Horizant

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.
pjmccoy1
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Re: Horizant

Post by pjmccoy1 »

Does anyone know why once you've experienced augmentation from 8 years of Sinemet you cannot restart it? I've been off Sinemet since Nov 2012 at which time I was taking it in combination with Horizant. It worked so wonderful for me for years. I'm now on 300mg of Horizant (5 days) with plans to titrate off (even though XenoPort says 600 mg doesn't require titration) because of depression issues, painful teeth, and some very dry eyes. Last time Neuro ripped Horizant from me I experienced unbelievable withdrawal with the added bonus of Burning Mouth Syndrome which I still suffer with as if RLS isn't bad enough. Haven't tried Lyrica but expect same issues with Horizant, depression, not to mention weight gain and swelling. But it appears I'm down to Lyrica or Methadone.
PJ, Heaven Bound

ViewsAskew
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Re: Horizant

Post by ViewsAskew »

Once you augment, you tend to augment more quickly the next time.

The few of us here who've experimented and shared what happened have found this. We can use DAs periodically, just not regularly. For example, I augmented on Sinemet, pramipexole, and ropinerole. Yet, I used pramipexole for over two years by alternating it. I'd take it, then an opioid. As long as you don't take it more than 4 days a week and no more than a certain amount (can't remember off hand, but it's here somewhere), you may not have an issue.

If you try it, you'll know quickly if you have an issue or not.

You can easily try ropinerole or pramipexole if you haven't. And, alternating with an opioid (you don't have to start with methadone - a mid range opioid might workd) might prevent augmentation and dependence.
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.

pjmccoy1
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Location: Below the Mason Dixon Line USA

Re: Horizant

Post by pjmccoy1 »

I tried lowest dose of Mirapex at 4pm and RLS went wild for 4.5 hrs so never took 2nd recommended dose at 9pm. Tried again next night same thing and then felt very nauseous went to bathroom with dry heaves, cold sweat, felt faint so sat down on floor by toilet until subsided. Had same experience 10+ years ago after only one dose and within short time walked across room and passed out and hit floor. Requip made my RLS go wild for 2 days. Thus I'm down to seeing if 300 mg Horizant will lessen depression and give me some relief or add opioid and both. What the difference between Methadone and Prolonged Release Oxycodone (http://www.hopkinsmedicine.org/neurolog ... ew-in-rls/) ? Is it true the opiates cause teeth rotting, nausea, sweating, depression? And what to you take for nausea that is RLS friendly since literature states anti-nausea drugs make RLS worse (like anti-depressants)? Anyone been on opiates longer than 10 years? Only study I've read is for 10 years.
PJ, Heaven Bound

ViewsAskew
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Re: Horizant

Post by ViewsAskew »

You've just demonstrated why you can't go back. Most of us hit a critical point when any of these are problems.

BUT - If you tried pramipexole or ropinerole when you were augmented, you may not have the same result now. You may, but it's less likely after time away. I can see why you'd not want to try again.

I know you are very conflicted about opioids. It's a tough decision. If you want a life in which you can participate, you may not have many options.

Nausea - there are drugs you can take now. The main one is....can't remember, lol. But if you search on RLS friendly anti-nausea, it will pop up.

Methadone vs prolonged release oxy - just a different drug. Like asking what's the difference bewteen ropinerole and pramipexole. Both are in the same family. None of us seem to react the same to these drugs. You may find one works better than another. Both of these drugs work in your system for a longer period than many other opioids. You may find you tolerate one better than another.

They've only been using opioids for about 10 years (in the literature). There may be someone, but I haven't seen anyone posting here.

Just as with the other drugs we take (every drug we take has a LONG list of potential issues, none of them nice), there can be problems with opioids. Yes, they can cause nausea. If you are opioid naive - having never had them for surgery or pain - you will need to start with a very small dose and be careful. Depression? I suppose they can cause it - every drug we take can. The depression I had while using Horizant and pramipexole was awful. I have no issues with methadone. I do find that some other opioids put me on edge, make me grind my teeth. But, that's me. You may have a terrible time....or an easy one. Just as you did with the other drugs. In that way, they are no different.

