like drugs that you have to build up in your system, and basically saturate your system with, for a disorder that only (mostly) presents at night. I completely disagree with your doctor about taking the iron more than once a day and to take a form other than the bisglycinate. Recent research (and more underway) points to an every other day dose to raise levels. There's a good chance your night time iron will be less effective if you take iron during the day as well. Too long to get into here but has to do with a hormone called hepcidin which is our body's iron gatekeeper. The gatekeeper is less likely to let iron in at night if you took some during the day.
Anyways, I will not be on here much until after summer. I'm going to California for a few weeks then my son comes home from college :). So tag, you're it. There's a new person on here almost everyday with augmentation. The rule is ferrous bisglycinate first unless you have an iron disorder.
Hopefully by the end of the summer I will have figured out an alternative to the iron. At least for me, there is a connection between night time eating and RLS. Especially if it's a high caloric meal. It seems to matter less what I eat than the hour. I'm also taking a dopamine antagonist by day called "berberine" in the hopes of up-regulating my receptors. Not something you want to take at night. It's suppose to be anti-inflammatory, anti-cholesterol, anti-diabetes, in addition to being a dopamine antagonist. We'll see. I'm giving it three months. What I'm really trying to say here is that drugs are a dead end and should be the last act of a desperate man. We should all be doing research as to how we can naturally up-regulate our receptors. Even if the berberine works and I stop taking it. At some point I know I will have to go on it again. The same for severe calorie restriction. Anything that up-regulates our receptors will have to be employed on and off for a lifetime I assume.
Good luck. By the way, Nick is not a great example of coming off of the DAs because he didn't try the bisglycinate first and I truly believe he would have had a lot easier time.
Remember, you're the iron spokesperson now. It's an uphill battle on here.
I was about to cry! that's still pramipexole 's fault! Makes me so emotional!
I agree completely about the chemical stuff. It ilshould be the last result! But everyone has to do what's best for them. We can only suggest things You tredlight, like others on here show me the light at the end of tunnel! I go through those hell days with your help! Otherwise I probably would of giving in to pramipexole the second night! I am off medicine now even I got prescribed gabapentin. I tried couple of nights ago only once then I thought I will try without with the iron tablets and last night it worked. I will keep the gabapentin for emergencies I am one lucky person that I have rls only at night.. otherwise I probably wouldn't take the iron route!
The doctor said bisglycinate was ok but not enough iron for my case as it was 37.
Don't go anywhere! I'll miss you! come and check in time to time.
I am no where knowledgeable to be left in charge when it comes to iron route so I will be your PA instead all I can do is tell them my story. I know one thing and that's is a great feeling not to be taking any medicine ATM.
Anyway, hope you have a great time in California..
Thanks again for giving me a hand on my road with my rls problems.
B. X
Do you get rls at night only ? Why try berberine if iron works ok??
Yes, night only. I have a love hate relationship with iron. I love it because it stops the RLS by giving my brain a little much needed night-time iron. I hate it because I have very healthy body stores 100++ and would rather figure out why my brain is incapable of storing iron the way the non-RLS world does.
Anyways, I would probably be satisfied with the iron but for the fact that my long standing mild and intermittent RLS is now mild and almost every night RLS. That tells me that I need to at least try to find something that will halt the RLS progression or as I like to put it - pull us back from the edge of the RLS cliff. We'll always be on that cliff but I want to pull back from the edge. Going off the edge = RLS symptoms.
Go forth and conquer...and research...
The idea behind the berberine is that if a dopamine agonist down-regulates our receptors and which you know from personal experience then who's to say that a dopamine antagonist (by day) won't up-regulate our receptors? If you take an antagonist at night you won't sleep because the RLS will be so bad. Just ask NoMoRLS about her experience with melatonin. Melatonin I believe is a dopamine antagonist.
I need to research loads!!! hope berberine keeps you off the edge. Melatonin helps to sleep? Right , off to more research!
