Hello Forum!
After the experience of withdrawing from Ropinirole 7 years ago and having up to now enjoyed much needed sleep by taking 100mg of Tramadol unfortunately I feel the time has arrived to replace Tramadol .
During the last 2 to 3 weeks the Tramadol has become largely ineffective so I am wondering what to do next!!!
I am thinking Gabentine?
Any advice & thoughts will be appreciated
Gabapentin can definitely help you. Beginning dose is usually 300 mg gabapentin. It will take 3 weeks to be fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 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. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. 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...
If you haven't had your ferritin checked when you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Thank you SueYour 'article' is way beyond my expectations when posting my concerns. I will be working through your recommendations and printing your response to hand it to my doctor !!
A great relief to know I now have a programme to follow.
I was 'at the end of my tether' and getting very grumpy!! Not good for relationships!
Last night I did take an extra 50mg Tramadol to see if that would work as a temporary measure & crumbs!!!! I have just woken up after 8 hours.
Is my experience then with Tramadol mean that I have augmented on Tramadol I ask myself?
The daily limit for tramadol is 400 mg. Why not try increasing your tramadol dose first? Maybe you can get another 7 years out of 150 mgs?
That's a thought!What concerns me I guess is the problems of withdrawing from 400 as opposed to 100
What do you think
I agree with that. I would never go all the way up to 400. I would give 125 a shot, just a little bit more might be enough - but I'd even give 150 a try. If either of those worked long term, I'd ride it out and increase as needed until 200 mgs (which could be 21 years from now if you only need to increase 25 mgs every 7 years); however, if a dose increase stops being effective after 3 months, then its usefulness has probably run its course and I'd give up on it. But I'd try the increase first, I think that would be better than dealing with withdrawal from the old medication and side effects from a new medication.
Tramadol can cause augmentation so just like with the DA medications you don't want to increase once symptoms start getting worse.
I went through absolute torture for 12 years taking 400mg of tramadol a day. Then I found forums like this and found out about augmentation.
April marked one year since I started titrating down off tramadol and started taking methadone. I slowly titrated up with that at the same time and after about 3 months was completely off the tramadol. Thankfully the methadone works well enough that I didn't have any issues stopping tramadol.
I'm now virtually symptom free.
Also, just a side note. Idk if it's because of the augmentation or not but I officially have Refractory RLS. I'm my case nothing but opiates will work for my RLS symptoms. And if I were to stop medication or even just forget a couple of doses my symptoms would be in my entire body 24/7.
Hello Poe7So from your article you appear to have found it necessay to increase your Tramadol prescription and therefore were augmenting ?
Fortunately I was on only 100mg and increased it last night to 150mg (after 7 years!!) and experienced a glorious 8 hours uninterrupted sleep!
I am 76 and hope it runs for another 7 years , however I will be taking the recommendations from 'Sue Johnson' very seriously
Yes, so I started out at 100mg of tramadol at night. And the slowly over the years as my RLS was getting worse my Dr increased the dosage. He was just my family doctor and didn't know anything about augmentation. And I obviously didn't either.
It took a couple of years you get to the maximum dose of 400mg per day.
I hope you find something that works for you
Ditto - except they keep making me try expensive other drugs because the medical complex is more afraid of opiods than is reasonable.
I didn't get any help with stopping the tramadol and switching to methadone until I searched out a neurologist that specializes in RLS 2 hours away from me. I took her all the info I had and the research from John's Hopkins. She was very receptive and willing to looks at everything in order to make an informed decision. She tried me on one other medicine that I don't even remember what it was first. Then when that didn't with at all she started me in the methadone. I had to sign an extensive pain contract. Get a drug test done and an EKG then once all that came back fine she prescribed it. And I have to get a new urine drug screen and EKG once a year just to keep in compliance with my pain contract. I am unbelievably thankful I found her. She is hands down the best, kindest, most compassionate doctor I've ever had. My appointments every 3 month are at least 30 minutes long and longer if I need it. She listens to everything I have to say and if I'm having a problem she solves it. And if she doesn't know the answer she will get on her phone to another neurologist until she finds the answer. I said all of that to say that I completely believe that so many more people could find relief if they just had access to better more knowledgeable doctors.