Rotting teeth, as I understand it, is related to people who abuse the drugs. There can be dry mouth, which always causes teeth issues, no matter what the cause. If you find your mouth is dry, then ask your dentist what you can do. Gum is helpful, some toothpastes can help. Xylitol gum is best, according to my dentist.

It gets to a point when we have few options. We can be miserable - for some of us, we lose our jobs, relationships, and having uncontrolled symptoms is worse than anything we can take. We can try alternative pharma - such as kratom or poppy seed tea. We can try alternative non-pharma, such as massage, acupuncture, diet, minerals, iron infusions, amino acids. We can try pharma drugs.

Most of us who get to your point tend to run through the gamut until we get something that works. I fought taking ANY drugs for twenty years. I lost my job, my partner, and my life as I knew it. I decided to take drugs only when I'd exhausted my options and I was lost in the world. Some of the drug options made life even worse for me. Over a period, I've come to accept where I am and decided to use whatever works best for me. Do these things cause problems? Sometimes. Am I still miserable sometimes? You bet. Can I now work? Yes (with caveats).

I only know one thing - I'd be dead right now if I'd not tried all the options available, because I simply couldn't live that way. That's me. I don't do well when I can't participate and contribute. Other people do OK that way. You have to know what's important to YOU and what you are willing to do to maintain or achieve that. It may not be what's important to me.

If you decide to go the opioid route, remember that it's not permanent. You can stop if you do not like it. Also remember that you don't have to take them all the time. While it's not easy, you could take them for 5 days then take 2 days off. It would be a miserable 2 days, but you'd not get tolerance or dependence.

6 or 7 years ago, I thought I was out of options. Since then, I've tried at least ten more options. And there are still a few left to me. It's rare for us to get to the point that there is nothing left.

One other thing. There are other drugs in the anti-seizure category. Several, actually. There are several people who did not do well with the ones you've used who've tried these others and have succeeded.

Hang in there - it's scary as can be. The AA way is a good way to handle it- one day at a time while saying the serenity prayer :-). I'll close with the agnostic version :-)

Please (sub your Higher Power here, if you have one)
Ggrant me the serenity to accept the things I cannot change
The courage to change the things I can,
And the wisdom to know the difference.
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.

CarolWR
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Re: Horizant

Post by CarolWR »

I've been taking Horizant for several years and it seems like its effectiveness is weakening, as I awaken 3 or more times a night and need to stretch before I can go back to sleep. The doctor just prescribed a muscle relaxant, Baclofen, to take with it as a "boost" to increase its effectiveness. Does anyone have experience with this combination?

Polar Bear
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Re: Horizant

Post by Polar Bear »

I have heard of others taking this medication but I'm not aware of it being extremely effective.
What does come to mind is 'muscle relaxant'..... usually our symptoms are when 'relaxing'...
I tried it and felt no benefit.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Horizant

Post by ViewsAskew »

See this Foundation handout that discusses the drug. http://www.rls.org/document.doc?id=2204
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.

bryher
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Joined: Wed Feb 01, 2012 8:14 pm

Re: Horizant

Post by bryher »

Hi, I havent read this whole thread but saw the subject and last few posts andd thought I'd share. I've been taking horizant for over a year now. I originally took Requip/Ropinerole and augmented terribly! Took me months to get off of it. Horizant seems to work well. Doesnt rid my symptoms completely though so I'm still battling this. To answer a question above, I wouldnt say its lost its effectiveness as much as I'd say my RLS has worsened. Just my 02 cents.

CarolWR
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Re: Horizant

Post by CarolWR »

Thanks for responses on Baclofen. I stopped using it after about 1 1/2 weeks because it caused terrible headaches....however it did alleviate night restlessness somewhat.

badnights
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Re: Horizant

Post by badnights »

PJ you haven't posted in a while but I was going through the thread and had some thoughts for you. First, Ann's post is great, I hope you read it.

I'm wondering about your depression. Did you have it before the gabapentin? If not, then your doctor is compounding your problems not solving them. If a medication causes a side effect that requires another medication, you might not be able to break out of that spiral. It is safer to remove the offending medication and try another one that hopefully won't have a side effect so terrible it requires additional meds.

