Hi All
I have now successfully come off Ropinerole and have been on Gabapentin for over 2 months now.
I have increased my dosage to 3 x 600mg in the lead up to going to bed. Sadly I'm still not getting a full nights sleep. I'm waking up at least once if not twice. under two hours after falling asleep and then another 3 hours to waking up again.
Any advice please.
Thanks
Simon
Does the gabapentin control your RLS? If so, then you need something to help you sleep. I would recommend ativan or ambien. If not, there are three possibilities. 1) you are taking some other medicine or OTC supplement that is making your RLS worse 2) you are still not taking enough. Since taking more than 1800 gabapentin would mean taking a dose 8 hours before bedtime, you would want to switch to pregabalin which can be taken all at once 1 to 2 hours before bedtime. The equivalent dose is 300 mg pregabalin. Then increase it by 25 mg every couple of days 3) Your dopamine receptors have been damaged by your years on ropinirole. In that case you will want to switch to an opioid. To come off gabapentin, do so very very slowly or our will have withdrawal effects. If you do so slowly, you won't have any.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Hi, does Mirtazapine make RLS worse?
Yes it can. Safe antidepressants for RLS are trazodone and Wellbutrin, both of which can help RLS.
Thanks, another pill we have to change then. Oh well onwards and upwards.
That’s not just another pill you have to change. That might be THE cause of his severe RLS symptoms.
I do drink a lot of coffee so might try and stop that and see what happens.
Thanks for the advice
some years ago I gave up coffee and tea except for decaf with immediate improvement. I then heard that decaf was not perfect so I now drink hot water. I gained another incremental improvement - and water is cheaper than coffee. Of course some people find that coffee helps them sleep without RLS. So you have to experiment on yourself.
I love coffee but I also limit it now and find it helps. I have one real coffee first thing and a decaf before midday although as Graham says decaf still has quite a lot of caffeine. For most people caffeine half life is 5-7 hours so most of is gone by bedtime. I love really strong Vietnamese coffees but I have realised the trade off is a poor night later on. I also find limiting food and carb intake helpful, reduce the amount you eat, reduce carbs and increase fibre, and try to stop eating early evening. Sue’s list of things which can make RLS worse is and excellent reference of other things to avoid. Lastly there are several other straightforward sleep hygiene principles which you are probably aware of including:
- a cool bedroom; a body temperature drop at bedtime helps
- dark room and avoid blue light (phone screens and computers) just before bed
- getting up and going to bed at the same time every day
- if you can’t sleep then get up and do something else for a short while rather than lie there stewing about it.
Avoid alcohol close to bed time.
Good luck.
I am the same with gabapentin. I am now taking 1x300mg at breakfast. Then 600mg at 3pm. 600mg at 6pm and 600mg at 10pm and still my legs are dreadful.I have to get up every 2 hrs and walk about reading. It drives me crazy.
Sleeping tablets make my legs worse, although I have never heard of ativan or ambien???? Are these prescription drugs?
I am going to persist with the later divided dose as I think maybe the worsening of my legs at the moment (up and down like a yoyo) is maybe because I have changed the times of my drug taking dose and maybe it takes a couple of months for the new time change to work??
I am ever hopeful!
Oh and Merry Xmas & thanks to everyone, especially Sue.
Those are US brand names. Ativan = Lorazepam
Yes, over-the-counter sleeping pills with an antihistamine (diphenhydramine), such as Unisom, Benadryl or NyQuil PM, will make RLS worse. Melatonin also aggravtes RLS. Prescription sleeping pills such as Ambien are for short term use only. Eventually they will cause rebound insomnia.
Thank you for info. Nearly everything that aids sleep aggravates RLS!
If you're open to it, THC helps with sleep without aggravating RLS. I use Delta 8 tincture. It won't make you high and it is legal in states that outlaw marijuana, even for medical use. The only drawback is the lack of data on long term use.
Rebound insomnia is when you stop using them. And if they work, you never need to stop using them. And one can prevent rebound insomnia by stopping them very slowly, so that is no reason not to take them.
try taking your last dose of Gabapentin about 8:30 instead of 10:00. That helped me.
Thank you. I will try earlier time for last dose.
Did you have instant success?? I tried 9pm last night (now taking my gabapentin at 3pm. 6pm and 9pm and my legs are going crazy)It is sooooo depressing.
