Started gabapenten - no relief

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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: 850
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: 850
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: 850
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: 153
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: 153
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.


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