Does anyone here have experience of taking Horizant for RLS?
After taking oxycodone 5 mg for many years, I have developed serious insomnia, therefore I'd like to switch to non-opioid to relieve my RLS symptoms. I'd like to know if anyone here have tried Horizant and if it is effective to relieve RLS especially after years of opioid medication being very effective.. But the 2-3 hours sleep every night impairs my ability to function during the day. Are there any other medication besides dopamine agonist can be used to replace opioid to relive the RLS symptoms? Thanks greatly, your response will mean a lot for me since I am suffering from severe anxiety over this.
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halperinchen
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I have no experience of horizant (gabapentin enacarbil) because it isn't available in the UK.
However I have taken gabapentin (called neurontin in the US) for some years.
It works fine for me and doesn't cause insomnia. It helps sleep.
My case is different however, I've never taken an opioid for RLS, so I don't know it compares in terms of managing RLS symptoms.
You could try switching.
However, I hope you do get other answers from others who take an opioid. I have read other opioids do not cause insomnia so much e.g. buprenorphine
OR
Some find adding something to aid sleep can help, e.g. cannabis.
Otherwise, currently, apart from dopamine agonists, gabapentinoids, opioids or a combination cocktail of these plus possibly a benzodiazepine, there is no other option.
Thanks for your reply. I was taking Gabapentin almost 10 years ago when my RLS is much less severe than now. That's why I am wondering if Horizant is much potent than Gabapentin. Well, I just got response from Dr B who thinks I can try Lyrica instead. Since 300 mg of Lyrica gives me serious heart palpitation so it is not an option. I hope someone here with Horizon experience can enlighten me as fas as its' side effects and potency concerns, Thanks. give my deep appreciation to everyone here.
Hi Elffindoe, yes Dr. B suggested to take 300 mg with oxycodone 5 mg. But I'd rather switch to only 300 mg Pregabalin if I can tolerate it. I have read all the helpful suggestions from our members about how to switch to pregabalin, I am deeply appreciate it. I am just so scared to proceed with it.
Hi, Happerinchen. What did you end up doing? How are you now? You may or may not remember I was taking methadone and now I'm taking Kratom. Today I was told to start Horizant. Which sounds like it has some awful side effects...thanks!
Hi, TeddiJ, very glad to hear from you and just am wondering how you are doing. I have gone through a period of experimenting Horizant and pregabalin without success. Horizant is quite expensive but Dr, B offered me enough sample to try, but unfortunately it is not agreeable with my stomach issue therefore I did't give enough time too see any benefit, Pregabalin, I have been taking 300 mg of it starting from 75 mg on in the past three month to try to replace the opioid, oxycodone 5 mg which gives me severe insomnia, unfortunately, it offers no benefit for my RLS. So I finally tapered off pregabalin but somehow I have to increase oxycodone to 12.5 mg in order to control my RLS symptoms. I am still puzzled as why the pregablein worsens my RLS. I don't know the reason. Now I am back to square one by taking oxycodne 12.5 mg. TheHempland USA Hemp CBD oil helps with my insomnia now fortunately. I remember you were given buprenorphine, have you tried taking it. Horizant is a precursor of Gabapentin, supposedly better than Gabapentin which I am not very familiar, you may consult with Sue Johnson because she is taking Gabapentin with success. Besides you may have to taper off the kratom you are taking which you can consult with some members of this forum to do the proper way. Are you still coming to LA to visit with Dr. B in April? Or you scheduled video visit with him? He would be the expert to consult with as how to switch from Kratom to Horizant. Hope you the best luck.
I remember the methadone you are taking helps your RLS. Why not continue with Methadone, we have a lot of members taking methadone with success. Just wondering. Joolsg is taking buprenorphine with great success and able to sleep 8 hours. You may consult with her about buprenorphine. Dr. B is willing to prescribe Belbuca ( buprenorphine buccal film).
Thank you so much for this info, Halperinchen! Very interesting to get updated on your journey. Oxy is one of the worst opioids though, and I am not surprised you have had issues. Can't he put you on buprenorphine? Or even methadone?
To answer your question, a second doctor decided he would no longer prescribe methadone. I was in a sheer panic calling all over to try to get more before I ran out and went through withdrawal (which was the worst night of my life). You may remember all this.I could not get an appt. or anything in time so I turned to kratom in desperation and it saved me. For now. I do want to get off of it.
What I have learned from this is that I definitely do not want to go back on methadone. I am having such a hard time right now but I do feel better being off of it in many ways.