I am so glad you have found the right people.
I have some great people, but I'm missing some important parts.
Hello OoklaFor the sake of trying to get much needed sleep I increased my Tramadol prescription by one 50mg capsule (to 150mg) and OMG I experienced last night a glorious 8 hours continuous sleep!
My only question now is by having to increase my Tramadol intake does it mean I have effectively augmented on Tramadol?
I'm glad the increase worked out well. I think you might be confusing tolerance with augmentation. Augmentation is when you start getting symptoms earlier in the day and/or other places in your body than before. Tolerance is when the body adapts to a certain level of medication and an increase is needed to get the desired relief. It sounds to me like the effectiveness wore off due to tolerance (instead of your symptoms getting worse from augmentation). With tolerance, I think it's perfectly reasonable to increase the dose and see if you can get another long stretch of effectiveness out of it. However, if the dose increase is only effective for a few months, then your body is adapting too quickly to tramadol and its effectiveness may have run its course. I hope you can get another 7 years out of an increase. Good luck.
I had a horrendous withdrawal from ropinirole and followed this with a couple of years on Tramadol which was great until, like you, it stopped being effective. I followed this with Pregabalin 150mg and have had success with this for the past 5/6 years. 80% effective and any side effects settled down after a few weeks. Neither have I needed to increase the dose although there is scope to do this should the need arise.Good luck with whatever you decide.
Pam
Hello Pam34Thank you for that
I will be considering the excellent 'report' from Sue Johnson but in the meantime, in my very grumpy state through lack of sleep!, I took an extra 50mg Tramadol capsule last night (150mg in total) and OMG experienced 8 hours of continuous sleep for the first time for many weeks!
Haha I bet! I only ever took between 50-100g of Tramadol. It was never an option for me to consider increasing it as my GP decided he would no longer prescribe it! As it had ceased to be effective anyway I didn’t put up a fight (I’ve done plenty of that over the past few years) and having done my research I asked if I could try Pregabalin. I was able to stop Tramadol immediately, without any withdrawal symptoms. I’m not sure if that was just luck or whether my dose was considered to be low.
Anyway, long may your sleep continue…..
Wow! I've never done that! Congrats!
I take Tramadol for RA pain (second hip replacement scheduled) and it helped with RLS but not entirely. Specifically for RLS, I am on Pramipexole Dihydrochloride 0.125 mg 2x pills a day at 7:30 pm. This is a Parkinson's med I believe. I could have gone up to 3 pills but I couldn't wake up in the morning clear-headed, so I stayed at 2. I still have to do 20-30 minutes of stretching around 9:30 at night but I have been doing 1-4 hours of stretching every night since I was 10. The stretch that helps me the most is holding 2lb weights in my hands, doing a slow and deep side bend and when my arms are as low as they can go, I slowly unroll the weight as if it's going to drop and then right before it does, I slowly curl it back in. Anyway,.........
I have had RLS since 10. My mother had it, her mother had it and my daughter has it. My daughter is on a crap load of Gabapentin for a rare genetic disorder and she still gets RLS, albeit not every day so it may be helping some.
Good luck. RLS is disruptive to just about everything. I hope you find something that works for you and make sure whatever it is you take it at the same time every day.
Have you considered coming off pramipexole? Up to 70% of people on it will suffer from augmentation which believe me you don't want. It is no longer considered the first line treatment for RLS. Gabapentin is. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.
Https://mayoclinicproceedings.org/a... How much gabapentin is your daughter on?
My daughter is on 1,800 mg of gabapentin a day. Her genetic disorder is extremely painful and has no cure.
Oh, I am so sorry. Since she is taking it for pain, she is probably already taking taking it in 3 doses of 600 mg throughout the day which means she is not getting enough at night to stop her RLS. My suggestion would be for her to ask her doctor for 100 mg capsules and increase it at night until she finds a dose to control her symptoms. The maximum for gabapentin is 3600 mg a day so she has a ways she can go, Since it is not well absorbed above 600 mg, she needs to take it in divided doses. Take the 600 mg she is already taking 1-2 hours before bedtime. Since she needs more than 600 mg she should take the extra 4 hours before bedtime And If she needs more than 1200 mg, she should take the extra 6 hours before bedtime. If she takes magnesium she should take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin." Also have you and she had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
I augmented on ropinerole, then pramipexole, and the pramipexole withdrawal was absolute torture. My brain broke and I don't think I'll every be the same. That drug is evil and should be pulled.
