Started gabapenten - no relief

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
zeefy
Posts: 17
Joined: Mon Dec 10, 2018 3:55 am

Started gabapenten - no relief

Postby zeefy » Thu Jul 11, 2019 10:39 pm

I was just prescribed Gabapenten, after stopping Ropinirole. The first day, I took 300 mg before bed. The second night, I took 600 mg before bed. Both times I experienced NO relief, my RLS seemed suddenly strong in my arms, and I was groggy headed. I'm not sure if I should even bother taking 900 mg tonight. Does anyone have any experience or thoughts on this? I am on no other meds. Not sure what the consensus is on gabapenten. Thanks in advance for any input.

stjohnh
Posts: 884
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Started gabapenten - no relief

Postby stjohnh » Thu Jul 11, 2019 10:52 pm

I thought you got 900 mg when at the ER a few days ago. No problem with that? If no problem then why the hesitation about taking 900mg now? How many days have you been off the ropinirole? How much sleep did you get last night?

Gabapentin helps both urge to move (jumpy legs) and sleep, but usually helps sleep more than urge to move. The groggy feeling is usually worse initially and frequently gets better.

Remember there are TWO separate problems with RLS, though initially they seem related. 1) urge to move (jumpy legs) and 2) difficulty sleeping. I know they may seem the same now, but as you get more experience how different treatments work, you will realize they are different.
Blessings,
Holland

zeefy
Posts: 17
Joined: Mon Dec 10, 2018 3:55 am

Re: Started gabapenten - no relief

Postby zeefy » Thu Jul 11, 2019 11:21 pm

Hi Holland! I am referring to the 900 mg from the ER. I was told to start it gradually. I am now so scared to take anything that makes me sleepy, since my fall. I want a drug to help with the jumpy legs, but not make my mind foggy or sleepy. If this Gabapenten is more effective as a sleep aid then jumpy leg aid, I don't want to continue with it. I don't have difficulty sleeping. I am exhausted and ready to sleep, when my leg stops jumping and torturing me.

I stopped the Ropinirole about a week ago now. 4 days of decreasing the dose and now 8 days without the drug completely. Total of 12 days.

I slept from 3:30 am to 6:40 am last night. Took the gabapenten at 10 pm.

stjohnh
Posts: 884
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Started gabapenten - no relief

Postby stjohnh » Thu Jul 11, 2019 11:47 pm

zeefy wrote:Hi Holland! I am referring to the 900 mg from the ER. ...

I slept from 3:30 am to 6:40 am last night. Took the gabapenten at 10 pm.


I know it is very difficult right now and that you feel terrible. BUT you slept 3 hours last night, a clear improvement. In that case I would suggest you continue at the 600mg for now. It will take a while for all the ropinirole effects to get better.

I'm getting confused, do you have an appointment to see a doctor, new doctor, or what?

Also, your best chance of getting more rapid control of your leg jumping is to take an opioid, maybe you have some left over from an old prescription? or order the kratom.
Blessings,
Holland

zeefy
Posts: 17
Joined: Mon Dec 10, 2018 3:55 am

Re: Started gabapenten - no relief

Postby zeefy » Thu Jul 11, 2019 11:56 pm

How long does it take for the Ropinirole effects to go away?

I have an appt. with a neurologist set for October. Primary Doc and ER refused to give me Iron IV OR opiods. I also have an appt. with my hemotologist in two weeks, and I will ask her for an iron IV infusion too.

stjohnh
Posts: 884
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Started gabapenten - no relief

Postby stjohnh » Fri Jul 12, 2019 12:40 am

The ropinirole gets out of your system in just a few days. The problem is that the ropinirole has damaged your dopamine receptors, and they take much longer to recover. Most of the recovery occurs in the first few weeks, though it takes months before they get back to normal, and sometimes never get back to truly normal.

It is possible that the gabapentin alone will be enough to control your RLS symptoms as the dopamine receptors recover, but more likely you will need at least one other drug to work with the gabapentin. That may be an opioid. Possibly very low dose dopamine agonist, after your dopamine receptors have recovered.

Be sure to take a copy of the consensus report with you to give to the hematologist.
Blessings,
Holland

Frunobulax
Posts: 163
Joined: Mon Jun 02, 2014 7:41 pm

Re: Started gabapenten - no relief

Postby Frunobulax » Fri Jul 12, 2019 12:23 pm

zeefy wrote:I was just prescribed Gabapenten, after stopping Ropinirole. The first day, I took 300 mg before bed. The second night, I took 600 mg before bed. Both times I experienced NO relief, my RLS seemed suddenly strong in my arms, and I was groggy headed.


I had a similar experience a few years ago, when I took Gabapentin for 2-3 months. Gabapentin seemed to help for one night (300mg), but starting with the second night I got "restless arms", the same sensation that I know so well from my legs, but completely restricted to my arms. Very weird.