Stay around,
B. X
Yes, I just get RSL at night and where do you find berberine? Does this work for RSL?
Thanks again for the reply. You are right about going to doctors for a proper advice but my experience with my doctor is I am the one teaching her about rls :))
I know what you mean! The Professor of Neurology that I see has said things about RLS that are dubious to say the least! All the best!
I take 900 mg of Gabapentin at 9:00 pm every night and have never had any side effects.
Thanks for the feedback. I appreciate it. Does it take its time to work at bedtime? Do i need to take couple of hours before I go to bed? Thanks
I used to take 300 at 6 pm and another 600 at bedtime but I was still having RLS issues so my doc said take all 900 at 9 pm to get it into my system by the time I go to bed. So, yes, at least a few hours before bed. He also said that I should not get into the bed until very sleepy, not just very tired.
I see Dr. Christopher Early at John Hopkins Hospital in the US. Google him and also watch his video on iron.
Will be checking him out!
I also had an iron infusion on March 10. My ferritin was 70 which is not high enough according to Dr. Early. Being retested around May 10 and will then try to wean down/off the Gabapentin.
Hope all goes well for you.
Lucky you. Yay.
Don't say lucky you yet...let's see if it worked!!!
take 600 mg every night for 2 years and no problems. helps my RLS go away. Drink alcohol and no problems either
I have PLMS. Periodic limb movement of sleep, similar to RLS. I have been on clonazapam for years with good control until recently. I easily tapered off the clonazapam and started Horizant. I've had lots of side effects - dizziness, vertigo, red patchy face, ataxia, insomnia and clumsiness.
There is more to my story......
How can I help you?
K
Hi,
Thanks for the reply. I have gaba but haven't started using it yet. Side effects scares me ! I am on iron ATM and it seems to be working nicely. I promised myself not to use any medicine unless I am desperate as I went through hell when gave up with pramipexole.
Hope you feel better soon. It sounds horrible all the side effects. Have you checked your iron levels and maybe take iron bisglycinate to see if you can make your rls a little milder?
Stay strong !
Bx
Not everyone has side effects from gabapentin/Horizant. I didn't mean to scare you from trying the Med. If your doctor has prescribed gaba, then it's worth a try. Fir me the side effects started on first day.
I'm going to ask my neuro about iron.
Thanks for your support😊
Iron is doing its magic so I rather stay off any medicine as long as I can! don't worry it wasn't you who scared me! I generally hate the medicine route! They are all complicated! Makes me fine one way and ill other ways!
Please check the iron with your doctor. It works in my case!
B.
It is magic isn't it.
Certainly is! I don't why I took prami do all those months! I am hoping long it may continue!
Bx
Also I have lost 2kg in 2 weeks without trying! Not that i need to loose any but it shows it is a good start to coming off prami!
Hi everyone, I didn't stay with Gabapentin long because it made me feel unsafe walking to the bathroom at night (very dizzy). also experienced severe nausea on the second or third night. I have found the manufactureres notes on side effects and wihdrawal very interesting. Many drugs have pretty serious consiquences, especially if you become addicted to them and then must stop taking them.
This isn't foolproof, but increasing the amount of dopamine at night has helped the most for me.
I took Requip and became compulsive about eating, shopping and crafting. I also experienced daytime sleepiness and reduced the amount I take. I have been told that if you are taking another kind of dopamine, say Sinemet, while withdrawing for Requip, the experince should not cause DAWS, but have sruggled with anxiety LOTS and LOTS, since I reduced the dose of Requip form 12mg to 4mg in 6 weeks.
You know, I think people who are enjoying success don't post their thoughs because they are not in need of help. So if we know people who are successful with a treatment we should encourage them to post the details.
I take 3 x 300mg at bedtime and they help me sleep. Without them I would be lying awake in terrible discomfort or walking the house..I also take ropinirole early evening.
Hi.
Thanks for the reply..
I am coping at the moment with no medication and food diary and hoping to keep it that way.
Thanks again and take care.
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