Do you think my legs are reacting like this because I have changed the timings from morning, noon and night?
Should I just be patient and hope they will settle down?
Or do I just go back to morning, noon & night as my GP prescribed?
I am soooo tired.
You stopped the morning dose? I’m confused as to your reply.
I take 900 mg at 9:30 am, 600 mg 3 pm and 900 mg 8:30 pm doses.
Sorry Marsha. I was so tired in the middle of the night that I have written rubbish!!To recap.
I used to take my tablets morning, noon & night in equal doses as requested by my GP. This did not work.
Now with everyone's help & advice
I take 300mg gabapentin at 9.30 am
600mg at 3pm.
600mg at 6pm
And now am trying 600mg at 9pm instead of 10pm.
But my legs have gone into overtime.
I just wonder if I need to persist with this timing for a few weeks as maybe it is the constant changing of timing that is making my legs worse.
Sue, Jools and the Mayo Clinic say it is best to take my main dosage in the evening so have moved my lunchtime dose to 3pm and so on and just take a small 300mg dose with breakfast.
Simkins
im still a bit confused as to why you are taking 4 doses
Because my GP had me taking 900mg before bed.Sally, Jules, Mayo Clinic say it is a waste of time taking 3 x 300mg at night and have suggested I take 2 x 300mg at bedtime.
But
Because my GP has prescribed me to take 2,100 gabapentin daily I need to take the spare 300mg at breakfast.
It is a bit complicated to explain but all the advice is to stick to doctor's prescription dose but just divide it out in a different format.
gotcha. Maybe mine is different because I take it for nerve pain as well as RLS
I have replied to this about taking gabapentin earlier so hope you have received my reply as I seem to have sent reply to myself and I don't know how to redirect it to you!
I have used the same med but found it has an effect on my Labido so stopped it .
Gabapentin was useless for me. I was on Ropinerole with limited results + nausea. I've been on a tiny (5mg) dose of Methadone 1x/day (taken at night) for about 4-5 months. It was a lifesaver. No side effects and I can get 10 hrs sleep. I've found I must stay away from dairy/sugar/'caffeine after 6pm and I have ZERO episodes. P.S. Stay away from Benedryl too!
kcraig, are you still on gabapentin or justMethadone?
Only methadone
Trazodone helps me sleep. I take 100 mgm at bedtime and I am almost always asleep within 30 minutes. I also take 600mgm of Gabapentin earlier in the evening. And I have some Klonopin if needed (but I can go weeks without needing it). I have found - with family members - that many doctors are reluctant to give the stronger benzodiazepines like Ativan because of the potential of addiction.
Is it insomnia or RLS that's waking you?Often, gabapentin and pregabalin don't work for those who have augmented on Ropinirole or Pramipexole.
In your case, try changing the timing of gabapentin, but if you still have RLS, you may need to increase the dose or switch to a low dose opioid like Oxycontin, tramadol or Buprenorphine.
Thanks Joolsg
I wake with symptoms so believe it to be RSL thought happy to be proved wrong. I tend to wake first time about an hour after falling asleep which may be insomnia but I'm sure the others are RLS.
Thanks
If you wake with RLS symptoms, then it is RLS. Even on 25mg Oxycontin & 150mg pregabalin at night, I used to be woken 2 or 3 times every night with RLS. I wasted 5 years like that believing what Prof. Chaudhuri told me- that 4 or 5 hour's broken sleep was the best I could expect. I was utterly miserable.I'm so glad Shumbah posted on here about Buprenorphine & how it had stopped all her RLS & enabled her to stop cholesterol & high blood pressure meds as she was getting sleep for the first time in years.
Many GPs are reluctant to prescribe it & require the 'approval' of a neurologist.
We need controlled trials of Buprenorphine so it can be licensed for RLS in the UK.
Thanks JoolsgWho was the neurologist who prescribed it for you.
Simon
My neurologist was reluctant to prescribe it but I pushed and eventually he emailed to say he would have no objections if my GP agreed to prescribe it. I was very lucky that my GP agreed to a 3 week trial. The results were so incredible that she happily renewed the prescription. I had sent a copy of the Massachussetts Opioid Study to show that low dose opioids are safe and effective for RLS.Prof. Walker at UCL Queen Sq will prescribe opioids for RLS and will arrange iron infusions where appropriate. He does phone consultations.
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