I do still have that appt. with Dr. B. I wrote to him and asked him if I should start Buprenorphine. I actually have some sitting here from my late brother and I also found a doctor who would prescribe it.
I posted his response on this forum to try to get opinions on it. He said something about opioid receptors no longer responding if I did the Bup. and went back to methadone. something like that.
So I have stuck with the kratom until my first big RLS appt at a large hospital yesterday. It was disappointing and they just want me to try Horizant again. I bought in an article on the Dipyridamole.
Yes, I did get some great info from Joolsg but she did not comment on the post I made about what Dr. B said.
I didn't-and still don't-know what to do. Per usual! Especially since I believe Horizant causes major weight gain. Last night was awful and I was super disappointed after waiting so long for that appt. Again, per usual for most of us.
Hi, TeddiJ, reading your response with pain in my heart, we all face the same dilemma facing our refractory RLS. I have been doing the same trying to switch from opioid to non-opioid meds to avoid the possible future without access to opioids. But unfortunately, I am stuck with it for I have failed all other possibilities. Concerning buprenorphine, I am again not able to continue taking it because of the leg pain I experienced. But Dr B seems to think that Buprenorphine is much better opioid with much less side effects. Besides I just did one switch without tapering oxycodone on dr. B's suggestion. You may ask for his opinion when visiting him.
Thank you! Oh, I see on the Bup for you. Sorry you are having so much trouble and side effects. I will say that I think opioids will soon be approved and accepted with all the studies and the push by rls.org in Washington. Certainly before anything happens for you that you can't get them. Worst case, if you must, you can get Kratom to get you through. As I was forced to do!
That is interesting what you are saying about Dr. B and Bup because I did email him about switching to it. I have it sitting right here, along with the Kratom.
As I mentioned above-he didn't just say-"go ahead" or "yes, that is ideal." He cautioned me about opioid receptors not working later.
Did you gain weight on Horizant or you weren't on it long enough to know? I don't think I am going to try it now, as per my appt. yesterday.
Thanks for all of your helpful info and try not to worry too much about not getting the opioids. You are in great hands with Dr. B!
Hi, TeddiJ, thank you for your compassion. The time when I asked Dr. B for Bup to replace oxycodone, He supported me wholeheartedly, and instructed me to switch to Bup the next day right away and I didn't have any problem with switching to it right away. If it is not the leg pain bothering me, I would have continued taking it now. So I don't know what the opioid receptors not working means. Anyway, according to some members who have had success with Bup, after your visit with Dr.B why not try it to see what happens. Patients on either Horizant or pregabalin can gain weight, Interestingly I didn't gain any weight during the three-month of taking it. only found my self enjoying eating more than I used to, I usually don't have too good an appetite. By the way, are you coming to LA in person to see Dr B? You might be able to establish a relationship and continue the video visit subsequently, I have seen many patients travel to see him from out of states. By the way I happen to have an appointment on April 14 next month. Nice talking to you and hope you all the best.
That is all so helpful-thank you!! I was told by 2 doctors that starting Bup right away can send you into withdrawal! that you should wait a bit from the methadone or kratom and start into that withdrawal-then maybe start the Buprenorphine.Sounds like that didn't need to happen for you! Perhaps that is more true of people who are on super high doses of methadone etc. too.
My appt is very near your appt! Yes, you have to come in person now. And maybe in person once a year even. Not sure they are doing video appts any longer-unless you live in the state of CA. That would be so much easier but when i called-things had all changed.
Great talking to you, too and thank you so much for all the great info! Wishing you long, full nights of rest!
I went to see Dr.B on the 14th this month, it went very well. He is a very compassionate doctor. I mentioned a little about your case and he reassured me that he has been training 7 to 8 doctors per year so that someday all his RLS patients will be taken care of and he indicated that he is not thinking about retirement soon. He also reassured me that he will help me to find an opioid with less insomniac effect. I feel good being in good hands. How is yours going? is he prescribing Belbuca or methadone for you? What are your taking to relieve the RLS symptoms? Are you tapering off of Kratom? Hope everything is going well with you. Will Dr. B be your regular doctor from now on?
I was there on the 15th. Yes, he is wonderful. But, I haven't started anything new because (of course!) the pharmacy balked at the opioid prescription they sent in. I somehow got off the kratom a while back after a very bad night and a day of vomiting. thank god for that. it was horrible and not sure how people on here took drinking dirt all the time so easily. they must have ingested huge amounts, too-i never slept through the night on it. it was like a nightmare trying to drink that every 2 hours and get through the night.
i was not on anything but Horizant and a little bit of ROP (neither of which were working) when i saw him. I do not want to start another opioid due to all that i have been through. i also feel so much better now that I off of both opioids-that whole methadone cut-off and kratom thing had me in another level of hell that i never experienced during my DA days. But, I have no idea what to do or take now.