I have copied some comments you made in this thread and added my own comments:

Here's my question for those who have had successful treatment with opiates, how long before you have to do drug holiday or dial up dose?
Might not have to at all. My experience was that I ramped up over 2 years from 9 or 12 mg to 18 mg then stabilized somewhat for 2 yrs. I was creeping up still, but much slower - I was taking 21 mg some days - but then with a change in diet I have now reduced back down to 12 mg, and some days only 9, in a span of 7 months.

what happens if I take the opiates long term and then I get really sick and need something for pain and nothing will work because I've become tolerant to pain killers?
The doctors are all aware of the effect of being [the opposite of opioid-naive, I can't think of the term]. They know you're tolerant, so they account for that. I was on 15 mg daily of hydromorph contin when my leg was operated on, and they prescribed Percocet - just as if I wasn't on anything. And the Percocet did the job. But I am sure if I was not feeling any relief, they would have prescribed more.

I just don't have pain with my RLS so I don't understand the opiates connection.
The connection is probably subtle, no one really understands it, but we (WED patients) seem to have a lack of endogenous opioids (natural opioids made by our bodies, like endorphins), and this somehow screws up the signals that neurons send to each other. Opioids have an important function in our bodies, they are neurotransmitters, meaning they pass messages between neurons. If those messages go missing or get screwed up, then bizarre things can happen, like WED sensations being sent to the brain - sensations so weird that our brains don't even know how to interpret them.

I am a very complex case because of depression on top of the RLS and failing or unable to tolerate the firstline RLS Rx's
You are complex indeed, but no different than lots of us who have found successful treatments, so focus on that huge positive.

Some thoughts on your DA experience
I tried lowest dose of Mirapex at 4pm and RLS went wild for 4.5 hrs so never took 2nd recommended dose at 9pm.
Is it possible that you mistook the evening onset of WED for an effect of the Mirapex? Especially considering that the Mirapex takes 1.5 to 2 hr to kick in. You probably didn't take it early enough. Perhaps the WED arrived, exactly as it was going to anyway, but you mistook it for an effect of the Mirapex, which hadn't even kicked in yet. If you were coming off something when you tried it, that could explain the intensity of the WED.

However, the second night of nausea etc, sounds like a bad reaction to the Mirapex (or opioid withdrawal :) but you haven't tried any yet)
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

pjmccoy1
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Location: Below the Mason Dixon Line USA

Re: Horizant

Post by pjmccoy1 »

Continued to spiral downhill. Currently not on anything for RLS other than continuing magnesium powder, Calmlegs (valerian, iron, nutrients) and .5mg-.75mg clonazepam at night. Depression horrific. Now seeing another psych. Tried Remeron at night due to 10 weeks of unexpalined nausea and weight loss and no appetite due to nausea. GI ultrasound and CT scan shows all clear. Anyhow Remeron gave me some sleep but not without fighting RLS that was in my upper thighs with some pain. Is this augmentation? Stopped it after 9 days. Then wanted to start me on Lamictal and I am not bi-polar but low dose for extreme depression. Still having the thigh pain now and RLS too. It's like the RLS has moved from calves to thighs now. Also more during the day, earlier and more often. Again, no RLS treatment but according to some of Dr. B's literature Lamictal might be okay or help RLS. Apparently not the case for me. Wish I could tolerate Wellbutrin because I know for me it helps the RLS but I cannot go to sleep at all, extreme insomia which we all know is not good for RLS. If I could get over this nausea I would try the Methadone again, even at 2.5mg I found some relief but after 4 days of it I stopped due to extreme vertigo and that seems to be when nausea started. Wound up 2 weeks later at my PCP and got 2 IV bags due to dehydration. Taking 4mg of Zofran twice a day for 10 weeks now and still have nausea (just not as bad) Forcing myself to eat. The Remeron helped nausea and I could eat more (appetite came back next day) but the RLS thigh was worse than the original RLS in calves. Go back to sleep doc (also treats RLS) and psych tomorrow. I hadn't been on sight in a while because I was already so discouraged reading the posts. I didn't know that RLS progressed and everyone seems to fail med's and switch all the time. Just very hopeless and I'm barely hanging on. Have my faith but that is under attack to and I just want to go to sleep more than 3.5 to 4 cumulative hours per night. I used to look forward to nights because the clonazepam would help me sleep or the Horizant would but then the depression came back strong and had to lower clonazepam and stop Horizant. Gabapentin for me apparently is not an option with the depression aspect. I am continuing to decline and the thought of living with this for years is overwhelming. I can barely work and I need to work due to sleep deprevation, depression making focus very difficult. But I must have the insurance to pay all my med bills that aren't doing any good. Again, more hopelessness and exercise in futility. Nausea, unexplained weight loss (one GI doc actually said to me, "You're losing weight because you're not eating." Seriously?? Are you kidding me? I drove 2 hours for that mental giant medical diagnosis. Then he sent me home with an IBS diagnosis and told me to go on a fodmap diet... what a joke. I lost even more weight trying that thing after only 4 days. At 52, I cannot imagine life like this. I am simply existing. TMI I know, just needed to vent. I plan to ask my Sleep Specialist, do you think you can help me sleep? My sleep doc is wonderful. I know she is genuinely concerned but I think my depression and weight loss has freaked everyone out. Depression seems to be more of everyone's concern. Heck I am too. But if I could sleep I might not be so depressed. Plan to ask again about maybe a short acting pain med, hydrocodone? But I know that won't help the daytime RLS.
PJ, Heaven Bound