Without the Gabapentin I occasionally have symptoms all over my body, but never restricted to my arms.

zeefy
Posts: 17
Joined: Mon Dec 10, 2018 3:55 am

Re: Started gabapenten - no relief

Postby zeefy » Fri Jul 12, 2019 1:38 pm

Fruno, that sounds exactly like what I experienced. Last night, I didn't take it. My arms were fine and I slept for 3 hours straight, then two more hours of interrupted sleep. 5 hours of sleep total. Finally.

Frunobulax
Posts: 163
Joined: Mon Jun 02, 2014 7:41 pm

Re: Started gabapenten - no relief

Postby Frunobulax » Mon Jul 15, 2019 9:50 am

zeefy wrote:Fruno, that sounds exactly like what I experienced. Last night, I didn't take it. My arms were fine and I slept for 3 hours straight, then two more hours of interrupted sleep. 5 hours of sleep total. Finally.


Yeah. Gabapentin did nothing for me. Some idiot doctors tried to switch me to Gabapentin/Lyrica after augmenting from Pramipexole. ("Idiot" not because they tried in the first place, but because another doctor had put me on an opioid and my RLS was well under control, but they thought they had to get me off the opioid because, you know, opioids are the work of the devil or something. Long story.)

I got one decent night with a few of hours uninterrupted sleep when I took it first, and one or two more nights after increasing the dose. But eventually ended up at ~1500mg Gabapentin and ~150mg Lyrica (at the same time), and it was the worst RLS I ever had. Went back to opioids eventually and they have worked for the last 5 years.

Brynmr
Posts: 47
Joined: Sat Jul 21, 2018 3:15 pm

Re: Started gabapenten - no relief

Postby Brynmr » Thu Jul 18, 2019 4:53 am

I've been taking Gabapentin for about a year. 300mg to start - now 1800mg. It helps me a great deal. Aside from the increase in dosage, no problems for the most part. The groggy stuff lessens over time or maybe I just got used to it.

Tirisilex
Posts: 9
Joined: Mon Jun 24, 2019 1:34 am

Re: Started gabapenten - no relief

Postby Tirisilex » Sun Jul 21, 2019 6:02 pm

I take 2400mg twice a day with one pill Of Carbidopa-Levodopa 10-100mg and it works great I get like 12 hours of relief each dose. It was lik ea miracle for me because I've tried everything and nothing worked except opioids but they won't give me any. I accidentally discovered this on mt own when my Doctor put me on Gabapentin and then a week later I tried it with Carbidopa-Levodopa and I got so much relief.. I thought 2400mg was to high of a dose but my Doctor said it was fine. I get my RLS as a side effect of my Medication. It seems my RLS is related to Dopamine levels. So I dont know if this will work just as well for you.

Polar Bear
Moderator
Posts: 7528
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Started gabapenten - no relief

Postby Polar Bear » Mon Jul 22, 2019 6:27 pm

Yes, carbidopa-levodopa works very well and very quickly but should not be taken regularly. It is a fast route to augmentation.
It can be used very sucessfully as a 'one off'.

There is at least one member who uses it as part of a treatment plan but not every day/night, possibly twice a week.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

debbluebird
Posts: 2037
Joined: Mon May 21, 2012 3:27 pm

Re: Started gabapenten - no relief

Postby debbluebird » Thu Aug 01, 2019 4:25 pm

I can't remember, does gabapentin cause any hyper alertness? I've been taking a 300mg at 1 pm, 600mg at 9 pm, and 300mg at 5am. I'm thinking of moving the two to 1 pm. This is also my methadone schedule. 5mg three times, at those times.

Rustsmith
Moderator
Posts: 4038
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Started gabapenten - no relief

Postby Rustsmith » Thu Aug 01, 2019 8:31 pm

I don't remember seeing any comments about alerting with gabapentin. For most of us it is the only thing other than THC that causes drowsiness.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
Moderator
Posts: 15704
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Started gabapenten - no relief

Postby ViewsAskew » Thu Aug 01, 2019 9:26 pm

Rustsmith wrote:I don't remember seeing any comments about alerting with gabapentin. For most of us it is the only thing other than THC that causes drowsiness.


I also do not recall hearing anyone say that. But, long ago, I used to remember what everyone wrote/said here and now I do not, so my memory cannot be relied on!

I do know that there is no alerting for me. It absolutely makes me sleepy. There IS one exception. Pramipexole ALWAYS has created issues for me with my brain being on high alert - lucid dreams, frequent awakenings, etc. When I take gabapentin and pramipexole, I do NOT get the sleepiness at night, just the next day grogginess.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


Return to “Prescription Medications”

Who is online

Users browsing this forum: No registered users and 1 guest