Very, very glad you are doing/feeling so much better!
How do you relieve the symptoms at night? Can you get enough sleep without more effective med? You mentioned that Horizant and ROP were not working very well for your RLS. What kind of insurance you have? You say that the pharmacy refused to fill the scrip? I have to switch my insurance from Kaiser to another HMO, when Kaiser found out that I was taking oxycodone and all Kaiser doctors refused to prescribe any med for me and forced me to participate in the detox rehab to quit taking opioid. Now The HMO I have is willing to fill the scrips for the oxycodone Dr. B prescirbed. I am wondering if you can look for other pharmacies willing to do so. Besides you have to have some good med to take care of the horrible symptoms. If you can have Dr B as your regular doctor, then you won't encounter the same horrible experience as you have. Just my six sense. The ROP ropinirole, a dopamine agonist, would carry the risk of augmentation eventually. I have to increase the dosage of oxycodone to 15 mg after tapering off of pregabalin which apparently worsens my RLS unfortunately. I am staying with oxycodone at present although I still experience daytime symptoms, but at least I can get some sleep at night. Good Luck to you and keep us updated with your situation.
thank you for all that info! very interesting and helpful, too.yes, so far the opioid has not been filled. BUT, i am not pushing it to be resolved as I am so so so reluctant to go down that path again. i know-2 months ago that is all i wanted when i made the appt with dr. b. i was so desperate to avoid the withdrawals.
so, no, the horizant was not working and the ROP wasn't working because i was trying NOT to take any of it. again-after all i went through to get OFF it. omg. so i was taking little bits and nothing was working and the nights were bad.
somehow, things seem better. it is FAR too soon to know but i am hoping/wondering if the horizant has kicked in?! i don't think i even took any ROP last night!
now, Dr. B disagrees with everyone on here and says horizant should have worked very soon after starting it. hmmmm.
yes, i will continue with Dr. B and I know i most likely will never face what i did before with getting cut off unexpectedly by 2 doctors. and absolutely FREAKING OUT with fear of those withdrawals.
but, the crazy thing that happened with my awful story-i now remember what it was like not being on an opioid. i just hate the thought of it now! i hated the monthly stress-which would never ever go away after what i went through. i don't like falling asleep without any warning if i watch a show or go to a movie. i don't like feeling lazy and looking back over the months knowing i didn't do as much as i should have.
worse-i don't like being treated like a JUNKIE by anyone and everyone who hears the word opioid. including the pharmacy, friends, family. i don't like then FEELING like a desperate junkie. and i became one! even on that low dose. it sucked.
i know they are a lifesaver to so many on here. and i get that totally.
if and when i do start an opioid again-it will be because i absolutely have to. i may be at that point any day now.
however, it has been a long time since i even had evening symptoms other than when i was on the kratom. i've never had daytime symptoms. it has mostly been as soon as i go to bed-and worse this past 9 months when getting off the DA's.
thank you for your support and concern! so sorry to hear you have daytime symptoms. that is awful!
BUT-it is obviously due to augmentation on a drug you shouldn't have been on. ugh! these doctors and their BS help! you are going to be doing so much better soon! and luckily you do have an opioid to get off the preg. SO very glad you went to Dr. B!!
I know what you mean about the stigma of being on an opioid. It doesn't feel good at all. The reality however, is that these drugs work for many and make life tolerable. I think doctors like Dr. B are trying to remove that stigma, relieve people's suffering, and "normalize" the use of opioids. BTW I tried 2.5mg of methadone the other night. I did not sleep at all. It was horrible. No RLS, but what good is that when there's no sleep? It makes me anxious knowing that there is one less option for me...
Oh, crap! But, what else are you taking? Do you think it could be another drug or the combination?Try not to worry-Dr. B told me he has many drug options in his arsenal. He will figure this out for you!!
Yes, for sure true on the opioid discussion. I will probably have to go that route.
PS-I didn't sleep that great on methadone either. Not "no sleep" but I often took a piece of a sleeping pill-if I had any-to fall asleep. Then, oddly, I could easily fall asleep during the late afternoon or evening-like on a dime and the best sleep ever. Overnight-it was not the same.You are on several things right now so I'm sure he will have a theory and solution.
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