Polar Bear
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Re: Horizant

Post by Polar Bear »

Depression is of course a concern, it's hard to find the necessary motivation to find other conditions when the black cloud in hovering above.

Everyone talks of Zofran being so wonderful in fighting nausea but like most other drugs it is not the answer for everyone, I'm glad it is helping you somewhat but the continued nausea and unexplained weight loss does need investigated. Smart specialist - not eating = losing weight, not too hard to figure that out !
Sometimes our medications make us feel sick, I have to be sure to take my Lanzoprazole daily or the nausea will kick in.

I do empathise with your extreme insomnia as I currently function on around 3 - 4 hours cumulative sleep and am heartily fed up with the long wearisome nights. Zopiclone for sleep does not work wonders for me. It was a little better when I took Amtriptyline for its sleep enhancing properties but eventually could no longer deal with the next day fogginess/grogginess and weaned myself off. It's great to feel a bit more alert despite only approximately 3 hours sleep.

Have you tried any of the slow release medication which may provide better day time symptoms relief.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: Horizant

Post by badnights »

Well, of course you're depressed! Geez, who wouldn't be, when you're not sleeping and puking up whatever you eat. It amazes me that doctors need to be told this - - chronic sleep loss causes depresseion! I'm not saying you're not depressed on top of it all, but seriously, treating the depression won't do squat if the WED is not under control. What blows my mind is that you're on nothing for the WED - Nothing! - despite being completely unable to get a full night's sleep. Why is that?

I also think they really seriously need to chase down the reason for your inability to keep food down. Surely there's a reason for that, though I bet they're trying to tell you it's all in your head, and that your IBS ia all in your head, too. It's hard to fight back, but don't let anyone else's negativity get to you. Something in your body is seriously out of whack, and they should be looking for the cause. A "normal"

WED/RLS is way more common in people with bowel disease than in the general population - something like 30 to 40% vs only 5-10%.(including irritable bowel syndrome, small intestinal bacterial overgrowth, celiac disease, Crohn's disease, ulcerative colitis) There is a reason for this, but no one is sure what it is. Clearly, something to do with absorption of nutirents - something that is critical to preventing WED is not getting absorbed, Maybe iron, maybe more than that. I wouldn't be surprised if your nausea is part of the WED problem somehow too.

I don't think everyone switches meds a lot, but we do get more people on the board who do, because people tend to come here when things are oging poorly, whereas the ones who are doing well, stable on one med for years, don't tend to come here.

Let's see - your WED was controlled for years, then you augmented and had to stop Sinemet in 2012, tried Horizant but it caused depression, a stupid neurologist wanted to put you back on it!!!! and treat the depression because that was somehow better than finding a medication that didn't cause unbearable side effects?? sorry I don't understand why he didn't try you on hydromorphone or oxycodone - - then I lose the thread, because you have tried methadone, according to your last post, but I am not sure where that fits in the timeline, how much did you try and for how long?

