After nearly 3 years off of phenytoin (Dilantin) I have been rediagnosed with epilepsy. I have been placed on 500 mg levetiraceta (Keppra). I had also just recently had Gabapentin added to my Ropinirole regimen, to help with my RLS. I was assured I could take the everything together and I was sleeping like a baby (was sleeping great with the Gabapentin), but now my RLS is waking me in the middle of the night. Has anyone else dealt with Keppra? I space out when I take each of the meds throughout the evening, taking the Gabapentin and Keppra together just before bed. I'm depressed about the epilepsy diagnosis, depressed with the strong effects of the Keppra and of course, depressed about the sudden lack of sleep just when I was beginning to get some.
Keppra: After nearly 3 years off of... - Restless Legs Syn...
Keppra
You are going through some tough times. Rls does wax and wane somewhat and it may be you are going through a bad patch just now which will resolve. Are you keeping an eye on your serum ferritin levels? A drop in iron can exacerbate the condition. Are there other changes eg dietary etc that might be making things worse?
It’s not much consolation to you but I read a post some time ago that speculated that Keppra had caused an improvement in rls symptoms!
What dose of ropinerole are you on? Is it possible it is causing augmentation?
Thank you for your reply...dancer. I am on a rather high dose of Ropinirole 2mg of Er and 1.5 mg of the regular, separated by an hour in the evening. I have been on it for several years. I know I am augmenting, because I have earlier onset of symptoms and get it in my right shoulder and arm occasionally. I found a new neurologist recently, who seems to understand RLS much better than previous ones. She recommended the Gabapentin to help and I believe, later discussions would result in backing off of the Ropinirole. She found the epilepsy not because I had a seizure, but because I was on a heart monitor at the time and she thought the symptoms I was experiencing could be seizure activity. She had me do an EEG and this produced the diagnosis. Just found out today, my MRI is clear, which settles the mind somewhat. You’re right, this may be my body’s response to the changes, instead of the introduction of Keppra. I do have a script to have my ferritin levels checked...have been on ferrous sulfate for maybe 6 months. I have some undesirable side effects with it. The doctors assistant recommended an oral syrup instead, but my insurance company won’t cover it, saying I can get it OTC. I’m confused, as the pill is by prescription. You mentioned dietary changes, which I have been eating low carb to drop some weight. I’m going to try some carbs for dinner to see if I see any change. Thank you for your suggestions, help and above all...your kind words.
You really do have a lot going on but very comforting to have a consultant who seems to know her stuff. In your shoes I would not mess around with the rls treatment for now but give everything a chance to settle down.
Maybe research and try the various non-pharmaceutical options for dealing with rls such as very cold water after a hot bath, magnesium rub to the legs at the onset of symptoms, compression stockings if you can afford them, yoga stretches, caffeine and all the other positional type remedies that are from time to time suggested on here.
Iron can be taken in various forms. Many on this forum favour the supplement iron bisglycinate (aka ‘gentle iron’) for raising serum ferritin. For non-pharmaceutical intervention, eating liver is the optimal option.
It sounds as though you need to give your body a chance to adjust to the new treatments and unfortunately this may mean a period of almost intolerable sleep disruption courtesy of rls. Once other issues have settled down you can look at the rls in earnest and, sadly, this may mean you have to go through the misery of withdrawing from ropinerole. Even this contains a silver lining however in that you will most probably find your rls symptoms will settle down at least somewhat and ultimately they should be amenable to a new improved treatment regime.
In the meantime I’d be very interested to hear how you get on as leviteracera is on of the drugs I have on my list of potential options should all else fail for my rls.
I will keep you informed. I’m feeling more at ease after reading the responses herein and knowing my MRI came back good. It looks as though I can find iron bisglycinate on the shelf. Do you think I should stick with the same mgs of iron to begin with? I’m on 325 of the ferrous sulfate.
Dear wcp2008. I note that you have recently had gabapentin added to your Ropinerole treatment for RLS and that you have been rediagnosed with epilepsy. You should read up on the effects of gabapentin. This drug can be used to treat epilepsy but I see that it can also cause seizures. When I was given it for nerve pain many years ago it triggered migraines with aura and I had never suffered these in the past. I still get the migraines and wish I had never been prescribed gabapentin.
I would point out that I have no medical background and that I just take a keen interest in drug interactions and side effects as I am very sensitive to many different drugs. I would advise you to look into your present treatment as it seems to me to be quite a coincidence that your epilepsy has started again since taking gabapentin.
I hope you get this sorted quickly
Keppra should relieve any tendency to "jitters", after all ,it is an anti seizure drug. It is also considered to be extremely safe, even for long term use.
My grandson, who suffered oxygen deprivation at birth, has been on it for over a year. I researched it fully at the time !!😩🙄 He sleeps grand and no sign of any fits.
I'm wondering how long you've been on the rls medications, and, as the others have surmised, whether you are augmenting ( our favourite get out clause on this site!!😩😭)
Hope things work out for you.
Cheers.