It certainly is. I saw your post on the Anxiety and Depression forum. Please don't give up. There is help for you. For depression ask for trazodone. It is safe to take for RLS. You list a number of medicines on your profile. I don't know which of these you are taking. Duloxetine makes RLS symptoms worse for many people. It sure did for me. Losartan also makes RLS worse in many people. A safe one for RLS for treating high blood pressure is propranalol which is a beta blocker. Carvedilol is also a beta blocker and although I can't find out whether it increases RLS, again a safe substitute is propranalol. You list gabapentin. Are you taking it and if so how much?
Ah, complicated question. I need to update the meds. I am on too many, thou. I don't have high blood pressure, but I have congestive heart failure (which is for me genetic, and killed my mom and brother recently, is killing an uncle, and killed my maternal grandma). I have always had good to low blood pressure (a trait from my dad's side), so getting on optimal preventative doses took a long time. I take carvedilol and Entresto instead of losartan.
I'm on Horizant now at optimum dosage and titrating off gabapentin. I was at 1200mg 2x a day, but my brain became a foggy, muddy mess. I'm currently at 200mg 2x a day. I also take it for neuropathic pain, so I don't know what is going to happen there.
The duloxetine is problematic. My shrink and I talk about it every week. It is also treating neropathic pain and something else I can't remember at the moment. It's been a really difficult puzzle.
I start seeing a physiatrist in a couple months. Maybe someone who sees the body as a more integrated system will have insights.
I also have an intake appt with an integrative medicine doctor set for the end of July. Backup plan if the physiatrist and PT is a bust.
I research hours every week - and welcome feedback like yours!
I am so sorry about your Mom, Brother and Uncle and that you have inherited it too. I hope the Horizant works well for you. If it doesn't ask your doctor about dipyridamole. It is a new treatment for RLS that has helped many of those who have tried it. (Search for it on this forum) However, it is a blood thinner so I don't know how that would affect your heart failure.
It wouldn't address all the issues of heart failure, I think. At any rate, it's one thing I'm not worrying about. My state has Death with Dignity, so when it gets close I'll get things in order for a peaceful death.
My one consolation!
I think the max suggested Tramadol dose is 150 mg. I'm there and wondering what next. I am trying adding dipyridamole - but I don't think it helps me much at 100 mg dose. Maybe I'll try taking 200 and watch for side effects. The problem is the extra $600 per year, when Tramadol costs me nothing.
According to the study at Https://pubmed.ncbi.nlm.nih.gov/34137476, the average effective dose of dipyridamole is 218mg. And take it on an empty stomach as fat inhibits its absorption.
Take more tramadol or try pramipexole, works for me.
Please don't suggest pramipexole. I know you like it but it is no longer the first line treatment for RLS because of the danger of augmentation.
I second that. It's an awful drug that was not thoroughly tested.
I know every drug isn’t for everyone. I was taking 200 mg of tramadol for years and it worked fine then my doctor said I should cut back because it’s an opioid. Four months ago she put me on 100 mg of tramadol and 1 mg of pramipexole and it’s been working great. I’ve had RLS for 25 years and have taken many things. Right now, at 78, things are good and I’m not saying it’s for everyone.
Thank you for thatI am aware that meds aren't for everyone ' our bodies react indifferent ways but doctors also seem to offer different advice! Very confusing! My doctor says 400mg is a likely max which should be avoided!! But like you I am aware it is an opioid so I am being careful!!
Gabapentin is fine if tolerate it; I was put on a stupidly high dose of 2400 mg/day, and it completely fogged my mind. I also started falling - unsteadiness. And exhaustion, and double vision.... but it's worth a try. I don't think side effects are permanent with gabapentin.
Alternative to Tramadol?
tramadol augmentation
tramadol
What next!