Admittedly I don't know your whole history but it seems there are a lot of WED options still to try. There are a huge variety of opioids (which tend to have less side effects than the dopaminergic and anti-convulsant meds), and there is the possibility of alternating a dopaminergic (pramipexole or ropinirole) with an opioid. Are your doctors exploring any of this?

Who is your WED doctor? The psych, the sleep doc, or the neuro?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

pjmccoy1
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Location: Below the Mason Dixon Line USA

Re: Horizant

Post by pjmccoy1 »

Not vomiting. Just nausea every day for 14 weeks now (end of August). Had a upper/lower GI end of July because of long term loose stools, diarrhea every morning. The clean out prep pretty much did me in. My sleep doc wants me to try lower dose of Methadone again (liquid form) at only 2mg since I had some benefit at only 2.5mg tablets. However, I am mortified of the vertigo and now with daily nausea even on zofran what will happen with meth? Doesn't it cause nausea too? Yes had depression in the past. Yes Horizant a no no for me ever again and since Lyrica in same class probably not a good idea. I've got to stay off internet and forums according to my Psych because it makes the despair anxiety, depression worse. He is right. I read so many posts (not on RLS forums) that warn not to ever go down the methadone path. Seems to be the prevailing opinion. I'm early 50's so if RLS progresses won't I eventually max out dosage at some point. I see 25mg is maxiumum dose. My RLS is not as horrific as many that post in this forum. But I suspect that is the path it will go to as it did with everyone else. I do, personally think the DA's are not a good thing with augmentation. Research "states" that no augmentation on Methadone and alludes no tolerance. I don't think that's actually true. Anyhow, have the Liquid Methadone but not sure if I'm going to take it or not. My sleep is not really due to the RLS it's more insomnia due to depression and anxiety about the RLS and all the other health issues I'm dealing with now. Hopeless. My RLS is more bothersome when I'm awake in late afternoon or trying to sit for long periods. And because depression is so bad I have no desire to do anything. Clonazepam at only .5mg gets me about 4 hrs of sleep and calms the RLS just cannot sleep much more than that. I wonder if I really have RLS if the anxiety is making the RLS worse. Go to see 3rd GI specialist in Dec. I'm sure he will be thrilled if I am on methadone at the time, that is if I am able to tolerate it. So I will probably go from daily loose stools or diarrhea to constipation, great now that will really screw up everything too. Anyhow, thank you everyone for your concerns. I may take a break again. Has anyone been on methadone more than 10 years? How about 20 or 30? And does RLS always progress requiring higher dose to work?
PJ, Heaven Bound

pjmccoy1
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Re: Horizant

Post by pjmccoy1 »

Sleep Doc Rx'd 2.4 liquid methadone at night. Being completely paranoid, I only took 1.25mg last night. I woke up every 2 hrs. I was quite restful but couldn't stay asleep. This is increased insomnia than what I already had and I am also taking .5 clonazepam and 25mg of lamictal (for depression not diagnosed with bi-polar) as it seems to be a RLS friendly drug and I'm running out of anti-depressant option. Does everyone experience insomnia on Methadone and does it eventually go away? I was quite relaxed and body rested but not enough sleep. Additionally I believe I may have had some RLS benefit from Lamictal. However, oddly, RLS was very mild yesterday, very mild. Yet today after taking only 1.25mg of methadone daytime RLS is ramping up a little while sitting (mildly). I do accounting/bookkeeping work so, unfortunately, my work requires a lot of time at a computer and sitting. Anyhow, I wish I could take the Bupropion (Wellbutrin) SR 100mg because I KNOW it relieves the depression and RLS but it literally give me all night insomnia. If my psych or sleep doc find out I've been back on the RLS forums they will not be happy as they are convinced it is making my anxiety worse. No disrespect to any of you just my anxiety out of control... Exhausted and running out of option. Praying, praying and praying I don't jump off the roof
PJ, Heaven Bound

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