Definitely experiencing augmentation. I guess I really do need to give the Keppra time. It’s just that after getting good sleep, it’s so hard to go back to fighting with the sheets. Others have offered some other great ideas. I do think I’d better give this all some time to settle in and try to keep the emotions in check. I’m truly nervous about increasing the Keppra tomorrow night, however, it might just give me one good night to look forward to. Good to hear from...thank you.
It’s been awhile since we spoke. I had to be taken off of the Keppra, as I couldn’t handle the sleepiness during the day and it was creating emotional issues that ran from one end of the spectrum to the other. I ended up on Zonisamide instead. I do not have any RLS problems at night...praise God! I must say I don’t sleep as heavily as I eventually did with the Keppra, but I also don’t wake up like a Zombie and run into walls! I also don’t yell at people and then break down and cry!
I am still on Ropinirole and still augmenting with late afternoon RLS. In the last 4 weeks I started weaning myself off of the Ropinirole. I was taking 2mg of Ropinirole ER 1 hour apart from 1.5 mg of regular Ropinirole in the evening, plus I take 300 mg of Gabapentin. I started cutting the regular Ropinirole pills in quarters and backed off every 2 weeks. I am down to 1mg of the regular plus the ER. I believe you are right about the epilepsy meds taking care of my RLS, at night anyways. I have one more week to go on 1 mg of Ropinirole and will drop to 3/4. I see my neurologist on the 18th and hope to get her ideas on how to wean off of the ER pills...those can’t be cut. More Gabapentin may be in store for me, at least in the short term until the Ropinirole is gone. That tends to make one drowsy, so I’ll have to keep myself busier in the evenings.
In case your grandson is ever put on Zonisamide, I deal with reflux and take Pantoprazole in the mornings and have had to add Fomotadine (@ my gastro doctor’s recommendation)at bedtime to stop a constant burn in my chest, which is finally under control. That will be discussed with my neurologist as well.
Biggest outcome, is my overall well-being. I am in a much better place than when this all started. It just goes to show that a doctor, the right meds and some friendly advice from people in a group like this make life so much better!
The only thing I would add is that I personally think low carbs might be better than a high(er) level of carbs - they can be inflammatory for some people. If you're thinking about the impact of your diet on RLS, have you considered avoiding gluten, dairy, MSG, excess sugar consumption? Good luck.
Thanks for the extra tidbits, Yoda! I’ve always completely or sort of followed the South Beach diet. I definitely don’t get much sugar, but am a Stevia fan... early last year cut my consumption in half though to help with RLS. After becoming lax, I decided to join the weight loss program at work and jump on the South Beach bandwagon in full force. In a nutshell, the first 2 weeks is no carbs and you re-introduce the right carbs the next 2 weeks and move up to the maintenance phase when you’ve lost what you want to. After adding carbs last night, I had a better night and my frame of mind was much better after eating some more today. I know I’ve heard people mention “the gut” being tied to RLS and wonder if this isn’t quite so! I’m going to incorporate the diet with clean carbs and low GI impact foods and see how that works. I hit 60 this year and want to face it in the best health as possible, barring the latest findings. If I don’t make this change now, I may never get it done.
An update to my first post above titled “Keppra”:
I have adjusted well to the side effects of the Keppra (Levetiracetam) and am now taking 1000mgs twice a day. I am still on the Gabapentin 300mgs per day, plus the Ropinirole in the doses listed in my original post. My most recent EEG shows no concern and I await my next visit with the neurologist in March, to discuss next steps...if any.
Based on what ‘involuntarydancer’ said above, I took to heart the changes in diet comment. I had only just begun the South Beach diet and was barely eating any carbs. I immediately reintroduced rice, potatoes, etc.back into my diet and lo’ and behold, no more RLS problems (with the exception of late afternoon to early evenings before I start my meds, which I believe is due to augmentation on Ropinirole). I am sleeping again, stressing less...but putting on weight.
I have been seeing a chiropractor for a neck and hip problem, which also has helped with stress and I am just now beginning exercise (to include stretches the chiropractor recommended and using our elliptical machine). I will drop this weight somehow!
I will update again, after seeing my neurologist next month. Maybe Keppra is a possible help to my fellow RLS sufferers (most certainly Gabapentin is). The side effects of sleepiness and dizziness are now very limited. I do get angered a little more easily, but that too has subsided. My husband has gotten used to my short outbursts, like when I can’t get a sock off my foot when I want it off and fling it across the room and it catches on the ceiling fan!😆
Weight gain I believe has to do with the initial other side effects and now that my head has cleared, should also be easier to work on. If you are a low-carb dieter and suffering with RLS, I recommend you try other options. For me, eating carbs at night is a must.
3 months later and I’ve made a complete change. Keppra (for my epilepsy) kept me drowsy throughout the day and played with my emotions (I.e. anger issues and depression) but my sleep was fantastic. My neurologist titrated me off of the Keppra and put me on Zonisamide. I am functioning much better, with less emotional issues and not so drowsy. I wake at least once each night to pee and do wake early, but have no RLS problems during the night. I do still deal with augmentation, due to the Ropinirole...early onset of RLS in the evening, but it is soon subdued by the Ropinirole and Gabapentin. Next, to titrate off of the Ropinirole! More to come!
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